Living & Loving, Autism & Deafness
Our Journey with our loved ones and our lives
be scanning these a lot for a while – these aren’t even all scanned (some are digital), but anyway—-)
While waiting for Chris to go to sleep I felt like taking a few minutes to post old pictures [hey, I only have 9 minutes of audio left to type, right?] This is Chris about 9 months old, with Grandma
Awe, my li’l Colleen with her crawling doll
Waiting for our Ry-Ry
more soon—
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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 —-“
https://en.wikipedia.org/wiki/Murder_of_Jessie_Davis
and right in our backyard — Cuyahoga Valley National Recreational area is one of our favorite areas to drive to on a beautiful summer day [or any time of year] to go to a gorgeous park for a hike. I shall never go without at least fleetingly thinking of Jessie Davis, now, and her precious daughter, now in heaven.
First time I’d taken Ryan up to the lakefront in a few years. He did great! We were only there about 15 minutes — had tons to do at home and also had a headache. But he loved playing on the playground and then we walked on the sand for about 5 minutes.
What a beautiful cooler day today! I don’t think often enough either that we’re very lucky to live 10 minutes from the lakeshore…
all of the sudden. And when he gets his hair cut he’ll look even older (that always happens). Wonder if I should get his hair cut like we used to do Chris’s (will have to post that look, the bowl cut that was so cute on him!).
We are enjoying the summer as much as possible without going nuts 
Chris just started school today and I think he had fun. It was a new school for him. They said he liked the water play. He always does! 
Colleen is getting a lot of outdoor time with swimming with friends and her boating class.
The summer is really kinda going fast….
One more week until Ryan starts school! I’ll be working more then – I’ve taken a few weeks off.
What a beautiful night! After a few days of [for me] oppressive heat I really enjoyed a day in the mid 60’s today and an evening by the fire with us heating grilled hot dogs and s’mores 🙂 We wore long sleeves and jeans and enjoyed the fire and got rid of a ton of “burnables” from my cleaning the office.
In other news, Chris has finished his first week off of school and has one more week off before he starts summer school June 18. There are some pictures in the Flickr area of where we visited his summer camp yesterday (he got to enjoy a hot dog there too!). They seem like they will be very capable with him over the summer and he’ll have a good time swimming some days too!
Continue reading “Our first major bonfire of 07 —”
YAY- only took me like 3-4 DAYS! I hadn’t done it this thoroughly since Christmas.
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I feel remiss that I didn’t take more pictures! I did take a lot of video! By next year our video camera should be digital (we’re saving for one!) so by then that shouldn’t be a problem.
Anyway – we had a very nice gathering at Mama’s and Papa’s, and delicious food and wonderful company. Colleen got very nice gifts and we shared yummy hot dogs, barbecue pork, salads, and cake and other yummies! It was a rainy day so we visited inside.
Thank you all that came and made it a wonderful 13 for Colleen!
Not to confuse anyone – I also uploaded her 12th birthday picture as they were not on here (I started this site right after her birthday last year, like in August or so). So they actually appear first on the list unless I’ve changed their order by then…. To see the 13th birthday pictures just click on that set. [I’m trying to add everything to sets now].
(2020 – not sure if above is about Flickr — at this point I don’t have a Flickr sidebar on my blog but will leave that there in case I ever put it back — )
