Massagermommy

HE Is ALL Things ALL The Time!

2011-06-10T13:45:00.002-06:00

God is ALL things all of the time. To lower God to our definition of love is sad.

How great is our God??

Do you really believe that God is only the love we can define? If you want to talk about God you need to talk about ALL of God. God can never be "just" love or "just" wrath, He is always ALL of His attributes (Immutable, Impartial, Infinite, Jealous, Justice, Love, Mercy, Righteous, Self-existent, Self-sufficient, Sovereign, Transcendent, Truth, Wise, Wrath, Eternal, Faithfulness, Foreknows, Good, Holy, Omnipotent, Omnipresent, Omniscient) ALL of the time.

It doesn't seem "right" or "fair" to us that God can be Love and wrath at the same time. If it makes you feel better to think that God is not a God of Justice then you DO NOT want to know ALL of God.

2 Timothy 4:3-"For the time will come when men will not put up with sound doctrine. Instead, to suit their own desires, they will gather around them a great number of teachers to say what their itching ears want to hear."

If you are making God less than He is, so that He fits into your idea of what God should be, then you are the one who is making God into something He is not.

Before and Afters. Because I Said I Would. YIKES!!!

2011-06-04T13:21:00.001-06:00

It all started with a pair of Jeans and wanting to feel better and be healthy again. It amazes me how often we give up on something we really want. Something that is good for us just so we can feel good in the moment. Believe me I know, I have done this my whole life. I'm not sure why now is different, but I am so happy it is :-)

I will never say this is easy, but I will say now, it was totally worth it!

It's kinda funny how things have changed for me. My whole life I have been horribly insecure about my weight with a very distorted view of my my body. I still remember a time in high school where my friend asked me to pick out another girl who I thought was the same size as me and the girl I picked had to be three or four sizes bigger than I really was. I have always thought I was bigger than I really was, then I got married :-) Getting married changed me, no not just in I like to eat more and I was happy (and fat) but I really no longer saw myself that way. I actually went the opposite direction. I would look at myself and think "I don't look that bad". Even though I saw the size I was wearing compared to what I used to wear, I still felt like the smaller size, just didn't look like it.

My husband is amazing and he has loved me, no matter what! He has always tried his best to make me feel beautiful and loved. The problem is we get very distorted views of ourselves based on what others think or say about us and this is so sad. So many of my feelings about myself have changed during this time and I don't think it has anything to do with the weight, it has everything to do with the health. I feel so much better "overall" now and that's what really matters. I feel healthy and strong and that is so much more important than looking thinner.

I pray that I can always keep things in perspective. That I would always use my son as an amazing example. He has a strength and determination I long for. If I ever feel like "I just can do it" I need to just take a look at all he does just to move around and STOP MY COMPLAINING!

He has been my inspiration through it all, he shows me we can all do amazing things if we just stay as determined as the day we started something. That giving up is always a choice but not an option.

March Music. Day 3. Nichole Nordeman - Legacy

2011-03-07T21:48:00.000-07:00

"I want to leave a legacy. How will they remember me? Did I choose to love?"

What is the legacy that you are leaving?

I have found that if I just stop trying so hard things come naturally. You start to live more and love more when you allow yourself to be ok with what you are doing. We need to stop being so hard on ourselves for not doing enough and know that being the best parent, friend or spouse we can be is an amazing place to start. Your legacy will be remembered by more people than you realize.

March Music. Song 2. That's What Faith Can Do.

2011-03-07T21:47:00.000-07:00

This became one of my favorite songs this past year. It helps me through hard times and my favorite line is "I've seen miracles just happen"

“Impossible situations can become possible miracles.” ~Robert H. Schuller

March Music. Song 1. My favorite of all time!!!

2011-03-04T13:15:00.000-07:00

Our family has had a CRAZY month, so I have had a hard time finding the time to sit down and write. I have decided I am going try my best to post a song each day this month. I am going to start with a fun video that just happens to be put to my favorite song of all time. This is just a fun one, most of them will probably be a bit more serious because I am a lyrics girl. Most of the songs I post will be posted not for the music but for what the artist is saying in the song.

Here is a link to a second version. http://www.youtube.com/watch?v=ZYL3j27sSH8

Days 25-27. What My Child Has Taught Me About Myself

2011-02-08T14:44:00.000-07:00

What my child has taught me about myself.

Life is not all about me.

I’m stronger and smarter than I thought.

Being negative gets you nowhere.

I should never give up.

The way I look matters a lot less than who I am.

Being different is not a bad thing. Being just like everyone else is boring.

Becoming a parent is never what you expect it to be.

Being a parent is not just one job.

Responsibility can be overwhelming.

You can't take care of another person well, until you take care of yourself.

I need to draw near to what gives me strength.

What are some of the things your child has taught you about yourself?

Day 21-24. What My Child Has Taught Me About Others

2011-02-08T14:42:00.000-07:00

What my child has taught me about others.

Others need the chance to get to know my child.
They need a chance to adjust to something they don’t know.
They want to be kind, I just need to give them that chance.
They want to be there for me, I just need to tell them how.
Most of the time they are just scared and don’t know what to do.
They want to love my child they just don’t know how.
Others are hurting just as much (or more) than I am.
There are more kind people than negative people.

I am still amazed every day at the kindness and generosity of others.
As parents raising kiddos with special needs it seems like we can get sucked in to negativity so easily. We can get overwhelmed with our to do lists and appointments, as well as all the emotions that seem to bombard us every day. It just seems easier sometimes to be depressed and stay there, to not work to bring ourselves out of the pit.
What I have found lately is you really need to give others a chance. If you give people the opportunity they really will fall in love with your child. You would be amazed at what your child can teach others, if you let them, by just being themselves. "People don't want to be rude. They want to be kind. Give them the opportunity to be kind." ~Joy Blackburn
I have found, for myself it has been much easier on me to think the best of others. To give them the benefit of the doubt. To know, most people don’t mean to be inconsiderate, they don't mean to offend you by their words or behavior, they just don’t know what to do.
As the parent of a child with special needs I have also become a teacher and I need to embrace the opportunity to help others learn.

Thank you Janet for sharing your amazing talent with our family, and showing us the beauty that others can see if you only let them.
If you are interested in having a painting like this done of your child you can email Janet at www.harrold.janet@gmail.com 100% of the proceeds go to her granddaughter Hailey's Conductive Education.

Day 19- Blessed

2011-02-02T13:20:00.000-07:00

I wrote a post the other day about not listening to myself or others tell me that my son can’t do something so why do I still think it’s ok to say the same thing to myself. Why do I still have moments where I say, “I can’t do this”?

It doesn’t matter how bad things are, we all have positives in our lives. It’s hard to remember when we are overwhelmed with life but they really are there. Take some time to write them down and remind yourself of how blessed you are.

“Reflect upon your present blessings of which every man has many - not on your past misfortunes, of which all men have some” ~ Charles Dickens

Here are some of mine (some are serious and some are silly)

Day 18-Don't Tell Me He Can't

2011-01-30T18:24:00.000-07:00

Things like "he wont" and "he can't" are things that we hear way too often as parents of children with special needs. These are also things we convince ourselves of when our children aren't doing things as fast as we think they should.

Just remember to be patient and know that letting go of what you think they should do and when will allow your child to be themselves. Hard work is still important but…

“Failure is not the worst thing in the world. The very worst is not to try.” ~ Anonymous

“Don't judge each day by the harvest you reap, but by the seeds you plant.” ~ Robert Louis Stevenson

I have done this over and over and every time I do Zak proves me wrong! What are some of the ways your kiddos prove you wrong?

Don't tell me he won't roll over...

Don't tell me he won't sit...

Don't tell me he won't talk...

Don't tell me he's not smart...

Don't tell me he can't be potty trained...

Day 17-Is it Ever Enough?

2011-01-30T08:10:00.000-07:00

On day 17 of my diet and I have lost a lot of weight and feel amazingly healthy! At least that’s a good thing; but, Nathan and I had a rough night last night. Lots of emotion came out and here it is…

“I never know what to play with Zak, because he can’t tell me what he wants to do. I don’t know if I spend enough one-on-one time with him. I don’t know if I ‘work’ with him enough. I think Zak thinks I’m boring; Dads always get to be the ‘fun’ ones. I just want to protect him, but I don’t want to keep him from anything because I’m being too protective. I’m so scared about the pain he is going to be in after his hip surgery. Zak is so picky I feel like I don’t feed him enough “nutritious” food. I’m afraid to push him too hard because I might cause him pain. Do I ‘teach’ him enough? Do I help him to really explore the world? …”

WHY, WHY, WHY do we do this to ourselves?

So, I think the thing on my mind today is: as parents do we ever feel like we are doing enough? Do you ever sit back at the end of the day and think, “Wow, I did everything I wanted to do today!”? Is there some magical balance as a parent I just haven’t figured out yet?

All I know, as people in general, we are WAY too hard on ourselves a majority of the time. We really need to stop this and know we do the best we can, in the moment we are in. We are going to have good days and bad days. We are going to have days where we know we could have done more, but those are the moments we need to learn from and move forward. We need to learn to take a step back at the end of the day and really reflect on what we have done. Most of the time, it will end up being a lot more than you thought.

Day 14&15 - No Writing Just Videos of Zak!!

2011-01-27T17:47:00.000-07:00

I'm being lazy for a couple of days on my writing so here are a few cute videos of Zak :) Laughter is good for all of us so our family tries to do it as much as possible. The 3rd video is kind of long but if you watch the whole thing Zak will show you how he says "Luv Momma"!!

"You laugh at me because I am different, but I laugh at you because you are all the same" ~Unknown

"If every word I said could make you laugh, I'd talk forever" ~Tv Show-Full House

"An optimist laughs to forget, a pessimist forgets to laugh" ~Unknown

"Laughter is the shock absorber that eases the blows of life" ~Unknown

I can't get the 3rd video to load so if you would like to see it just follow the link below.

http://www.youtube.com/ncharlan#p/a/u/1/VaRT2b64Zp4

Day 10,11,12&13-Content with Who They Are?

2011-01-25T08:17:00.000-07:00

If, as parents of children with special needs, we sit around and complain about the things that make our lives different from those around us, how will we ever teach our children to be content with the way they are?

This thought has come to my mind a lot lately after realizing I think a lot about how heavy Zak is, how I wish he could walk, how I wish he could at least get himself into sitting, wish he could talk, wish he was potty trained… Really, why do I do this? There is no use for it - NONE.

When I hear others complain about their child it makes me so sad, and yet I do it myself. Our lives may be different, but that’s all it is - different. Everyone has challenges. If Zak could walk then I would have to chase him around everywhere and I would probably complain about that. Zak also fights me to the death to do any of his homework (I know homework in pre-school is silly, but it’s so they can learn responsibility), kind of a scary thing to think about as he gets older. If he’s fighting me now, what is going to happen in the future?!?!

If I want the world to see and respect the good things about my son, then I need to try my best to only see those things. If I want my son to grow up with confidence in who he is no matter what, then I need to show him that I, too, believe in him no matter what. I want to teach him that he is loved unconditionally not only by his parents, but by God, the One who knit him together in my womb, the One who makes no mistakes.

Tomorrow I will write about how are we to do this when we, ourselves, have so many insecurities?

Enjoy the video of Zak doing his homework, for all you homeschooling moms, God Bless You!

Day 9-Zak’s Date Night.

2011-01-22T23:15:00.000-07:00

Day 9

Today has been crazy busy so this will be a short one. Diet is still going really well and we feel great!! I am so excited to actually make this a lifestyle and have a healthy family once again.

Nathan and I got to go on a date the other night and while we were out we got to talking and came up with the idea of date nights for Zak. Our new plan is that Zak gets a mommy date and a daddy date both once a month. It will be a day/evening where we will spend time individually with him doing things that he or we enjoy. It will be a time for him to have fun but also to get to know his parents as individuals. A time for him to learn about what makes his mom the way she is and his dad the way he is. To learn that we all have interests and should care about what makes others "tick" and what makes them smile. A time for him to learn about “guy” time and how to treat a lady.

