NICU Parent Perspective: Special Education in the Time of Social Distancing

April 20, 2020
special needs, social distancing

Hey parents, how are we doing?…….yeah, me too. I was hoping some parents may be adjusting to this miserable, new, normal. But not us and I am guessing not many of you, as well. Working from home and also trying to home school our son during this time of social distancing bring my husband and I to the brink every single day. And, believe me, I know we have it better than a lot of people right now. But that does not make any of our situations any easier, does it? I mean, in our house, we have goals. IEP goals, that is.

Our son, who was born at 29-weeks, is now a healthy, happy, first grader who was diagnosed with autism spectrum disorder (ASD) at age 4. He also struggles with some significant motor delays. Up until the COVID-19 crisis hit and the schools closed, he had been receiving occupational, physical and speech therapy. He also participated in a social/emotional/behavioral support group daily. Now, how frequently he receives therapy depends on when either me, or my husband, can take a break from our increasingly demanding work schedules.

Thankful for Teachers, Therapists and Technology

Fortunately, the burden of providing our son with any sort of therapy does not rest solely with my husband and myself. It’s not like we’ve received the training to do so, anyway! His occupational therapist and his physical therapist have been able to use either FaceTime or Zoom to do virtual sessions with him. However, one of us parents also needs to be present to assist our son. And that’s perfectly fine! We need to learn how to help our son and be the therapist’s hands and feet so to speak. It actually brings me right back to the NICU days when my son started seeing his very first therapists and then the following years of in-home early intervention visits with even more therapists.

More importantly, it not only makes me thankful just for technology. It also makes me so grateful for the teachers and therapists who are making all of this distance learning possible. These people have been working non-stop to help our kids. They are not on break. Nor will they get a break until this school year is over. At least not in New York. Please remember that the next time someone wants to argue they get paid enough as it is. No, they don’t.

Social Distancing and ASD Do Not Mix

Unfortunately, while my son is still able to maintain some sort of regular schedule with his OT and PT, he is missing out on a huge chunk of his social/emotional/behavioral therapy, since he cannot be around any of his peers. This is what keeps me up at night, which I know isn’t saying much, since no one is getting much sleep these days.

Still, I worry more about him regressing in this area than any other. Mainly because it has been the one thing standing in his way of being able to be mainstreamed at his school and it is the one thing he has worked so damn hard on overcoming this past year. He has made tremendous gains and now that he most likely won’t be returning to school until September, I just don’t know what to think.

Not me. Us.

So, where does that leave my son? And your child? If nothing else, I hope that by reading this you know you and your child are not alone. We are all in this together. This just may be the first time in all of our lives when we can truly say that. Prior to this pandemic, the only other time in my, my husband’s, and my son’s life that we were hurting like this was when my son was in the NICU. But we quickly discovered we were not alone then either. We quickly bonded with many of the other parents around us and we were able to support each other with kind words and a shoulder to cry on if need be. Hopefully, we past and present NICU parents can continue to do that for each other. A virtual shoulder is better than none at all. And so is a virtual hand to hold.

NICU Families need a hand to hold now more than ever.

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