Keep Looking for Therapy. You’ll Find it.

Shortly before Christmas 2009, when I was referred for my son’s evaluation for autism, I was truly and completely devoid of any knowledge concerning autism.  My head was empty.  I needed to know.  But where could I turn?  It wasn’t like the local college offered a crash course on what to do when your child is diagnosed with autism.  There were no “support group” referrals.  I was lost.

I Googled. I checked websites.  I tried to read medical studies.  I craved and needed more information so I bought books.  But I was still lost.  I was buying the wrong books and seeing the wrong things on line because I did not know where to start.  At the time, I did not use Twitter and had barely started on Facebook.

After the diagnosis was made, I had no time for drama.  There was a lot to do.  From what I saw, read and was told, one thing got through, early intervention was the key.  And I was determined to get it.  I did not know how but I knew one avenue was speech. My son was fast approaching his 4th birthday, and I was determined to get him some professional attention before then.

Speech included a social skills class.  My son was placed with two older boys on the spectrum.  And here was my salvation.  Other, more experienced moms.  The real deal.  I found home base and this was it.

At first, I felt overwhelmed with information these mothers so openly and willingly shared.  I needed to take notes or record the conversation and play it back.  It was simply too much of a foreign language, given my limited understanding of what was going on.  They talked about IEPs and OT and ABA.  I had no clue. But I asked.  And I remembered the part about ABA (Applied Behavioral Analysis).

Within a couple weeks, I was searching for ABA.  There was no case worker assigned to my family yet.  There were no outside sources to guide me.  I just had the two moms.  They had given me the names of the companies they used for ABA.  I called.  The first one said they did not travel as far as my home was located.  The owner of the second company said the same, but she had a small classroom she ran for autistic preschoolers like my son.  Neither company knew the name of any place with ABA in my location.

I was very frustrated.  The preschool was in a town 50 miles from where we lived and 20 miles from where I practiced law with limited hours.  Yet, I knew I needed to get ABA going for my son and I couldn’t find any.  I also knew the classroom was not what I had learned about ABA.  The moms tried to help.  One told me there was an ABA service near a high school in a town right next to mine.  I looked online and could not find this elusive place.  I even drove around the school hoping to find the location.  Again, I was lost.

During this same time frame, the speech therapy place was holding a Spring Carnival. They were having a bouncy house and my son loves the bouncy houses.  The two other mothers who had befriended me were going.  I thought it would be great too!  An understanding community of moms and therapists in a fun, carnival setting!  What could possibly go wrong?…

We arrived.  There were lots of people and sounds.  There was a mobile sensory bus with the engine running for air conditioning.  Inside the therapy building, games were set up in therapy rooms.  At first, my son was excited.  He could not wait to get inside the bouncy house.  But, yes, he did have to wait.

After some prolonged cussing the word, “train” (a pre-curser to “fire truck – his current favorite curse word) and crying and yelling, his turn came.  He had fun, bouncing inside but it was hot out that day and he was sweating with bright red cheeks.  His time was limited so the next set of children could have a turn which caused additional swearing, this time accompanied by his being cranky and hot.

Bouncing

We tried to get him to board the sensory bus.  Whoa!  That was a bad idea.  He was terrified of the bus.  The narrow doorway, the steps up, the loud engine.  He screamed to get away from it.

He wanted back in the bouncy house. At the same time wanted to go inside to play games.  He bolted from us and ran into the middle of a group of children playing and had to be pulled away so they could resume.  This, naturally, resulted in a full-fledged meltdown.  What I hadn’t realized was that the carnival was to attract new visitors, people who were not already attending and who did not necessarily fall on the spectrum like my son.  So, rather than finding the other moms’ support, I found a bunch of strangers, staring at us, just like they did at the mall.

I was pissed off.  My husband and I took our son out to the car and tried to calm him down.  It was not working, so we left.  I was at the end of my rope.  The place I thought I found for support, felt, in that moment, like no help at all.

I insisted we drive the distance to see the preschool the woman who could not provide us with ABA wanted my son to try.  We drove and drove.  The neighborhood in which the school was located was very far away.  It was on a busy street in a tiny converted house.  This was no place for my son.

I remember being frustrated.  How could there not be an ABA program that I could find located close to my work or home?  Our workplace was in a large, growing suburb.  I swore as we drove away, I would find something and I began Googling again on my iPhone.

This time was different.  I found something.  It was early, intensive behavioral therapy and it was located close to my workplace.  Why it had not surfaced in my searches before, I did not know.  I read.  I was confused.  The Company had the word “autism” in its name.  But I knew so little, I still was unconvinced that this was something that would fit my son’s needs.  (Oh, how reticent I was!)  I left a message.  After all, this was Saturday afternoon.

I was feeling down.  The website for this behavioral therapy place, was throwing around names of studies by some Dr. Lovaas and talking about intensive therapy.  I thought there was no way I could afford this stuff or even afford to talk to this man.  Plus, I had no idea how I could possibly talk to him intelligently.  Little did I know, I had found my Nirvana

The therapist who ran the place called back.  He was mellow and kind and truly a person who, right from the start, I knew I could trust.  He has helped me navigate the system. He has given skills to my son in ways that I did not know were possible.  And I have seen valuable and real changes occur.

So, if you are lost, thinking you want ABA, have been refused ABA , or have given up on some sort of support or therapy for your child, I am directing this story to you.  I was about to give up before I even began, when I made the last desperate call.  I almost did not make that call because I wasn’t sure and I didn’t know.  Never let doubt stop you! What’s the worst that can happen?  You’ll be in the same boat as before you made that call.  The right answer is right around the corner.  Dr. Buch came into our lives and changed them forever for the better.  Someone was looking out for us.  I have to believe that someone is looking out for us all.

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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8 Responses to Keep Looking for Therapy. You’ll Find it.

  1. It’s funny… I’ve now seen the term ABA twice this morning. I guess that’s what I’m going to work toward. An improvement in her behavior would be incredible. Thanks for commenting on my blog. After 4 years of being the only one like her, it’s nice to have some people that understand.

    • solodialogue says:

      Glad you came by! Yes, of all the therapies that we’ve had so far, Speech, social skills, Occupational Therapy and ABA, ABA by far has made the biggest difference! Will be following your blog journey!

  2. Nancy says:

    Never Give Up! You just never know what the day might bring. 🙂

  3. Flannery says:

    Good for you! As hard and overwhelming as it is to get that diagnosis, it’s like salt in the wound when you have to try and navigate the confusing “system” We already deal with so much at home with our children, then we have to prepare to do battle just to find and get services. It can be a very lonely road, but I’m so glad you found something for your little boy. Sometimes just getting started with a program can make us feel a sense of relief, because at least we know we’re finally on the road to somewhere.

    • solodialogue says:

      Thanks for your encouraging words. There was a point that I thought the ABA was simply not available for me because I did not know how prevalent it was or whether I could do the travel and work and get it. It all worked out because I kept trying. I want others to keep trying too! It’s out there. Sometimes, you just have to really look!

  4. This post is near and dear to my heart right now… as we graduate from Help Me Grow, I need to start looking for a new group of “people” for Kaia. I’m starting with the speech therapist this week and my husband and I have decided that it’s time for a new OT. Here’s to getting on the phone and dialing my little fingers off!

    • solodialogue says:

      Sounds like good story material to me! Therapies can be so frustrating. There does not seem to be a good central location, locally that puts it all together and that can be accessed online simply. Wouldn’t that be nice? Keep looking.

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