We are so excited to start this and can’t wait to learn more about our son and allow his personality to flourish. Another added bonus to this will be that during the time one of us is out with Zak the other will get a few hours of alone time to do whatever they want!!!

Day 8-What is in a Voice?

2011-01-21T12:23:00.000-07:00

Language is a remarkably complex system, one we continue to learn throughout our lives. It is also essential to many aspects of learning and socialization. Researchers have identified three broad and different aspects of language:

• Receptive language: How we understand the language of others.

• Expressive language: How we communicate to others through increasingly sophisticated speech and expanded vocabulary.

• Pragmatic language: All the subtle facets of language — facial expressions, body movements, tone, volume, inflection, ideas about when to speak and for how long. These additions are the amplifiers and fine-tuners of communication. They help all of us to better express what we mean, and to understand what others are telling us.

What is in a Voice?

Without a voice to show people your intelligence it seems the first assumption will always be that you are “stupid”; you must have nothing to say; there is nothing going on in “there”. Why do you think this is? I believe it is because speech is something that comes so easy and natural to most people. We don’t have to think about speech; it just becomes second nature.

Something as simple as an accent can cause people to make assumptions about you: to think you are smart, to think you are stupid, to think you are snotty or even think you are ignorant. Our voices have the ability to calm and also to create anxiety and stress. So when a person cannot talk, or struggles to talk, we have a hard time wrapping our minds around the intelligence of that person. When there is damage to one part of the brain, it does not mean that all the other parts don’t work just fine. The person you are assuming is not intelligent wants to tell you that you are the “stupid” one for not seeing past a voice.

If you just take a moment to get to know a person, your mind may be changed. When you meet someone without a “voice”, sit with them and pretend you are sitting with someone that speaks another language. Spend time with them and figure out “their” language. They want to communicate with you; you just have to be open to a different, a new, way to communicate. We all must adapt. If you break your leg you will have to use crutches; if you get injured you may need to be in a wheelchair; if you were wealthy and become poor you will have to adapt to a new lifestyle.

I wish all people could understand that without a voice a person can still make you laugh, make you cry, give you the time of your life, be a brilliant musician, or maybe, just maybe end up being the one who cures cancer, AIDS or even learns how to “fix” damage in the brain.

Day 7-Inspiration sitting right in front of me!

2011-01-19T14:52:00.001-07:00

Day 7

Today is day 7 of my diet and I’ve been feeling a bit disappointed with my losses the past couple days. With the diet I am doing you lose a half a pound to a pound a day. I know it seems kind of crazy, but totally worth it in the end! I’ll get over it, because I know I will start losing again, but doing this has really made me think.

Going through a time like this, where I feel I am working so hard to do something and having days where all my work seems to not matter, makes me think of my son and all the work he does. It makes me think how his entire life he will have to work harder and longer than most other people. And even with all that work, he may not end up reaching his goals - that no matter what he does he can not get his body to do what his brain is telling it to do; and I sit here and complain in my own head about not losing weight as fast as I had hoped.

How many times do we say that our kiddos have changed our lives, and how they made us realize we have nothing to complain about? But in the next moment we are complaining about something that is hard for us, something they may never even be able to try? How does this keep happening? Why do we always come back to ourselves and what we want, what we need, what we think we deserve? Oh yeah, it’s because we are ALL selfish beings no matter how “selfless” we are in some areas of our life - to our core we are selfish. Whether you believe it’s because we all have an instinct to survive and protect ourselves, or if you believe it is because we live in a fallen world, the fact is we always come back to a ME mentality.

I am amazed at all the things my little guy can do. More than many of the doctors thought he would do by his age. Just looking at all his hard work just to do simple everyday tasks inspires me to do more and be more. I have to try my best to stop thinking about how things are hard for me and realize I have an inspiration sitting right in front of me!

It’s pretty cool how just allowing myself to be open for change can send thoughts and inspiration flooding in. How something as simple as a diet to get healthy again has allowed me time to really focus and see what is really important.

Day 6-COOKING! Recipes Please.

2011-01-17T20:36:00.004-07:00

Day 6
Cooking, Cooking, Cooking! It seems like it’s all I’ve been doing the past few days but I’ve been loving it because I know what I’m doing is good for my family and myself. This will be a simple blog day. I have been asked for some of my recipes so here they are. I would love to hear any of your healthy ideas!

Cabbage Curry Soup

2-4 cups of cabbage (I use red cabbage and cut it into strips)
8-12 cups of water (depends on how soupy you want it to be)
4-6 teaspoons of Better Than Bouillon (or 4-6 Bouillon cubes)
3-6 cloves of garlic (crushed)
Curry, season salt, pepper, red pepper, garlic salt, onion powder, basil and tarragon all to taste.

Add Bouillon to water and let begin to boil, add the garlic and spices and let boil while
you cut the cabbage into strips. Add cabbage and let boil for 40-90 minutes. Add all
spices to taste and let boil until the cabbage is the texture you want.
You can also add canned tomatoes to this recipe for a Tomato Cabbage Curry Soup

Tomato Soup

2-4 cans of Fire Roasted tomatoes
2-4 cups of water
1/2 can of tomato paste
4-5 gloves of garlic
Season salt, pepper, red pepper, garlic salt, onion powder, paprika, basil and tarragon
(curry, if you want this added flavor) add all to taste.

Add all ingredients into a large pot and let boil for about 20 minutes then let simmer for
60-90 minutes.

Chili

Ground meat (whatever you prefer)
1-2 Red peppers or onion whichever you prefer (on our diet we can only have one veggie
at once so I pick just one you can use both if you want)
1/2 or full can of tomato paste
water (just used to add if the meat needs more moisture)
spices- season salt, pepper, red pepper, garlic salt, onion powder, paprika and cumin.

Brown meat then add peppers or onion and spices. Cook for 5 minutes or so then add
tomato paste and a little bit of water. Mix and serve. No cheese on our diet but it’s really
good with cheese on top.

Curry Chicken

Chicken
Water
Garlic
Spices- Curry, season salt, pepper, red pepper, garlic salt, onion powder and paprika.

I like to marinate for about an hour 1^st in the same seasoning mixture but you can just add
to cooked meat if you don’t have the time. I put water, garlic and spices in a bowl and let
chicken marinate. Then add meat and half the marinade to a pan and let cook. Serve.

Diet Lemonade

3 lemons
6-8 cups of water
2-3 tbsp. of Stevia

Mix all together!

Strawberry Lemonade Popsicles

Pour lemonade into molds and add mashed up strawberries and let freeze.

Strawberry Smoothie

10 frozen strawberries
2 droppers full of liquid Stevia
1/2 teaspoon of vanilla
1 teaspoon of heavy cream or a spray of whipped cream
1/4 cup of water

Defrost berries 1/2 way then add to magic bullet or blender. Add Stevia, vanilla and
cream and blend. Pour into a bowl and place in freezer for 20 minutes or so.

Day 5-Being Content With Your Body, Is It Possible?

2011-01-17T18:42:00.001-07:00

Is being content with our bodies, no matter where we are at, possible?

This is a funny thought to me because the times in my life when I have been thin have also been the times that I have been the least content with the way I looked. Why do you think this is? I think it has to do with how we feel about ourselves overall. Are we happy in our relationships? Are we proud of ourselves and what we are doing? Do we feel we are being productive? I think all these things factor in when we are looking at ourselves in the mirror.

I was always told that “being skinny is not what will make you happy” but this was something I had a hard time with. I always felt like if I could just feel good about the way I looked I would feel better about the rest of my life/myself.

The past few years have really changed the way I look at things and I have found that this statement is so very true. It doesn’t matter what you look like or what you can or can’t do, those are not the things that will bring happiness or make others like you more.

I think I will always want to feel like I look good and want to be happy and content in my skin but I now know that this is not the thing that matters most. If I want to be happy I need to be happy with myself and who I am as a whole, to know that I need to be an example for my child and be a strong and confident person that doesn’t let my little insecurities or other people ever determine weather I am going to be happy or not.

That no matter what my body looks like or what my body can or can’t do I am loved and I should stand strong as the woman, wife and mother that God wants me to be.

Being Content

2011-01-16T20:56:00.003-07:00

Day 4

How do you feel when you see other families getting the things you feel your family/child needs?

We just got done watching Extreme Home Makeover and it could be so easy to slip into a negative thought process and think about how our family could really use everything the family we just watched got. It could be so easy to feel bitter in situations like these, but I have found that being content with who you are and what you have is the fastest way to happiness. Know that nothing about your life is a mistake and try to figure out what it is you are supposed to be doing in the moment you are in.

“Be content with what you have; rejoice in the way things are. When you realize there is nothing lacking, the whole world belongs to you.” ~Lao Tzu

I have found being happy for and doing things for others is what really brings joy and happiness to your life.

“Only a life lived for others is a life worthwhile.” ~Albert Einstein

More time thinking about others = less time to think about yourself. I do not believe that thinking about yourself is a bad thing; I just think when you are thinking about others it helps you to not focus on the negatives in your life.

“Humility is not thinking less of yourself but thinking of yourself less.” ~C.S. Lewis

Tomorrow I will talk about being content with our bodies. Is this possible?

Motivation!

2011-01-14T21:36:00.000-07:00

Day 3

Motivation!

“Motivation is the driving force which causes us to achieve goals. According to various theories, motivation may be rooted in a basic need to minimize physical pain and maximize pleasure.” (Wikipedia definition)

We all need motivation to do certain things, but should we need extra motivation to be and stay healthy? I’m not sure why, but it seems like we do.

My motivation started out being these silly pair of jeans and they still are…just a little. It really is amazing that in just three days my motivation has shifted from something so superficial to something so much more. In just three days my body and mind have shown me that they needed this and that I had not been taking care of myself.

How often do we forget about ourselves? How often do things like this seem like so much work. They seem to be daunting to even begin to think about - thinking we don't have the time or the energy to even start. But if we don't take care of ourselves, I believe we are being just as selfish as if we spent hours in the gym every day. I believe we need to think about ourselves so we can think about others. As a wife, mother and friend you need to take care of yourself so that you have the strength, energy and motivation to take care of others.

It’s amazing how fast our body, mind and spirit will respond and thank us!

Can a Diet Create Change?? Guess we will see!

2011-01-13T20:36:00.000-07:00

I know I have been really bad about blogging and updates. I have decided I will do something totally different for awhile.

I am going to journal through the next 6 weeks of dieting, exercise and life.

Today is day 2 of a 30 day diet I am doing and tomorrow I will start a new workout! I thought I would be feeling like crap with my body detoxing from all the sugar I have been eating but I really feel good so far.

I thought about posting my before photos but I think I need to wait till I’ve lost a bit before I will show you why I wanted to lose a bit.

I am really excited about doing this diet (again) and getting healthy. Last time I did it I lost a lot of weight and felt wonderful! It’s not just a quick fix diet, I kept my weight off for almost a year. The weight came back when I got pregnant, had a miscarriage, had surgery and all around the holidays.

Stress, Stress, Stress! This is all something I’m sure I will journal about at some point.

I am hoping that during this process I can get all the “junk” out of my body and get some energy, confidence and focus back.

See you back here tomorrow!

Our Story on 9NEWS

2010-11-17T16:02:00.001-07:00

9NEWS in Colorado where we live did a story on our family and Exceptional Family TV, it aired last night :)

Here is a link to watch the video if you are interested

2010-10-25T17:24:00.002-06:00

I wanted to post a quick update from my Vlog last week.
We went back to the doctor today and found out that we will not be having a baby right now. I am now officially waiting to miscarry.
I thank everyone for their kind words and prayers this past week, they really do mean more than you know.
We will hold fast to our faith in God and our family during this time. We will continue to remember all the blessings we have in our life right now.
I was reminded today of a song that has always helped me through hard times.

VLOG-Update

2010-10-21T20:10:00.000-06:00

The story of the Butterfly

2010-09-17T11:26:00.000-06:00

A man found a cocoon of a butterfly.
One day a small opening appeared.
He sat and watched the butterfly for several hours
as it struggled to squeeze its body through the tiny hole.
Then it stopped, as if it couldn't go further.

So the man decided to help the butterfly.
He took a pair of scissors and
snipped off the remaining bits of cocoon.
The butterfly emerged easily but
it had a swollen body and shriveled wings.

