Category: children

autism, organizing, relocation

Families in trouble

criscollrj

I did get lots of stuff done yesterday and DH helped me a lot. I sorted all the papers again in the living room and packed up more stuff. Sorted out several drawers in the bedroom and organized those. Threw out tons of stuff! And this morning I did some laundry and actually baked a cake. Not that I need to eat it — ha! — but I’m trying to use up all my boxed goods especially due to the danged moths we have that get into all of that stuff. I’m not taking ANY of them with me…. the boxed goods (and hopefully not the moths, either!)

Wanted to post about two autism related things–

Continue reading “Families in trouble” →

autism, chris, deafness, writing

A poem —

criscollrj

 

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

 

adhd, college, deafness, relocation, speech delay, weight

interests survey

criscollrj

LJ Interests meme results

    1. attention deficit:
      I believe my whole family suffers from this. Apparently I have it, but it didn’t affect my school work – I was kind of a brain ha ha! But my housework abilities suffer.
    2. back to school:
      I still want to go back to college, but this, again, is on hold. I really want to get either a music therapy degree or an occupational therapy degree.

Continue reading “interests survey” →

autism, chris, relocation

thoughts…

criscollrj

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, deafness

Thanks for prayers —

criscollrj

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 —

 

deafness, weight

Behind as usual!

criscollrj

Got to have a horrible case of swimmer’s ear for Colleen. She was supposed to have her party (friends’ birthday party, which we try and have in the summer as her birthday is end of May) this Saturday but it’s postponed until next Saturday. I keep telling her, cheer up, she’s having the bad luck all at once and hopefully the rest of the summer will be fantastic!

The rest of us are healthy. Thank goodness. Chris is enjoying his summer camp and swims there and at home. (We got a 2 1/2 feet pool from a friend, with a pump, that is so cool!) He doesn’t put his head in so I doubt he’ll get swimmer’s ear. Ryan goes in too but runs in and out. Ryan got his hearing aides and hates to wear them so we’re just putting them in about 10 minutes a day right now. We have to hold his hands so he doesn’t rip them out!

I am just busy doing all this and my house looks like I never do a thing. It’s disturbing, but I know it’s temporary. I get a little sad about not going to school in the fall now but know it’s for the best. I am enjoying the summer but at the same time am a bit eager for a break come September when I’ll have 3 hours a day with no kids….. ahh.

But we’re treasuring the summer.

Oh, 9 POUNDS GONE!

 

children, organizing, surveys, weight

I’ve really cut back on my computer time —

criscollrj

and it shows! My house is much cleaner and I think I’ve really caught up a lot on paperwork. I probably won’t be here that much now as it’s summer break and my kids will be home all the time — except for brief periods in the morning while one or the other will have preschool/special needs camp/bible school, etc. I haven’t really been reading as much either – but will come back when I have time.

Pray this summer goes well for us – it can be a challenging time as Chris is so used to going to school and doesn’t understand why he’s not going now!! And here I was all set up to blow up the little wading pools and my stupid air pump is GONE – I can’t find it. It’s too hot to walk to the playground. So he’s in the shower AGAIN.

But, all in all, things are much better than LAST summer…

I LOST 5 POUNDS!!! so far…. 50 more to go!

survey: Continue reading “I’ve really cut back on my computer time —” →

autism, autism Ryan, deafness

Ryan autism?

criscollrj

 

2020 – so with Chris first mention of autism from a doctor was around summer/fall of 1994 until January of 1995.  He was 4.  Ryan’s first mention is at barely 3, in 2005.  I suppose with it being 10 years later they could spot it faster.  I also, remember, however, when Ryan was maybe a year younger that his pediatrician said there was NO WAY he had autism.  It’s strange how things work out.  With Chris, the first mention of autism was from my cousin, when she came to visit us from New York.  With Ryan, it was a note on a drs. report.  Never did we actually see ourselves and say, this person may have autism.  I guess parents are the last to know or see it….

On Ryan he has what’s called “a flat moderate sensorineural hearing loss bilaterally.” I got his report today and shared with some of the professionals that need it. I need to fax to more people tomorrow. In addition to following upon the hearing loss the final instruction was “continue with psychological/neurologic workup and monitoring for early identification of possible autism.” That kind of gave me the chills. I don’t know if they think he has autism or if it’s just family history — ugh.

dori

autism, deafness

Ryan

criscollrj

posted from my other group…..

We got important news today. Ryan had an ABR plus another sensitive hearing test under sedation. Surprisingly, to all of us, he does have hearing loss in both ears. She said his hearing loss I believe is about 50 which seems to be described on the internet as Moderate — 40-68 dBHL (decibels hearing level). I am curious what that means he hears – Colleen had the list of what sounds are at what decibels in her science notes a few months ago coincidentally but they’re not in our house now, but at her school in her desk….

We’ll get the report next week and need to follow up immediately with ENT on further guidance. She believed hearing aides will be necessary, along with further therapy aside from the speech therapy he gets – another kind of therapy will be necessary that relates to hearing loss itself. Anyone else going through this? She also said the ENT may be able to help us see what caused it. I was concerned it was his ear tubes – she said no. Then we saw the chiropractor today and he said, yes, it could be. Then I looked online and I see that “rarely” the tubes can cause further hearing loss and possibly perforation, and further problems when the tubes come out (they are still in). The chiropractor thought perhaps we should get them out now to avoid problems – I’m not sure. I need to see what the ENT says.

l’ll let you know how things progress!

Additionally, don’t know if I told you, we got a grant for Christopher to get further therapies for his autism. I need to call and schedule that – we’re so grateful, just have to figure out when to fit it in around what will be Ryan’s new therapies, and Colleen’s and Chris’s present activities. I had already cut out the Y entirely but had hoped to phase it back in next session, since it’s so good for the kids, and paid for by our community program for disabled kids (kind of wasteful not to use it!) But I needed a break for one session. Hope I can do all this — thank goodness I still have my aide 14 hours a week!