Tag: autism

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

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.

Continue reading “another old copied post…. things are not good :(“ →

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.” →