The man continued to watch it,
expecting that any minute the wings would enlarge
and expand enough to support the body,
Neither happened!
In fact the butterfly spent the rest of its life
crawling around.
It was never able to fly.

What the man in his kindness
and haste did not understand:
The restricting cocoon and the struggle
required by the butterfly to get through the opening
was a way of forcing the fluid from the body
into the wings so that it would be ready
for flight once that was achieved.

Sometimes struggles are exactly
what we need in our lives.
Going through life with no obstacles would cripple us.
We will not be as strong as we could have been
and we would never fly.

So have a nice day and struggle a little and teach well.

Staying Sane and Feeling Good (TIPS)

2010-09-08T17:56:00.005-06:00

Keep you nails painted. I know this can be hard because polish chips and wears, and you end up looking like a 14 year old girl, but I have found something that works wonders. It is called Shellac http://www.cnd.com/Consumer.aspx

Learn the side swept bun. I do this as least twice a week, when I don’t have time to shower before an appointment or just don’t feel like “getting ready” this is so easy but still cute. Check out directions on how to do this on a friend of mines site http://saraduffeyartistry.com/beautycentral.aspx

Dress nice at least once a week. Even if it is just to take your child to a therapy appointment, looking cute always makes me feel confident, and I just feel happier.

Wear perfume. If you or your child can’t handle the smells, find a really gentle mist. Just smell good! I found a perfume I love that is really light, most people think its my soap. I FREAKED OUT when I found out they discontinued it. Thank goodness we have Ebay!

Get a pair of shape-ups. They may not be the cutest shoe but they sure do keep a mom’s back, hips, knees from hurting. I love my new pair. I wear my really long jeans with them so you can’t even tell and even if you could they are totally worth it.

Read books. Find something that interests you, even if you can only read 5 or 10 pages a day. It is fun to get wrapped up in something that is outside of your world for a while.

Workout. Even if you can only take a 10 minute walk, try to do it everyday. I have found I cope with life in general so much better when I am working out on a regular basis. I like to lift weights because it builds muscle and that helps out with having to carry Zach so much.

Try to get at least 2 massages a year. I am really bad at this but I recommend it to myself all the time. Every time I get a massage I say “I am going to get one once a month from now on” ... that doesn’t end up happening, but it would be wonderful if it did.

Burn natural soy candles. I like to burn them all over the house, but if that’s too much, get at least one for your bedroom. It is so nice to have your house smell yummy. Smell is our strongest sense tied to memory. (I still hate the smell of the soap they have at Children’s Hospital).

Have adult conversation. At least once a day, even if you have to call someone or chat online. I thank God for the internet for the times Nathan is out of town for work.

Hang out with friends. At least once a month, even if they have to come over after your kiddos are asleep. If we can’t find a babysitter we have friends come to our house so that Zach can still go to bed and we can keep hanging out.

Have a glass of wine. If you don’t like wine, drink something (even juice) from a wine glass! It just makes you feel good, not drinking from a kiddie cup. A friend of mine got me a handmade wine glass for my 30th Bday!

Get your Vitamin D. When the weather is nice, sit in the sun for 10-15 mins a day. When it starts to get too cold outside, I like to sit on the floor by my sliding glass door and feel the warmth from the sun.

Jeans. Own one pair of jeans you think look AMAZING on you!

Take a nap. Even if its only 10-15 mins it will help if you are struggling through the day.

Be healthy but cheat. As a general rule with food, be healthy, but take one day a week or one thing a day that you eat because you love it.

Laugh. As much as you can laugh with those in your life. Laughing burns calories and makes you feel happy.

"The days are long, but the years are short." Always remember if you are having a bad day that everything passes and you will look back and wonder how it all went by so fast.

My 30th-Best Yet. We are all created to be different.

2010-08-31T13:12:00.000-06:00

In our house we like to call it your birthday weekend, where you get to have a whole weekend to celebrate your birthday.

My 30th birthday weekend started like this, Saturday morning I got to sleep in and when I got up and came downstairs there were flower and gifts waiting for me. From there Nathan, Zachary and I went to Zach’s friends bday party. We stayed there for about an hour then I got dropped off at a spa to have a manicure and pedicure, which was wonderful by the way. I was picked up from there and brought home to pick up my gift cards to go shopping for as long as I wanted! After shopping for a few hours I came home and we got ready to leave for our close friends annual Jimmy Buffett party. It was a full day and I loved it.

Sunday Nathan arranged for me to go with my best friend, to look at her wedding photos (she just got married this summer), I knew I needed to be back by 2:45pm or so to get to my parents house by 3pm to have dinner and cake to celebrate mine and my brothers birthdays as a family. When I got home around 2:45 it all made sense why Nathan had been acting so strange and my house was so clean this weekend, my house was filled with all my family and friends!!!

Nathan didn’t miss a thing and with help from my family and friends every detail was covered. There was my favorite food; burritos and they called them REN-I-TOS. Chocolate Martinis, called CHOC-NAY-TINIS. My favorite wines that he made labels for and called REN-EE-SLING. Chips and salsa from Chili’s. Snack-mix, and the most AMAZING cake ever made by my friend Jess.

There were poster boards filled with pictures of me and timelines about what happened the year I was born. People took a quiz about me, wrote funny memories of me and made silly comments about pictures of me. Nathan also created a “mixed tape”/play-list for my iPod, it was 2 of the top songs every year from 1980-now. It was so much fun to hear the evolution of music. Nathan also arranged for everyone to get me the gifts I really wanted!!! I absolutely loved my weekend it was amazing and I could not have planned it better.

This weekend really did open my eyes to so much. I got to see how loved I am, first by my husband, then my family, and all of my friends. One of the things that jumped out at me about my party was, as I have gotten older I have come to realize that a small quality group of friends means so much more than being popular. I may have not had 100’s of people at my party but all the people that mean something to me (and could make it) where there and that means more to me than any large number of people could.

I also learned that we all see our journey through life differently. One of the things Nathan had people do was write down memories about me, they then read them out loud to me. It was interesting to see how people saw me and what memories stuck with them. I couldn’t even remember some of the things people wrote about me, which opened my eyes to how differently we all see life.

We were all created to be uniquely different in so many ways; none of us are the same. The world may look at our kiddos and see something visibly different but they really are no different than you or I. Just because people may look, move, sound or act like each other doesn’t mean they are, we were all made to bring praise, glory and honor to God in a way that the person next to us never could. We need to remember and know this to be true about our children weather or not they can walk, talk or feed themselves. Our children bring praise, glory, honor and joy to others and to God in ways we will never fully understand.

Extreme Home Makeover...for EVERYONE!!!

2010-08-15T19:51:00.004-06:00

There are so many overwhelming things when you are raising a child with special needs, the actual weight of Zach is one of my biggest concerns.

We bought our house a year after getting married when we thought it would just be us for awhile and we thought it would be perfect for a small family when we decided to start one. A month later I found out I was pregnant. We thought this little house would be perfect; it had 3 bedrooms, plenty of room for lots of toys and a big yard for our coming little one to run around.

It all seemed perfect. We got a great deal on the house (or so we thought before falling house prices the last few years) and we were now ready and starting our family, but life can flip on you in a moment. I now see my house as a burden. I see it as an obstacle for Zach. Our little house and all its levels makes for small spaces for Zach to move around and explore. He has to be carried from floor to floor, and each floor is a small space so moving things around like walkers and wheelchairs just isn’t effective.

I pray he will one day walk and be able to get up and down stairs, but for now he continues to get bigger and our house is not losing any of its 38 stairs (20 inside, 18 outside) to maneuver in/out and around our house.

It’s pretty amazing how life works. The way you think you are making plans for the future, and God decides He has a different way, a better way, a way you may never understand.

You start to realize how even the things you never thought about before, like stairs, can make every thing ten times harder. How liking your neighbors just doesn’t matter when your child only has one small room they can get around in your home. How having a big yard doesn’t matter when your child can’t run in it. How you never thought God would need to work on your character in this way. How you didn’t realize you needed to be ready for change in every area of your life. Even the small things that didn’t seem to matter before, like the floor plan of a house, will need to change.

It seems so simple. It’s just a house, but what are we supposed to do now? What is best for our family? How will we afford to change it? Life comes up with so many questions, some of them easy and some of them hard. Whatever life throws at you it’s up to you to make the best of it. I have figured out how to make the best of this one…Extreme Home Makeover, for everyone!!!

Nathan's (part 1) blog about our trip to Palo Alto, CA to discuss Infantile Spasms/West Syndrome

2010-08-06T11:23:00.001-06:00

Renee and I were invited to participate in a parent advisory board/panel on Infantile Spasms (IS). It is a rare disease and according to InfantileSpasmsInfo.Org it’s “an uncommon epilepsy syndrome that typically begins in infancy. Also known as West syndrome, it was first characterized by Dr. William James West in the mid-19th century as he sought help for his own affected child. Infantile spasms is considered to be a “catastrophic childhood epilepsy” due to the difficulty in controlling its symptoms and the developmental problems that can occur as a result of IS. Infantile Spasms typically begins in the first 4 to 8 months of life and is characterized by flexion (bending and jerking) of the trunk (torso) or neck and extremities (arms and legs). An episode can range from a subtle head jerk to a flexion that lasts for a few seconds. Most often, the spasms occur in clusters.”

The Parent Advisory Board Meeting was organized and funded by Questcor Pharmaceuticals, the makers of Acthar gel (ACTH), which has been considered the “gold standard” of treatment in the child neurology community since the 1950s. I clearly remember Zachary’s neurologist and the head of the neurology department at Children’s Hospital Denver telling me personally about the “gold standard” treatment consideration for ACTH when Zachary was in the hospital for his seizures.

The discussion and parental input focused on several issues - raising awareness for Infantile Spasms, considered a Rare Disease; creating a community for those who have a child with IS or are considered IS “graduates”, those whom medication helped stop the IS; spreading education and information about IS to parents, pediatricians, and child neurologists; giving back to the IS community; and discussing creative efforts surrounding Infantile Spasms Awareness Week in October.

The panel took place over the weekend of July 31 and August 1 in Palo Alto, CA. There were a total of eight families in attendance. The first evening, we all went out to a dinner to have a casual “meet & greet” experience. Family friends (and fellow Coloradoans) Matt and Tamara Cochran (Episode 10 & Episode 11) were in attendance as well as Chris and Megan Daniel who we met at the FDA hearing.

On Sunday, the formal panel took place, opening up with each family sharing their particular story and journey with Infantile Spasms. It was very interesting to hear each family’s story as each shared a common tale of what they experienced with IS exhibiting itself in their child – a quick spastic movement, bobbing of the head, jerk of the arms/legs, body moving in jack-knife fashion – and these movements happening in succession for a time, called clusters in the IS community.

What surprised me was the vast difference in outcome with the families who had success with IS medication stopping the seizures. Several families’ children developed normally and would be considered “typical” on all levels of development today. Others had underlining conditions such as cerebral palsy (like Zachary), or other brain issues.

Although IS was first medically chronicled in the 1800s, there still is very little information on it. As a rare disease, it affects about 1 out of every 3,200-3,500 children.

On average (45 out of 50 children affected) spasms appear for the first time between three-months to a year-old. According to the InfantileSpasmsInfo.org website, about 70% of IS cases are caused or linked by something to do with the Central Nervous System, brain development abnormalities, or genetic abnormalities.

For Zachary, the underlining cause was the severe brain damage (cerebral palsy) that occurred around his difficult birth.

But in 30% of cases, there is no known cause, and these children have the greatest odds of living a developmentally normal life.

Regardless of the cause, once diagnosed with IS, the goal of any neurologist is to get the seizures stopped as soon as possible. With each “cluster” of seizures, the child is experiencing some additional damage to their brain.

Our personal journey with IS, brought us to a neurologist who was very good and very professional in his care of Zachary. The neurologist wanted to take an aggressive approach to get them stopped immediately, but also be safe in medicating our child. We started on a three-week stint of Vigabatrin/Sabril (recently approved by FDA, but at the time Zach took it, 2007, it had to be purchased through Canada). This did nothing for his seizures. Our neurologist advised us of the “gold standard” for IS treatment, an injectable hormone called ACTH or Acthar gel, as labeled by Questcor Pharmaceuticals. We were advised of the side affects – significant weight gain, possible elevated blood pressure, and I think they told us diabetes too, but our neurologist assured us Zachary would be strictly monitored during treatment to make sure he would be safe.

