Friday, June 28, 2013

It Takes More Than A Village

It might take a village to raise a child, but to raise a child with special needs, it takes a team. A specialized team. One team member to address feeding and speech, one to manage gross motor development, one for smaller fine motor movements, and one for special instruction. One such team became a part of our lives back in 2009.

I don’t remember exactly how old Maya was when she started receiving therapies through Early Intervention, but I would guess it was right around 10-11 months old. She was little and adorable and we knew that she had some delays, but really had no idea how significant her challenges were or for how long she would need therapy.  I had mixed feelings about the therapies, some of which I’ve already shared. We had a very full schedule and it was difficult not to have some resentment over being tied to so many appointments per week, especially when I saw other women with babies in the neighborhood meeting for coffee, having playdates in the park, or meeting up at the playground. I would have fleeting interactions with them as I whisked tired Maya out for 30 minutes between commitments, determined to get some “normal” time into her life.

While the therapies were sometimes a source of frustration for me, the therapists (by and large) were not. Earlier this week I randomly ran into one of them in the city, and as I hugged her I couldn’t help but think that bystanders who witnessed the vigor of my attack/embrace must think that she was a long lost best friend . . . not my child’s former speech therapist.

It got me thinking about Maya’s team of EI therapists. We lost a few (that’s a nice way of saying we gave a few the boot) before finally settling with the team that would carry us through until preschool, the team who would teach Maya and help her to grow stronger and smarter, the team who became my friends and sounding boards.  Each one of these women brought something to the table, and each played a formative role in the way that I interacted with my child.

Our EI therapists didn’t just teach me about exercises and development and milestones . . . they taught me how to be Maya’s mom, how to be the confident, capable mom of a complicated child.  Certainly, I would have been her mom (and a good one at that) with or without them---but they gave me practical guidance, tangible ways to aid in her progress, and (of equal importance) the camaraderie and support that I so needed as I found my footing over those early years.

The therapists had the perspective and knowledge that no one else did---certainly not me, or our family, or friends with typical kids, or even our pediatrician. When I asked “have you worked with other kids who xyz?” I would get a straight, honest answer---and if the answer was yes, we knew what to try . . . and when it was no, I got my first glimpses into just how outside-the-box Maya would turn out to be.  They could draw from their experiences with other kids who followed similar paths to a certain skill, they knew which toys or household items offered the most bang for the buck, and they could see when we were working hard, even if progress wasn’t coming as fast as we had hoped.

Together, the therapists and I learned when it was appropriate to push Maya, and when to back off.  We worked as a team, each provided the other with new bits of information about what she was able to do, or secret motivation tips. Every time that they confirmed my suspicions (It seems like she might drool more than other kids her age---have you noticed that? I’m not sure if that should be slowing down now.) or agreed with my assessment of progress (Did you see her reach across midline? Was she able to do that last week?) I became more confident in my ability to collect data, the sharpness of my observations, and the accuracy with which I would be able to discuss my daughter with the countless doctors that we were frequently visiting.  I can only see it now, in hindsight, but I needed the validation that they provided when they saw me working with and interacting with Maya—their approval helped me rest ever so slightly easier, knowing that we were doing the absolute best that we could.

Well, most of the time.

Other times we weren't doing the best that we could. I was frustrated or Maya was having a week of temper tantrums. I was at the end of my rope with appointments and reports and bad news and lack of progress, and the therapists became my sounding board. They were the only adults that I was interacting with, they were in my home, and they knew everything about Maya---it made sense that they were often my news-guinea-pigs . . . the first people that I would tell about a genetic test we were running, or an evaluation that had yielded surprising results.  Their thoughtful (as in full-of-thought, not as in kind) reactions, follow-up questions, and words of wisdom helped me to process things more deeply and figure out exactly how I would relay the information to our family and friends (and readers).

The therapists balanced out the well-meaning-but-not-very-informed input from those not privy to the reality of raising a child with special needs. Those who weren’t in my living room, on our gym mats, watching me stretch and position and move Maya’s limbs, who would say “Well, my doctor said that they’ll basically learn everything themselves with enough tummy time . . . maybe if she spent more time on her belly it would help?”  Those who weren’t in my kitchen, as I sat across from Maya with chewy tubes and used one hand to steady her head and open the side of her mouth while she cried and I tried not to clench up, who said “My friend’s daughter did the same thing---she was a really picky eater but they just kept offering the same foods and eventually she realized that she had to eat what they gave her.” 

