Therapies

[Guest guest]

I remember when we had to decide what to do re Elie and therapies beyond

what insurnaace and early intervention would do. IT would have required me

to work full-time and for my husband to stay on active duty - thus leaving

us. We decided that we would not do anything that we could not afford

unless it was a question of life or death. We worked with all his

theerapists (ot, slp, pt, and we did normal at home preschool - reading to

ELie, monitoring tv, encouraging muscle play, family outings. Elie walked

at 3y 4 m, and fed himself at about the same age, talked after age 5 -

altho mostly jargon. Toilet trained - endless- until 14-15 yo not

reliable.

Now if we lose him (or he loses us) in Home Depot, one can hear the bull

elephant bellowing " Daddy, where are you? "

Could Elie be more than he is? I have no anser, but my dream of his being

the next Burke died a long time ago. And now my dream is different.

To see him with a grin on his face 'cause he knows he did a great thing

(helping a friend), enjoying his life as it is, giving me a schedule of his

activities for the week, and being please with it. That's good too.

> I can so related to all that you wrote in your e-mail. I have

> struggled with this topic for the past 12 years (literally since

> Colton was brought home from the hospital). I believe that I was too

> extreme with therapy and if I had it to do over again would have

> accepted Colton's disability more rather than trying to change it. I

> wanted so desperately for Colton to be as high functioning as

> possible and did not allow myself to put limits on the amount of

> money we spent or the stress it created in him or our family. Colton

> is 12 and very low functioning in terms of what a test would show. I

> am convinced that he knows a lot but is unable to get it out in test

> form. I do not know how he would have functioned had we not done

> ABA, chelation therapy, wf/gf diet, somonas sound therapy, hippo

> therapy, cranial osteopathy, B2 injections, secretin therapy, program

> from the Academy of Child Development and I could go on and on. I do

> think programs and therapies are helpful but my experience with

> Colton has taught me that so much is determined from genetics and

> things that are out of our control. Maybe many would disagree with

> me but that has been what we have experienced. Last year our church

> showed the movie, " Facing The Giants. " It is a Christian based movie

> that ended by the main characters prayers being answered. I was

> sobbing at the end of the movie (not typical for me) and praying to

> God that if he never answered another prayer for me for the rest of

> my life that I just wanted Colton to talk. I truly believe he has so

> much inside but cannot get it out. Well, we started AVB this summer

> and he now can say about 15 words and has sounds for about 5 more

> words. I am very thankful and believe that my prayers were

> answered. Colton can now repeat some words and sounds and will do so

> in order to get what he wants. AVB was the tool (therapy) I believe

> God used to get us there. Colton still however prefers to not use

> words and will do so only when directed by us to do so. This has

> just further reinforced to me that Colton is who is is and that I

> need to accept him and love him just the way he is. If words can

> make his life better that I want to give him a way to use them but if

> he is fine not using them than I guess that is o.k. too. It has

> taken me a long time to get to this point. I believe life it is so

> important to keep a healthy balance ( I did not) between therapies,

> play time, down time, our children's needs, or needs, or spouce's

> needs, etc. I hope this helps.

>

> Lori

>

>

--

Sara - Life is a journey- we choose the path.