It was a daily, one-shot injection. After the sixth one, Zachary’s seizures stopped completely. That was Nov. 6, 2007. To this day, he remains seizure free.

After the family stories, the panel switched gears to discuss the history of Questcor as a company, their commitment to the IS community in raising awareness, and ideas for Infantile Spasms Awareness week coming October 11-17, 2010, and for future years.

…to be continued…

SEARCHING

2010-08-03T19:38:00.000-06:00

I have been searching for a way,
A way to have a voice.
A way to be a voice;
A way to hear his voice.

I have been searching for a way to figure out what it is I am feeling.
To figure out if I am happy, if I am sad or if I just am.

I have been searching for a way to be the woman I want to be,
The wife I know I can be,
To be the mom he deserves me to be.

I have been searching for a way to be a friend again,
One who laughs and loves with all her heart.

I have been searching for a way to know myself better,
To love who I am and to learn from my past.

I have been searching for people who know and understand things I go through everyday,
people who understand the loss of dreams, yet always search for hope.

I have found hope.

I have found it through the people who open their lives to us,
Through the families who have become the voice for their children.

I have found it through the strength I see in mothers who never leave their child’s side; Through the friends who are always there no matter what you’re going through.

Through the people who have experienced tragedy and have come out on the other side filled with hope and love.

I have found hope through all of you,
And I thank you so much for the love and support everyday.

Vlog-Zachary's Lying

2010-08-02T12:53:00.000-06:00

So I did my 1st Vlog. It's about Zachary and even though he is functionally non-verbal at this point, he can still lie to me.

Check it out at http://www.exceptionalfamilytv.com/blogs/producers/nathan/renees-vlog-zacharys-non-verbal-lying

Excuses

2010-07-14T14:11:00.001-06:00

I don’t know what to do with him?
I am just so tired.
He works so hard all the time, I just want to give him a break.
My back hurts from carrying him.
He can’t just go run and play so I have to do everything with him.

These are just a few of the excuses that run through my mind when I know I should be working with or playing with Zach but I’m not.

I struggle all the time with guilt. So the other night when Nathan brought up that he noticed I wasn’t working with Zach like I used to, it hit me like a Mack truck. It is really hard to hear things from other people that you know you should be doing in the first place. I knew that I had not been spending as much time as I used to with Zach, that I had just become complacent and lazy.

Having children can be a tough job already, but when you have a child who you want to let run around and play at the park and they can’t, it can be even harder. You have to do EVERYTHING with them. I have to play in the sand, go down the slide, sit on the swing and run around while holding him if I want him to enjoy what going to the park is supposed to offer.

I am selfish; I know this, but having to do all the activities a 3-year-old likes to do at almost 30-years-old is exhausting. When I get tired or overwhelmed I start to complain or I just shut down. I think this is what Nathan was talking about when he brought it up, I had just shut down. I had gotten so tired and overwhelmed with just the idea of what it takes to play with my little man that I had stopped paying attention. I just stopped trying. I still spent time with Zach and was always around, but I was not interacting the way I should. I was not helping him to learn and be the 3-year-old I know he is capable of being.

Even if being reminded of something is painful sometimes it is just necessary to allow you to wake up and change your behavior. I know that I will have many times in my life where I will need to be reminded again and it will be just as painful but I am grateful that I have a husband I know only wants me to be the best women, wife and mommy I can be.

Who is Really in Control

2010-06-23T20:13:00.000-06:00

It still amazes me how two people who are so different can get married and really make it work the way Nathan and I have.

Nathan LOVES being outdoors and being active. I LOVE just hanging out indoors and doing nothing.

This past week we went on an 8-day vacation (thanks to Nathan’s parents) in Estes Park, CO. We hiked, shopped, tasted wine, ate yummy food, fished, hiked some more, shopped some more, drove through Rocky Mountain National Park and had a little bit of time to just hang out.

Something about me (everyone who knows me is aware of this) is that I have a very abnormal FEAR, FEAR, FEAR of bears and mountain lions. This makes hiking or camping in the woods very difficult, if not impossible with me. Nathan and I have been married for over 5 years and together for over 6 and we have never been camping together, something Nathan LOVES to do.

I am amazed at how God works on me every chance He gets and shows me that He is in control, not me. When I am forced out of my comfort zone, He always shows me that I can trust Him because He is in control.

I prayed for days, if not weeks, before the trip that I would feel a peace and not have fear while we were there. I was blown away there was not one moment of overwhelming fear. I will not say I did not have moments of worry, but I never had a panic moment that I was expecting to have.

This made me think about our life in general - no matter what happens or where I am, I am not the one in control. I feel so blessed to have reached a point where I do feel a peace in most areas of my life. I would have NEVER thought after getting Zach’s diagnosis that this was possible. I never thought I would be able to say having a child with special needs really has been a blessing in ways hard to put into words.

I would never wish the struggle Zach will have in his life on anyone but then again who am I to say that his or our struggle is any more than the girl who has a hard time making friends, or the single person who feels lonely everyday, or the child with cancer who is cured after 2 years of treatment never to look back, or the widow who feels sad every time she sits down for dinner with no one to talk to, or the teen who started doing drugs to be cool and now can’t stop. Who am I to say that God did not ALWAYS know exactly what Zach’s brain would look like and every struggle that his body would have to move in a “typical” way.

As hard as life can be I have no doubt in my mind that where I am at any given moment is where I am supposed to be, hard or easy, happy or sad. My worries for Zach and what our life will look like in the future will always be there, but I am reminded at every turn that there is always a light at the end of the tunnel or a positive that will come from a negative, even if we don’t want to see it in the moment, it will come.

Knowing good can come from any situation has nothing to do with understanding why. I believe it comes from trust that Someone knows much better than I do what is good for me in the long run. We are all here to help each other. this life is not about us; it is about showing a love everyone longs for.

Blue Rose (fwd)

2010-06-23T07:59:00.001-06:00

I got this as an email forward and thought some might enjoy it. I am still blown away at times the way people express themselves through writing.

Blue Rose

Having four visiting family members, the wife was very busy, so I
offered to go to the store for her to get some needed items, which included
light bulbs, paper towels, trash bags, detergent, and Clorox. So off I
went.

I scurried around the store, gathered up my goodies, and headed for
the checkout counter, only to be blocked in the narrow aisle by a young man
who appeared to be about sixteen-years-old. I wasn't in a hurry, so I
patiently waited for the boy to realize that I was there. This was when he
waved his hands excitedly in the air and declared in a loud voice, "Mommy,
I'm over here."

It was obvious now, he was mentally challenged, and also startled as
he turned and saw me standing so close to him, waiting to squeeze by. His
eyes widened and surprise exploded on his face as I said, "Hey Buddy, what's
your name?"

"My name is Denny and I'm shopping with my mother," he responded
proudly. "Wow," I said, "that's a cool name; I wish my name was Denny, but
my name is Steve."

"Steve, like Stevarino?" he asked.

"Yes," I answered. "How old are you Denny?"

"How old am I now, Mommy?" he asked his mother as she slowly came over
from the next aisle.. "You're fifteen-years-old Denny; now be a good boy
and let the man pass by."

I acknowledged her and continued to talk to Denny for several more
minutes about summer, bicycles, and school. I watched his brown eyes dance
with excitement because he was the center of someone's attention. He then
abruptly turned and headed toward the toy section.

Denny's mom had a puzzled look on her face and thanked me for taking
the time to talk with her son. She told me that most people wouldn't even
look at him, much less talk to him. I told her that it was my pleasure and
then I said something I have no idea where it came from, other than by the
prompting of the Holy Spirit.

I told her that there are plenty of red, yellow, and pink roses in
God's Garden; however, "Blue Roses" are very rare and should be appreciated
for their beauty and distinctiveness. You see, Denny is a Blue Rose and if
someone doesn't stop and smell that rose with their heart and touch that
rose with their kindness, then they've missed a blessing from God.

She was silent for a second, then with a tear in her eye she asked,
"Who are you?"

Without thinking I said, "Oh, I'm probably just a dandelion but I sure
love living in God's garden."

She reached out, squeezed my hand, and said, "God bless you!" and then
I had tears in my eyes.

May I suggest that the next time you see a BLUE ROSE, don't turn your
head and walk off. Take the time to smile and say Hello. Why? Because, by
the grace of GOD, this mother or father could be you. This could be your
child, grandchild, niece, or nephew. What a difference a moment can mean to
that person or their family.

From an old dandelion!

Live simply. Love generously. Care deeply. Speak kindly. Leave the
rest to God.

"People will forget what you said, People will forget what you did,
but people will never forget how you made them feel."

To Have Another Baby or Not Have Another Baby? That is the Question.

2010-06-01T23:27:00.000-06:00

Besides how and where to spend money (like most couples), Nathan and I have the biggest differing opinions on having another baby.

I am so amazed at all the women I know who have or want more than one child. I must just be too selfish. I love the “idea” of a sibling for Zach, but if I think about it for more than a few minutes it scares the beegebees out of me. For me it is all about what it takes to have another baby - the sickness, the weight gain, the surgery, having two kids that don’t always sleep through the night, having two kids that can’t talk, having two kids that can’t walk, the unknown, THE FEAR.

I have said so many times that I am willing to try one more time, first because my husband wants another child more than anything and second because a sibling really is a good thing for Zach.

The biggest issue I have is WHEN? Every time I think I am ready and willing I end up changing my mind. I am still trying to figure out what it is keeping me from being “ready.”

When I look at families with more than one child, I get so overwhelmed at the idea. But when I look at families with just one, I think it is sad for the child to not have a sibling to play with. I just don’t know; it seems to me like I am just not happy either way.

So many people ask me if it’s because I am scared I could have another child with special needs? I really don’t think it is. I’m sure the fear is there, but it is not really something I think about. It’s more that I think about how different it will be to have a typical child. To have a child I have to run after, a child asking endless questions, a child who exhausts me physically, a child who is just like I thought I wanted, but now I don’t have a clue what to do with.

Will I have enough time to work with Zach like he needs? Will my other child feel left out because we are always doing things for Zach?

I really do believe God knows better than I do what is good for me, but the selfish part of me is having a really hard time letting go and letting Him be in control right now. I want to allow Him to lead me and show me what is best, but my fears always end up getting in my way. I have allowed my fears to control me for most of my life and I think it’s about time for me to let go and think about positives and not think about the fear.

Our life...Anything but typical

2010-05-21T08:25:00.000-06:00

We sure are on an interesting ride. Our life has been crazy the past couple of months but a really good kind of crazy. I never thought my life could or would look like it does right now, and it all started with a little boy who has made our life anything but “typical”.

I thank and praise God for the opportunities we have been given to help others and to make more out of a situation that seemed so horrible when we were first put into it.

A couple weeks ago, Nathan and I got the chance to go to Washington, D.C. to testify and give our story before the FDA Advisory Committee. We went to tell the story of when Zach had Infantile Spasms and we used the drug Acthar Gel and it worked for him.

We had a great time while we were there for a whole 27 hours. The night we got there we got a chance to go see my cousins who have lived there for a few years. We went out do dinner, visited and had a great time.

The next morning we got up and went to the meeting. The most interesting part was I actually understood most of what was being said by smart physicians. After going through something like this with your child you know things you never thought you were smart enough to learn.

A SPECIAL MOTHER - By Erma Bombeck

2010-05-17T13:01:00.000-06:00

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children.

Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect -she has just enough selfishness."

The angel gasps - "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it! I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

My Mothers Day

2010-05-09T08:59:00.001-06:00

Dear mama,

I asked dada to write a poem for you about how I feel, well at least how daddy sees how I feel, about you, my mama. Happy Mother’s Day!! Love, Zachary

I love the way you dress me up

I love the way you massage my butt

I love that you let me eat

Tasty Pop Tarts, my favorite treat

I love you in the morning time,

I love you when the sun don’t shine.

