We are on a Journey / Seeing words

[Matty's Mummy]

Out son Matthew has some quirky behaviour.
While we (husband and I) had questioned different possibilities, we had reassured ourself that Matt was a lot like his older brother (who has Aspergers?) anyway while quirks are not really a problem, got on with life but kept a eye on things. That was until he broke his arm, then all the little quirky behaviour became a living nightmare. There was more to just a broken arm from a fall on the tramp (landed funny on the Tramp mat) the hospital had sent us home with out cast or strapping as they couldn’t’ find a brake. As well as that he was scared while at the hospital after being taken into a dark room, to be x-rayed. You can imagine a small child in so much pain, dark room foreign thing (x-ray machine) with soft light, coming towards you… Matthew rang and tried to scream but couldn’t talk, his words wouldn’t come out, when they did he said “get me out of here….” I have never in my life seen anyone so terrified it was flight to survive stuff. He couldn’t’ breath..
Wont go anymore into it but it was really bad.
From then on he had regressed to wetting himself, hyperventilating, doing odd breath holding, breathing into his hands and flicking air away, constant whistling when using the toilet, breathing over shoulder when weeing, as well as a lot of Obsessive Compulsive Disorder (OCD) (Obsessive compulsive disorder)
The hard thing is many of the quirks were there before as well as him having sensitivities to light, sound, touch and feel.
We have a great Occupational Therapist (OT) and Pead who are looking into all things, tis’ not an easy diagnosis with so many different things going on.
Many of the things that came about after the trauma are settling down, although someday he still cant use the bathroom as it’s a small room, hand washing has now been added to the long list of things. And let me just say Obsessive Compulsive Disorder (OCD) in a 4year old isn’t common. So he differently has some posttraumatic stress going on as well as other tings.
There is a point to my post sorry I’m getting there.
We have been trying to find out from Matthew why? He has to breath hold. It’s hard trying to understand what makes him do this. He has always said “I’m getting my breath out or in” so I had thought because he couldn’t speak (out of fear) when he was in hospital, and he hyperventilated , I thought it was all about that. The Occupational Therapist (OT) thinks it’s all part of his copying (which I do to) but also she said it’s about his sensitivity so feeling. So when he wee’s he is hyper aware of the feeling. To understand this better, he was upset (well distort) because he could feel his heart pumping… that is a long one so I wont go there too much.
Well today he shed some new light on this. I havn’t asked him in over 2mths about it and I did today. He said “mum I have to catch my words, so they don’t go down the toilet” I said “you cant see words though, mummy cant see words” I spoke and said see you cant see the word “dog” and he said yes I can and started to point in the air.
He didn’t say the letters he just said the sounds the letters make and kept sounding out words and showing me them in the air., Well of cause I cant see them, but the child is convinced he can see words!
So now I’m freaking out I dont understand what is going on.
A few months back a Early intervention teacher visited Aden, we went through some family history stuff about all the kids, and about how the Pead was thinking Autism Spectrum Disorders (ASD). Anyway while she was here she said to me, “that is very autistic what he is doing, sounding out words like that” I was shocked cause I thought how clever he was, it’s the one thing he doesn’t that I never thought anything of.
An example is (oh and he isn’t’ as full on with this now, it’s not every time he talks) he might say to me “mum I need a drink” then he will follow up with sounding out some of the words in his sentence. I dont know how to type sounding out words though sorry, it‘s a bit like “Mmmmuumm iii need a ddddrrriiiinnnk, ddddrrriiiinnnkkkk….”
He is reading books now, he has stopped with all the Maths stuff. And is working out how to spell everything. Ke comes running to me a few times a day, Mum I know how to spell ….
So anyone know anything about how he sees words?

 

[SRL]

If you haven't already, look into Hyperlexia.

Kids with Hyperelexia have an inate ability to decode language, and start reading very young without instruction. Often they see the letters, sounds, and words in places we'd never imagine. Seriously--these kids are "one" with letters and words. I wouldn't be surprised at all to hear a child with Hyperlexia or Hyperlexic tendencies to be talking like your son is. Also, Hyperlexia has some kinship with Autism Spectrum Disorders (ASD)'s and since there's already a family history, it would be more likely to see signs in sibs.

