Monday, February 14, 2011

Spot On


"Do you want to go outside?" was answered with, "Do you want to go outside?"

"Are you hungry?" was answered with, "Are you hungry?"

While, "Let's pick up your room," brought silence.

Then a day at the park with a friend and her also-two-year-old daughter made me realize that something was up.  While I watched them negotiate the wisdom of removing shoes and tights on a muddy day, I thought, "We are not exchanging information like that."


This was my youngest, the third, and I was no rookie to childhood development, but we had been communicating just fine.  If I asked him a question and he would repeat it (oddly in the exact same intonation) if his answer was "yes."  If he didn't care for my plan, he would not respond at all.  We got through the day without a hitch.



"He's fine.  He talks all the time," said my in-laws, and they were right.  He could identify dozens of dinosaurs, could name, literally, hundreds of ocean creatures and knew by sight the drivers of every major Nascar car.  His vocabulary was huge, but he wasn't telling me anything.


"Take him to the Children's Spot.  And stay off the internet," came wise advice from a friend.  The therapists there identified a speech delay with a soupcon of Sensory Integration Disorder.  While I followed the first part of my friend's advice, I did eventually succumb to the lure of google.  "Is he in the spectrum for Autism?" I finally asked.  "Patricia, you need to stop trying to put a name on this.  It doesn't change anything.  You are getting him exactly what he needs."


And we were.  When I asked the developmental specialist, who reassured me that our son was not in the spectrum for Autism but "certainly quirky," if the therapy "fixed" him, he said, "Yeah, that's funny.  We don't know, but I think it is very unlikely he would be here without it."

His therapy was not covered by insurance and we paid out of pocket.  Obviously, not all families are so fortunate.  Every year the Children's Spot hosts Once Upon a Time, For Children and Their Grown Ups, to benefit the Family Assistance Program which provides support for those families who cannot afford their child's treatment.  This year's event is March 6th from 3:00 - 6:00 and it is an absolutely amazing event for kids.  New this year there will be a table decorating contest judged by HGTV Design Star Jennifer Bertrand, NBC's Amy Hawley and me.  Tickets available here, and there is an early bird discount through tomorrow.  I hope to see you there.

All images courtesy of the Children's Spot.  And, for the record, I am not receiving any compensation for this post or my participation in the event.

17 comments:

Alexis Ceule said...

This was great Patricia... so happy you put it out there for us. Children's Spot is an incredible and admirable program. Thrilled they could help you and vice versa.

@AlexisCeule

Anonymous said...

To the blogger parents that make comments here and there about the various ranges of their children's needs......many thanks from other parents experiencing and navigating their children's needs,
even though we are living at different ends of the earth.

Charlotte said...

Reading your post reminded me of this video posted on YouTube:

"A tale of two brains" (Men vs Women) brains with Mark Gungor

http://www.youtube.com/watch?v=riMjXuJ390U

mary said...

Hi Patricia, Thank you for bringing up the subject of children who are a "little outside the box"--my last (3rd) was and still is outside-the-box. Parents need a place to go where they can be encouraged and taught how to live with and parent children who do not really fit into the usual categories. With the proper (nonjudgemental) tools and support families can have a much smoother time of parenting these unique and usually gifted children. Mary

quintessence said...

Children's Spot sounds like an incredible place. As the mother of a quirky child as well, let me assure you that they grow up to be the most interesting!! I'm sure your event will be a fun and hopefully huge success!

Ruby’s Upcycle Designs™ said...

Wonderful organization! xoxo Beth

pretty pink tulips said...

This sounds like a wonderful event. We are familiar with the "spectrum" and Sensory Integration Disorders....OT and social skills classes. Quirky is a good way to put it. Something just a little off...but yet, my little guy is super bright and funny, really funny.

Basically, it's always nice to know someone else who "gets it". Thanks for sharing this....it honestly made my day.

Cheers to all the little children - no matter how they are.

xo Elizabeth

Amber of Brisbane, Aust. said...

Sounds like a brilliant program...but I wanted to send YOU a big cheers for noticing and checking and following through for your son.

If his teeth weren't growing right, there'd be no question of putting on braces til they were sorted. But when social and verbal skills grow a bit wonky, we are so much less inclined to do anything but blame (self, son, teachers, The Government, food supply etc, etc.)...at least until its almost too late to get in there and make some adjustments.

As a psychologist-in-training (returning to study at 40!) and the partner of a man with two adult sons at the moderate to extreme end of the Autism spectrum (one with Down's Syndrome too) my heart aches for parents working through any social/verbal problems in their kids. It's still something the wider community struggles with, and until they get a better grip, the support needed stays scarce and expensive.

Thanks for sharing your story. I wish you all the very best as your darling boy learns new ways to engage with the world.

casapinka said...

How interesting that I come upon this now. A dear friend of mine has a son with this. Not an hour ago I was commenting to her about how loving and patient she is, almost like certain children are born to certain parents for a reason. She said that she sometimes wondered the same thing. He's a great kid, though and I think she takes your stance of not labelling him - he's just her son. I'm so glad you had The Children's Spot as a resource. Thanks for posting this!

Karena said...

It is wondeful Patricia that you have a child who may become a creative genius, and that you understand his needs!

xoxo
Karena
Art by Karena

The enchanted home said...

I have heard of it because a friend of ours son was recently diagnosed with autism. If I am not mistaken they helped with a fundraiser that they sponsored. It sounds like a wondeful needed cause with a good and able mission. Thank you for talking about something people tend to dance around and rarely feel comfortable to bring up. It is out there and in growing numbers....even for those who just have kids who "color outside the lines" it is always comforting to know you are not alone. Nice post.

Flo said...

Superb post. If ONLY this facility and resource were a national franchise. Lacking that broad scope, I'm overjoyed nevertheless that KC has this wildly-successful program [and supporters] for its regional kids. I love the phrasing "...for children and their grown ups."

Dumbwit Tellher said...

Thank goodness for such a program as Children's Spot. Nothing would be more heartbreaking than not having the means to get the treatment need to help your child. Thanks for sharing your story Patricia. I hope it's an evening that raises many funds and awareness.

North of 25A said...

Sounds like an amazing organization. Thanks for sharing.
Best,
Colleen

Anonymous said...

you and your child are very lucky to get a diagnosis so early in life-
i am still waiting on mine-
at 62 -


john in nc who has always been a bit quirky and outside the box

Anonymous said...

Hi Mrs B.
What a surprise to find this mentioned on your blog. I find it very reassuring when bloggers casually mention their childrens' quirks. My two (6 and 8) are on the spectrum. After an assessment of Sensory Integration Dysfunction we now have diagnoses: both have Asperger's syndrome. We get a lot of assistance here in Australia. But it is tricky path, day by day, week by week, school term at a time. I wish you, and all parents reading, the very best of luck navigating the developmental needs of your three boys at all ages and stages.

cherill w,
Adelaide, South Australia

Louisa said...

I can't remember how I found your blog but enjoy it so much. I was catching up on your blog posts and was reminded of this April 10 Newsweek article - "The Child I didn't Dream Of" by Priscilla Gilman.
http://www.newsweek.com/2011/04/10/the-child-you-didn-t-dream-of.html
Brava to you for writing about something so personal in such an honest, lovely way.
Love your blog!