My daughter is being assessed for ASD over the coming months. ASD = Aspergers syndrome. We are going through the Mater Childrens Hospital - Behavioural and Developmental clinic.
So next week is the paediatrician and the auditory appointments, than in a month its the OT and the Physio, than a few weeks after that its the psychologist. Then they all get together and assess their findings & we come back for a final work up, placing her either on the Autistic spectrum, or not.
We know Matilda has "issues". She was diagnosed with a milk allergy last year & since then we have seen some amazing improvements. Especially when taking most chemicals out of her diet as well.
BUT her sensory stuff is just as bad if not more obvious than ever. I had a huge cry today over it. I think I'm so upset now because its more obvious than before... she has improved other behaviours so much that these seem so full on compared to "normal".
I've got so much going on in our family right now... I can't talk about it too much with DH as he gets so upset... we do talk but obviously I need to debrief way more than he does. I feel the need to talk with others who go through this, to comfort each other and to get it out.
We couldn't go to the baby expo today, I wanted too, but we just couldn't because of her. I hate it, I hate it that we can't just go somewhere, because it scrambles her brain. We can't just go to the shops. Who else deals with that?? Other mum's say "oh yeah its hard with two"... ummmm.... hard? Does your child knock trolleys over? Do they run out in front of cars in massive confusion afterwards? Do they bite, kick, hit and scratch you? Do they scream? I can say 3 out of 5 times it happens for Matilda... with or without her sister with us. Just going somewhere that has multisensory stuff going on... she's 4. Its a massive effort in restraint and self-control taking her to the grocery store.
Today, I had to go because we were out of rice milk. I spoke with her about it 5 times before we left. I said we would go down 3 isles, and at the end, after we paid we could go on the car ride and then we would come home. I had to talk with her about fire alarms as they are a huge fear & last time I took her to the shops there was one. I had to talk about the trolley and what I wanted her to do before we got there. She survived it today. But it was an all morning thing, preparing her etc. We've even gone so far as to have shopping trolleys & set up isles at home to practice what "good" behaviour is.
Why did it have to get so hard? Why can't I just run to the shops to pick up rice milk?
Huge hugs hun. I haven't been in your sitaution but I had a boy in my class last year who had aspergers. We found picture stories helped him, sequences on what would happen in a situation/event. He also had cards made of emotions to say how he was feeling. I can get hold of some resources if you would like?
BTW I think only the really special mums get given the challenges because the lord knows they can cope but it doesn't make it any easier!
OH babe...I so feel your pain honey. How old is Matilda now? 3? 4? this was a really rough stage for Wilhelm, he was very distruptive and screamed at the drop of a hate. He also began punching himself in the head and hurting himself physically if things were out of line and **** he couldnt be touched what so ever. I remember having to tell people off out shopping because they would touch him and he would flip really bad. I couldnt even drive into coles carpark without the screaming starting and would recluse and stay home.
Its a hard road, this mother hood and its especially harder when your baby isnt the child you expected to be. No-one ever knows the pain and torture you put yourself through as a mother when your baby is not 'normal'. You point the finger at yourself and continually ask what can I do to help her/him? Why did this happen to my baby?
Honey - its takes an extremely wonderful person to be a mother to such a special needs child. It may not feel like it at the moment but you'll forget all the bad things in time when she smiles at you.
My advice is babe get an MP3 player so she can take it with you when your shopping with head phones. I know many mums of ASD children that have them and have noted a difference in behaviour in their children. Its like they can switch of whats happening around them and they have their own world of their music to listen to. I have done it and its one of the first things we pack when we go away. I also pack some pens and a drawing pad as Wilhelm likes to draw and his attention is on that and not the things that upset him.
My other advice is..........grieve the child that you were ment to have. Its the first step into coming to grips of your childs behaviours. Cry babe...its the best medicine, honestly. You'll feel somewhat reborn as a mother after yourve done it and can guide her with a clearer head.
And as I said in a different thread - im ALWAYS here for you. Email me anything I dont care. A burdern spoken about is one less stress on you!
Aaaahh Christy once again I have to say that I wish we lived closer. Please know that I'm praying for you all. I know the frustration, grief and pain of having a child who doesn't neatly fit societal "norms" (although it's in a different way to what you're facing). No advice from me, you're doing all the right things. I think I'll do a bit of "listening" and get back to you
Oh Christy, big hugs hun. I wish there was something I could do to help.
The great news is that you have her in for assessment, and once you have a diagnosis you will also be given some strategies for dealing with it. I know my friend found it a huge relief when her DD was diagnosed as autistic, as they finally knew what to do to help her.
Christy, Matilda is an amazing child, and this is a credit to you and your love, patience and persistence. You have spent so much time and energy on finding out causes for, and solutions to, the challenging behaviours. I dare say that very few other parents would have discovered the dairy allergy as early as you did. Or to have found a kindy option to which she has responded so well. Everything you have done for her has helped her to be such a wonderful child now.
This is such a challenging thing for you to deal with and I think you are amazing for coping as well as you do. Take care hun, vent away, and find some time to do something little for yourself each day. You deserve it!
Thanks girls, its a tough day here. I wish I lived next door to all of you, if only to have a coffee on these days and be reminded how beautiful she is.
Maz, I do think a MP3 player could help thanks for that!! I know you are here for me, hearing you talk about W helps heaps.
Christy, how have things been this afternoon? Is there anything you can do to help alleviate the situation until you have confirmation of a diagnosis at all? Like timetables etc to structure her day (forgive me if you already do stuff like that with her - trying to think of ideas for you). How do they handle problems at Montessori or is she different while she is there? What do they do to help her through her day in relation to the other kids and activities?
Love to you hun, I know this has been going on for a long time and I know your *tank* is almost empty, so I hope that things can be more definate for you soon kwim?
My daughter....vent... chatter please
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once again I have to say that I wish we lived closer. Please know that I'm praying for you all. I know the frustration, grief and pain of having a child who doesn't neatly fit societal "norms" (although it's in a different way to what you're facing). No advice from me, you're doing all the right things. I think I'll do a bit of "listening" and get back to you 
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