Monday, January 27, 2020

How Early Intervention helps special needs parents

There was an excellent piece in the New York Times Parenting section last week by Emma Fitzsimmons, the City Hall bureau chief: How Early Intervention Changed My Son's Life. Like my Max, her son had a stroke. His was in utero; Max's happened during his birth. At 2, Emma reported, her son "is walking and talking and keeping up with his peers." She noted that Early Intervention is one of the reasons he's doing so well, and what an incredible program it is, one that some parents don't know about or tap into.

Early Intervention is a godsend for special needs parents, too. Max was my introduction to the world of disability; the Early Intervention therapists were my saintly tour guides.

I reached out to EI while Max was still in the NICU. A consulting neurologist had advised us to get Max as much therapy as possible, a social worker told us about Early Intervention, and I was raring to do whatever I could to help him. We were still in shock about what had happened, and I felt so helpless and powerless. Here, at least, was something we could do for him. I spoke with the EI supervisor and telling her about what had happened to Max and all that he was at risk for, and she agreed he was a candidate. He was enrolled at two months old.

By the time he was 21 months old, Max was commando crawling. Like an army soldier, he'd use his arms to propel his body forward—he always had determination, this boy. Max had no words. He couldn't pick up objects. I was a walking ball of anxiety, but I often found consolation in his therapists, not to mention, salvation.

There was Mindy the physical therapist, who would position Max on his hands and knees, hover over him and move his arms and legs, literally teaching him to crawl. Mindy, the angel—angel!—who felt confident that because Max could bicycle his legs, he might someday walk. It was she who recommended the Pony gait trainer, and Max soon learned to zoom all around our first floor. Oh, how he loved that thing. I can only imagine how it felt: After not being able to move any of his limbs very well, he found freedom. We padded corners with pieces of Dr. Scholl's Moleskin (one of the most unfortunately named products ever). Later, she recommended the Laye posterior walker that Max practiced with on our street. That contraption lead to his first independent steps. On his third birthday, he walked across his room from Dave's arms to mine.

Nafeesa, the occupational therapist, would wrap Max's chubby little hands in Coban wrap—the stuff you use to wrap sprained ankles—to keep his fisted fingers more open so he could learn to grasp. She suggested getting Theratogs to give Max's trunk more support and better alignment and, later, the Benik hand splints Max wore to keep his thumb isolated so he wouldn't tuck it in. She stayed with us for years after Early Intervention ended. The speech therapists came and went (they were the hardest therapists to get through EI) but we lucked out and found Jeri, a private SP who still sees Max to this day.

We also had a teacher through EI to help Max learn basics like colors and letters and a visual specialist who came to us from an association that served the visually impaired (Max's vision in his early years was affected by the stroke). One weeknight a week, Dave—often accompanied by his mom, for company—drove Max to another physical therapist. On weekends and Fridays when I worked from home, we took him to alternate therapies including aquatic therapy, hippotherapy (horseback riding) craniosacral therapy and hyperbaric oxygen therapy. Soon enough, we'd add feeding therapy, too.

Early Intervention is a gift to working moms. The wonderful nanny we had didn't drive, but I couldn't have expected anyone to drive him to the ten-plus sessions he had every week. The therapists would faithfully arrive every day, and we would communicate mainly through notes. I didn't feel guilty about going to work because I knew he was in their capable hands.

The therapists patiently answered my kajillion questions about how limbs and muscles and brains work, how the other kids they'd helped were doing (#goals) and what else Dave and I could do for Max. They showed me how to enable him: objects placed out of his reach could encourage him to  move his body toward them, my Boppy breastfeeding pillow could be used to support his back so he could sit up, a mirror propped in front of him could engage him and further encourage him to stay upright. (That's Max at 10 months old in the picture above, supported by his OT.)  We'd incorporate exercises they'd given us into Max's routines: bicycle his legs while changing his diaper, massage his hands in the bath, rub his cheeks and jaw with a washcloth to loosen them up so maybe he'd make sounds.

Sometimes, the exercises overwhelmed me. I felt this tremendous amount of pressure to be the one to get Max to do stuff. I just wanted to enjoy my chubalicious baby. I just wanted him to be OK. There were entire weekends when Dave and I would blow off the exercise regimes, take Max to the park or to a museum and just be a family. Our pediatric neurologist had told us to expose Max to as much as we could. He was seeing and learning when we explored new places. He was feeling the warmth of our love and that was therapeutic, too.

My soul and spirit needed healing from all those "He may never do ___" words I'd heard from the curmudgeonly lead pediatric neurologist at the hospital where Max was born. As I'd told the social worker when I complained about the pediatric's neurologist's negativity, "If I don't have hope as Max's mom, who will?" I found that hope in Early Intervention. Putting my sweet baby in the therapists' capable hands gave me comfort like nothing else. Their determination to help Max progress was the confidence I needed. Their

While it isn't part of Early Intervention therapists' jobs to provide therapy to parents, their reassurances—not false promises, just cautiously realistic hope—helped offset the NICU nightmare that haunted me and made me despair. The conversations I had with them about how Max was doing, sitting on the floor as they worked Max's limbs and tried to coach movements and sounds out of him, were my talk therapy. Their encouragement was my anti-depression medication, although I probably should have gone on meds, a doctor later told me—there is no shame if you need them. When they agreed with me that indeed my boy was gifted with cuteness, I'd beam.

Early Intervention therapists changed Max's life, as so many do for so many little ones. They changed my life, too. The EI therapists enabled me to be a good mom to Max. They were rays of sunshine, warmth and solace in the greatest period of darkness in my life. For that, I am forever grateful.

1 comment:

  1. My son's EI therapists were amazing. Until last year our son was enrolled in our local EI physical therapy program. They helped us obtain adaptive equipment such as a wheelchair for him. They gave me hope that he would be ultimately fine. They encouraged him to work hard. And they have also acted as my personal sounding board on my bad days as well.


Thanks for sharing!

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