You, mom, are my place real safe

You help me put my toys in place.

Though I cringe when you comb my hair,

I love that you do truly care.

Even when I cannot explain

You wipe my tears without complain.

You help me work to learn to walk

You help me work to learn to talk.

You sit me down and read me books

You laugh at me when I give you “looks”.

Your love for me is beyond compare

Do other kids’ moms have your flair?

I love the way you teach me the world,

I love it when your hair is curled.

I love to play with your hair so long,

It helps my fingers become so strong.

I love it when you hold me tight

I’m sorry that I sometimes bite.

I love it when songs you sing

I love it when you push my swing.

I love you mama, yes it’s true

Happy Mother’s Day to you!

----

You, Renee, are a true exceptional mother. From the very beginning, you have taken to your roll as mom quicker and better than I’ve seen others. Even though you’ve admitted to me that the first few months were hard bonding times, you latched on nonetheless and took care of your baby boy for every need or want he had.

It’s been three years since I first witnessed the mother in you blossom. You are absolutely incredible. It brings tears to my eyes and a bright smile on my face to see you love on our Zachary.

The way you communicate with him and know exactly what he’s saying or what he wants. The way you play with him and tickle his belly. The way you explain to him what’s going on for the day, in the world, the workings of everyday life (even when you thought it would be impossible for you to do so). The way you let go and let him be a kid even when part of you is saying to do therapy every day all day.

You are the reason Zachary will be so well adjusted and functioning in life. You get him dressed with sweet song and kisses of love. You get him ready for school and ready for therapy. You take care of Zachary beyond measure.

I love seeing you interact with him and know, you just know, his favorite things to eat/do/play/watch, even though he has a difficult time communicating directly with us. Your compassion for him is so incredible, every mom in the world should use it as an example. You are his comfort; his source of security; the warm, soft, open arms he can always go to. With his gentle repetition of “ma-ma”, everyone knows he needs you; needs to know you’re nearby.

You continue to amaze me each and every day as you grow, blossoming more and more, as a mother. It is an honor to me that you are the mother of our child, our exceptional child. You are the positive force of light when things are tough. I appreciate all you do, and know Zachary does wholeheartedly as well.

On this Mother’s Day, we both wish you the best, desire you to know how much we care, love, appreciate, thank you, need, and are blessed to have you in our lives!

Happy Mother’s Day to the best Ma-Ma in the whole wide world!

Feeling Blessed

2010-05-02T22:48:00.000-06:00

I feel so blessed to get to be a part of www.ExceptionalFamilyTV.com. I don’t know how to express my gratitude to all of those involved so that they can truly understand how I feel.

Thank you Nathan for your amazing commitment to our family and willingness to work tirelessly to allow Zach to have his best life possible.
Susan for your amazing vision, hard work, persistence and always wanting the best for our family along with yours.
Warm Springs Productions for seeing potential in an idea we hope will help so many others. Your willingness to provide your amazing talent and resources.
Bridgeworks Creative for also seeing potential in an idea. For your long hours and hard work to allow what we are doing to reach so many.
Exceptional Parent Magazine for being a strong support system in unknown territory.
Exceptional Families for your willingness to participate and tell your story to people you had not even met. Your kindness and friendships mean more than you know.
Exceptional Kiddos you really are the inspiration for all of this, without your strength and determination we wouldn’t be here. As your parents we will never be able to teach you all that you have taught us.

We just spent 9 days in Tennessee for production on episodes for www.ExceptionalFamilyTV.com, and it was a week of new friends, memories and opportunities.

In such a short time I have had the opportunity to meet people who I now consider to be friends. Even though we will not get to see each other often, I believe our friendships will continue to grow over time and cyberspace. I hope and pray we are building a support system that will just continue to grow so no parent or caregiver will feel alone in this journey; so no family member or friend will have to wonder, “how can I be there for the ones I care about so much?”

I thank God every day that Zachary and I are able to travel with Nathan and the production team so that we can meet each and every one of the exceptional families. It really is amazing the way things always work out the way they are supposed to, that there is always a bigger plan.

I have been so nervous for the past three years about having another baby but I now feel this has all been for a reason. (I will talk more about this in a blog post soon) If we had two small children there would be no way we could travel and be a part of everything that has brought so much joy and purpose to my life.

I am again reminded God’s timing is ALWAYS better than mine, even when I don’t understand it.

Pop Tarts for Dinner

2010-04-22T09:55:00.000-06:00

Nathan made a comment tonight, "Zach looks good; his vitals are good; he's healthy, strong, and smart. Why do we worry if he wants a Pop Tart for dinner?"

This is a great question if you ask me. We spend so much time worrying about how our kids act, what our kids eat, what our kids watch and even how are kids fall asleep. Why? Why are we worrying so much about the things we think make them "normal"? Why don't we just enjoy them, let them be kids, let them enjoy life?

As much as the next kiddo they just want to be a kid. They want to play all day even if it's just on the floor with their piano and guitar. They want to eat Pop Tarts for dinner. They want to watch the same three episodes of a show 10 times in a row. They want to go down the slide (even if it is laying on their back) a 1,000 times. And sometimes they just want to cuddle with Mom and Dad until they fall asleep.

I know, I know it is very important to have discipline and structure for our kiddos, but there are some days that I just want to let Zach be a kid. I get tired of taking him from therapy to therapy, making him have to do everything on his own when it is so hard for him; making healthy food because just maybe that veggie (that he hates by the way) will help him focus somehow. If I get tired doing these things for and with him I can only imagine, as a child, how tired of it he gets.

I can't take Zach to the park or the pool or even our backyard and just let him run around and get all his kid energy out (Nathan likes to call it boy aggression). He has to work hard at every single task he preforms and that has to get exhausting. Just imagine everything you did in life took the energy of a full-on weight-lifting workout.

I love my little guy and I never want to do things that would cause him to not be his own person or to not be able to do things on his own. This being said, we will work, work, work to teach him the things he needs to learn for life but I wholeheartedly believe part of being a kid is doing what you want sometimes and throwing a fit if you don't get to.

So tonight, we are having Pop Tarts for dinner!!!

Its Time for School

2010-04-15T13:28:00.002-06:00

And Zach surprises me again, HE DID AWESOME!!!! I don't know what I was so worried about, I guess the separation issues don't matter when he is doing something fun.

I know so many parents have a really emotional time with sending their kiddos to school for the 1st time but I am so excited for Zach to get to do something new and fun, it is about time that he get some time with other kiddos. I am just bursting at the seams with how excited I am right now!!!!!!!!!

5 years

2010-04-14T18:23:00.000-06:00

Our 5 year wedding anniversary is the 16th (day after tax day) but Nathan is traveling for work so we celebrated last weekend with 2 days and a night away together. We only went 10 mins from home but it is one of our favorite hotels with tons of stuff to do in the area. We had a great time together getting, massages, going in the hot tub and steam room, seeing a movie, eating yummy food and getting wedding ring tattoos.

It's kind of funny how I react to time away from Zach, all I think about some days is having time away with Nathan or even just by myself but when I get it, it feels so strange. I feel like something is missing when I am away from him and can't wait to see him again.

With this said I think it is really important to move past these feelings and spend time with your spouse, alone. Even spending time just taking care of yourself can be so important.

There is so much emotional stress that comes with raising a child with special needs and if you do not WORK on your relationship it will not make it through. We get so lost in the things that need to get done on a daily basis that with out time together we would just lose each other. In my opinion we do not get enough alone time but it makes when we do that much better!!!

How do you go about getting time alone? Who watches the kids? How much time away is "enough" time?

ITS US ON THE COVER!!!!

2010-04-01T20:38:00.001-06:00

This really is us on the cover of Exceptional Parent Magazine!!!! You can subscribe to the magazine at http://www.eparentdigital.com/nxtbooks/exceptionalparent/201004/#/0

Preview

2010-04-01T20:08:00.000-06:00

Our teaser/preview for Exceptional Family TV is officially out, check it out at the link below.

We are SO excited!!!

http://www.exceptionalfamilytv.com/video

My Quote for the week

2010-03-21T08:54:00.002-06:00

Humility is not thinking less of yourself, it is thinking of yourself less.

Lord help me to be more humble.

Why can't we all get along

2010-03-20T23:28:00.001-06:00

I think it is so important for us to be there for each other. We need to be supportive and positive.

Only other parents who have experienced having a child who is not "typical" can understand how it feels. Only we can understand how it feels to hear a diagnosis that breaks your heart. Only we can know how it feels to watch our kids try so hard to do things that come so easy to everyone else. Only we know the pressure that comes with trying to make the right choices for our children who do not have voices for themselves.

So why, with all of this, do we have to be so hard on the only people who really understand what we are going through? Why is the divorce rate so high among families with a child with special needs? Why, when we meet other families going through similar things, do we start to compare? Why do people judge what we think is best for our children? Why can't we just open up about our fears and frustrations and not be judged? Why can't we ask for advice without being bombarded with negativity? Why?

I believe there is one solution for all of these questions - to be positive and supportive. I think some simple advice is fine and much needed sometimes, but once advice is given, we need to leave parents to make the choice that is best for their child and their family.

There is no need to keep pushing them; you have said what you felt led to say. Now it is up to them. Support is what we all need. We face enough negatives everyday from so many different sources that with each other we need to just be there.

No more of the "I'm right and you are wrong" attitudes. No "my treatment is better than your treatment", or "why would you do that? You're crazy!" No "why wouldn't you do this?!"

Just be there for each other, just be a good friend. I think we need to stand strong as parents and as a community, we need to be there for each other and encourage one another. The internet really is an amazing thing, you can make good friends and create a strong support system, even if you don't get to see them face to face very often.

Know that for every negative thing you experience there are twice as many positives waiting for you, you just have to be looking for them.

The Things That I Love.

2010-03-16T23:01:00.001-06:00

The Things That I Love...

God/Bible- The one and only reason that I have true joy in my life.

Nathan- You are my best friend, husband, supporter, wonderful father and amazing man of God.

Zach- You are my little boy who forever changed who I am. Your strength will encourage me all the days of my life.

Mom&Dad- Thank you for putting up with me for so many years so that I could become the woman I am today.

Brothers- I love you guys more than you know. Gary, I love that you have always been your own person no matter what, and have a bigger heart than you let most see. Brian, you have become an amazing man of God, stay strong in the Lord.

Gma- you are my inspiration in so many ways.

Aunt Kathy- You have the biggest heart of anyone I know and always make me smile.
James/Joe- Oh my goodness I have no words, you guys make me laugh more than anyone I have ever known. I miss you like crazy and wish I could see you more often.

Clark, Ramona, Jessie, Josh&Abby- I love you guys so much. Clark and Mona, I wish you knew how much I look up to you and your marriage. Jessie, you are beautiful, kind and smarter than you know. Josh, you really are an amazing man and I pray that you continue to grow in the Lord. Abby, you are beautiful and such an amazing writer, keep it up girl.

Len&JoAnn- Thank you so much for raising such an amazing man. Also, for all you have done for us and our family, I am really enjoying getting to know you better.

Nick&Pamala- I wish we lived closer so that I could get to know you better. I have enjoyed our conversations and thank you for always being kind and excepting of me.

Teresa- The one friend who has ALWAYS been there no matter what, I love and respect the woman you are in so many ways, I am so proud of where you are at right now.

Friends- I am so grateful to my friends who have stuck around even through the tough times.

Cadbury Eggs- It is a really good thing you only come around one time a year or I would never be able to lose weight.

Hoodies when I feel fat- It will be hard to part with you pink CU hoodie as you are beginning to fall apart, but I have loved you so much all the days I just wanted to cover up and be warm.

Working out- I hate you while I am with you but you always make me feel so much better in the end.

Wine- I never knew I could like you so much, but thanks to Nathan and JoAnn I have come to enjoy our moments together.

Movies- I remember when I used to get to spend so much time with you, oh how I miss those days. Having a child does not allow for many movie outings.

TV- I know you are bad for me but I do still love you so.

Aventura Spa Palace- 1st place I ever went out of the country and now I am completley spoiled. Thank you Len and JoAnn!!!