Collectively, the therapists saw my eyes fill with tears more than anyone, ever. (I am generally not a crier.) And they did a great job continuing with rational conversation and pretending that it wasn’t happening, which was the exact thing that I was hoping that they would do.

The therapists loved Maya, despite the fact that they weren’t obligated to do so, and that expression of love gave me the hope and belief that others would see how amazing she is and love her, too.  They treated her with tenderness, but also didn’t let her use her extra challenges as an excuse (No, you are not too tired to clean up, get your little head off of that table, sit up, and help put these markers away.).  They appreciated her sass and jokes, but forced her to get down to business and do her work.  They treated her like family, and (I believe) they looked forward to the time that they spent with her.  The honesty of their feelings for Maya—the fact that they knew all of her challenges and struggles, all of her stubbornness and sass, the great stuff and the not-so-glamorous stuff--- and they welcomed her with open arms and loved her without conditions---it touched one of my first, deepest, unspoken fears about having a child with special needs: what if people don’t love her the way that they would have if she was “typical”? What if she doesn’t have friends?  The EI therapists were her first friends.

For the therapists reading this, the ones who go above and beyond, the ones who love their little patients and listen to their (sometimes fragile) parents, the ones who go home at night and think about the families that they work with . . . thank you.  I’m thanking you on behalf of the parents who are tired, or angry, or stretched too thin, or emotional, or shy, or introverted . . .the parents who aren’t remembering (or aren’t able) to thank you themselves (I have been all of those parents, by the way).  We know that it’s not in your job description to love our kids, or to be our friends, but you are in a unique position---kicked into the inner circle of a family in crisis---and the ways that you offer support are making a critical difference in our lives . . . even if we can only see it in retrospect.  Keep up the good work. You are changing lives. Thank you.

Especially for KN, NB, VC and CT. Thank you.


Anonymous said...

After a long week, this OT needed that, a nice reminder of the reasons that I love what I do. Thank you!

tuesday8862 said...

I have a son with a disability. I am also a Special Ed. Teacher. There's been ups and downs, and many tears. Many thanks to those who go above and beyond for our children. This is truly a heart-felt account of your experience. I needed this. :-)

Anonymous said...

It has been a very long working week, and like the OT above, this SLP is glad she read your words today. Thank you for reminding me that while some parents are not able to say 'thank you' our actions and well-meaning thoughts are still noticed.

Cheryl (in Buffalo) said...

My daughter had an amazing EI team as well...and it is true...They are a part of your family. They see the best and the worst and everything in between. It takes a special person to parent a child with special needs, but it takes a truly special person to provide services to the child and family......It is truly a gift of heart.

Abby said...

This special ed teacher appreciates your words as well. I just finished my first year teaching, and I worked my butt off all year. I love each and every one of my students and truly did look forward to seeing them every day. I only received three notes of thanks from the families I worked with. I don't blame them for that (many don't speak or write English, are very busy, etc) but it is nice to hear appreciation, even if it's from someone I only know from blog-stalking on the internet :-)

Padgett Mozingo said...

Right on target. Thanks for sharing. We feel the same about "Team Lila."

Anonymous said...

Thank you so much!!! I do love my babies and their families and feel blessed to have this job.

Brielle and Me: Our Journey said...

Great post! I learned more about motherhood from therapists than I ever did from any other source (other than experience). Best piece of advice came early and hard from an OT -- Let her fail.

Looking for Blue Sky said...

Thank you for this - sometimes I'm made feel that I'm a second class mum because I don't always know how to help my children.

Kerri said...

Thank you for your candid post! I am a special ed teacher who is beginning to blog in hopes of becoming a better partner to the families I service. I want to know what parents experience, the good the bad and everything in between. My goal is to gain a deeper understanding of what it takes to raise a child with special needs by seeking out the perspectives of parents with children who have special needs. I also want to find ways to empower families to advocate for their children. Thank you for sharing your story!

Anonymous said...

Thank you for writing this, Dana, I'll forward it to our therapists too. -TD