Aspergers/Autism/Sensory Integration Chatter

[monnie]

Hey Christy

I can't talk as a Mum with a child with sensory issues, but I am a Speech Pathologist who works in the areas of ASD and sensory issues.

I just wanted to wish you all the very best in the assessment process. It will be draining and at times, perhaps a little frustrating...but hang in there!

It's fantastic that Matilda is able to access multi-disciplinary assessment. It really is the only way to go.

Please let me know if there is any thing that I can help with on the Speech Pathology side of things (e.g. if you want help interpreting the report or help regarding what sort of questions they may ask).

I wish you guys all the very best!!!

[christy]

Thanks Monnie!!! It will be good to have some help deciphering things. I need to get the book you mentioned in the other thread, should be a great help.

I've also read "The Curious Incident of the Dog in the Night" and I have to say that explains a lot to me. I actually understood the boy heaps, I understood where he was coming from & his rational thinking (to me at least ).

[monnie]

Yeah...that's a great book.

Any books by Tony Attwood (he's the guru of Aspergers Syndrome) are great too.

And feel free to PM me with any deciphering questions...I'd be more than happy to help, if I can.

Take care.

[nickel]

I shall watch this thread with great interest! My have to get SIL onto BB after all!!

[barbie-up]

I had Alex (2.5) seen by a paed. OT and she said he has sensory issues and put us in touch with an early intervention centre. We had an assessment there where they video you playing with your child and the therapist playing and intervening as well.

Our key worker is coming to the house on Tuesday to discuss the assessment and our options.

We went to a 'sample' session at the EI a couple of weeks back. Just to see what they do in one. It was 2/3 music based and Alex does not like music and didn't participate in almost all of it. The one thing he did like was playing the jack in the box where the children took it in turns to sit in a donut shaped sponge cushiony thing and they put a blanket over the top and sang the song. They were learning about waiting, taking turns and anticipating what was going to happen and to verbalise what they wanted to happen. Alex loved it. 'my turn, my turn' he said, but when it wasn't his turn he was happy to wait.

We also go to a playgroup that has a music part - Alex doesn't like that bit, so he sits with me and watches or goes and plays. He does not like me participating. Weeelll, they did that song and his head pops up and he comes over and he had a turn. Just once - there was no turn taking with this, just all the kids jumped in the middle under the parachute. It was very exciting.

[Inanna]

As always Belly Belly to the rescue! Thankyou Christy for starting this.

As some of you know my eldest daughter was diagnosed formally with ASD last September. For years and years I knew something "wasn't right" - but it was so hard to put my finger on it. As she got older the behaviours changed ( for example she is now fine with coping with shopping centres etc where as a baby/small child I would more often abort the whole grocery expedition as it was fraught with screaming, and dreadful tantrums). Different behaviours have emerged. She has great great difficulty dealing with stress and anxiety and copes badly when she doesn't know what is going to happen next.

The diagnosis has helped me tremendously. It has helped our relationship no end. I now understand much of what is happening to her and why she is so rude and abrupt.
HOwever my husband is a different matter.

Ruby was always known as "the difficult one" - a difficult child. She challenged both my DH and myself. Howevear, as she has got older the behaviour has been worse for me to deal with. Mainly because I am home alone with her for so much more of the day. (DH is gone from 6am - 7pm daily). I get the stressed out child who has just held it together at school and then dumps it all as she comes thru the door. She would scream and yell religiously every afternoon. Anyway my DH believees DD behaves in these ways because she can't get on with me - he refuses to have anything to do with the iagnosis. Her first diagnosis was given by Atwood's clinic and the second and third by separate paediatricians. He still won't have a bar of it and it has made him angrier and angrier.

I feel myself getting more and more depressed as time goes on. My relationship with mydaughter has improved so very much since we began therapy - really she's like a new child! But my relationship with my husband has deteriorated dreadfully as his anger is very great that she has been "labelled".

Has anyone else had to deal with similar?

[barbie-up]

Flowerchild - I am not with Alex's dad anymore, but he refuses to acknowledge there is anything different about Alex. We start at the early intervention centre next week and my EX has no idea, he has never seen Alex interact (or not) with other kids. When I first bought up my concerns he said Alex was acting that was because we broke, because I spend too much time at work, because I don't play with him enough, because he does not play with other boys enough ... etc .. and then my EX MIL rings up and starts talking about down syndrome ... completely off the track !