The Ocean- The beauty and calmness (yet I have such a fear) of the ocean is something that is hard for me to explain. It is just amazing how God shows himself in all things.

What are some of the things that you love?? Serious or Silly, I would love to know.

Information about Conductive Education (Conductive Upbringing)

2010-03-15T10:05:00.000-06:00

Ok, I know this is long but has been wonderful information for our family regarding Conductive Education (Conductive Upbringing). Thank you so much Viktoria, this helps so much and I just hope it can help some other parents to really understand CE.

First of all, it's important that you always do what feels right for you. Reading up more, learning, gaining experience and just simply the passing of time changes our knowledge, viewpoints and whatever feels right may change, too. If you always do what feels right at any given time, you will never ever have any reason to blame yourself no matter what you do, and that's a good thing because guilt is a damaging feeling, it's not our friend and so many parents of disabled children burden themselves unnecessarily with it. Donnie was sucked into a lot of expensive sham but he's not feeling guilty about any of that because what he did at that time was, as he felt, the best thing he could do. (However, I think the guys who charged him 10.000 bucks for letting his daughter sleep under a magnet should feel very, very guilty!)

Your little boy is so sweet it's hard to describe. Enjoy him like he is now, because he's going to grow up very fast and run off with his girlfriend! One of the most heartbreaking stories I ever heard from a parent was the story of a parent of a child with cp who is now in his mid 20s. She told me she regrets one thing the most: she had this beautiful, wonderful, sweet little boy and she forgot to enjoy him because she was always on the lookout for help and raising money for therapy. The little boy wasn't suffering, he was a regular little boy with cp, happy and cheerful, and as such, he must have been great fun and it's very sad that his mother missed out on that and that now she regrets it. While you don't seem like one of these parents by far, there's so many of these parents, that's why I'm putting this here now, maybe they're reading this and think about this, and give up some of the despair and embrace more of the joy.

I'm very glad you're choosing a CE lifestyle for him and you're willing to continue with it. I hope you don't mind that i share a few thoughts on that, because I got the impression that you read some material about CE on the internet that was written by someone who wasn't a conductor or wasn't paying a lot of attention. Unfortunately, it's incredibly easy to find pretty bad information about CE; these are sometimes broad translations of some Hungarian material (it's difficult to translate from Hungarian to English) or accounts of visitors of CE centers who didn't quite figure out what they were seeing. Most of the time it's just that well-meaning people get carried away when they see for themselves that CE works, but they didn't quite yet figure out how and they're trying to find answers and explanations by themselves, which don't turn out to be accurate.

When you lead a CE lifestyle (which, more accurately, could be translated as 'conductive upbringing', but I'm going to stick with CE for now because that's how literally everybody calls it), you fundamentally change the way you perceive disability. It is a complete pack of approach and guidance on how to raise your child. You don't look at the disabled child thinking that there's anything wrong with them, or they're behind, or that they can't do something. You look at them thinking that they are perfect the way they are, and that they need to live and learn in a normal, rich environment like everyone else, and then expected to be active and independent at a level appropriate for their age in that environment.

This is a matter of decision; choosing a conductive way of life is like choosing other ways of life, like choosing to be vegetarian. Once you commit, you stick with it. You can't be vegetarian once a week, and then 'take a rest', and you can't be vegetarian from 10am to 3pm, and eat meat the rest of the time in order to have a break. You don't have a break from your fundamental viewpoints and commitments. Imagine what the jury would say if the criminal, who has a history of robbing banks claimed that they were a law abiding citizen on Tuesdays and Thursdays! What would that matter? Being a CE parent means that you are a parent of excellence who promotes and facilitates learning and independence at all times, not only on certain days or during certain hours, 'Tuesdays and Thursdays from 10am to 12pm'.

CE is not a therapy that you administer for a little while and then you're good to go until the next session. It doesn't work very well that way, the benefits of such are limited; CE is 'always on'.

So, does this mean that you're better obtain a plinth and other CE furniture for your home and make your child endlessly repeat what you've seen the conductors were doing with him during your last session? Does this mean your child has to carry out tasks at all times and neither of you can have a break?

No. When leading a CE life, you pretty much do the same as you'd otherwise do; the activities themselves are the same that you'd otherwise chose for a child and your family, like taking a bath, eating dinner, reading books or going to the zoo. The difference is that in a CE life you expect a child to be involved in these in an active way, and you let the child make things happen and you facilitate them through rather than you and the family making things happen to the child, on the assumption that they can't do them. Why do we have those assumptions and why are they wrong?

Disabled children, like all other children usually try doing things as they grow and develop. The problem is that they often can't, so they usually give up, and they very unfortunately 'learn' that they can't do this or that. Imagine a child who was trying to reach for a toy several times but could never reach it because their arm is so stiff they can’t stretch their elbow, so now they're just lying doing nothing, or crying. Sometimes they want to keep trying, for example they reach for their spoon, but we take the spoon out of their hands because they would make a mess and we also need to make sure their nutrition is properly covered. In this case, we deliberately teach them that they can't feed themselves. With all this learnt and taught helplessness, we usually get the cp child who can't do anything and who is totally dependent on others. Although there is a perfectly valid biological explanation (brain damage) to explain the problems they experience in the first place; they will just by nature try to overcome them, and then we come and stop them!

But this is not what a CE parent does. CE parents see when their children are up to something, step in, and help them just a little, just as much as the child needs so that they can perform what they started. In this case the child experiences success and the joy of 'I did it’ and will try again. The help they need eventually becomes less and less because learning is inevitable when somebody actively carries out a task that is meaningful for them, and at the end they may even learn to do it by themselves. So, in this case, no helplessness is taught and learnt, what is taught and learnt instead is that 'I can do fun things'.

If you're not sure when a child is 'up to something' (well, it’s normally all the time!) you set them up into situations which you feel may raise their interest, for example you put a toy near them that they can reach if they stretch their elbow a little. If they reach for it you make sure they succeed, get the toy and get to play with it and there's a reward and there's fun (you help them to push a button so there's lights or noises, which most children enjoy a great deal).

At meal times you let them hold their food or spoon, if they don't reach for it you make them, accompanied with a lot of cheering, looking into a mirror, playing games like 'the spaghetti monster wants to hide in the cave', or whatever you make up, if you find such games work. If it's really difficult, you hold their hand while they're holding the spoon and guide it to their mouth. When parents do this their children have a much greater chance to learn to feed themselves than the children who just sit and get fed like a newborn.

Please note that the examples I give never apply to everyone. Cp children are very diverse and there's no 'recipe' that can be prescribed. Actual advice is always based on the individual.

I'm going to put some further examples here, showing what a CE parent does different:

The dinner is ready and you call the family to sit at the table. You pick the cp child up from the playroom, carry them to the table and place them on the chair. Instead: you allow them to bring themselves to the table and climb up onto the chair. How? You use the methods the conductors used with the child for changing place during the session; they most probably explained you what the beneficial ways of changing place for that child were and they showed how to help them through; there may be some ways the children can already do independently and other ways they still need a lot of help with. The child may be able to commando crawl to the table, and may need help with crawling on hands and knees; you can even ask them which way they want to come. If they can't say, show them a photo of themselves creeping and one crawling and ask them to choose. When they discover that what they chose is the very thing that is going to happen therefore they have control, they will be thrilled. Then, you help them to get on top of the chair, (a conductor can show you any time how to do this, using one of those big ladder back chairs all CE centers have). The best thing is to ask the conductor to come to your house and show you how to do the everyday things using the existing furniture, or if the furniture really doesn't work they can assist you to change or adapt it so that it does work.

It's perfectly fine to sit on the couch and hang out with siblings and watch TV together as a part of CE lifestyle; but you may just want to help the cp child climb up onto the couch themselves instead of picking them up and placing them on it.

Other examples can be to get the children playfully participate in dressing and undressing (this one thing can be made sooo much fun, and it affects development in a wide range of ways); to brush one's teeth while standing at the sink, or leaning against the wall; climb or walk upstairs, downstairs instead of being carried at all times; ANY kind of game with parents or siblings (active participation of the cp child is required, observing others play is not enough!) playing with any toys, bicycling, even household chores like helping parents folding clothes (if they fold one single t-shirt in half while you sort the whole 100 ton of washing out, that's great); and so and so and so.

Realize that when you do these activities and involve the child, you're not doing anything out of the ordinary. You just do whatever needs to be done, involving the child at a level which allows them to learn how to be active and do just about anything (this, of course takes extra effort and time). Such children will not wait around to 'be serviced', as the ones do who have been taught that way. The child who actively participates in family life and self care, the child who gets themselves around (not surprisingly) end up being able to actively participate in life, take care of themselves and get around. The children, who never have to do a thing, will end up not being able to do a thing. This is not therapy. This is how we are. We learn what we do and we don't learn what we don't do.

So, that is, basically, how it works. If you ask me if this is proven, I have to answer, no. It's not proven that doing something may result in learning something. This may not be 'to-be-tried-and-proven-or faulted', I guess, or not the way it was attempted. This should just remain plain common sense. There were some very unfortunate controlled trials where a fraction of what CE is was applied to a group of children and intensive physiotherapy or a number of other regular things to the other, then they measured a fraction of what the outcomes of CE are expected to be, and found that CE and physiotherapy work the same. This doesn't give us any valid information because there was never, ever a trial comparing full time conductive upbringing to anything, and outcomes like self-esteem, self-concept and confidence were never measured. They never measured which child is more likely to try new things, the one who gets CE upbringing or the one who is wrapped up in cotton wool and treated like a baby and is pulled out for some therapy now and again? We think we know the answer to this because it is really just common sense, but sadly that's not scientific enough, there needs to be scale with scores. Do not get me wrong, physiotherapy works (it's not 'proven', either). Crouching down and standing up 30 times in a row is likely to improve one's crouching down and standing up skills, however, an hour or two of exercising now and again, or even a lot of exercise (4 hours/day during intensive physiotherapy) can no way have the same effect as CE, which means living and learning actively in your environment that you're expected to and are learning to control at an age-appropriate level, which affects your entire person, not just the muscles in your leg. However, if we don't measure it, we can pretend it doesn't exist, so we don't have to change our old ways--were these researchers thinking. It's also worrying if a child focuses on nothing else but physical exercise such large part of the day (4 hours during intensive physio), when do they get to study academics or god forbid, when do they get to play? A good CE life contains everything that a child of that age needs to do and learn, and these include playing, going to the toilet, multiplying numbers on a worksheet or pulling your sock off.

This makes it obvious, I think, that CE is not exercise. However, when it comes to a full CE life, the cp child can have just as much benefit from exercise as any other child, there’s no reason why various exercise activities couldn’t be done or wouldn’t be beneficial just because “CE is not exercise’. Everything that you see going on in a CE center is a task, through which children learn. They learn that trying out new things brings success, sense of achievement, feeling of being appreciated, being in control… The tasks develop their entire personality. Exercises are unlikely to do that; they strengthen one’s muscles, which isn’t bad of course, but we can expect their benefits to stop where benefits of exercising stop for anyone. They are not the answer for everything we may ever need to learn; abilities are a lot more complex than strength and fitness. (Strong muscles don’t equal spastic muscles and strengthening doesn’t increase spasticity. Conductors never thought it did, and there aren’t as many these days who come up with this wild idea thanks to research.) I have to mention here that some older children, especially boys love being told that they’re doing exercises when they’re carrying out tasks, as ‘exercising’ is meaningful and motivating for them; that’s what their older brother or dad does in the gym, therefore it’s ‘cool’. It’s okay to tell these boys that ‘doing your exercises will make you fit, big and strong’, it’s a motivation for them, they will pay more attention and they will try harder. However, a lot of conductors avoid the word ‘exercise’ like the plague because of the tremendous amount of misunderstanding it caused over the decades, as many people thought and think that CE works through the exercises, which strengthen the muscles and make children be able to do things they couldn’t do before because of the lack of ‘strength’.

When it comes to CE and exercise, I’d say it’s like the warning on a big box of chocolates that says ‘may contain nuts’. A big box of CE life ‘may contain exercise’.

