Language Translation

Tuesday, July 26, 2011

Therapists with You and Your Child and Your Finances

*This is a blog about my own life and my own experience.  If you choose to follow anything written here, you do so without any claim on me for problems or complications that may arise.  I am not a doctor.  I have no degree.  I am not a professional.  This is my perspective and experience, that's all.  If you don't think you should do something on here, then don't.*

Hi Families!

Today I was reading about a mother who is stressed because she cannot get an official diagnosis on paper.  She is worried about getting the supplemental income to pay for all of the therapies and medical appointments her son needs.  As I read that, I thought about my own life that was therapy free and the lives of the children I work with - some with and some without therapists.

I thought about all of the therapies that cost so much.  I thought about all of the things that families do to get those therapies, the sacrifices they make.  And then, I thought I ought to say my two cents worth, although you may think it worth even less than that.  Once again, my thoughts are my thoughts.  I hope they are viewed the way I intend them.  I am not looking for arguments or to incite therapists or parents.  Rather, I am trying to show a different perspective.  That's all.  So here goes.

Parents, you are in need of education, real education.  YOU are the specialists when it comes to your children with special needs.  You are the ones who are with them all day every day.  You are the people who see the subtle changes, the light in the eyes for a split second, the panic that passes after a moment on the face.  You are the ones who see the food reactions, the medicine reactions, the physical reactions and seizures.  Most importantly, you are the ones who feel them.

Your heart tells you far more than you are accepting.  You know far more than you realize you know.  Why are you looking for a doctor or a specialist to validate what God gave to you innately?  This child was given to you to raise.  Not the doctor or the therapist or any other place.  YOU know what will be best for your child.  Do not second guess that voice inside...once you do it will lead you to second guess yourself the rest of your life.

Now, when I said you need a real education, this is what I mean.  You have access to everything you need, but you don't know how to use it and integrate it or, in some cases, are just too lazy to do the work.  The therapists are there to show you technique and tips and tricks to help you.  They were never intended to be the end-all of therapy for your children.  Therapists should be used as a resource when you don't know what to do next and have not had success with what you are doing.  They should not be the ones doing the regular therapy...they don't have enough time for that.  But, even more importantly, your child will accept the therapy and the good that comes from it much faster if it is coming from you and not from a stranger.

I believe that each child with special needs is developing differently, they are not stagnant.  While those around me were learning social skills, I was learning God's voice.  While the teenagers I knew were worrying about boys and clothes, I was thinking about the love of God and His gifts to His children.  NOW, the roles are reversed.  We are learning differently, that's all.  Not one better than the other or higher than the other.  Now I am the one learning the social skills, learning about clothing and hair and make-up, etc.  And isn't it wonderful that I get to go to my friends who are learning to hear God's voice and learning to feel His love?!  They help me learn the social and physical part of life, and I help them learn the spiritual and intangible.

So, if you accept that we are all learning different things, the first thing to do with your child is to back off and let him learn.  It may not look like learning to you, but he is.  He will show you when he is ready to learn something new.

The girl I am currently caring for was overloaded with all of the therapies and therapists and integration charts.......YUCK!  I wanted to run away and I wasn't the one required to do it all.  She was smothered by it all.  Thankfully she has a wise mother who does not think her way is the only way.  We talked about the therapies that were useful and the therapies that were harmful right now.  And I emphasize the "right now" because they are good therapies.  Just where she was emotionally, physically, mentally, and spiritually, Elena was not ready for all of the therapies she was being asked to do.

As soon as I redesigned Elena's therapy schedule to suit where she is right now in her desires as well as her abilities, we saw overnight changes.  She is progressing rapidly.  As do all children who are allowed to learn the way they learn best rather than being told to learn the way "everyone else" learns.  Elena is doing things the doctors said she would never do.  She is moving beyond what every doctor ever told her mother to hope for.

I do a couple of things to make this therapy work for Elena.  First, I throw out the amount of time she takes on a therapy.  I don't care about how long it takes.  We start where she is neurologically.  So, if she were 14 months old neurologically, then I base my therapies on the things I would do with a 14 month old who had neuro-typical development.  I do not base it on the idea that she is slow and has to catch up.  I am coming from a place that says, "This is where she is.  What would I do if she were a NT 14 month old girl?  What games would we play?  What developmental things would I integrate to make it a smooth transition into the next skill set?"

