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Window To Our World

Special Needs: A Full Time Job

July 20, 2010

With my mother being a Special Education teacher, I grew up hearing about children with special needs. I had some understanding of the problems they faced, but I never realized how much a parent is affected by having a special needs child, too. When I was younger, I assumed it was like having a typical kid who just needed a little extra attention at school and, maybe, at home. Almost three years ago, when my daughter was born with special needs, I found out that I was very wrong! She was born with a genetic condition called Larsen's Syndrome which caused her to have multiple physical abnormalities.

See, special needs kids don't just need a little extra help at school and at home. Sometimes they have doctor and therapy appointments… A lot of them! For nine weeks after my daughter was born, we were at the orthopedic surgeon's office once a week for serial casting to correct her feet and knees. Then we were there once a month until she was six months old and had her first surgery, and then every three months after that. Starting at four months old, we were at the neurosurgeon's office every three months for an MRI or x-ray of her spine. Starting at six months old, she began physical therapy at a local nonprofit group that provides early intervention services to children with specials needs. She was there twice a week. Then we had an early intervention therapist come to the house twice a month for physical therapy. Starting at fifteen months old, we went to private physical therapy once a week. At about 18 months old, she started seeing a GI every three to four months for reflux and slow weight gain.

So there were some months when we would have sixteen appointments to attend. That is over half the days in a month dedicated to my child's needs. Did I mention I'm in school too? Yeah. Talk about hectic!

Fortunately, as she has gotten older, the appointments have lessened. We now see the ortho only once a year (contingent upon how well she is doing). Private physical therapy is every other week. Therapy at the nonprofit organization is just once a week now. In August, she will be going to preschool two days a week for three hours a day, and the therapy at the nonprofit organization and home therapy will stop.

Gone are the days that I thought a special needs child only needed extra help at school and home. I wouldn't change it for the world though!

Mrs. Speech and the Funky Dance

July 6, 2010

Not to keep beating the drum... But it's just so frustrating sometimes.

Dealing with people who are so hung up on Trevy's cute factor. The but-he-looks-so-normal people. They are usually the people who only see Trevor for a few minutes out of the week. Or in passing. They're the ones who miss seeing the-more-than-meets-the-eye Trevy. Because seeing Trevor cry through a cluster of seizures has a way of balancing out the looks-so-normal factor.

I remember wanting to bang my head against the wall in our beginning days with Early Intervention.

Our first (ink still drying on her degree) Occupational Therapist actually looked me in the eye one day and said, "I work with VERY affected kids all week. And I really don't think your son needs any therapy."

Just like that!

She couldn't see past the cute. And we (with a this-feels-rather-good-flare) fired her for it.

But sometimes one of your child's team members comes in. And you just click. Connect. In the heart. You know it's not just a good fit. It's the right fit!

And that's the way it was with our Mrs. Speech.

I know you're supposed to keep professional boundaries n' stuff. But it's hard not to breech them when your Mrs. Speech cheers louder than you do with each accomplishment! And cries with you during seizures. Those moments blur the boundaries.

And our Mrs. Speech has a realistic bent. Which was so refreshing in that weird "I don't wanna go there but what if my child isn't okay?" kinda way.

She would always say things like, "I can't promise you what Trevy's future is. But I can tell you today... he's amazing!"

Blur, blur, blur, go the boundaries...

Which is why it was crushing (for her too) that our time together was being cut short by a move. Half of our hearts were thrilled for this new chapter in her life. The other half was (and still is) boo-hoo-ing like crazy!

Of course we couldn't let her go without a little gift. After all, the gift she gave us this past year has been priceless.

I knew immediately I wanted to give her a star trinket I had purchased myself in Arusha, Tanzania. Bronzed from the African sun. And speaking Swahili.

Because we only have a handful left, I tend to be selfish with them. But I knew she would dig it big time! So one went in the bag… Along with an adorable picture of Trevy...

The picture is our absolute favorite!

The sparkling eyes...

The mischievous grin...

The so-beautiful-I-think-I might-die face...

Tears welled up when she opened the little gift bag. As expected... she dug the trinket. But the picture of Trevy truly melted her heart. She said it captured everything she knows he can be, and she would keep it forever!

And we hugged goodbye last week.

The sad tide, although less strong, has been lingering. Sometimes sadness does that. It's just so hard to shake.

Which is probably why I sobbed as I read her letter, postmarked from her new home. Delivered with the Saturday mail. And even though it's super personal – and you may not sob like I did – I want to share how she sees Trevy from her perspective: "The Tanzanian star will hang on the wall and be a guiding force for me. Trevor's little mug shot will grace my work office. He will be a reminder of what the French call joie de vivre, to always remember to take pleasure in the simplest things in life.

"It has been a real pleasure meeting and working with you all, especially Trevy. (Personal side note: It melts my heart when others call him Trevy) Though Trevor's words are emerging, he communicates beautifully through body language, facial expressions, and overall body movement. I will miss his funky little dances that show excitement. I think the thing that amazes me about him is his zest for life. Even when he has had a rather tough cluster of seizures, he bounces back and is raring to play and explore, and he continues to make gains. His outlook on life is the perpetually "half full" theory and I feel ashamed when I complain and kvetch about what ails me. He is truly an inspiring little boy and I feel that I am a better person to have known him."

After I pulled myself together, with the letter lying in my lap, my heart felt pinched. Sometimes I allow the sadness to soak... and seep... and saturate... until everything is colored sad. But that's a skewed picture.

Because the reality is that between the sad there is so much to celebrate. The gains that Trevy's making. "Pessimistic Me" tends to focus on how slowly they come, rather than allowing my heart to swell that they are still coming! His funky little dances communicate so clearly how happy he is! Truly. Deeply. Happy. For some reason I tend to remember mostly the tears and seizures, instead of letting myself dwell on the fact that my son can feel happy until his little body can't hold in the funky dance. His zest for life shines so strongly that even an amateur photographer (that would be me!) can manage to capture it.

I've been so sad about how tired he is after a cluster instead of embracing the reality that he doesn't stay down! It may take five minutes... or ten... or twenty. But he doesn't stay down! He's eventually climbing on the dining room table again or dancing precariously on the windowsill!

The sad that saturates my heart so often prevents me from seeing how "half full" Trevy lives.

He is so inspiring!

And it took a letter from a very special soul – our favorite Mrs. Speech – to help me wipe the sad from my eyes, and see MY son. My beautiful... zest for life... glass half full... inspirational son. I need to tuck this letter somewhere easy to find, to read on those sad days.

And I'm thinkin' that maybe more people than I know see Trevy as a whole. A flurry of struggle and courage. A mix of sad and half full, a combo of "yeah, I have seizures"... "but that don't mean I can't climb the table and funky dance while I'm up there!"

Friendship Circle is today's fastest growing Jewish organization for children with special needs. With over 76 locations worldwide Friendship Circle has cultivated friendships between 5,000 special children and close to 11,000 teen volunteers.

The unique vision of the Rebbe that "none of us are complete unless all of us are included" provides our motivation to bridge the gap between families of children with special needs and the general community while providing today’s teens with a productive and enjoyable focus.

Window To Our World, presented by Friendship Circle International, will share with you the inside perspective of special children, their families, volunteers, community members and Friendship Circle coordinators who bring them together.

For more information, please visit the Friendship Circle website.

Click here for an insightful video about special needs children.

Moderated by Rochel Groner, Friendship Circle International
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