I would also like to comment here about the CE furniture. Plinths are used in CE centers and schools because they're versatile (one can climb up and down the plinth, creep under, walk around it; one can grasp on it while doing a wide range of things, roll on it, turn around on it, they are also used as tables for schoolwork and mealtimes, and when they're not needed, they're stackable. That works well at a school, but at a home? You have a couch to walk around, or a regular children's table from IKEA, you can climb in and out of bed, and the child is supposed to sit at the dinner table with you anyway. You can build fun tunnels using your coffee table and cushions from your sofa...I'm not saying it's outright wrong, there are cases when it can prove useful having it in the house, but I'd say that's rare. Ladders usually prove useful, you can put toys on top and encourage your child to stand up holding onto the rungs and reach for them, and it can also be used for air drying your delicate clothes :-). Some kind of chair or stool is necessary to have, a little ladder back chair is great but you can find child-sized chairs in any furniture store. It really depends on what the conductors recommended for walking. The problem with the CE furniture is that many people falsely think that if there's a plinth and a ladder, there is Conductive Education.

As a final note on all sorts of therapies, it is worth for us to rethink the role of ‘therapy’ in the life of a cp child. I can’t help but wonder what kind of message our ‘fixing attempts’ are sending to our children? I’m afraid it’s sending them the wrong message that something is wrong with them instead of the right message that they’re perfect the way they are. I recently watched a video of a 3-year-old child with cp who was playing with her hands, bending and stretching her wrists and fingers and looking them intently. Then, her mother came to her and asked her: ‘what are you doing, are you doing therapy on your hands?’ That makes one think: if a normally developing child is playing with their hands that’s normal and called play. If a disabled child is playing with their hands, that must immediately be labeled as therapy. But what’s the difference? Who is doing this to the families? Why can’t disabled people do all sorts of things without implying they’re doing therapy? Can we avoid therapy at all? Of course this doesn’t make every therapy bad or useless; it’s rather the mindset that is questioned here. However, when you take a child to any therapy, it helps to consider what the child is doing during the therapy. If they are actively participating in doing something that is similar to sports or recreation activities normally developing children participate in, too, like horse back riding or swimming or numerous others, they are most probably learning something, or at least they're having fun (whether these activities are called 'therapy' or no), and if they aren't doing anything just waiting for somebody to do things to them or administer something, they aren't learning anything and you're probably just wasting your time. Consider that while watching the therapist do something abstract to your child, you could just as well be at home with them building a tower, teaching them how to sit, grasp, release, form words and communicate, name colors, numbers, and just be a child, be happy. I wanna see the 'therapy' that can uber that!

Happy 3rd Birthday to My Little Man

2010-03-08T21:05:00.001-07:00

I love you little man and can't believe it has been 3 years! You have taught me more than you will ever know or even begin to understand. I thank God every day for allowing me to take care of you while on this earth.
In your 1st 3 years you have reached out and touched the hearts of more people than we even know. I can't wait to see how many more hearts you can touch with your amazing life. You are stronger than any one can see and I can't wait to watch all that you will accomplish!!!
You are awesome and I love you so very much and am more proud of you every single day.

This is the video from Zach's 1st bday, we just have not had time to make another one.

Massage Therapy

2010-03-07T20:25:00.000-07:00

I can't tell you how many times I have been told how lucky Zach is to have a mom who is a massage therapist. I wish I could tell you I have been good about giving him massages every day to help out his high tone and tight muscles, but I have not been near as good as I would have hoped.

I have made a new commitment though. I want to try my best to give Zach a bath each morning followed by a 30 minute massage. I worked on him a couple of times last week and then again this morning and every time I do it just reminds me how good it is for his little body. His muscles just get so tight and being a therapist I know how good massage is for muscles like his.

I wish I had all kinds of tips to post on what to do and how, but off the top of my head I don't have much right now. We do have an old YouTube video you can check out at http://www.youtube.com/ncharlan#p/u/16/JU8Dlz3O25Q I just want to say how much I dislike myself in this video and hope to do a new one very soon. The night we made this video was not planned and Nathan caught me totally off guard. Sorry if I seem snotty at all; I just didn't want to be on camera that night!

Another question I get a lot is about the heating pad I use in the video. If you are interested you can just follow this link http://www.migunworld.com/healthy_mat.php
This mat has been wonderful for us and was totally worth it. I was lucky to have worked at a Migun store so that is how I found out about them.

Let me know if you have any questions about massage or working with little kiddos. Feel free to ask me anything.

Disabled

2010-03-03T17:24:00.000-07:00

Wow this is amazing. Who would have thought, definitions are amazing.

Conductive Education

2010-03-01T10:27:00.003-07:00

Conductive Education, often described as rehabilitation through learning, was founded by Dr. Andras Peto in Budapest, Hungary, in 1948. Peto devised this unique, intensive group method of special education, which expects and demands active learning and participation by the child in attempting to overcome his/her motor disability (i.e. cerebral palsy, traumatic brain injury, cerebral vascular accidents, etc.).
The conductors are responsible for facilitating education, utilizing concepts of goal directed activity, verbal regulation, and group dynamics.

Conductive Education focuses on the whole person, recognizing physical, social, intellectual, and emotional aspects of learning. Focus is on functional skills such as dressing, feeding, and walking. Ultimately, Conductive Education is the complex development of the personality.

Zach has been doing Conductive Education now for almost 6 months. We only go once a week to once a month depending on if we have the funds that month or not. Even with the small amount we can afford for him to go we have seen some things that make us so happy and so worth the time and money.

In just the first month of Conductive we started seeing much better trunk control and he has become much more aware of his larger environment. He has also started to understand the idea of potty training, he still does not have the words to let us know he needs to go but every time we put him on the potty he will go. This is something I did not give him enough credit for, I would have never even tried potty training with him because of the lack of communication about it on his part.

I know that this is just the beginning of many things he will surprise me with over the years. I am so excited to see all the things to come that he WILL do, at this point I am just not interested in the things he can't do. I'm sure we will come across things in the future but at this point I say "the negatives can wait, he is only 3. The future will bring what it may but we will tackle it as it comes."

Fun with Photo Booth

2010-02-28T19:30:00.000-07:00

1st Production Block for EFTV

2010-02-27T20:54:00.001-07:00

Production started for exceptionalfamilytv a couple of weeks ago and we are so excited. Here are just a few pictures of the time the production crew was here.

We are making so many new friends and getting to see old ones we had not seen in a while! We are so happy to share in this venture with so many people.

www.exceptionalfamilytv.com

2010-02-25T20:21:00.002-07:00

www.exceptionalfamilytv.com

I don't even know how to put into words what I want to say about this new adventure our family is on...but I will try.

I am so excited about www.exceptionalfamilytv.com. It makes me so happy to finally connect with other families who understand and are going through the same things we do everyday - to no longer feel alone in this journey.

Thank you, thank you, thank you to all the moms I have connected with so far. You have been awesome and I can't wait to connect with so many more.

I have spent so much time in the past wishing I had just one other person (besides Nathan) to connect with.

So I am thinking of getting honest here but not sure if I should...
I guess, ah, oh no, here I go.

In the past I have been so desperate and longed so much for connection that I believe I started to see things in other people just weren't there. I started seeing things in other friends' kiddos that were NOT there just thinking "maybe" I could really connect with someone... anyone!!!!

I never, ever wanted anything to be "wrong" with my friends' kids. I would never wish the struggles on them that we have been through, but my heart had just been aching for so long for some kind of connection.

I thank God every day for the opportunity given to our family. I will continue to pray it grows in many ways so maybe just one other person can feel the connection I have.

How have you connected with others? Have you longed to connect and just don't know how?

30 days, here we go!

2010-02-20T10:57:00.000-07:00

30 days, we'll see!
Here's the plan.
1. Eat at least 4 times a day, as healthy as possible
2. Follow Jillians 30 day work out plan

I have worked my butt off and on and off and on the past 3 years since Zach was born to lose weight and I finally found something that works for me. The only problem is the diet that works for me is not so good to help tone (because you can't workout while on it), so this is where Jillian is coming in.

I am going to spend the next 30 days committed to her workouts and see what happens. I have spent so much time working on losing the pounds. I am not completely committed to the diet but we will see how the workouts go for my body.

So many of my friends and family say that I am "always on a diet" and I am tired of that. I just want to reach a place where I am happy with how I look and feel.

I know that so many moms struggle with weight after having a baby and the stress that comes with having a special needs baby can make it even harder for many reasons. My doctor told me the stress from everything we had been through was keeping my hormones out of whack and she didn't really have a solution. Another reason is time, time, time. How do we find the time between doctors appointments, therapy appointments, working with our kiddos at home and just plain being tired?!?!

How do you eat healthy when at times food seems to be the only thing that makes you feel calm even if just for a moment (the guilt always comes later).

I was wondering what has worked, or not worked, for you when it comes to weight loss and healthy living?

My Ever Changing Perspective.

2010-02-18T15:33:00.000-07:00

It's kind of funny how your perspective can change so quickly when things change in your life.

I love how I can now look at Zach and the things that are different about him are the things I find so cute. The way his arms get so stiff when he gets excited, the way his head tilts to the left so often, the faces he makes when he is trying so hard to accomplish a task and just the way he looks sitting in his wheelchair.

These have become the things I now find so adorable in other kiddos as well; when I see another child with stiff little limbs or a tilted head because they don't have the strength to keep it up, or watching the face of a child who is trying with everything they've got in them just to turn the page in a book or push a button on a toy. I now smile every time I see someone in a wheelchair. This is not because I am happy they have to be in a wheelchair or happy they have to try harder to do things that are so easy for everyone else; it's because, in a small little way, it reminds me Zach and our family are not the only ones whose life looks a little different from the majority.

Without these things that make Zach so different, our life would not be the way it is and, yeah, some might think it would be easier, but then we wouldn't have the adventure in our life right now that is so much fun.

There was NO MISTAKE!!!

2010-02-17T19:02:00.000-07:00

God saw that you will always have the strength, with His help, to create you just the way you are. There was NO MISTAKE!!!

How I will explain to Zach why he is different from other people? Why God made him the way He did? All the “whys” that I know will come up as he gets older just scare me.
When I think about these things, I keep coming back to what people love to say to us as parents going through a tough time, “God gave Zach to us because He knew we could handle it and we would take care of him, because we are such great parents.” And it just reminds me it really is the same for Zach; this will only make him stronger and allow his character to grow.

It is not always about the little things in our life. It is about the “bigger picture”. It is about how we can help and be there for others. We are all here for a purpose and nothing is an accident. If Zach was not supposed to have CP, then he wouldn’t. If Zach is supposed to walk and talk one day, then he will.

I don’t know why I worry so often about the unknowns. It’s not so much the unknowns as the knowing how to respond, what to say or what to do when hard things happen. All I can do is pray for guidance and strength through it all just like any other parent dealing with the things that scare them.

Happy Valentines Day

2010-02-14T19:59:00.002-07:00

After being married for a while life seems to get a bit boring or at least you think so. I just love looking back at all the good, fun times we have had together. I feel so lucky to have married such an awesome, loving man. I love you babe and can't wait for all the amazing adventures that are in our future together as a family. See, the few years of boringness we had when we first got married will be totally worth it!! I just can't believe all the adventure God is giving us right now, I love it and I know you do too. Happy Valentines Day!

Friends

2010-02-10T11:00:00.001-07:00

It is so nice to reconnect with friends that have always been there but you had just neglected to put time and effort into getting together.

We had so much fun the other night hanging out with friends and playing games, next time I will actually take pictures of everyone, but here are some of Zach and Elijah.
Just reminds me for all the friends that may come and go there are always true and genuine friends right there, you just have to open your eyes and look.

I think we sometimes put so much time and effort into one or two people/families that when they are gone you think you don't have anyone left. This is just not true, we go through so many different "seasons" in our life and we are just in a new one now and hope to focus on where God has us and not where we thought we would be a week, a month or a year ago.

"When you are content where you are you can be content anywhere"

Haircuts are PAINFUL!!

2010-02-10T10:37:00.001-07:00

Here are some pictures of Zach's last haircut. He hates haircuts more than anything, more than therapy, more than noodles, more than the vacuum, he just plane HATES them. We have tried everything, suckers, cookies, singing and even letting him watch his favorite video and still NO LOVE.

