Aspergers/Autism/Sensory Integration Chatter

[Loz23]

thank you Raven for your welcome,
its so nice to have some people to share this with, knowone else in our family has experienced this and my husband is sick of talking about it, I think he's actually grieving the loss of the 'boys boy' he thought he'd have as our little boy can be quite shy and withdrawn at times, particularly in a group situation.
Its so hard to know whats going on in his head some days! we're all new to this and I guess we'll know more when we see the pead and the OT. I certainly understand the kindy dilemma, we used to live in New South Wales, when he was there he went to a 30 place kindy/daycare since he was 4 months old. He went really well there, the staff were lovely, it was a small group and it was all very familiar for him. When we moved up here he had serious issues adjusting, when I'de drop him off at the daycare (a 300 place centre, because they are all enormous up here) he used to run and hide and cry in the cubby house the minute I left, every morning the same place...I couldn't take it, so I've pulled him out and he's just at home with me now, but I don't know how that will go when he gets closer to school!

[christy]

Loz welcome, I understand the fear of child care.... I tried Matilda at a community centre and she freaked. She wouldn't eat or sleep while she was there. She would come home and scream until she went to sleep. It was so sad, so we pulled her out. I found a Montessori nearby and that has been amazing. Montessori was developed for children with special needs, so its different. They focus on one sense at a time. At her kindy they have specific Montessori hours and the other time is playing outside. There are 5 autistic children in Matilda's class with her, as well as 2 developmental delay children.

Next year is her school starting and its so scary! I have found an independent school where we will be living that has 16 students, so I hope it goes well!

[~Saram~]

Hi Loz,

We absolutely should catch up, play dates are impossible with other nonasd kids as Xander doesn't mix or the other kids bully him and it makes it sooo hard as the other mums don't understand why you don't want to "drop round for a coffee and let the kids play" Not sure why pm's won't work, maybe cause your a new memeber not sure but my email is sarah@naturalparent.com.au If you email me I can give you my number. We are actually going away for 2wks to Brissie - always fun but perhaps we can find time for a chat after that?

Pat ryan is apparently very good however i have heard his bedside manner is quite abrupt. Some other parents have suggested that he himself suffers from Aspergers which is why it is an area he specialises in. Are you seeing Gillian before the paed or after? She will do up a great report which is good to show the paed. Also download the autism/aspergers checklist and go through it with your partner before the appointment. The write down all the little incidence that pop into your head while doing the checklist and take that to your appointment.

We were unprepared for our first paed appointment (Dr Frischman) and walked out feeling useless and stupid. Of course that was the day when Xander walked in looked the dr in the eye and said hello without being prompted then played nicely with the toys :-) He sent us to a psychologist (who was lovely but didn't give us any straegies we weren't already using) and said to come back in 6 months - which we didn't. it was only after talking with gillian and the early intevention team (based at vincent state school) that we had the confidence to go back and yes that day DS was having doozy of a day and we walked out with a diagnoises.

Where abouts in townsville are you? Xanders school is brilliant his prep class has 12 students and he has come SO FAR! this year and they are working really hard to make sure that it continues next year. Annadale Christian School is where he goes and they have a preprep class 5 days a fortnight for 4-5yr olds (but it isn't cheap) there is also aeiou and I think they specialise in early childhood autism/aspergers.

[christy]

Ohhhh Sarah! I'm in Brissy.... When are you here?

[~Saram~]

Hi Christy,

We arrive Sunday 21st and leave around the 1st ish? Where about's in brissie are you?

[christy]

We are in Wynnum, directly East from the city. 15 minutes from the airport.

[Loz23]

Hi Christy
yes I agree Montessori is wonderful...and the worst part is that he used to go to one. When we moved up here I got him into a small Montessori daycare, it happened to coincide with his worstening behaviour and increased shyness and fear of social situations, at the time Aspergers/autism hadn't even crossed our mind. My husband is a real 'blokey bloke' if you know what I mean, he thought that his apparent 'wimpiness' was due to the 'tutey fruity' school I'de put him at. It also happened to be an hour away from where we lived and the hours didn't coincide well with our youngest daughters sleeps at all....so we moved him to a new centre that opened near us...that went so badly I pulled him out after about 4 weeks and now he's at home with me and I can't get him back into Montessori but fingers crossed the school Sarah is talking about might have a place for him Since my husband and I have read up on Autism/Aspergers he's a lot more understanding of what was/is going on for him so I hope we'll be better able to help him now...how old is your daughter Matilda? have you been aware of her Autism/Aspergers for long? lots of luck with school next year...I'm sure it will go OK you sound like you've found a nice small one so that in its self will surely help, I'll keep my fingers crossed for you anyway!

[christy]

Loz we are still in the assessment phase of life atm. We have definately found some sensory integration issues with Matilda and have been told that yes she does have issues with it. But through the Mater Hospital there is a developmental behavioural unit that does assessments with paed, physio, auditory, OT and speech... so we are still attending sessions through them.

Well we just had another assessment today by the physio. I'm a bit gutted. Funny isn't it, you expect a diagnosis or a result... but when you get one you are still gutted. There is a bit to swallow and process and the physio said he would write it all up for us to help us understand.

