Living & Loving, Autism & Deafness
Our Journey with our loved ones and our lives
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 —
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!
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
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!
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)
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.
Ugh… a very nice hospital with awesome people but I’m tired of being here! But tomorrow I get to go home…
Chris damaged his ear with self-injurious behavior and had surgery on it 3/10. By 3/17 he had damaged it further as we could not control him to keep him from hitting/poking/punching his ear. 3/18 we spend 5 hours in the ER and 3/19 about midnight in the morning we were admitted to the area’s specialty children’s hospital. We have been here ever since (did go home for 20 hours from Sunday night to Monday afternoon).
Chris has adjusted fairly well now to the routine and the sitters and nurses and doctors. We urgently requested med regulation in addition to his ear attention as he was out of control at home, in the ER, and here at the children’s hospital. A large team is in place to help him and I believe they are helping as he is much calmer. He had ear surgery again Friday night. He shall probably be here about 2 weeks or so.
He was hitting everyone in our family on Thursday and it was completely out of control – he had even hit Colleen (9) and Ryan (2). So we had to get him immediately emergency help.
Prayers and thoughts requested as we continue on this path – he is also going to have a tonsillectomy soon and that will be a tough recovery. There is nowhere for him to go, either, to like a “nursing home/recovery” kind of stage so they’ll keep him here as long as possible and then try and have an aide set up for our house.
The Lord is in control… I just have to trust.
Blessings, dori
Chris had to have surgery on his ear on Wednesday because he hit it so hard he got cauliflower ear. We have been watching over him at home – he seems better today so he’s relaxing a bit in the shower and I thought I’d take a minute here. Those of you who are inclined, I would appreciate prayers/thoughts for him as his ear heals. He is on some new meds that we believe are helping him now sleep at night – it’s been 5 days now that he has slept well. I hope it also calms him too so that he doesn’t bang his ears or head.
When Chris was in the hospital last summer I found this Bible verse. I have claimed it again as my promise that Chris will be guarded over by the angels. Psalm 34
17 The righteous cry, and the LORD heareth, and delivereth them out of all their troubles.
18 The LORD is nigh unto them that are of a broken heart; and saveth such as be of a contrite spirit.
19 Many are the afflictions of the righteous: but the LORD delivereth him out of them all.
20 He keepeth all his bones: not one of them is broken.
I pray that Chris will be delivered from this ear problem with no damage or further danger. I know the Lord is more than capable.
I know I need to go back to attending church. I want to get back into music ministry but the Lord will have to guide me back into that – I don’t see it being possible right now.
I was in the choir at churches off and on from 1987-1994, then 1999-2000. I greatly enjoyed it, and also did special music solos with guitar, and also sang for the kids in kids church that were preschool age. That was fun (that was in 2001). When Chris got too big to handle and had started all kinds of health problems, I had to quit everything. I miss it all and pray I will be privileged to be able to do it again.
BTW, I was definitely diagnosed with ADHD yesterday at the dr. All the IQ testing is done. I’m fairly high on the scoring with the attention part being lowest, no surprise there.
Housework calling….
dori