Tuesday, October 20th, 2009
New Blog Link

Update: The Special Needs Blog has moved!

All Today's Parent blogs have moved over to a new platform.  To keep following the Special Needs Blog, check out this link: http://blogs.todaysparent.com/category/specialneeds/

Looking forward to connecting with you!

Amy

Posted by Amy1
on Tuesday, October 20th, 2009 at 9:24:22 PM
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Monday, October 5th, 2009
Being Our Kids' Translators & Protectors

Anyone watch Grey’s Anatomy on tv last week?  A mom (age 60) arrives in the ER with a huge pulsating tumour in her belly.  She’s accompanied by her adult son (living with paranoid schizophrenia) who is convinced his mother has been impregnated by aliens.  One thing for sure—this tumour has got to go or the mom will die, Dr. Bailey insists.

Here’s a snapshot of the their conversation:

Mom: “I can’t have the surgery because there’s no one to take care of my son. I have no family and my husband walked out long ago.”

Dr. Bailey: “We’ll call social services and get someone to take care of him while you’re in hospital.”

Mom:  “No—that’s impossible.  They won’t know what to say to keep him calm. They won’t know that he panics in certain grocery stores. And they won’t know how to distract him from the voices in his head. I have to hire someone and train them.  It would take at least a week.”

Yes, it’s just a medical tv soap.  But this scene teared me up because I relate to this mom.  Jack and I both know Talia inside and out. We know that often she says “no” when she really means “yes”.  We know she wiggles her legs when she’s stressed.  And we know that sometimes she laughs or blinks hard when she feels like crying. When others don’t understand her, we often explain her sentences. And when she’s slow to answer someone’s question, we sometimes answer for her (yes—a terrible habit.) 

We’re so used to being her translators in the world.  And since we understand all her glorious quirks we can make life as smooth as possible for her.  But this is not a long term solution.  I sure don’t want to end up like the mom on Grey’s Anatomy who is the only one who understands and soothes her adult son. 

How about you?

Posted by Amy1
on Monday, October 5th, 2009 at 10:01:16 AM
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Friday, October 2nd, 2009
Party Planning

In just over a month Talia’s having a birthday. So the party planning conversations are beginning.

Me: "So Tal, do you want to invite lots of friends or just a few?"

Talia: "Just a few. Maybe Matthew and Haley."

Me: "How about those nice new girls in your class? Want to invite them?"

Talia: "Um…..don’t think so."

Me: "And what do you want to do at your party."

Talia: "Maybe go to a movie…maybe bowling."

In the early years I took the lead in party planning. And we always invited kids with their parents in tow. When Talia was 4 she went through her Franklin the Turtle phase. So we borrowed home-made turtle costumes from a neighbour and I decorated a cake with a decent likeness of Franklin. Sadly that was the beginning and the end of my cake decorating days. To top it all off we even bashed a piñata and played games with a giant rainbow parachute in the yard.

Guess that's when I had more energy!  These days parties are mostly pizza at home and an outing.  We’ve taken party guests to: a kids' play at our local theatre, the movies, bowling, an indoor playground, and glow in the dark mini golf.

So our annual quest for a party that works begins. As always there’s the complicated issue of trying to get phone numbers for her friends who also have special needs. Then we need to ask parents if there’s anything we need to know to keep their child safe and happy at the party. Then there’s finding an activity that everyone can actually do and enjoy. And of course Talia has to love it, because it’s her big day.

Often our kids don’t fit the mold when it comes to birthday celebrations. One friend’s son hates opening presents since it’s stressful for him. So she always requests that people NOT bring gifts. A lot of parents I know forego kid birthday parties completely and instead invite family and their child’s support workers out for dinner to celebrate.

Party planning can be bittersweet. Sometimes we realize that our kids really don’t have friends to invite to a party. Or we can’t remember the last time our kids were invited to someone else’s birthday party.

This year Talia and I need some new ideas for a super celebration. What birthday parties work for you?

Posted by Amy1
on Friday, October 2nd, 2009 at 8:43:41 AM
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Wednesday, September 30th, 2009
Calling All Parents of Girls

When Talia was little I never could picture her growing up. But now she’s a full-fledged teen. And now we’re dealing with adolescence and hormones and body changes layered on top of autism. Of course every kid is different. Luckily Talia has a sunny optimistic personality--and that eases the way for us. But navigating everything from bras to periods to zits is tricky and relentless. And who do you talk to about this stuff?

Good news everyone—I found a great resource for us.

If you’re the parent of a girl with ASD (or other developmental disabilities) check out "Girls Growing up on the Autism Spectrum—What Parents and Professionals Should Know About the Pre-Teen and Teenage Years" by Shana Nichols with Gina Moravcik and Samara Pulver Tetenbaum (Jessica Kingsley Publishers, 2009).

This book feels like a lifeline for me. It’s inclusive--talking about girls across the spectrum (classic autism, pdd-nos and Asperger’s Syndrome). Blending research, family stories and the authors' experiences as psychologists and professionals, it offers insights and advice on tough topics such as:

And the list goes on.

The book also includes ideas about helping girls develop self-esteem, social skills and safety. In the chapter "Keeping Girls Safe: Promoting Personal Safety in the Real World" the authors present horrific stats about abuse and females with cognitive disabilities. They quote one national study that found between 39 to 83% of females with a developmental disability will be sexually abused before they reach age 18.

Thankfully they also include abuse prevention strategies that we can teach our daughters at home. After reading this book, perhaps we’ll have a tool to advocate for life skills and personal safety courses at school and in the community.

This book feels so validating for me. But I also feel overwhelmed. There are endless important skills that I should be teaching my daughter. And it’s hard to know where to begin. I think I’ll put the book away for a bit, re-read it and set some goals.

Posted by Amy1
on Wednesday, September 30th, 2009 at 9:20:30 AM
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Monday, September 28th, 2009
Hubbies & Humour

The other night I stood in the kitchen wishing I didn't have to think about dinner. Then the phone rang. It was Jack on his cell.

"I'm almost home," he said.  "I'm at the Country Market and I’m picking up some corn."

"Really?" I said. "What line do you find works the best?" (Get it? Picking up corn--what pick-up line do you use? Ha Ha!)

"Great ears," Jack said without missing a beat.

We both laughed hysterically on the phone. So in sync. Often we plan date nights and getaways to keep connected. But it's the everyday stuff that glues us together. Sometimes the joyful moments sneak up on you. Like when you’re making dinner—and your hubby’s picking up corn on the way home.

Guess it helps when they've got great ears.

Posted by Amy1
on Monday, September 28th, 2009 at 9:18:27 PM
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