Aspergers/Autism/Sensory Integration Chatter

[christy]

This thread is started to help mothers encourage and support each other through the different challenges which come with raising a child with these issues (if thats the right term?).

At the moment, I am happy to moderate this chatter thread, so if you have any questions or problems please don't hesitate to contact:

christy7@bellybelly.com.au

Thanks

[christy]

Okay so I'll start. We are in the process of being assessed for whats going on with her. She has issues with sensory integration, and some characteristics of ASD. She's just turned 4 yrs old. She's my first child and has had issues with food allergies as well.

Her first assessment appointment is in week. So I'm getting a bit nervous about everything. We have a paediatrician appointment and she gets assessed by 5 different people who specialise in different areas such as OT, physio, and speech pathology.

[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.

[Diamond75]

Hi,

Thank you for your advice Christy. I think I shall do that. My mum is going over there soon so I will give the info on to her to pass on.

Many thanks!

[christy]

If you can get your hands on developmental information, you could google it, or try to find some more valid information and send them a brochure... something like that. Is your nephew vaccinated? Surely they would ask developmental questions at check ups....

I found it really hard when people would tell me that there was something going on with Matilda. At first I read up about it and got so scared.... then we went on the waiting list for the developmental clinic at the Childrens Hospital. Matilda has sensory issues, but not Autism or Aspergers. At 2yrs old she was going through extreme behaviour like head banging, holding her breath until she passed out and self harm.. She had full on tantrums but now we understand sensory stuff its not as obvious.

I don't want to say "don't say anything" but be as gentle as you can. It can be a very hard thing to face, especially if you are in denial about it.

[Lilly-Pilly]

Fantastic thread Christy!

My DD, who is 6 was diagnosed with sensory processing disorder last year. I have just found the most fabulous OT right here where we live and ashlea has been having one on one sessions with her and its just so good.

As she gets older she is easier to deal with, about 2 - 3 years the sensory processing problems peaked big time and in turn i had a massaive melt down when i saw a peadiatrician that apparently had no clue at all and told her she was 'completely fine' after me spending an hour telling him all her 'quirks'
One month later she was diagnosed by a specialist within 10 minutes of being there.

She still struggles with the ups and downs of her nervous system being out of whack, constantly hyperactive and high strung, very emotional and gets very frustrated easily but she is coming along really well.

Christy, I also read The curious incident of the dog in the night time and LOVED it. My partner bought it for me and I was hooked within the first page, but it really does help to understand a different world and though pattern then what we know.

[monnie]

Hey Dee

So thrilled you have found a fantastic OT and your DD is doing so well!!!

Well done on pursuing help for her! It sounds like it's really paying off!

[~Saram~]

Hi guys, have been posting in the developmental delay thread up til now, great to see there is one for ASD related stuff too.

We got DS offical dx today. Aspergers (whcih is what we have though since 2yo and more so since he was 4yo) Bit of an anticlimax after the past year we have been through with crappy dr who didn't want to listen to us but we have met an awesome OT who specialises in sensory processing and as his behaviour worsned we got the school on board so today when we bombarded the dr with all our 'evidence' (not to mention DS was having a typical day rather than the awesome day he had last time we went to the paed) The dr did a huge backflip and went from a report that stated "mother and father believe he has Aspergers. He does not have this condition" to handling us all the forms we needed today and telling to get them back to him by Friday.

Anyway we embraced DS diagnoises as we can understand him so much better now we have 'some' understadning of where he is at. We are also doing the failsafe diet, anyone else? Haven't seen much improvement yet but we haven't fully committed yet so we'll wait and see.

Looking forward to chatting more with you all! good luck Christy with your appoint hope it goes well

[Loz23]

Hi Sarah,
Am only new here, joined a while ago and havn't done much about it...I came accross your entry when I was looking at Belly Belly for things on Autism. My son is seeing the pediatrician for the first time on the 23rd of this month. He hasn't been 'quite right' for about 18 months but I just put it down to challenging behavour- it wasn't untill I read this book on Autism/Aspergers that I thought 'Bingo' thats it. From what everyone sais the process of getting a diagnosis is long and difficult and I am absolutely terrified as we are at our witts end now. I noticed you're in Townsville and I wondered what pediatrician you saw as we have recently moved here too. Also weather you had any advice for me. This is just so hard because we feel like we've been robbed of the son we thought we'd have and then the guilt sets in because I love him anyway but its just not what I expected and his behaviour makes it really hard to even like him some days but its not his fault!
Any help would be greatly appreciated
Lorin

[~Saram~]

Hi Lorin,

Sorry have only just found this now. Yes we are in Townsville and we have tried a couple of paeds in town and haven't found any of them overwhemlingly helpful but I will try not to vent (unless you want to hear all the gory details :-P

We found the BEST help from our OT Gillian Balentyne, she did an assessment and wrote to our paed to tell him to pull his finger out. We have also had a lot of help from DS schoola and the early intervention team - how old is your son?

PM if you want contact details or just to catch up and have a chat - my home is quickly becoming a make shift OT therapy room so very ASD friendly (except for the undone housework of course)

Don't feel guilty about your feelings, we all have them! I pendulum every day from wanting to scream to just wanting to hug him to pieces. today he drew us a picture with real people eyes, mouth, arms and legs!!!! I was so excited! got to celebrate the small victories

[Loz23]

Hi Sarah,
thanks for posting a reply I was really hoping you would. Sorry I couldn't work out the pm function but I guess this is aplicable to everyone anyway. My son is turning four next Tuesday. He functions well but has some strange habits that seem to fit with Aspergers or even Autism. He head pats...alot, constantly, he is absolutely obsessive, he can't make friends, he has delayed speech and insane tantrums if his routine is interupted, it just feels sometimes like the lights are on and no ones home. Having said that he does show affection on his terms. I don't know for sure yet as we havn't seen the peadiatrician but you just know when somethings wrong don't you? Anyway, we have an appointment with Dr Pat Ryan and I was sooo glad you said Jillian Ballentyne was so good, she came highly reccomended to me from someone elso so I've already gone ahead and made an appointment with her regardless of what the pead sais. How old is your son? I would certainly love to keep in touch, I've made quite a lot of friend here in Townsville but as I'm sure you'd know playdates with other kids can certainly be challenging sometimes! he usually just withdraws and stands on the out side.
Anyway, enough rambling from me...thanks so much though

[~Raven~]

Hi Lorin and welcome

My little guy has come ahead in leaps and bounds since starting school. He has an integration aide that comes in and helps the teacher, class and him. We were really scared about him being labeled or singled out but the diagnosos and the help is getting has made it all worth it.

I found 4 to be hardest. At kinder my son would hide under tables or bury his head in the couch, especially if the other kids were rowdier than usual. His best days were when there was a nasty flu going through the kinder and half the class was off sick. I know your kinder system is different up there but he had 3 years of kinder (2 of 3yo and 1 or 4yo) and was already 6 when he started school. That last 6 months of kinder he seemed to go through a bit of change and a few of his worst traits seemed to settle a bit. They are still there but we are able to get him to recover from an episode a lot quicker now he is older.

it just feels sometimes like the lights are on and no ones home.

He is taking EVERYTHING in even though it may not seem like it some times. Part of the problem with Aspergers kids is that their brain gets overloaded on things because they can't stop thinking about them. When this happens they find it hard to switch between tasks or even listen to what you are saying. It can take a few days for a reaction to something to happen too so if he has a melt down it may not be the events of that day he is reacting to.