http://www.deseretnews.com/dn/view/0,1249,660226195,00.html

The dreams that we hold about having our children… and the reality given and the new dreams held

Dreams of all my life
The children we always wished for
Years go by like lightning
But the expectations soar

Wanting perfection
Working day and night for our bread
Trying to observe each smile,
accomplishment, and word said

When the progression is difficult
than the way you thought
it can be easy to despair;
when the child doesn’t speak, you doubt

The deafness and the silence, and even times with speech,
yet centered in their self fulfillment,
yet merged with our duty and responsibility
can make you wonder where meaning went

Others don’t understand
the way our lives progress
only in humor can we survive
The surroundings can appear a mess

and the heart, indeed, can be torn
as the love is strong as fire
burning in fierce protection
knows how their odds are dire

Chasing a boy, so active and bright,
running in glee
before he breaks the dishes
and plugs cords into electricity

The older child, a man,
yet speechless he is
locked in his world, caught,
yet we glory at each new task taught

We watch for each new joy
yet fight for rights unknown
the road is full of mire
but the Light of God is shown

copyright criscollrj.com dori 11/24/07

Ryan had some new appts. this week. These are copied from a post I did about them - the first one is yesterday:

“Don’t know if I ever mentioned but we had a long-awaited genetics appointment today. At first, I was going to be tested for connexion 26 (an inherited hearing disorder - my dad had hearing impairment, I do, my boys do, and so does my cousin and possibly her brother). I never got the test because our insurance expired [our kids all still have insurance through Healthy Start].

Anyway, when I called about the test, to try and get it in before the insurance expired in May, they asked me more about our history, and after hearing about the boys and their autism spectrum, etc., they decided to instead test Ryan first. So we brought him in today.

He had a hard time being patient but did do some nice artwork on the board with markers!! We were able to give the dr. & assistant all our history, etc. He was supposed to have a preliminary blood test today but then he got so upset and was screaming in his stroller, so we put that part off for Monday. We were there about 1 1/2 to 2 hours already by that point.

There are more complicated tests, now, I guess, for ASD’s and other disorders, where they test different chromosomes and stuff. There may even be some syndromes that involve autism and deafness. So Tuesday we’re going back and Ryan is going to have blood test (s?) and we’ll see what they find out. [poor baby!] This will also tell us probably if my hearing loss is genetic.

They seem very interested in finding out what caused all these things to happen in our children. They also seem very knowledgeable and professional.

Eventually Chris will be tested too - he’ll have to be put to sleep for it.

Everyone knows us there too — we’re famous at the Cleveland City hospital systems…..

But it was a tiring day. It’s also emotional to think of everything that’s happened. It’s all for a reason, but it’s hard to go through it all–explaining how Chris lost his words twice, how we didn’t know he was deaf until he was 14, how Ryan’s developed mild symptoms (which breaks my heart over again) and even Colleen’s struggles with concentration.

Then we were going over all of Chris’s digestive problems he had as a young boy, and his weight gains and losses, and all the ups and downs of his health, and his skin infections etc (a lot of this is detailed early on in my blog).

I’ll keep you up to date as we get results…”

Then today:

“Today was Ryan’s appt. with behavioral center. He was assessed and we were told that they WOULD find someone to come help us at home with him some, but that they couldn’t promise they could find someone that really specializes with spectrum disorder. This lady (nurse/counselor) also suggested that perhaps we pursue something like risperdol for him. Chris was on risperdol for years - it actually did wonders for him - but I just wasn’t ready to accept that Ryan actually needed anything like that. But, maybe he does… we do have TONS of behavior problems with him, and —-”

This is amazing reading, and an amazing blog. I just have to be reminded sometime, of what someone may be thinking, that cannot speak…

http://ballastexistenz.autistics.org/?page_id=258

Boy, have I had a time posting here today! I think I have some goofball firewall problems.

Anyway - Quite a night we had with Chris tonight. We were going to our usual chiropractor appointment, and for this appt. there was a festival going on across the street.

We had gone there before during this festival with no problem!

Chris took off out of the car like a lightning bolt. SEE FRIES PIC Read the rest of this entry »

http://www.clevelandrocksautism.com/
Read the rest of this entry »

yawn. Chris has switched meds from Geodon to Abilify, and is not sleeping as well.

I should have been keeping an official log, but really haven’t. BUT — today is early Sunday morning. LAST Monday night, about 6 days ago, was the last night he had his Geodon med. But for some reason he stayed up all that night even though he had the Geodon. So the next night, the first night without the Geodon, he did sleep. Read the rest of this entry »

Dear Subscribers: The writer of this particular editorial asked that the name be withheld. While we struggled for a long time with whether or not we should send it out, in the end, we feel that the voices of the parents should be heard. Read the rest of this entry »

My friend Sugar (HI!) sent me this wonderful story about this lady Amanda’s method of communication as she lives with autism as an adult:

http://www.cnn.com/2007/HEALTH/02/21/autism.amanda/index.html

I think about what it must be like for Chris, not being able to hear or speak. I don’t think about it often, though, because it will make me cry and look at things that seem unfixable. But I know God has a plan and a purpose, though it’s hard to see what it is. Read the rest of this entry »