Category: autism

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

 

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

 

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!

 

adhd, autism, speech delay, work

Cutting down on computer time.

criscollrj

just posted this in my other group — thought I’d update here too.

Time: Sunday, 2/13/2005 10:34:34 AM (#65523)
User: dori

Comments: Hi – had to make a tough decision about 5 weeks ago and cut out just about all my computer time.

Quick update – Since Ryan quit napping right after Christmas, I made the decision to cut down/out the computer time because it was becoming unsafe to not monitor him at all times. Even now I’m watching him over my shoulder,but he’s eating at the moment. He is into everything, climbing up on ledges, cabinets, tables, etc. He still will often throw things, including pitchers of juice, etc. He is in speech therapy 3x a week still and starts preschool in 2 weeks (2/28). I am looking forward to a break and I think some structured school time will be good for him as well. He barely made it (by 2 points or so) into the special needs class in our city due to his speech. Of course that means we are hopeful he will be catching up on speech even further, which means he wouldn’t be eligible next year, but then maybe he can get into headstart. He will be in a special needs/typical mixed preschool from 2/28 until end of year in May.

Chris is still sleeping well and fairly healthy. He has periodic fits still where he runs through the house hitting himself and us and the walls – maybe 2x a week at this point (down from 2-3 times a day at Christmas when he had a cold).

Colleen is doing well in school and has speech and OT as well. She is also going to counseling 1x a week, since November.

Our work situation is still the same, Rog is looking, not finding anything, but his work is steady, and I had to stop looking “for” him as my job is these kids’ mom and right now Ryan is my biggest challenge. We have lost our insurance, but the kids still have theirs. Thank God.

I’d better go… I’ll try and post when he goes to school 😉

dori

——————————————————————————–
Time: Sunday, 2/13/2005 10:36:21 AM (#65524)
User: dori

Comments: He actually quit napping before Christmas, but I was still putting him down for nap times and he’d nap about 1x a week. But what happened right after Christmas scared me so much I stopped putting him down – he jumped up and down so much that somehow he hit his face on the crib bars and split his lip and bruised his gum. We thought he’d have to go to the ER it was bleeding so much. But it stopped, and it healed up. But no more “quiet time” in the day in the crib for him…

 

adhd, autism

Exhausted

criscollrj

I just wish I had time to write out all the things that go through my head.  I just go and go and really never have a down time.  If I do take a down time, something else suffers, like my sleep time, or my pile of dishes, or my daughter’s homework.

I’m not depressed, but I’m unfocused and also eating compulsively, and I’m sure it’s from the stress.  The kids are exhausting me.  They’re wonderful – I LOVE THEM! And I’m happy I’m a mom – I always wanted to be one.  BUt I thought being home I’d have ALL THIS TIME and could do all I wanted to do with them and the house, and have me time too….

nope!

As usual I have to go…

I think the hardest though is Chris is having these fits again where he marches through the houses screaming and starts at the height of it grabbing my arms or hitting me, making scratches as he does it.  He’s hitting the aide too and I’m afraid she’s going to quit — I need her!!!  She’s helping us 14 hours a week but it’s just through Medicaid – I know it’s not the highest paying job in the world for her!

I’m worried about Ryan some as he’s SO hyper, and when he jumps on us in the morning (4:45, this morning) he seems to have no regard as to where his head goes on the bed and I’m scared he’s going to bash his head in!  He has spells where he’s this hyper.  He crashed his head into the side of his crib a few weeks ago and got a split, bleeding lip.  We almost put him in the ER!  I need to set up a bed for him instead as he’s learned also how to put his leg over the side.

I’m thinking of trying again to put everyone (we all have ADD, I think – 3 of us are diagnosed) on a sugar-free diet again (with the help of Splenda and Diet rite pop!) to see if we can calm this behavior down.

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asperger's, autism, Ryan, sleep, speech delay, weight, work

Sunny Sunday

criscollrj

https://www.bing.com/images/search?view=detailV2&ccid=F39pFlpQ&id=8AA97F55C9DDA85C1DA73230FDFD595806D9A9D2&thid=OIP.F39pFlpQ41zRa-Edn8XDBwHaJT&mediaurl=http%3a%2f%2fimg4.wikia.nocookie.net%2f__cb20111217143120%2fdegrassi%2fimages%2fd%2fdc%2fManny123z.png&exph=392&expw=312&q=manny+degrassi+image&simid=608025956886450056&selectedIndex=4&ajaxhist=0

You’re Manny! (Manuela) You are clingy, yet cute.
Childish, yet can have some amazing pearls of
wisdom. You are the Sam to Emma’s Frodo. Cheer
up about Craig, dear. There are plenty more
boys who dig it when you call your stuffed
animals weird names!

Which Degrassi Girl are You?
brought to you by Quizilla

I love Degrassi – can’t wait for new season!  (watch on the “N” on our new digital cable which I don’t want to get rid of with our “broke-ness” now….)

Doing great, though I feel bad I missed church.  Chris fell asleep just moments before we left!  He is doing very well – naps every day still (a little earlier than expected today – usually he’s nodding off a bit at church which is a GOOD thing).  So next week I’ll give him the pill a little later.

Continue reading “Sunny Sunday” →

autism, medications, Pans/Pandas, sleep

Monday and much better!

criscollrj

I can’t write too much today but wanted to update any readers that Christopher is doing MUCH better!  We are so grateful. He was hospitalized in a child psychiatric center a month ago and they regulated him on meds that are causing him to be much mellower and to SLEEP!  He sleeps about 6-8 hours a night and even often naps 2 hours a day now.  Boy what a difference!  He still has some challenging behaviors, but with sleep it is doable!

I will update more later, thanks for prayers!

2020

this was the beginning of the difference for Chris that lasted quite a while.  Ryan also got better in 2019 with a significant med addition.  Whether the cause was Pans/Pandas or something else we don’t know. 

2024 

Ryan had issues causing meltdowns again in summer of 23 going into Fall, which were finally narrowed down to severe constipation.  Daily and weekly meds were started and changed and adjusted and he still will have bouts of trouble, but after 2-3 severe bouts lasting into Spring of 2024, he seems to be again stable.

dori