autism, chris, deafness, writing

A poem —

 

Wow, I just found this poem as I was packing and sorting notebooks in my laundry room. I wrote this 8/26/90, just 3 months before Chris was born.

curled up tight
in a cocoon
hug the branch
call it home
afraid to fall
out of the shell
to unknown
dangers

can the cocoon
stay home
safe inside me?
what would this
safety bring?

dh 8/26/90

That really struck me – my 14 year old Chris, still in his cocoon, of autism, and deafness

 

autism, chris, relocation

thoughts…

hi – house thoughts —

We are almost done with our 4 day wait to see what the school says about Chris. To summarize – our offer and financing are approved. We are waiting for the school district in the new area to state to us whether Chris can stay in his present school that is meeting his needs. We do not know what they will say – have no idea – though common sense says they would have his best needs at heart.

I had said from the beginning that if they say Chris has to leave his school we would not buy the house. I have a friend (one of my best friends) that is trying to convince me to think this a little less black and white. She is stating that perhaps the new school WOULD have a viable option for Chris even if they do not approve his going to his present school. She is also saying to think of Colleen’s and Ryan’s needs. They are attending the City schools, which Chris is not attending. Colleen has just entered the middle school and for the next 6 years will be dealing with attending an inner city school. Ryan will just begin Kindergarten in 2 years but then of course by middle school will also be dealing with the same as Colleen (though of course by then Chris will be grown and probably living somewhere else so we could probably move by then.)

She is just saying to keep an open mind and keep the whole family in mind, not just Chris. That is very hard for me!! But she is right.

I also don’t know how long Chris will be with us in our home. My good friend Kathy is just now finding placement for her autistic/ADHD son. Her son is out of control, running down the street, banging on windows, and has to have the police called on him regularly. He is almost 16. I hope Chris doesn’t get to this place, but he IS ALSO leaving without permission and going down the street. I know we’ll have a fence at either place, but her son is at the point where he just hops fences to get over them. So I’m starting to wonder if I’m being too narrow minded basing this decision TOTALLY on Chris. I’m adjusting my thinking, though I don’t know what I’ll do yet if they will say no tomorrow about him attending his present school….

What is good for Chris at this new house is we’ll finally have a place to set up a work area for Chris that will mirror his work area at school. He will have a rocker for music time, an exercise bike, and a reading area and a icon/object schedule. We were going to start this past summer on this but didn’t know where to put the exercise bike and chart! Now we’ll have a place, whether we decide it should be in the basement family room, or in his bedroom.

Thanks for listening…..

dori

 

chris, photos, relocation

house!

we’re just waiting on a snag about where Chris is going to school, and if that resolves this house will be ours!

(not valid link) https://criscollrj.com/photos/displayimage.php?album=12&pid=957&slideshow=5000 is the new location of my house pictures. That photo site of mine had been full – it’s still a little messed up but I’ll work on it slowly 😉 — it’s fun to have my photo site up again!

 

autism Ryan, chris, Christmas, Ryan, sleep

Yawn….. grrr.

I’m not very happy about the fact that Chris is up at 2:15 a.m. Just Sunday night he stayed up all night until 6 a.m. He seems to be doing this more often. Last year he started sleeping regularly July 15 with his hospitalization/med change. From july 15 until sometime at late fall he slept every night, then he had 1-2 nights he was up and he started suffering from his ear infections. All winter long if he stayed up it was usually an ear infection. It settled down again and he slept again for months and then last month (july) was up maybe 3-4 different nights – then, his swimmer’s ear. I wonder if he’s getting swimmer’s ear or ear infection again. My worst fear is that he’s losing the effect of his meds…. it’s happened before. (But not on these meds)

I am pretty tired and hope he sleeps soon – tomorrow is a very busy day and even at this point if he falls asleep right now I’m looking at about 4 1/2 hours sleep before I have to get up. We are going to Ryan’s last day family event day with an ice cream social. My mom is helping me. She is also watching kids so I can get a haircut. Then Thursday we’re going to a local waterpark (Rog will be off) for a fun day – Colleen had coupons from school. I’m not sure how much I really want to go but I know Colleen will enjoy it.

Ryan has had a lot of struggles at his summer preschool. He started hitting and even biting. They feel perhaps they didn’t have enough one-on-one attention for him. At his regular school he has a one-on-one. It will be interesting to see how his regular school year goes. His regular teacher in the school year seems to still be looking to make sure he’s not autistic, although the neurologist has ruled it out for the moment.

I really would like to run away somewhere, for just a little while….. only 1 more month (less than!) til Ryan goes back to school and I can take a BATH! or a NAP

DANG, i really wanted a shower, tonight too – was not counting on an all-night Chris party.

Ryan will be going to speech therapy 4 mornings a week in the school year. Since Colleen starts school at 8:00 instead of 9 I’ll be taking him to therapy at 8:30. It will be good to be done with that early and back home. He will get on his bus then M-Th. starting September 6 at 11:45 and if he rides bus home he’ll get home about 3. I’m hoping they let Colleen ride his bus – we’ll be in the situation where Chris gets home at 2:30-2:40, and I’m supposed to pick up Colleen at 2:30-2:45, and Ryan at 2:45. They said they’d probably have her go to Ryan’s class (they’re in the same school – preschool is at the middle school) and I hope they just let her ride his bus home. Or else I’ll have trouble being in two places at once!

Then I have to make decisions on several things – last year we did swimming on Monday, skating on Tuesday, counseling (for Colleen) on Wed., art (Colleen) on Thurs., and chiropractor (for all) on Friday. This year I would be adding on OT for Chris that is special at a center, possibly the same center for Ryan, and Colleen wants to do girl scouts and 4h Guinea pigs/small animals. Something will indeed have to give.

I am pretty sure I am not doing regular Christmas cards this year – I always do them and enjoy it SO much but this year for a little break I think I’m going to do holiday emails right at Thanksgiving, and then only send maybe 20-30 cards to family that doesn’t have email. A friend of mine and I plan to do some homemade goodies/crafts for Christmas gifts.

babbling to stay awake…….dori, not happy at 2:30 a.m.

 

chris, deafness

Thanks for prayers —

Chris went through the test fine. I’m so relieved about that.

About the results —

he is severely and/or profoundly deaf – 80-120 dcb. Apparently this is almost totally deaf. He may be helped by cochlear implants. So obviously something genetic here. Both boys are getting blood tests to check on genetic causes, and my daughter needs to be tested too.

and our refrigerator’s broken (for the 3rd time in 3 weeks).
more soon —