 

[BusynMember]

My son could sight read at two. He had no idea what he was reading, but he'd memorized the words. It is called hyperlexia and is very common with kids on the autism spectrum. With your older son as an Aspie and your younger son having a lot of traits of Autism Spectrum Disorders (ASD), I'd have him tested. I prefer a neuropsychologist. He probably overreacted to what a "typical" child would when faced with an enclosed space, lights, etc. (poor kid) because he is likely on the spectrum...and those kids do NOT do well in those situations. Obsessive Compulsive Disorder (OCD) behaviors are the norm with kids on the spesctrum too. Sounds like the incident triggered some regression. Is your son in any Early Childhood programs to address the issues? My son did really well in those programs. At 15, it is clear that his early interventions really paid off big. His Autism Spectrum Disorders (ASD) is no longer as big an issue as it was when he was a toddler. I'd take your son to a neuropsychologist if he were mine plus knowing what I now know. Good luck

 

[BusynMember]

Hmmmmmmm. You're not in the US, are you? We don't use "mum" here nor "maths". If not, you may have to try to get a different type of help, depending on which country you live in. I gave you the type of advice I'd give to somebody who lived in the US...we have a great gal from Australia with a few Aspies and many from Canada...

 

[Matty's Mummy]

SRL thanks again you’re a wealth of wonderful information.
I have joined the group and had a bit of a read, its’ worth considering thanks again

MidwestMom

Is your son in any Early Childhood programs to address the issues?

No we don’t have that around where we live.
He did Kindy last year but this year we kept him home.
2 is young for sight reading, Matt has only just started that at 4.
Yeah I’m in Australia, what do you all Maths?
I’m very jealous of you US mums all the specialists help available to your kids. Here we struggle for dentist and Doctors actually the dentist I seen last week is from the UK, he and his wife are in a bit of shock coming out to the out back where we live, lol I drove to Target and my mums this week 7hour round trip in the middle of no-where.
We have been lucky a Paediatric Occupational Therapist (OT) moved from the city out this way, she’s an hours drive and has been seeing the kids, other than that nothing.
Disability service hasn’t had a Physio in 3years they finally have one coming in December, to treat our entire region, it’s crazy here.
Thanks for your help.

 

[Marguerite]

G'day, Matty's Mummy. We've 'talked' before. In the US they call it "math" (singular) but it's the same stuff.

It's difficult trying to get a diagnosis especially if you're stuck out in woop-woop. However, you should be able to get some sort of assistance to get a diagnosis at a major hospital clinic, either major regional centre or state capital. Do you have access to a Community Health Centre at all? What about the nearest baby health centre? They may be able to help you get access to some good diagnostic services. We have, in some cases, a better health system than the US. At least we have Medicare! Dental - that's a headache for all of us, but just about everything else, should be available for minimal cost. If you're isolated there should be some scheme available to help you.

We've had other CD members living in isolated regions of Australia, I remember one of them was out back of Cairns or thereabouts, got her son assessed in Brisbane Hospital (or whatever it's called). I think they stayed at Ronald McDonald House when they travelled to the city for a diagnosis.

I'd have to do some digging to find what services you can access, but it should be possible to get the help you need without it costing you a fortune. However, you might have to travel. I do think there is assistance for this, though.

Do you have a school in your area or do you need to use Distance Education for the older kids? We use Distance Ed for difficult child 3 even though we're geographically close enough to mainstream schools; but it has been great for difficult child 3, it's exactly what he needs. You do need to get a diagnosis, though.

You mentioned in another thread that there isn't a Special Education unit at your school - that's not uncommon. However, there should be a branch of your state Dept of Ed that covers your school - ALL schools are supposed to be under the umbrella somewhere of a Special Education advisor in Dept of Ed in every state. If your child attends a mainstream government school (or even pre-school) you can organise funding to pay for an aide for support. You apply for this through the school counsellor at the school in question. We've even got a Special Education person supporting difficult child 3 in his Distance Ed school, I've been emailing her today.

Support is there, it's just hard to find out about it sometimes.

YOu also mentioned in the other thread about the paed diagnosing Obsessive Compulsive Disorder (OCD) as well as Pervasive Developmental Disorder (PDD) - in my experience, Obsessive Compulsive Disorder (OCD) is not necessarily a stand-alone diagnosis, it can also be part of the Pervasive Developmental Disorder (PDD) (it is in our case). An aside - my older kids have adopted a quote I first saw on this site from Star - "I don't have Obsessive Compulsive Disorder (OCD), I have CDO. It's like Obsessive Compulsive Disorder (OCD) only all the letters are in their correct alphabetical order!"

Hang in there. You need good answers and a thorough evaluation.

Marg