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Navigating Early Intervention Therapy

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The First Year

Navigating Early Intervention Therapy

By Jamie Pacton, MA

Autism Asperger’s Digest | March/April 2012

 

Finding the right therapy for a newly diagnosed child on the spectrum is incredibly hard.  If the first year of autism is a river—running smoothly sometimes and threatening to drown you at other times—then setting up therapy is the churning eddy where expectation, administration, and realization tumble into each other. It is a place of unseen snags that you need skill just to get through.

I went looking for Early Intervention (EI) therapists for my son Liam with a set of unrealistic expectations. The first time a speech language pathologist (SLP) came to our home, I stepped aside, thinking: “I’ll just let her do her stuff and get Liam talking today!” Since I’d been up all night watching Internet videos of speech therapists in action, I expected that she’d coax Liam into identifying pictures, and have him making basic sounds in less than an hour.

Surely she had some magic that I didn’t! Certainly she knew ways to make him—trick him—convince him—to remember the words he used to say! I didn’t think he needed more than three sessions, tops. Imagine my annoyance when she followed him around for an hour, just blowing bubbles and exclaiming, “Pop!”

The therapist gave me some handouts and left. I was appalled.  Where was our “river guide”? The picture cards? The miracle speech cures? I wanted to know exactly what to do to fix Liam. I already knew how to blow bubbles!

There was so much I didn’t know about therapy in the first year after diagnosis.  I didn’t know to ask questions, participate actively, or respect professional boundaries. I didn’t know that there was no one magical therapy, and that the best therapeutic approach for Liam would combine play, table work, sensory activities, toys, trips to the park and zoo, echoic trials of language, and plenty of time.

Besides having unrealistic expectations, I was also overwhelmed by the many EI options.  Applied behavior analysis (ABA) therapy, government-run Early Childhood programs with speech and occupational therapists, school-district programs with more SLPs and occupational therapists (OTs).  Private special education preschools, private SLPs and OTs, child psychologists who offered tutoring in Floortime, alternative therapy activities, music therapy, art therapy, hippotherapy (therapeutic horseback riding). Help!

Which therapy was the right one? What would benefit Liam the most? What would my insurance cover? If it wasn’t covered how would our family pay for it? I lay awake for hours drowning in to-do and to-call lists.

Eventually I waded through the administrative aspects of EI. I took from it these tips:

  • Be persistent.  You may have to call state agencies and autism treatment facilities many times.  There are huge waiting lists at most places.  Your persistence speaks well to the commitment you will bring to your child’s therapy.
  • Be proactive.  Find information, ask questions, and seek recommendations from other autism professionals and parents.  What works for one child might not work for another. You know your child best, so start with what you think will benefit him or her most and go from there.
  • Be patient. Filling out paperwork, talking to insurance companies, waiting for therapy to start, and getting through initial assessments all takes time.

It took several months to get Liam the help he needed. In that time we went through three different SLPs and three OTs. I spent hundreds of dollars on sensory toys, bubbles, trampolines, gym classes, bounce houses, and outdoor toys. During those months we met therapists who lectured us for letting Liam play with his food and therapists who praised us for being so involved with his therapy.

Eventually we found answers for Liam’s therapy. He now goes to an inclusive preschool with an ABAtherapist three days a week. She helps him participate in the class and interact appropriately with classmates. In addition this therapist does teaching trials and table time with him in the school setting. Liam also gets 15 hours weekly of intensive ABAtherapy at home.

Since we now have therapists in our home every day, I have realized some important things.  This is what I wish I’d known from the start of Liam’s therapy:

  • A therapist is not a nanny. You can certainly do household tasks while your child is in therapy, but don’t plan to tackle any major projects. Don’t ask your therapist to babysit your child during off hours. Although this seems ideal, it may confuse your child.
  • Therapists are human beings. They have cranky, hungry, tired days.  Be there to support them as they need you to.  Ask questions: “Can I help with that?” “Do you need a minute to write some notes?” “Would you like some water?” (This can be especially important if they have been chasing your child around the backyard for half an hour on a summer day!)
  • Therapy is more successful if everyone is comfortable.   Make your home a welcoming place.  (However, don’t let a few dishes in the sink or baskets of laundry stress you out.)  Therapists should know where things are and they should be able to use your bathroom. Remember to put your pet away if a therapist has allergies or is not comfortable around the pet.
  • Your child’s therapists are not your friends. Don’t ask too many personal questions.  It’s reasonable to ask them polite questions, but stay away from age, relationships, eating habits, families, religion, and politics. They are there to help your child, not hang out with you.
  • Therapy doesn’t stop when a therapist leaves your house. If you are able to integrate therapy strategies into your child’s daily life, this will help with consistency and success.

After just a few months of therapy, Liam is more engaged, makes more eye contact, participates actively in family life, and follows directions. Just the other day, when I was blowing bubbles in the backyard, I heard him say, “Buh-ba, buh-ba,” and then laugh with delight. I was instantly reminded of that first speech therapy session and amazed at how far we had come.  Those little words made all the pages of paperwork and all the daily stresses of therapy worth it.

Therapy works and is worth it, but all of our children are different.  Ultimately you must chart your own course through the rapids of Early Intervention.  Find the channel in this larger autism river that works best for your child, set a course that will get you where you want to go, hold on, and try to blow some bubbles along the way!

BIO

Jamie Pacton is a writer, professor, and mother to two young boys (one who is on the spectrum). Visit her at www.jamiepacton.com.

Copyright © Autism Asperger’s Digest. 2012. All Rights Reserved. Distribution via print means prohibited without written permission of publisher.


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