Category: autism

autism, Pans/Pandas, residency, writing

poem

criscollrj

2020 – it has been heartbreaking to re-read all this.  One of the hardest times of our lives — 2003-2004, as well as 93-94, 97-98, 2010, 2016-2019.  Autism, deafness, and this possible Pans/Pandas disorder…. so much heartbreak.  So grateful Chris (and Ryan) are doing better now.  Here Chris had to wear a helmet as he was hitting his head on all surfaces….  that lasted a few months.  

2024 – we had more heartbreak in 2024 with Ryan.  Haven’t even written in here yet, but things are a lot better now, but it seems the pendulum just has to swing around every so often… how strong are we supposed to be?

Comments: a poem about Chris, it’s been a while.

Felt good to write something. I think I got a lot out this way.

to say goodbye to you would be so sad
the child of my youth
all my life I dreamt of your arrival
it made my heart so glad

we waited years for you
you were born and we clung to you so tight
checked you in the night, looking for your breath
we were so careful to do everything just right

our firstborn son, you began to slip away
we didn’t notice at first, just thought you were shy
or quiet or the deep intelligent type
when you ceased your speech at 2 I thought I’d die.

to see you hurt yourself, the precious skin and self
that formed inside of me, then was born
is catastrophic and deadening, the greatest tragedy
of our lives, the event we always mourn

more than autism itself, the pain, the violence
that you would be in such pain,
the sound of fear is perhaps worse than just the silence
that we would hear if you were just happy but quiet, playing in the rain

like you used to do out in the pool, when you were five
the rain beat down but you were happy with your symphony
of bubbles that rose above you like a crown.
you always loved the pool, the bath, the river, more than any pony

that any other boy would like
we were sad at your difference at times but loved to watch you smile
and now to hear your laugh instead of your cry
would answer our prayers, at least for a while.

The whole family needs to be kept safe and strong
whatever it takes to help you all grow
and to also keep the girl and little boy growing up in health
I pray an answer comes soon, that we will know.

It wouldn’t really be goodbye, if it comes to a new home
it would be a place that could help you thrive
in your own way, in your own time
if that is the decision that is to arrive.

We would still see you often and love you so much
though of course we hope the answer is that you stay
whatever happens I know that the Lord is with us
And will give us strength to face each day.

@dh 7/5/04

autism, college, medications, music, Pans/Pandas, residency, sleep, waiver placement lists, waivers, weight

another old copied post…. things are not good :(

criscollrj

 

User: dori

Comments: feel like the straw that broke the camel’s back just happened – my aide just called and asked if I thought Chris would hit her today how do i know… – I said I didn’t know, he’s mostly hitting himself, but that he had hit me some especially on Saturday. She said she’s not coming today and that she’s going to call her office and explain how much he’s hitting her (he did hit her a lot on Thursday – she had a sore arm from it) and whether they still want her to come back – what do you think will happen?

2020 – yet another pans/pandas note… is that what this aggression was from??

I told Rog if I don’t have an aide I think we will have to have him go live somewhere else. We may do it this week. I’m so depressed. I can’t do this with no help. My mom did help me yesterday but he was hitting her and pushing her and she’s only 5’4″ and about 105 pounds so she can’t take too much -she’s also 61. My MIL isn’t even coming around to watch him anymore really – she’s pretty sick right now.

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autism, college, organizing, sleep, surveys, writing

Something’s missing, don’t know what. Some cool surveys, though.

criscollrj

I just want to do something different but don’t know what. I’m happy, but… oh, I don’t know. I love my kids, my husband. I love being a stay at home mom. But my dreams of school seem to be on hold again. It’s so hard. I know my kids come first. Here’s some postings from my moms group which just say more about all that

User: dori

Comments: I’m going to try and STOP talking about my decision stuff SO much after this because I think you’re all getting sick of it. But I need to just reply a bit more to stuff from the past few days. THEN I’LL STOP so you don’t kill me :P. So I’ll try and keep it short and first will just update you on the present.