We didn't expect anything through the physio. We expected this one assessment to come back fine. But she drags her right foot, is one side dominant with her hands, and the opposite with her feet. She can't even stand on her right leg and balance which we didn't know.

She got all stirred up and stressed at the end so we left a bit confused about it. One of the Paediatricians was there from the behaviour unit & she said that what is going on has a lot more leaning towards Aspergers than they initially thought with her. This is so frustrating... I know they can't diagnose until they are older, but this week its frustrating for me, last week it was okay.

[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

[christy]

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.

God Matilda is almost 4 1/2... I'm feeling this today. I know I have to grieve the child Matilda should have been, but I almost can't go there for fear of complete break down. I have my melt downs over it, but I'm worried that I can't come back from that. I'm sitting here crying thinking of it & I don't want to let go... but I know I have too. I know I have to do this. I think I will need a few days off for it.

[maz]

Honey Im still having melt downs and he's 6 1/2 now. I could have strung him up and feed his to the crows today because I became so sick and tired of him asking me how many more sleeps until school again. Ihave the worst tension head ache from him and tonight I just let rip int he shower and bawled my eyes out. I feel so much better afterwards.
in all honesty..i think the first step to helping our kids is to get the grieving started. Even though I knew something was wrong...i was still holding onto that hope that Wilhelm was a normal child and that I was the one that had the disability.

Just breath babe and take one little step at a time. It wont happen overnight and sometimes its 2 steps forward, one step back..but every little inch forward in forward

[MantaRay]

Just Christy. I wish there was something I could say or do hun.

[MistyFying]

Drat, just lost my post. Anway, the short version: what you're feeling is natural, don't fight it, progress through it. Courage, strength and perseverance.... three keys to hope. And finally, my heart goes out to you Christy. I understand the turmoil - I have walked that particular road myself over the past 7 years.

[~Raven~]

Christy

It must be so hard to not have a clear picture of what is going on with Matilda. She is a beautiful and complex child. I think it is hard for Drs sometimes to make a formal diagnosis because they are all so different, though cut from a similar cloth.

[christy]

oh thank you all!!! Its so helpful to be allowed to feel this way. Maybe not today while I have 2 girls.... but maybe on the weekend I'll let myself go.

This morning Matilda came in & woke me up and asked me around 15 times if she was going to Montessori.... She is supposed too, but she's coughing so I'm tossing up. She NEEDS to know.

[MistyFying]

Christy last night as I was supposed to be sleeping I had an idea.... In DS's class there is a little boy with sensory integration issues - his present quite differently to Matilda's though. Earlier this year he was having difficulties in class because he felt no one would be his friend (he likes to hug and kiss kids a lot and likes to hold their hands etc and kids just didn't understand that and so kept away from him). His Mum made a book about him on her computer, introducing him and talking about why he did some of the things he did and suggesting possible things the kids could do/say in response to her son's actions. The teacher then sent it home to a different family each night and asked the parents to read it with their child.

This really helped parents and children understand this boy's sensory issues, and the children were far more accepting once his behaviour was no longer an "unknown" to them. I think it helped the boy too, as he was receiving consistent feedback if he did something inappropriate (eg if he was kissing them the kids would say, "thank you for your kisses. I'd rather if you just sat down beside me and we played with these ..... together.")

Anyway, I don't know if that helps or if it's an option for Matilda's last month at her school.... it kept me awake last night so I wanted to pass it on. Hope you have an enjoyable day with the munchkins

[christy]

I think thats a great idea Christine. At Montessori if someone starts with a disability they put a picture of the child with a description in everyone's pocket so that parents can talk with their children. Matilda & I talk all the time about "Maya and her wheelchair" so much so she see's Maya and thinks her wheels are cool and starts asking her about the seaeme street characters on her wheels.

I think for school it will be a great plan. I'll talk with Miss Ann, she may even make it into a weeks activity to help everyone understand. Like have the older kids read books about it and have the younger kids to drawings of brains or something.

[~Saram~]

Maz, your post brought tears to my eyes, I think it embodied everything we have all felt!!!!

Christy - It's so frustrating isn't it! Xander went from a diagnoises of PDD to Aspergers within 8mth. Who knows where we will be 5 years from now. Xander's teacher has similar stories which they share at story time as Mistyfying was talking about and there is a great picture book called "all Cats have Aspergers." it's a start although frustrating as obviously not all people with autism/aspergers react the same way to stimuli but it was a good book to share with family and friends to help them begin to understand.

As for greiving the diagnoises I swing from mourning over things that he will never be interested in/miss out on to happy that although he is who he is there is a place for him and by understanding his diagnoises we can help him and others know how to approach situations - does that make sense? The day we finally had a dr acknowledge that yes this child has some challenges Bob and I felt a wave of relief! He wasn't being naughty or uncontrollable he just perceives things differently and reacts differntly. We are eternally blessed though as DS has a thing for rules and a great memory so if he reacts inappropriately we can give him a rule to follow that helps him adjust and we use his social stories a lot to help with this. Once we figured out these rules it stopped a lot of behaviours like kissing/hugging/licking people shopping centre break downs etc. We give him other outlets and rewards which work 60-70% of the time. I sometimes wish I had a shirt that said "I have aspergers google it before you judge my behaviour" along with one that said "I dressed myself this morning and yes I like my socks pulled up :-)"