I can’t believe how grown up they are…
Living & Loving, Autism & Deafness
Our Journey with our loved ones and our lives
I can’t believe how grown up they are…
Directly from my post to my transcription board 🙂
I have had to take a bit of a posting break. I’ll probably try and get back to posting regularly after Thanksgiving.
What’s keeping me so busy:
* Everyone being sick, including me, going all the way back to early October. I’ve scheduled a drs. appt. in case this cough isn’t better by then and also plan a chiropractor visit for this afternoon.
* Because of all the sick days for the kids, I had gotten so behind on my work I could do nothing else, not even sleep. I got a serious sleep deprivation there and last night actually fell asleep at 8 and got to sleep until 5 (just getting up once with my son at 11 who was still up….) sleep finally! I’m just praying I don’t get a migraine from all the sleep schedule switching.
* I also need to file and finish cleaning my office. (I did clean the desks and switched desks with my daughter over the weekend and am now proud to say I have a resting shelf for my feet to transcribe on and can even easily switch feet – yay! I’m also the proud owner of new speakers with a headphone jack, as well as the aforementioned new ergo keyboard and the new external hard drive to store my hefty space-grabbing audio on…
* I’m going to take next week off of work (probably just do British QA in the early morning) and just focus on cleaning my house well for the Thanksgiving dinner we’re having here. Then I’ll be back hard at work the next week, though I MAY schedule another few days end of next week to finish Christmas shopping and start wrapping (lest you think I’m some kind of holiday guru, we have cut WAY back this year and are only shopping for the children – our children, our relatives, and a few close friends. That greatly cuts the list down.
* And I want to try and get more rest so I can focus on getting better.
* Prayers still appreciated for our family’s health in general and for Lisa specifically.
* I haven’t started this yet, but next week I need to sit down and do tons and tons of paperwork and stuff for the kids that I’m behind on.
o I have to schedule also two sedation appts. for the boys for hearing tests they do on the brain while they’re sleeping, and for my oldest to have his blood tests he needs for his meds, and for them both to have good teeth cleaning.
o I also need to schedule Ryan’s concluding genetic tests (They probably think I forgot about them, it’s been so long).
o I also need to fill out two autism scholarship forms as we’re considering possibly trying to have them attend this autism/deafness school in Florida if there’s any way we can arrange it (probably for next year) but it will take a lot of planning and research and special miracles from the Lord. (And possibly me moving down there just over the school year – sounds very complicated but if it’s what the Lord wants for the boys it will work out – I’ll post the site soon).
I hope we have a good family gathering here on Thanksgiving – that’s the first time I’ve ever tried to have one. I need to go shopping for my turkey, etc., and plan the meal.
I also plan over the next few weeks to update all my sites for the holidays – one of my favorite things to do!!
Blessings, dori
In the late 90’s Colleen was 3 & 4, and we were very active at the Y, and she was in gymnastics, ballet, swimming, and art class. I taught at the Y – gym & swim, adventure center and babysitting room. I typed at home, too, AND in the middle for some months or so worked at a law firm. It was an insane two years or so. She had classes 2-3 days a week AND Chris had speech therapy and occupational therapy, and I also took him to the Y for play time that also really counted as therapy time for him, in the Y’s adventure center. (I’ll link to some pics of them when I’m more awake).
In about 2004 or so our schedule was insane before I almost had a heart attack (not literally, but of course who really knows?) [this was in most of the 04 year on and off after I quit “working” and thought I had to have the total soccer mom schedule AND have a better homes and gardens house (uh, yeah?)
Colleen: swimming, art, volleyball, trumpet lessons, counseling
Chris: on and off speech therapy, OT, and possibly another OT place part of that year (unless that was 05??)
Ryan: speech therapy, OT, toddler school therapy, gym and swim
Now – unfortunately we do “nothing.” I’m too tired from my life to do a thing, AND our scholarships expired for the Y. *I’ve not worked there since 01*, and now that we make more $ I cannot afford the down payments involved with the Y that they tack on to the scholarships at a higher income bracket.
BUT there’s a workout center right in our community that is free to us that I’m dying to check out (and probably “dying ” literally if I don’t).
Colleen is planning to play in the band next year – drums. I need to check out lessons. I know this will involve countless football games as a high school freshman! She was in choir last year, and band two years before that (since 5th grade). She played the trumpet.
When I was in high school I was in choir, played in the drama club events sometimes (guitar and sang), was guitar accompanyist for the choir, was in art club, on yearbook and newspaper staff, wrote books and poems, and took guitar lessons. In college I was in swing choir, took piano and voice, and just about quit writing altogether which was a shame. I then was in choir in church for about 10 years until 2001 and also played for the little kids. I started writing again in 1989.
Sports — I loved playing basketball but was never on a team. I also practiced gymnastics in my back yard, but again, never took a lesson or did anything (except participated in a cheerleading group in 6th grade for our school levy).
http://www.flickr.com/photos/criscollrj/sets/72157602827792657/
We are okay – sorry it’s been so long since I posted! We all had the horrible fall cold, and I’ve been typing endlessly. We had a fun Halloween – see pics! Now the race begins – how fast will Christmas come THIS YEAR!!?? Probably the fastest ever since I’m not at all prepared.
time to also prepare for Thanksgiving and take some serious time to pray and give thanks….
Chris has been staying up until 2-3-4-5 a.m. the last week. He always ends up falling asleep lately and gets up then about 10 (I have to force him up) – sometimes he sleeps until 11. I try earlier but it’s impossible.
So last night I wanted to take a bath, was trying to wait for him to go to sleep. He was still up at 3 so I gave up and went to sleep. Had aches and pains so had trouble going to sleep until 3:30 or so.
So TONIGHT was the night. I was definitely taking a bath (I haven’t had a chance to take one since May when all the kids were in school). At 10:30 I locked myself in the bathroom and ran the water all the way up. I heard Chris at the door but figured he’d just stand there like he always does when I just take a quick shower. Mind you, he can’t hear, so he wouldn’t know the water is on. And he’s never broke in before.
So I get in for ONE MINUTE. He UNLOCKS the door. He’s never done that before. Now RYAN has, which is why I never shower when he’s up (and he’s usually up at 6 so you can imagine how hard it is for me to shower when I maybe have this window from maybe 10 at night – well, now that Chris is opening the door, I don’t know WHEN I’ll shower, either.
I tried to hide thinking he wouldn’t see me (dark shower curtain) but I left the BUBBLE BATH out. So he’s grabbed the bottle, getting ready to get in, so I had to get out. I’m trying to push him out of the room, getter madder and madder (he is down from 230 down to 188 with his med change, but he’s still got me by 11 pounds). But I couldn’t win. I did grab my still pretty full bottle of bubbles and hid them in the bedroom.
So, no bath, and couldn’t even rinse the bubble bath off. I feel worse now. Sweaty and not rinsed. Blach. My plantar fascaiitis [sp] on my foot is acting up – I wanted to soak it for a while. Couldn’t do that either…
I’m just going to go to bed – he’s happily enjoying my raspberry creme bubble bath. I need a good night sleep – please pray he just goes to sleep on his own and doesn’t bother me….. 4 1/2 hours sleep last night wasn’t enough (I was very lucky Ryan slept until 8).
grump over.
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 —-“
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 —”
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 — )