Managing Expectations - Making the Most Out of My Child's Autism Therapies - Emily's Puzzle - My son's autism therapies were more to teach me how to teach my son. EmilysPuzzle.com
Autism

Managing Expectations

Making the Most out of my Child’s Autism Therapies

Welcoming my autistic son’s therapists into our lives was bittersweet. I didn’t want my son to need therapists to help him do things that other kids his age did automatically.  I was grateful for their help, kind words and suggestions but resented the fact that I needed their help in the first place.

Two months after my oldest son was diagnosed with autism, four different therapists began coming to my home once or twice a week.  I had a four month old and a newly diagnosed and very unhappy two year old at home.  I was in the middle of postpartum depression and holding onto my sanity by a thread.

Since Eli was born, my husband and I had been forced to separate the children because Owen could not handle hearing his little brother’s cries.  So that magical and exhausting time right after bringing your newborn home wasn’t so magical for us. In fact, it was a living nightmare.  Our family needed some serious help and fast.

My expectations of my son’s therapists were unrealistic.  I thought they were going to come in, identify the areas that Owen needed help with, particularly his debilitating fear of his baby brother’s cries and fix him. I didn’t put a lot of thought into what they were going to do, I just knew help was coming.

I met each one that first week. I had no idea what autism therapy would look like but was immediately put to ease by their friendly smiles and gentle hearts.  Their personalities and therapy styles were so different but each served a unique purpose. I wish that they would have asked me then what I expected from them. Although I doubt I would have had the courage to tell them the truth. I wanted them to fix my son, fix our family and make his autism disappear.

These four different women were my introduction into the land of Early Intervention, special needs and autism.  Four very different women, four different professions all coming together to work with my two year old son. I was fortunate to have supportive family close by that were willing to take turns watching Eli so that I could sit in on every session. I eventually became close to each of them in different ways.

IManaging Expectations - Making the Most Out of My Child's Autism Therapies - Emily's Puzzle - My son's autism therapies were more to teach me how to teach my son. EmilysPuzzle.com was fascinated with how they worked with my son. The Special Instruction Therapist would attempt to engage Owen in order to get him to participate in play activities with her. The Occupational Therapist (OT) would work on fine motor skills and sensory play.  The Speech Therapist worked on teaching him sign language, asking for help and following one and two step directions. The Behavioral Specialist Consultant (BSC) worked mostly with me to help me track Owen’s behaviors in order to determine ways to lessen or prevent his  vulnerabilities.

I looked forward to their visits for a number of reasons: (1) It gave our life structure and routine which we desperately needed at that time.  (2) It gave me some time alone with my oldest son who had withdrawn from me since I brought his baby brother home from the hospital. (3) It was such a huge relief to have someone, knowledgeable about autism to talk to. I didn’t know anyone with an autistic child and felt incredibly alone. Each of these women would show up and work with my son while explaining to me what they were doing and why.  They would answer my questions and offer suggestions of things I could try doing with my son.  Some of their suggestions worked but many did not.

That’s when my confusion began to set in. I had become quite enamored by these ladies.  They were so knowledgeable about autism and yet they didn’t know exactly how to treat my son.  I started wondering if the therapy was even working.

Managing Expectations - Making the Most Out of My Child's Autism Therapies - Emily's Puzzle - My son's autism therapies were more to teach me how to teach my son. EmilysPuzzle.comFamily members would ask me what kinds of things the therapists were working on with Owen and I would enthusiastically explain what happened during the various therapy sessions. But when I said it out loud it felt trite and silly.

I told them how one therapist would have Owen lace beads or stack blocks while another would roll his toy cars back and forth beside him until he would giggle. The speech therapist was teaching my son, who was already verbal, to sign, “help” when he needed it. The BSC was showing up every week and collecting the data sheets that I had filled with check marks and notes of Owen’s behaviors. But we still had to keep the boys separated most of the time.  None of them had helped to reduce Owen’s meltdowns upon hearing his baby brother’s cries. I began to doubt their ability to help my son.

