Chicago mom advises parents of children with special needs to trust their instinct


 
 

By Gillian Marchenko

 

Special needs families have certain things in common: extra medical appointments, individualized education plan meetings, more effort and patience to see our kids reach their milestones—and therapy. Ask any parent, and he or she will probably say that therapy has taken up a huge chunk of family life.

Decisions about therapy are daunting and confusing. How do we figure out such an important part of life? Where should it take place? How often? When is therapy no longer needed? How will it affect the rest of our family?

As a special needs mom, I’ve worked through therapy questions for years.

I have four children, and two of them have special needs. My girls participated in Early Intervention and currently get therapy at school. They also receive additional speech and occupational therapy weekly at home through Aspire Illinois. We’ve placed them in therapy groups for socialization, in one-on-one therapy at home, and in programs that take place in hospitals and therapy centers.

Therapy has made our lives more complicated and busy. Sometimes our children without disabilities complain because most of our afternoons are tied up. But, for better or worse, I’ve felt a responsibility to make sure my kids are benefitting from anything that can help them develop. Sometimes I, too, wish we had a free afternoon instead of a session. Overall, though, therapy has been a good, albeit overwhelming, experience for our family.

On the other hand, in the memoir, Life with a Superhero: Raising Michael Who Has Down Syndrome, Michael’s mom, Kathryn Hulings, describes how she canceled all of his therapy sessions and the family took on the role of therapists using all kinds of unprecedented “therapy.” It seemed to work. Michael reached developmental goals just fine.

Who’s right?

Am I right in having my girls do as much therapy as we can find? Or is Michael’s mom right in shrugging off classic therapy and assuming her son’s developmental growth herself?

The answer is this: we both are right. When it comes to therapy, one size does not fit all. Less therapy? More? Take a season off? The answer to all of this is yes.

In the midst of decisions, research and advice, let’s remember that a parent houses a crucial tool in her special needs box of tricks: her gut. The longer I am a mother, the more I realize that each of us has to figure out what is best for our family.

Anne Grunsted, a Chicago mom to Bobby, who has Down syndrome, has a balanced perspective.

“Therapy is important, but it’s also part of a long list of life stuff that is important. I think it is OK to sometimes admit that squeezing in one more session a week is not the priority,” she says.

Sarah Britton, mom to 4-year-old Tinley, who has Apert syndrome, appreciates breaks.

“Tinley is still in therapy, but we will be taking the summer off. We’ve done this every summer since she was born. Everyone needs a break!”

Therapy is going to look different for each family. And about trusting your gut? It is good to listen to your intuition, but it is also important to reinforce what your gut is telling you by talking to your child’s therapists and other parents and friends before changing up or ceasing therapy all together.

Kim Russell, an occupational therapist at Aspire, understands that parents make different choices about therapy.

“I’ve seen cases where it may be beneficial to take a break from therapy. My recommendation is to have a conversation with the therapist before deciding. Remember, therapists are knowledgeable. They are on your side,” she says.

A couple other tips regarding therapy:

Take a look at how that particular therapist interacts with your child. If it doesn’t seem to be working, you just might need to find someone else that fits better.

If you want to stop therapy, think about whether it is a therapy sabbatical or a life change. If it is a sabbatical, mark your calendar a few months out to revisit the issue again.

Therapy requires thoughtful consideration, research and parental intuition. The key is being open and educated, to trust our gut instincts and to learn from each other.

Gillian Marchenko is a Chicago mom of four, including two with special needs.

 

 
 







 
 
 
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