The EX MIL also mentioned one of her daughters' children who loved trains as a toddler (that is one of the things with Alex, he is obsessed with Thomas the Tank) he is now 16 and has been on ADD medication for at least six years. Who knows if some sort of intervention earlier could have avoided that.

It's funny being a mum and you just know something is different.

[maz]

As always Belly Belly to the rescue! Thankyou Christy for starting this.

As she got older the behaviours changed ( for example she is now fine with coping with shopping centres etc where as a baby/small child I would more often abort the whole grocery expedition as it was fraught with screaming, and dreadful tantrums).

**** I feel like im treading on the same path with you hon

ok my turn

I fell pg with Wilhelm as soon as Jed and i planned to have another baby. I knew that something was different from word go and often quered the midwive and doctors at my AN appointments who told me everything was alright whilst rolling their eyes as they turned away. Whilst I had heaps of movement with Nikolaus, I had nothing with Wilhelm and was told he was just a peacefull baby. Even my day knew something wasnt right when I told him what I was feeling. Anyway I had the perfect baby when he was born...fair, peach complexion...slept like an angel at the hospital..then BANG I couldnt get this kid to stop screaming. the more I tried to do console him with cuddles and affection the more he screamed. I tried to BF him and he scream...refussing to latch on. I cam enear him he screamed. He did start smiling and reakognising me at about 4 months but when 6 months hit it was like someone has switched off the lights on my little boy and hit him in the face with a shovel. He just lay there, day after day not moving. He failed to crawl or sit up by the time his first birthday had come and I was a tmy wits end.

I remember going to a richard Isanhower lecture at the local school and I sat there next to one of my friends weeping. I stood there infront of 200 people (something Im not comfortable with) and told Richard my concerns and how I felt through my pg....Richard told me I was a very intuned mum and that I should seek help as soon as possible. Wilhelm was 14 months old. I started getting help,seeking resources the very next day.
iI to couldnt drive into the supermarket carpark without Wilhelm having a fit and screaming that bad that I would end up crying, turing around and just going home. He would only stop as soon as we left the car park. I became a recluse and felt very much alone as none of my friends understood the heartache taht I was having..to watch my son go through these horrific things that were so stressfull for him..I was also sick of my friends and family telling me it was a stage he was going through..I ended up turning my back on many of them for their lack of support.

i gave up returning to work as WIlhelm needed help with many everyday situations and things that I felt I needed to be there for my child...i felt and still do to this day that I have failed him as a mum becasue he is not classed as the 'norm'. I cry when I see other kids treating him different or when a situation distresses him...but I cant always step in and I have to allow him to feel the world as it is.

it wasnt until Wilhelm has his formal diagnosise at 4 1/2 that I finally allowed myself to start grieving the child that Wilhelm should have been. I still find myself crying in frustration and anger. Angry at him at times because his lack of understanding. Angry at the world because I feel my little boy has lost his childhood and is more an adult than me at times. Frustration at the lack of support locally from departments and frustration at family members for not understanding Wilhelm for who he is...not what he is.

Wilhelm has changed so much over the last year since starting school. I have headbutted with the teacher a few times as she has treated and spoken to me as a student and that just doesnt rub well with me. I am his mother and I think I know my son better then anyone....I got payback though when she didnt listen to me and he lashed out badly. i ofcourse delt with the after marth at home...she clocked of at 3.30..need I say more.

Wilhlem has some funny traits...

Only eats white food
Wont eat saucey products
Cant wear long sleeves becasue they are to itchy
Wears a hat most of the time
Watches the trailers on movies
HATES dogs and has fallen in love with our cat after 4 years
Tells me he makes me grumpy when he's naughty and vise a versa
reads better then an adult - spelling is unreal
Has a photograph memory

Most of all....he tells me he loves me now and gives me a kiss. I dont know if he truely understands the meaning of the word but Id ont care..they are the most precious words that I have ever heard in my life.

Thanks girls..ah feels good to have a thread to come to were everone understands