Switzerland vs. Joy

2010-01-26T20:31:00.000-07:00

Why do I feel like Switzerland? I used to be a person that had HIGH emotions about everything, and now I just feel neutral all the time.

I'm not high and I'm not low.

I just am.

Nothing gets me REALLY upset and nothing gets me REALLY excited. I feel like I just kind of stay right in the middle all the time.

I am not sure if this has become a defense thing so I can't get hurt or disappointed anymore.

Believe me, I can still get irritated and wish things had gone differently but I just don't "feel" any extremes anymore. I still smile and laugh a lot, but I sometimes long for those intense feelings I once had.

I love my husband, my son, my family and my friends (those who are left), but I just feel the need to focus more attention on these relationships so I can learn to really experience joy once again. Not getting excited about things can really become a downer and I just want to be able to really experience joy the way God intended us to.

"To miss out on joy is to miss out on the reason for your existence." Lewis Smedes

"Joy is the serious business of heaven." C.S. Lewis

"The problem with people...is not that we are too happy for God's taste, but that we are not happy enough." John Ortberg, The Life You Always Wanted

This is my favorite!!

"One day a week eat foods you love to eat, listen to music that moves your soul, play a sport that stretches and challenges you, read books that refresh your spirit, wear clothes that make you happy, surround yourself with beauty-and as you do these things, give thanks to God for his wonderful goodness. Reflect on what a gracious God he is to have thought of these gifts. Take the time to experience and savor joy, then direct your heart toward God so that you come to know He is the giver of "every good and perfect gift." Nothing is too small if it produces true joy in us and causes us to turn toward God in gratitude and delight." John Ortberg, The Life You Always Wanted

Make me laugh

2010-01-03T17:20:00.002-07:00

Oh my husband really does make me laugh. The best part is that when he makes me laugh he gets so happy with the biggest grin on his face, like a little kid who just made his parents proud!

I call it "dad" humor most of the time but he really does have his moments where I start laughing and just can't stop.

I am so proud of the man he has become in the past 4 and a half years. Not always having to be so serious.

Love you babe!

True beauty.

2010-01-03T16:44:00.002-07:00

I can't really explain it, I don't know why but I absolutely love the ocean. I am afraid of being in the ocean but I love to sit in its presence.

I could sit all day near the water just listening and watching. For some reason it soothes and relaxes me. The feel of the breeze off the water and the warmth of the sand, if I could pick any where to live, that is where it could be.

Maybe some day!?!?

Day 5

2009-12-16T19:53:00.000-07:00

Today my husband gave to me a five piece corkscrew wine opening set and a poem in a Christmas tree!

I just love it when Nathan gets creative because he is so good at it. I wish it happened more often, wink wink!

I will post pictures when I have them all.

Positive things about having a child with special needs

2009-12-15T18:51:00.000-07:00

The positive things about having a special needs child

1. I get to hold my almost 3 year old as he falls asleep. (not all the time, he does have to go to bed by himself at night)
2. He can entertain himself for hours in one spot on the floor.
3. I don't have to run after him all day.
4. He rarely gets dirty.
5. He has opened my eyes to compassion and patience. (still working on the patience but getting better)
6. He can sit on our lap for hours without getting fussy or wanting down.
7. He has changed who I am and how I view the world and other people.
8. He has taken Nathan and I on a journey that we would have never dreamed of or asked for but, WOW, it is going to be an awesome ride for sure.
9. What we go through with him brings Nathan and I closer everyday. (it is a LOT of work because we are so different and deal with everything in opposite ways but so worth it)
10. I get to learn about things I would have never even thought about before I had him. (I really do love learning things about the way our bodies and minds work, just wish we had more info)
11. I still complain (too often) but when I do I always think about how hard it is for him to do everyday things and I think twice about my complaints and how trivial they really are.
12. My house gets messy from me and not from toys all over the house.
13. He doesn't hurt himself by running, falling, jumping or any of the other crazy stuff little ones do.

There are others but I will just post another list as I think of them.

Please believe I would take every one of these things everyday if it meant life didn't have to be so hard for Zach, but for now this is not the plan that God has for us. I want to accept and thank God every day for the gift he has given us in Zachary, no wishing he was different, just accepting what ever Gods plan is. My only wish would be that life didn't have to be so hard for my little man, but really life is hard for everyone just in different ways, Zachs difficulty just happens to be physical for now. Zach is not ours, he belongs to God and He has trusted us to do everything possible for Zach, and we will, no matter what it takes.

I will never stop praying that God's plan for Zach includes the healing of damage in his brain in some way.

3rd and 4th day

2009-12-15T18:22:00.000-07:00

On the 3rd day of the trip my husband got for me 3 french pens (writing pens) and a poem in a Christmas tree!

On the 4th day of the trip my husband got for me 4 bottles of wine (small bottles) and a poem in a Christmas tree.

Oh how I wish I could have some of the wine, but still working on the weight loss while he is gone. I am doing great I've lost 7.5 pounds as of this morning!! Hoping for 5 more before he gets home, we will see.

Preschool

2009-12-13T10:15:00.001-07:00

So I have been working on a post about the task of finding Zach a preschool and all that comes with that but for now I will just re-post Nathans amazing post about the way we both feel.

I think I am a little more excited about the everyday social part for Zach, yes I am really nervous but also so excited for him to have interaction with kiddos his own age. The big fear comes from wondering if he will truly get to be a part of the group.

Here is Nathans blog.

Strangers. Weird teachers. Classmates.

No one familiar. Nothing recognizable.

Handfuls of little 3-year-olds running around. Talking, talking, talking. Saying what they want, what they need, what they think. Asking question after question. Touching everything. Sitting on chairs at a table.

The crayons and paintbrushes to be manipulated by tiny little hands.

Snack time. Nap time. Sing-along songs with all the kids joining the chorus.

It’s a nightmare. All of it. Every little detail.

I’m scared of preschool.

Not that I’m going back to it. Though, God knows I would love to go back to the childhood innocence of the preschool-age without the responsibilities, bills, politics and world events to stress over.

No, not me in preschool. I’m scared for Zach.

As we close out 2009, Zachary’s third birthday is right around the corner in the first week of March. And he starts preschool.

Granted it’s a “pre” preschool program, it’s still going to be a school environment. It’s us leaving him there … helpless.

You see, Zachary still can’t sit, stand, walk/run, talk. How is he going to get by in preschool?

Mom nor Dad will be there to interpret his personal sign language. How will the teacher know his sign for “juice” or “more”? And even if the teacher knows Zach’s signs, will they take enough care to help him? Or will they be too preoccupied with all the typical little kids running around? Will he have a one-on-one aide? Will he get the assistance he needs and will they have the patience with him? What will it be like for him in that environment? What will he be thinking?

Will the other kids be constantly asking, “What’s wrong with him?” Will the other kids shy away from him because he’s different and through watching their parents’ actions they learned to reject anything different? Will the three-year-olds have the ability to tease and make fun? Will they establish their tiny little pecking order and peck Zach out?

We’re not going to be there to explain to each and every little rascal about Zach, every time the question comes up. We will have no ability to stop any teasing when we’re not there. We can’t tell him to sit up straight when he starts leaning to his weaker left-side; or to help him hold a crayon and put pressure to paper when it’s time for coloring.

I’m scared of preschool.

Renee and I love focusing and reporting on the positive progress Zach is making because it is all true and we are very proud of him. Yet the other side to that truth is the “can’ts” that haunt his preschool resume, if we were to look at it with blunt, harsh honesty. And that makes me scared.

For parents of typical kids, preschool is frightening for the child because it’s a new environment, new people, new faces, new schedules. I’d imagine (but won’t say definitively) that those parents are excited for their little ones to attend preschool, even if the child has initial, understandable hesitations and worries. The thing is, these worries can be communicated between typical child and parent. The typical 3-year-old can speak their thoughts in sentences and communicate what they want, need or how they feel.

Zach can’t. Well not the way a typical child does at least. Zach says “mama, dada, nana, papa, all done”, clearly and with purpose. He’s just starting to use a communication device, but communication needs to be prompted with Zach, it’s not always done from his own initiative.

Zach rolls on the floor and can army crawl. Imagine yourself laying on your back on the floor or on your stomach and imagine 15 people standing around you, walking around, running, playing, etc. Imagine not being able to say, “Hey, please don’t step right next to my face!” or “I really don’t like you running and jumping over me while I’m laying here.” Imagine you can only grunt, yell, scream or cry. And now imagine that form of communication irritating other kiddos and irritating a teacher.

I’m scared of preschool.

I have no answers or solutions for my fear. This frustrates me, especially as a father who always wants to find the “fix-it” solution to problems in life. I got nothing. And that too is scary and it hurts. The only thing I can do is move forward, as we always do. Take Zach into my arms and talk to him about preschool and let him hear my voice and hope he understands. We’ll make sure to thoroughly shop for the right preschool program and do what we can to ensure his needs are met. We may have to get him a wheelchair (that’s a whole other blog post) for his school setting.

And so we march on into a new era of Zach’s life, going from two to three-years-old. He’s an awesome little trooper with a heart full of joy. He’ll reach this milestone without knowing all the legal ramifications the age of 3 brings with it for a child with special needs (for those that don’t know, 3 marks a switch with early intervention services provided through the I.D.E.A. law. In order to receive services such as physical/occupational/speech therapy he needs to be enrolled in school). Heck, he may get excited about going to preschool and have a blast with the kids there.

But for now, I’m still scared of preschool.

The 8 days of Nathans trip, Day 1 and Day 2

2009-12-13T09:11:00.004-07:00

The 8 days of Nathans trip

The 1st yesterday was a poem called "You Are" about me and our relationship.

Nathan said to me on the phone last night "don't be mad about some of the gifts" and I didn't know why he said that...now I do.

I got to open my first wrapped gift this morning and it was 2 turtle candies (my favorite, even though I don't think he knew that) and a poem called "God's Masterpiece is Mother". The reason I don't like this is, we are leaving for San Diego as soon as Nathan gets home from this trip and while he is gone I am doing really strict dieting. I am only doing the dieting because I have gained some weight back from all the Christmas cookies and fudge.

So I was going to post some pictures of the gifts but a picture of 2 turtle candies looks kind of gross, so I will wait and see what tomorrow brings!

Jacques 30th B-day/70s Party

2009-12-12T22:34:00.004-07:00

My best friend is getting married and she planned a huge surprise party for her hubby to be and we had it at our house. It was 70s themed because he was born in 1979 and it was awesome. We had a dance floor with disco ball and all, all 70s music, lots of food, Rock Band on the Wii and even a make your own pet rock station. The turn out was great and it was so much fun! Here are some pictures from the night. These are just a couple and when I figure out video on this thing I will post the video.

8 gifts for 8 days

2009-12-12T21:51:00.002-07:00

My husband travels quite a bit for his job and I probably complain about it a little too much. I really have started getting used to it but would still prefer to have him home any day over not.
He knows how hard it is on me when he travels so this time he did something awesome, since its getting close to Christmas he left me a numbered envelope to go with a numbered gift to open each day that he is gone. I am so excited about this that it really takes every thing I've got not to open them all at once, but I wont! I will post pictures of what my gifts are as the days go on. Today, day 1 I got a poem. Nathan is a writer so this is one of the best gifts I can get from him, I LOVE IT!

Weight loss

2009-12-12T20:44:00.018-07:00

So many reasons for this post...number one is because my husband says I am obsessed with and talk way too much about weight/diets/working out and food. Anyone who knows me knows that these things have always been an interest of mine.
Now that I have found something that really works for me I am actually willing to post the before and after pictures. The first picture below was taken at the start of the diet (June of 09, after 2 years of trying to lose weight by just working out and fad diets) the 2nd and 3rd pictures were taken after 2 rounds of the diet each lasting 23 days. So a total of 6 weeks of the actual diet and 6 weeks in all of low carb eating. All loss shown is from June 09 - September 09.
I am so happy to have found something that works for me! I will not say that its easy, because its not, but it is short. I have to keep telling my self over and over you can do anything for 3 weeks, its only 3 weeks.
I'm going to do it one more time in January because I really let myself go during the holidays so far. So we will see what happens.