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Children with Special Needs and Therapy Burnout

Alethea Mshar
Special needs mom and Blogger
06/22/18  3:58 PM PST
therapy

When it hit us, it hit hard and fast. I don’t know if there’s an actual name for it, but I call it therapy burnout.

My two boys have Down syndrome. The oldest, Alex, also has childhood apraxia of speech, the younger, Ben, has autism, mental illness, and multiple, complex medical diagnoses. From the time Alex was born he has been in occupational therapy, then speech therapy was added in during his second year. After adding Ben to our family, the therapies multiplied. Ben needed physical therapy in addition to speech and OT, but my free time did not increase along with the therapy needs. When I added in appointments with Ben’s ever-expanding number of doctors, (12 specialists), the amount of time we spent on the phone, in the car and at appointments was staggering.

One day, out of the blue, I hung it up.

The boys still received therapy services at school, but we were all just done with feeling like we were constantly on a hamster wheel. We hopped off the wheel, or maybe we fell off, but either way, the therapies came to a screeching halt.

As a parent, I take seriously my role in helping my children develop into the best version of themselves possible. Conventional wisdom insists that for children with developmental disabilities, time in therapy is a key component of helping them along. Choosing not to participate in therapy seemed like dropping the ball.

Yet they were as burned out as I was. Alex spent his time flirting with the therapists and trying to manipulate them to avoid working. Ben would start screaming when we pulled into the parking lot and I had to literally drag him into the building. Not only were we spending many hours a week driving and attending appointments, I doubted it was even effective when my children were not complying anyway. We were all caught between the proverbial rock and hard place.

During our break, I struggled with guilt; I felt like I was letting my children down. On the flip side, we spent more time chilling as a family, enjoying a time of rest.

We just signed up for summer therapy for the first time in over a year, and rather than the dread that we have experienced in the past, we are eager and excited to learn and grow in a new place with a fabulous team.

In hindsight, I think we were right to take the break, in fact, I wish we had done it sooner. Therapy had become a burden, and we all just went through the motions. Maybe if we had been more mindful of the stress it was causing, we would have been more intentional about taking a short hiatus rather than totally quitting for over a year.

Going forward, we plan to be more judicious about managing our lives and balancing therapies and development with the rest of our physical, mental, emotional and spiritual needs. Therapies are but one piece of the holistic puzzle of our family, one that requires care and balance to complete. I think our puzzle is back in order, and I plan to keep it that way.

 

inclusion on the playground

Alethea Mshar is a Special Needs Mom and Blogger.

Read her blog, Ben’s Writing, Running Mom

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Comments

1 Comment

  1. Darcy R.
    Posted June 23, 2018 at 8:17 am PST

    As a pediatric physical therapist I often encourage my families to take a break. Especially after age three, there are times where you’re really waiting for a child to grow. Sometimes it’s physical growth…the kiddo just really has to be taller to perform a task or have more muscle mass. Sometimes it’s maturity…the child just needs a bit more ability to cooperate or understand or just be in this world a bit better. Time off to just be a kid and a more relaxed family facilitate this growth much better than ineffective, expensive therapy. Many times it’s a great idea to take the summer off or to only come to therapy in the summer. As a parent you know your child best so if your therapist doesn’t suggest it, ask if a break might be a good idea.

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