Back then, I didn’t understand that lacing beads and stacking blocks was strengthening his fine motor skills. That playing side-by-side with him was actually making a connection by joining him in his world and drawing Managing Expectations - Making the Most Out of My Child's Autism Therapies - Emily's Puzzle - My son's autism therapies were more to teach me how to teach my son. EmilysPuzzle.comhim into ours. I didn’t understand that being able to talk was different than being able to communicate. I didn’t realize that he was unable to ask for help, tell me that he was hungry, cold, thirsty or sick. I didn’t know then that he was a visual learner and that teaching him some basic sign language was easier for him to learn because he was watching and doing rather than listening and repeating. I didn’t know that by tracking all of his behaviors, before, during and after was teaching me how to read his body language, anticipate triggers and prevent them from happening. Over time, these therapists taught me how I could carry over his therapy at home.

I was so focused on what they were doing to “treat” my son that I didn’t notice how instrumental they were in helping me to regain my sanity. They helped me find online groups to connect with other autism families. They gave me hope by telling me about other kids that they had worked with and how well they were doing now. They celebrated Owen’s successes with me and comforted me  when I confided in them my fears for his future. I didn’t know it at the time but they were helping me every bit as much, if not more, than they were helping Owen.

My expectations were for them to come in and treat Owen as though he were a sick patient.  He’s not sick, he has a lifelong neurological disability that makes him process information differently than most people. The misfiring in his brain and central nervous system cause a delay in his development. It is their job to identify the areas where he is behind developmentally and work on those areas to increase his independence as much as possible. No quick fixes, just gradual changes in a positive direction over time. They are not miracle workers.

I discovered that the magical part of therapy had more to do with me than Owen. The magic happened when I watched them work with my son and asked them questions.  It came when I was able to carryover the work they were doing with him at home.  I would use the same words and phrases, I would do hand-over-hand the same way they did.  Little by little, Owen was becoming more compliant and transitions weren’t as difficult. His anxiety (as well as mine) was lessening. His behaviors were becoming less erratic and I was becoming more confident taking him out in public by myself.

He still continued to meltdown every time Eli would cry but soon Eli got older and began crying less.  We never did “fix” Owen’s sensitivity to a baby’s cry.  We did teach him ways to cope.  When he hears a baby cry now, whether on TV or at the grocery store he covers his ears with his hands and waits.  No more meltdowns. I’ve learned that his therapists weren’t there to fix his sensitivity to sounds or his other eccentricities.  They were teaching him (and me) ways for him to cope and adapt to the world around him.

I am forever grateful to these women for the help they offered to me and my son. They are not perfect and not everything went as I had expected. But once my perspective shifted from waiting for them to treat my son to seeing them as teachers who were there to teach me how to help my son; that’s when he truly began to make progress.

I will become less hands on as my children become more capable of communicating, following directions and being responsible for their own care.  In the meantime, where there is Owen or Eli you will find me.

Managing Expectations - Making the Most Out of My Child's Autism Therapies - Emily's Puzzle - My son's autism therapies were more to teach me how to teach my son. EmilysPuzzle.com

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This article has 2 comments

  1. Lauren C. Moye

    This made me tear up. I’ve spent the past three years working with a couple of boys on the ASD spectrum as an ABA line therapist. There are days that I wonder if we’re even making progress, and then other days that I leave the a therapy session flabbergasted at how much the child has progressed when it comes to all of his program areas. My experience has truly changed how I look at all children and even how I look at the world.

    • Emily Eggleston

      Thank you so much for your comment. I’m so glad that you enjoyed reading it. I really thought hard about how I could be so appreciative of my son’s therapists and yet still feel a bit resentful towards them. It wasn’t until I wrote this post that it made sense to me. The work you do is so valuable and so necessary for our children and for the parents. I agree completely about days (sometimes weeks or months) when you think you are just talking into the air then one day they just start doing something you’ve shown them a thousand times before with no response. That’s when that wonderful feeling of relief and accomplishment washes over me and I am in awe at my son who is listening and processing everything around him and when ready or when he finds it necessary he shows me that he is perfectly capable of doing it. It’s fascinating and frustrating all at the same time. Thanks so much for your comment! Keep up the great work!

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