Now, granted, some of the games are a little harder for me to play because physically she is not 14 months old.  If your child is 30 physically, but 2 neurologically, the games will obviously need adaptation.  But you can figure that out because you are smart enough to do that.

So, back to Elena.  If she were truly 14 months old right now, I would be doing a lot more neurological exercises than physical ones.  She would still be tottering back and forth, if she were walking.  She would occasionally stumble and fall.  Sometimes she would try to run and go smack down, face first.  That's all part of the experience.  And physically, if that is where she fits, then great!  Her progression is on the same level physically and neurologically.  It gets hard when the physical is so ahead of the neurological, as is the case with Elena.

Before I came, the main focus was her physical development.  Now the problem is trying to catch her brain up to her body.  It is a much smoother transition when the body and the brain progress in tandem.  But, nonetheless, there is still plenty that is and can be done.

At 14 months, I would be encouraging babble and diverse environments with a NT child.  So why should she be treated any differently?  I treat her like a NT at whatever neurological age she is.  Does that make sense?  So I don't treat her like a slow 5 year-old.  I treat her like a NT 14 month old.  There is a big difference.

So I chase her around the house with a foam sword touching her feet to get those legs moving and help wake up the nerves in the skin.  She is always barefoot in the house.  We do as little clothing as possible so that she has her skin touching things all of the time.  This, again, helps her to wake up those nerves in her skin that have not yet fully connected to the brain.

Have you ever noticed a NT child of this age?  They hate having their clothes on.  They want to feel everything around them.  They want to touch and taste everything.  So I let her do the same thing.  She runs around the house in nothing but a diaper.  We chase, we play, we sing, we read stories, I point out everything I'm doing and tell what it is, why I'm doing it, the uses the object may have, etc.

When I chase her around the house and catch her, I lay her on the ground and then I tickle her - top to bottom.  My fingers run over her from head to toe, front to back.  This wakes up the nerves, gets the blood flowing to those areas of the skin and makes it "wake up."

These are just a couple of things I do.  It is just playing and having fun.  I don't think, "Okay, now I need to spend X amount of time chasing and tickling her skin. . . OH!  Time's up!  Now I need to sit and read for XX minutes."  We just do what she thinks will be enjoyable.  Some days she doesn't have a lot of physical energy and spends more time sitting and reading or learning the mechanics of toys.  Other days she is full of energy and wants to spend the entire day running in a circle around her house while I catch her and tickle her every few laps.  Sometimes we crawl and she will not start crawling until I'm on my hands and knees - my body above her's as she begins crawling and the game is that she tries to crawl faster than I can.

We just play.  A little secret, what children do naturally as play is the very thing they need developmentally to grow and progress.  When we make it therapy and timed and strict and within guidelines and confines, we take the fun out of it and then the play becomes work.  Then mom doesn't enjoy it and the child doesn't enjoy it.  If you feel very uncomfortable with it all, go get a book at the library on regular old child development.  If you feel more free, sit and watch your child play - or watch other children at a playground or park who are the physical age of your child's neurological age.  Mimic that kind of play.

In the end, it's about helping him while still playing and having fun.  The therapies are needed, but the great financial strain is not.  If the parents will do the work, the therapists can guide and help and then everyone is successful.



*This is a blog about my own life and my own experience.  If you choose to follow anything written here, you do so without any claim on me for problems or complications that may arise.  I am not a doctor.  I have no degree.  I am not a professional.  This is my perspective and experience, that's all.  If you don't think you should do something on here, then don't.*

6 comments:

  1. As a mother who has just been enlightned to the fact that I have 2 children and a husband with high functioning autism the overwelming bills are pilling in and that is just for the first child. My oldest son and husband are in denial and wont seek the help. Our other teenage son was suicidal. My husband and I have both had cancer in teh last 4 years, and overwhelmed is the understatement of the century at our house right now. I am currently in therapy as well just trying to survive. Our family is apparently in crisis and we are just in "survival mode" at this point. Someone had told me about a link to autism on fb, and from there I found you today. I totally agree that it is up to me to become educated as overwhleming as that is right now to do. I read 2 books about aspergers and slumped into a depression of my own. Feeling hopeless at the future and not really knowing where to turn for help. With our outstanding medical bills and my recent cancer I have no idea how we will pay for everything coming in either. I always seem to be left on my own to figure everything out. Your blog post was great...just what I needed to hear today. Thank you

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  2. I recently came across the book entitled, "Simplicity Parenting" by Kim John Payne, M.Ed.

