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Thread: My daughter....vent... chatter please

  1. #1

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    Default My daughter....vent... chatter please

    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?

  2. #2

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    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!

  3. #3

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    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!

  4. #4

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    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

  5. #5

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    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!

  6. #6

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    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.

  7. #7

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    Hi Christy, just wanted to give you a massive

  8. #8

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    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?

  9. #9

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    Montessori does things at certain times, so they are quite regulated. Montessori is based around sensory education, so all the activities are geared towards one sense.... its quiet in the rooms (amazingly) and they do one activity at a time. When she went to a community kindy she had heaps of issues, she didn't eat, sleep or stay with any one activity.

    I don't mind hearing ideas in fact it helps heaps even if I've already tried. I mean if I've tried them, than its one less thing to worry about lol.

    This afternoon was fine for Matilda (Jovie was sick with tonsilitis), but thats the thing today, this morning was okay as well but it just is hard work to do a simple task with her, and I can't do what I want to do like go to the expo.

  10. #10
    paradise lost Guest

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    Hey, can i second the mp3 player!

    Or alternatively, if she doesn't like music in her ears, you can actually buy ear protection (like earmuffs) for kids with sensory processing problems. Google Peltor ear protection for kids. I have several aquaintances with special kids who deal poorly with noise and i have one myself!

    Now, by NO MEANS is DD on the Autism Spectrum, but she is obviously bothered by noise more than most kids. Fire alarms, hoovers, food mixers, all have her hysterically begging to go in the meitai on my back and crying and crying for up to half an hour after the noise has stopped. I have sound cancelling headphones (for listening to music through) which i put on her when she's panicking, and that seems to work great for now.

    Best of luck hun Try to remember that as she grows ALL the differences in her mind, some of which will probably blow your socks of at how incredible she is, will become clearer. THere was a boy with ASD in my statistics class at Uni, couldn't have lunch in the dining hall but he could do root functions in his HEAD!

    Bx

  11. #11

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    Hi Christy

    So sorry to hear that it's been a tough day.

    Just wanted to say that I'm thinking of you and Matlida.

    I know it must seem ages away, but help IS on it's way. Your appointments will help to figure out what is going on.

    There's a great book that the OT I worked with would often recommend for kids with sensory issues. It's called "the out-of-sync child"...and is very helpful in providing strategies for dealing with sensory problems. And there is ALOT you can do to help these kids...it's just about knowing what it is do.

    All the very best.

  12. #12

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    When I was studying and working with children with varying degrees of ASD a mum gave me this poem. I was so grateful to her as it gave me a small insight into what you fabulous mums go through.

    You may have already read it.

    I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this ...

    When you're going to have a baby, it's like planning a fabulous vacation trip ? to Italy. You can buy a bunch of guidebooks and make your wonderful plans. The Colosseum the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. Its all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes and says "Welcome to Holland.?

    ?Holland?!?? you say. ?What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

    But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place.

    So you must go out and buy new guidebooks. And you must learn a new language and you will meet a whole new group of people you would never have met.

    It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy and they're all bragging about what a wonderful time they had there. And the rest of your life, you will say "Yes that's where I was supposed to go. That's what I planned".

    And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

    But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

  13. #13

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    Hey Mate.
    ***** huh. You doing good girl. and at least you know it's NOT you! it's not your parenting! No matilda doesn't just need a "good smack". I can't believe my s-i-l deals with this and 2 other boys and is a single parent. So bloody difficult. BTW the diet is definitely helping him heaps.

    Keep venting, and letting it all out, so much time and emotional energy is going into this. again - it's not your fault! you are not a crap parent - take comfort in that. I wish I could help carry all of this for you mate, but there's only so much anyone else even your DH can do.

    You need to read what Mantaray wrote over and over again until you believe it:
    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.
    What a frustrating week it's been for you!
    Love you.

  14. #14

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    Just wanted to pass along a hug for you Christy - the normal trials of parenting are challenging enough, without the extra challenges of something like Asperger's. I thought what ll80 posted was a nice perspective (after I got over the offense, being Dutch and all... ) I really hope today is a better day for you!
    BTW - I understand Bill Gates has Asperger's.

  15. #15

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    Christy.
    Totally agree with Mataray as well. Matilda is a gorgeous, talented little girl, and a great credit to your parenting.

    I think I will be repeating suggestions already made, however the psychologist Aidyn saw had some similar tips to dealing with every day stresses, such as music through headphones, sound reducing headphones, and also social stories - which will prepare her for the events ahead.
    Another suggestion is to make up a pictorial story of the events that will happen in sequence for the entire day, and you can swap and change pictures each day, depending on what is happening, to help them mentally prepare for the day ahead. I have found pictures to work really well with Aidyn, moreso than just using words to prepare him.

    Something we also do to help relieve anxiety (and also as an exercise to help with his speech) is to write a little book at the end of each day, with any major (or minor!) events that happened (in simple sentences) and a crude drawing to go with them. (with Aidyn's book we also concentrate on syllables, for his speech). Anyway, this end of day book has helped him with his anxiety considerably, as its a method for him to vent and communicate his stresses. The other day he fell down the stairs and was very upset, but then quietened down for the rest of the afternoon. When we added this event to his book that evening, he went through a whole range of emotions again (for hours!) trying to deal with and process the event properly, and it was obvious that it had really stressed him - moreso than what he was letting on. It was very therapuetic I think, and certainly made me wonder how much anxiety he has carried about things in the past, without having such a method of expressing it.

    Anyway, think I'm rambling now, but just want to let you know that I'm thinking of you guys. *hugs*

  16. #16

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    Christy I just want to give you a hug. I have lived this with my DD13. It has been hellish. I only wish I had not braved it out and had the diagnosis sooner. You are a wonderful mama doing all the right things.

  17. #17

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    Christy

    Just hoping that things are alittle smoother today then they have been in the last few weeks

    Stalk your posty to babe..im sending something your way that I hope can help you a bit

  18. #18

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    awww Maz Thanks! I have avoided things this week, went for two playdates but both in enclosed parks. It was hard today seeing her have social issues... I just want to ring the necks of the other kids & go in there fighting for you.

    On Tuesday she was knocked over in a round sort of swing... its 3 swings going in a circle, and because she was so dead set on getting out, she didn't notice she got kicked over and over and over again. She had a little cry, but then with blood on her nose, she wanted to do it again!!

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