Continue reading “Something’s missing, don’t know what. Some cool surveys, though.” →

adhd, autism, children, college, music

posts from my moms group….

criscollrj

KIM, thanks for your comments – you got me thinking about school again and about a conversation Rog and I had a few days before. I am not DEF. going to school in the fall. I’d LIKE to but things would have to be a lot different in a short time. Chris needs LOTS of work, and so do the other kids. Our house is getting a lot better on organization but it takes a lot of time and there’s two more rooms to remodel so that will bring more chaos. I’m simply going to gather information so I’m ready when the time comes. Do our financial aid papers, apply, etc. My gut feeling is that I won’t go until at least winter. It may be not until 2007 when Ryan starts kindergarten. Just don’t know!

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autism, college, deafness, medications, organizing, Pans/Pandas, relocation, relocation North Carolina, residency, sleep, weight, work

a little update finally —

criscollrj

speak and spell
You’re a Speak & Spell!! You nerd, you. Just
because you were disguised as a toy doesn’t
mean you weren’t educational, you sneaky
bastard.

What childhood toy from the 80s are you?
brought to you by Quizilla

it is a lazy Sunday and I have SO much cleaning to do.

Last I wrote Chris was having a VERY VERY VERY bad time. We had an awful 4 months – February – sinus infections, ear infections with ear injury from hitting; March, 2 ear surgeries, missed most of the whole month off of school, plus drug reaction to Seroquel/Risperdol and withdrawal; April, entire month, I believe, from school, just about (he may have gone a week or so), had 1-2 more sinus infections; May, Tonsillectomy/Adenoidectomy, and finally had to start more meds as he was still being aggressive, self-injurious, and very very upset and not sleeping at all hardly (like 3-4 hours every few days is all); and June started horribly as well but FINALLY last 3-4 days his new meds (Tenex) is kicking in and he’s sleeping a little more and is seeming happier. FINALLY.

(2020 pans/pandas)

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autism, college, relocation North Carolina, residency, waivers, work

anyone familiar with north carolina?

criscollrj

We are again considering moving to North Carolina — I’m sure I’ve never posted it here (at least I don’t think so) as the last time we seriously considered it was 1997.
But with my husband needing to find a new job we are now thinking of it again – since there is a job move in the future anyway we’d like to consider whether to move to NC. We live in NE Ohio.

The reasons we have considered NC is that:

For one thing it is beautiful and close to the mountains and the ocean!

But another more important is that TEACCH for autism is centered down there, and though it is now up in Ohio too it started in NC and I have a feeling there may be more centralized schooling for Chris at all ages and perhaps adult centers as well — I seem to remember that there was, from when we traveled and visited there in 1997.

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autism, deafness, God, medications

Tardive dyskinesia

criscollrj

Chris had some strange symptoms at school that developed yesterday with fast blinking eyes, extremely frequent vocalizations, staring upwards, etc., that were very concerning to them that he was having bad reactions to his new med Seroquel. We took him to the pediatrician yesterday and he was prescribed Benadryl to counteract any side effects of the med, and then today we took him to the neurologist who advised us to go off the med gradually and gave us a schedule for that.

We have been reading about tardive dyskinesia – a particularly troubling article is http://www.breggin.com/neuroleptics.html. This article involves schizophrenia and not autism, but it was concerning nonetheless. A more middle of the road article is http://www.ninds.nih.gov/health_and_medical/disorders/tardive_doc.htm. I feel we’re going to try Christopher med-free for a while and perhaps try some nutritional avenues to help him as much as possible. We have been wanting to do this for a while, actually, but we were at the same time afraid to take him off his Risperdal (which he is now off of and is taking Seroquel in its place).

unfortunately now in 2020 neither one of these sites will load — will have to find another.

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autism, health, organizing, Pans/Pandas, sleep

another quick update

criscollrj

hope to soon have time to ramble, but here’s just a cut and paste….. simply a copied email I just sent out. Prayers appreciated…….

I wanted to send one final update on Chris and then hopefully things will be calm and stable for a while!

(A summary in case I had missed any of you in rushing to get the prayer requests out – Chris had surgery on his ear 3/10 after he’d caused hematoma on it from hitting it so much. He then destroyed the surgery as we could not keep him from hitting it/picking on it and he had another surgery at the hospital on 3/19. He got out of the hospital on 3/26 after being anesthetized again on 3/26 for the pediatric surgeons to make sure ear was healed (this time under 24-hour supervision). It was, so he was sent home.)

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