Through my Parenting Eyes

By: Theresa Forthofer, CEO & President of Easter Seals DuPage & Fox Valley

While I am the President and CEO of Easter Seals DuPage & Fox Valley, I also happen to be the mother of three children.  Two of my children have Myotonic Muscular Dystrophy and Autism. My oldest, Ryan, was diagnosed when he was 7 years old.  He is now 24 years old. My youngest was diagnosed with the Congenital form of Muscular Dystrophy within days of his birth and he is now 18.

forthofer family

Having two boys with Muscular Dystrophy, meant lots of doctor visits and hours of therapy every week.  Throughout the years we had several different therapists and we liked them all.  They were all very nice and the boys were making progress.  Therefore, we assumed everything was great and the boys were doing the best they could.  Looking back, I sincerely wish I knew then, what I know now.  While they were progressing, they were not reaching their full potential.

I may be biased, but what I have learned since becoming President and CEO isn’t as significant as what I have learned about raising two boys with disabilities.  I share my story to help at least one other family find their child’s true potential.

For nearly 7 years, my son had (unsuccessfully) worked on putting his shoes and socks on independently.  His Early Intervention therapist worked on it, his private therapists from a nearby clinic worked on it, and his school therapists worked on it.  Over and over again we were told, he doesn’t have the strength.

17b_ProcoposJustinDip.jpg
Photo by Alexi Procopos

However, when I came to Easter Seals, I asked about Occupational Therapy for Justin.  I wanted him to put his shoes and socks on independently.  In just two sessions, his therapist asked me what our next goal was because he was putting his shoes and socks on independently.  I didn’t believe her and made her show me.  He did it and is still doing it!  His therapist explained it was a motor planning issue not a strength issue for Justin.  For years, I dreaded leaving the house because putting his shoes and socks on became something to battle over. Now those days are long behind us.  No more excuses for being late!

Occupational therapy worked so well, I signed Justin up for the feeding clinic.  At 12 years old, he weighed 40 pounds and we had tried everything.  We saw an endocrinologist, feeding therapists, nutritionists, etc.  The best solution was growth hormones, but Myotonic Dystrophy has cardiac complications, so this was not advised.

After attending the feeding clinic and starting a few relatively small changes, he gained 10 pounds in three months – 25% of his body weight!  He will likely always be small for his age, but we wish it hadn’t taken us so long to figure out these needs and find the experts at Easter Seals.  They imagined a future beyond what we had been told to expect by other professionals and without any limitations.

leadership meetingI hear these same stories like mine, nearly every week.  Children who have been seen for years and aren’t reaching their fullest potential.  When they find their way to Easter Seals DuPage & Fox Valley they often can’t believe what they have missed out on.  The progress their children are making so quickly surprises their families, their doctors and sometimes even us.

If you are looking for a therapy center or therapist for your child, here are the top 10 questions to ask:

  1. Is the center CARF Accredited and have a Medical Advisory Board?
  2. Is the center directly affiliated with any major research hospital systems?
  3. Who are your primary referral sources?
  4. What are the published results of your satisfaction survey and where can I find them?
  5. Is the therapist NDT (Neuro-Developmental Treatment) trained?
  6. What diagnoses has the therapist personally treated?
  7. What is the average level of experience of the therapists at the center?
  8. How many children do you treat annually?
  9. What training do you receive on a regular basis?
  10. How do you support parents and siblings?

As parents, we all want the absolute best for our kids. I found it here at Easter Seals and you can too!

Easter Seals DuPage & Fox Valley is a CARF accredited facility with a medical advisory board and affiliations with University of Chicago, University of Illinois at Chicago, Northwestern University and RIC (Shirley Ryan Ability Lab). With 87 therapists and professional staff with an average tenure of 19 years, the majority of therapists are NDT trained and are required to receive on-going training. The therapists are specialized in many specific areas including feeding, motor, sensory needs and more.

Easter Seals serves more than 1,000 families a week with locations in Naperville, Villa Park and Elgin.  Through an annual client survey, 99% of families report satisfaction with the services they receive and 98% of families report progress. The parent liaisons and social workers on staff provide support and family activities for all members of the family. Learn more at eastersealsdfvr.org. 

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