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I talk about Autism, a lot

It's a Raw Deal But She's Rolling With it.

3/21/2013

5 Comments

 
Picture
If you look at our kitchen calendar you'll see a questionably OCD version of our daily schedule.  Brightly coloured sharpies are used to detail our coming weeks so we don't mix up our many appointments.  Of course, we still sometimes do.  In any case, looking at the calendar reminds me of something that bothers me everyday. It is completely dominated by Kate's therapies, doctor's appointments, special needs swimming lessons etc.  The only place you see Grace's name on our calendar this month says:  Grace:  Dentist 11:00am.  Ugh, poor kid.  It kind of makes my stomach drop at how little of our 'extra' time is dedicated to activities for Grace.  It isn't because we don't try to get Grace involved in activities like gymnastics and swimming; it is because she is painfully shy.  We know that she is reacting to some of Kate's behaviours and the massive amounts of attention placed on Kate right now as I have written about here and here, so we are feeling especially guilty about her anxiety level.   She has been signed up for everything going and she usually spends the time hugging my leg and refusing to participate.  We haven't given up on signing up Grace up for things and working on that shyness but we have decided to give her a few months off from the pressure of having to participate in these classes.  We know it is important for Grace to work through her anxiety but if anyone deserves a break, it is that kid.  So, for now, she  attends all of Kate's therapy sessions and doctors appointments with us.  She loves to be 'team captain' and she adores Kate like no other.  We know that Grace is Kate's biggest ally throughout all of this.  So, I guess I just wanted to send a shout out to all the siblings of special needs children.  If I have any advice for parents in this situation it is this:

1.  These little people have to wrap their brains around issues that adults struggle with.  Be honest and forthright as soon as they are old enough to understand.  That time will vary and you and only you can make that decision. This is one the books, websites, and medical journals cannot answer.

2.  Allow them to be as involved as they want to be.  Grace, enjoys attending Kate's sessions (probably because they are play-based) but at some point I fully expect her to ask for a break and she will be welcome to it.

3.  Make sure you dedicate special times where the focus is entirely on them.  I am taking Grace away for a long weekend soon and it will be a much-deserved Gracie-centered weekend.  

4.  Allow them to complain about their sibling.  In some sense, they may feel ripped off (back off haters, a four year old child does not have to see autism as a gift) and they may need to express how bad it feels.  Some children may not want to say it to mom or dad because they can sense you have enough on your plate so please give them a cool 'aunt' or a grandma that they can complain too.  

Have any advice to share?

5 Comments
Grama
3/21/2013 07:21:28 pm

Grama would love to keep Kate so you can take Princess Grace on a "Gracie Holiday" :)

Reply
Hezzie
3/22/2013 01:04:18 am

This post was very well written,Shanell.You have a gift with the written word,it somehow comes across to the reader as if the reader is on this very personal journey which began with AUTISM,and is now expanding like a ripple affect across the many emotions that you and your little family are experiencing on a daily basis.It is so heartfelt,and lovingly honest...................I look forward to your book(especially the one for CHILDREN,on Autism).
LOVE AND BLESSINGS ALL OVER YOU ALL.........HEZ..XO.

Reply
Shanell
3/26/2013 10:42:31 pm

Thanks Hez :) I will write that book. Someday. Maybe Grace will do the illustrations :)

Reply
Janet Hunt
3/22/2013 09:01:59 am

Great post Shanell! All of you are an inspiration to us all! Keep up the wonderful work you are doing.

Reply
Shanell
3/26/2013 10:43:29 pm

Thanks Janet. Thanks for reading. Now that you are a skier, I will see you at the hill. :)

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