My Quote for the week

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

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.

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)

 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

 

  

  

  

 

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

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

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

Conductive Education

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."