Therapy? What Therapy? 13

This post is for Danette’s Best of Best at SOS Series where the topic this month is Therapy and Special Needs Children

First, a disclaimer.  This post only represents my point of view as it relates to my family and my child.  Everyone has to make the best decision for their child based on the best information they have.   

Therapy was practically nonexistent for my child. The initial psychologist did not realize my daughter was on the autism spectrum although we told him about her sensory issues with smells, clothes, and sound.  He told us to tell her that she was being silly and like dummies we listened to him.  He knew she had trouble with some of her friends and with transitions too.  I do not remember if we specifically talked to him about her literal thinking, but he knew she had trouble sleeping and for over three years he had the psychiatrist prescribe various medications for her for various diagnoses.  None of them worked well and all of them had side effects. 

I finally said enough! I weaned her off the medications and took her for three full days of evaluation with a neuropsychologist who gave her the diagnosis of Asperger’s.  I started reading everything I could get my hands on including Tony Attwood’s wonderful book The Complete Guide to Asperger’s Syndrome.  All of her symptoms suddenly made sense.  We had the right diagnosis, but we still did not have real help.  The neuropsychologist only had social skills classes for boys at the time and she did not offer any other services.  We moved our daughter’s bed away from the window and got her a sound soother and tried aroma therapy to help her to sleep.  We told her to read quietly in bed if she woke up and could not go back to sleep.  We got her Sims to play since it was popular with the girls at her school.  She also joined Girl Scouts.

We were reaching for anything that would help and when an optometrist suggested vision therapy might be the answer we jumped at it although it was not covered by insurance.  Over five thousand dollars later, we realized that he was not doing anything for our daughter that she had not done previously.  Plus, he actually thought she needed remedial help when she did not.  He jumped to this conclusion because she did not talk to him.  She did not talk to him because he insulted her intelligence and she did not like him. She took three years of ballet, a semester of gymnastics, a semester of musical theater and two years of tennis before we ever sent her to the optometrist all of which helped her coördination and balance.

I worked with her from the time she was a baby in more ways than I realized too.  I helped her play dress up in my old clothes.  I sat down with her for tea parties at her little table.  We blew bubbles in the backyard from the time she was old enough to walk.  We played with Play Dough and finger paint and we did puzzles.  I let her sit on the kitchen floor and play with a bowl of uncooked rice as I cooked.  Later, I added a big spoon for her to stir.  I helped her build with Lego’s and I used them to help her learn to count.  I talked to her constantly and pointed out colors and names of everything we saw.  A large alphabet foam floor mat helped her learn her letters.  When she had trouble pronouncing some words I showed her how to form the sounds.  We never talked down to her and she now has a bigger vocabulary and speaks better than I do.

So many things helped mask the true diagnosis.  I read to her from the time she was six weeks old using my finger to point to the words and the corresponding pictures, minimally twice a day.  I sat on the floor in her room with her and her Dr. Seuss books to help her learn to read when she was four.  I showed her how to put a bookmark under the line to help keep her place as she read.  She had a teacher who showed her how to remember b and d by using her hands to form the letters and we worked with her to help her learn left and right by having her wear a watch.

My daughter experienced severe bullying the year following the diagnosis and this caused me to find a psychologist who specialized in children on the autism spectrum to help her and us through the after effects.  This was the only therapy directly related to Asperger’s my daughter ever received. Yet, I see the value of therapy for many special needs children and I see the value of medication in limited cases although I think doctors need to be very careful when they prescribe psychiatric medications to children.  I also believe doctors need to listen to the primary caretakers and educate themselves about all of the symptoms of autism spectrum listed in the upcoming DSM, the Diagnostic and Statistical Manuel used to diagnose anything that falls under psychiatric services in the United States.

A big part of the problem in our case related directly to the lack of understanding of her sensory challenges.  The current DSM does not include sensory issues in the diagnosis of Asperger’s Syndrome.  I hope having Asperger’s Syndrome included in the autism criteria with the sensory traits being a part of the criteria will help others.  Life is easier when you understand your child and you have the tools to help them.  We did not help her enough with some of the sensory sensitivities because we did not understand.  This caused problems for her and for us.  It also caused her teachers to fail her and contributed to the bullying.  Understanding and getting the right help makes a world of difference.

13 comments

  1. “I see the value of medication in limited cases although I think doctors need to be very careful when they prescribe psychiatric medications to children.”

    I so agree with this statement, with the stress on ‘limited cases’! I am not for behavioral medications, because they sound so risky and unnatural, but then maybe since I don’t have a first hand experience on these kinds of drugs, I may be ignorant to this matter.

    You seem to have done everything within your power and knowledge to help your daughter and I salute you for that. Parenting itself is hard and humbling enough, what more to a child with special needs.

    More power to you and your family. Most of all, through your story, may we ALL have greater understanding …

    • Charlotte,
      Thank you! I agree with your emphasis. I think given the side effects of medications, they should not be given as a first line of defense. Many things in life are self resolving. During a routine checkup a nurse decided I was depressed. It was less than six months after my mother died and during the time we were trying to figure out what was going on with our daughter. I laughed at her and explained that it was appropriate for me to be sad, that I was still functioning fine, working, doing routine tasks etc. This is not depression in my opinion. We have a mindset in our society that there is a pill for everything and the reality is sometimes it is very appropriate to be sad and even angry as long as you are not at risk to harm yourself or others.

  2. You know, all the stuff you did sounds like exactly what she needed! Although her progress may have hindered her from getting a diagnosis earlier, it certainly has given her a much better start on her life and that is what counts in the long run. It is rough that you had to figure it out on your own rather than having the right people to support you and guide you through it, though.

    • AM,
      I hope the more people we educate, the more the doctors will become educated too, so others avoid the problems we faced.

  3. I wish that I could say I’m surprised by the psychologist, my peditrician dismissed my concerns also. But as mother’s we always know. And it’s great that you didn’t listen. You kept searching. Thank you for sharing this with us – I am sure it will help lots of other parents and validate their concerns.

  4. Your post reminds me of how I overlooked my son’s things for the first few years excusing it as sibling rivalry, toddler behaviors, being just a boy, etc. while giving him (unebenounced to myself) a perfect sensory diet for his first 18 mos when he was an only child. (It was at about 18 mos things started to show – silly me. Hindsight is 20/20.) Anyway, I am glad I finally “came to” and started seeking help. I pray it helps prevent our son (and us) from dealing with some of the things your child had to cope with.

    Blessings!

    • Martianne,
      I hope so too! I started my novel and blogging to help others and my daughter started her blog a few months ago for the same reason. We have both had the added benefit of finding others help us as well. Blessings to you and your family!

  5. Pingback: Best of the Best, Edition 9: Therapy and Special Needs Kids :: Help! S-O-S for Parents

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