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7 Back-to-School Secrets of a Special Needs Mom

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I was always a good student and really enjoyed college and graduate school. I distinctly remember being excited for September, happily returning to campus, and eagerly beginning a new set of classes.

But when my incredible 4-year-old daughter began school, “back to school” turned into a very different experience, even under the best of circumstances (and we have been lucky to have had wonderful experiences). My daughter happens to have Williams syndrome, a rare genetic condition that creates a host of medical and learning challenges. For so many parents of children with special needs, “back to school” can be laden with secret fears, challenges and some heartache – here are some of them.

1. “Back to school” for our family actually started last April, when we began meeting with the teachers, therapists and other team members who would be supporting our child, in order to educate them about our daughter’s unique learning profile and decide what skills we needed to work on over the “summer.” Speaking of “summer,” we had a lot of fun, but we also spent a lot of time in therapy and at the hospital, catching up on appointments with my daughter’s 10 specialists. Luckily, she likes the hospital cafeteria, so we at least have some enjoyable lunch dates.

2. Back to school is hectic for everyone – I see all the tired moms at Target picking up last-minute school supplies. But in addition to all of the usual stuff, there’s a whole other layer of complexity that happens for some families. My daughter has nine individual therapists, multiple teachers and two preschools (typical and therapeutic). The logistics are maddening, let alone trying to communicate with and coordinate such a large (and terrific) team. I dream about creating pockets of time for her to lounge around or just run through the backyard, yet I also know that she really needs all of the services she receives. But the rigidity of her 8 a.m. to 5 p.m. daily schedule makes my heart ache.

3. No one really understands the stress and worry that a new school year can bring like other moms who walk the same path. The closed Facebook support groups and circles of friends many special needs moms rely on (and desperately need) are positively buzzing during back to school. If you don’t have this kind of support network, I strongly urge you to connect with other parents – it may be the most important thing you can do for yourself on this journey.

4. I think of all the amazing mamas I know who have not been able to find the right school for their children: those mamas who have fought with their school, at great length and at great expense, to keep their child fully included; the mamas who have moved halfway across the country because their school district refused to provide an appropriate education for their child; the mamas who work all day, then begin another “job” at night writing letters to their school districts, their insurance companies and their child’s teams of therapists. I believe it’s both heartbreaking and intolerable that some school districts fail our kids.

My daughter attends a warm, nurturing and enriching typical preschool where she is fully included. Almost every time I drive out of the parking lot, my eyes fill with tears of gratitude that she’s in a school that recognizes and appreciates her extraordinary gifts.

5. We have an awesome team, but there’s one special therapist who has made it her personal mission to ensure a successful transition for my daughter this year. She’s also particularly sensitive to my anxiety and has given me almost-real-time updates during the first week. There are truly no words to express my appreciation for her and the lasting impression she has made in my heart.

6. When another parent casually mentions that their child loves to play with my daughter and has been asking for a play date, my heart soars and I try hard not to weep with joy. There is no therapy, book or specialist that can automatically create the alchemy needed to develop real peer-to-peer friendships. When it happens naturally, and another child sees how amazing my daughter is, it’s like winning the lottery. Every. Single. Time.

7. Each time I watch my daughter happily skip through the door to her classroom, filled with children she just met, in a new environment that presents all kinds of challenges for her, and with teachers and therapists who are watching her every move, I marvel at how it can be possible for so much strength, courage, joy, empathy and sweetness to be contained in that petite 4-year-old body. She is a miracle, and my greatest teacher every school year, for always.

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Lead photo source: Thinkstock Images

Originally published: September 15, 2015
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