    I found that much of his insights have been exactly the things I've been striving to do within my own family and while I've met resistance from outside family members, it was so comforting to read this book and feel validated.

    He writes it for children and families in general but I've found that my children, with their autistic tendencies, have benefited tremendously from some of his suggestions.

    This book really helped me put things in perspective and understand the developmental challenges of children and teenagers. I hope it can be of use to someone else out there.

    Thanks so much for your blog, Tara! I'm so glad you have the love to care for the circumstances of people around you! Keep up the incredible and important work!

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  3. Everything you say about therapies I agree with. Alot of people tell me I NEED to do this and this and this. Instead we sat down with a awesome neuropsycologist at Children's National and ranked therapies by level of importance. What we could get the schools to do we do there, some I have had to go outside but I do not want his whole day and life to be therapy. Just being a kid is therapy in itself.
    We recently lost our speech therapist (she is moving on to another clinic) but before she left she told us what WE can keep doing at home. It will be a while before we get another one wait lists here are insane.

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  4. We have tried many different therapies over the years with varying degrees of success. I wish I could look back and say "this one worked for sure". Sold our house once to pay for different therapies. Neurofeedback, Fastforward. Neurofeedback speeds up processing in the brain and can be used for any type of "brain" trouble. Fastforword is to retrain the ear and is for people with auditory symptoms. A neuropsychologist helped discover which of the senses needed fine tuning in our family. I will agree with Tara, though that there is so much you can do on your own. I did not find speech therapy, occupational therapy or physical therapy overly helpful. SWIMMING was wonderful. Something clicked in our daughter's brain when she got in the water. Here we had spent all this money on these expensive programs and we should have just had her join swim team! something happens in the brain with swimming. The same thing happened on a horse. I hate horses, but one time I was praying. My daughter with tourette's was throwing huge fits and I had tried everything. The Lord told me "Put her on a horse". Read "The horse Boy" and look what can happen to the brain around horses. we have traded all our expensive therapy at our house for swimming and horses and have made more progress :) we have NLD(like Asperger's)schizophrenia, CAPD and Tourette's at our house, but everyone seems to be doing so much better :)

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  5. I just found your blog and I'm so glad I did. My son, who has Aspergerger's, is around 3 years ahead of his age intellectually and around 4 years behind developmentally. I've always spoken to him according to his intellectually age and adjusted my expectations of what he can do according to his developmental age. I've had to withstand a lot of criticism from my family and questioning from my friends, and sometimes I've wondered if I'm doing the right thing. It just seemed so dehumanizing and disrespectful to demand my son progress according to a time table other than his own. I have told him over the years that beautiful flowers bloom at different rates, film develops at different rates, and people are no different. Even though at 18 he seems well adjusted for someone dealing with such a large gap between intellectual and emotional development, all the nay-sayers start to wear me down and I start questioning myself. This post lets me know that I'm on the right track and to stick to what I'm doing. Thank you for letting me know what it's like from your perspective, this encouragement came to me just when I needed it. Reading this isn't only encouragement from you, but from God - that he's seen my heart and sent me reassurance through you. Thank you for that.

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  6. Tara, I think you are right on track with you you have said. My advice to new parents is always as follows: Trust your inner voice, you are the expert on your child, never be afraid tho satnd up and say I know whats right fro my child not you. Doctors, therapist, friends do not spend much time with your child, why would you think they would know what is best for him/her over you. You are your child's protector and advocate. Trust in your ability as a parent. I also feel that people with problems accepting diagnosis or labels aren't relizing that they don't define a person, they are a tool, your child will still be autistic even if you do not call them that, but you will loose a great tool to understand and help your child along through life. Thanks for the wonderful insite, Misty

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