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

[paradise lost]

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

[monnie]

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.

[ll80]

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.

[nickel]

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.

[Cricket]

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.

[Ambah]

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*

[Inanna]

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.