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.

Blooming Orchids

I try to use “blooming orchids” instead of other “choice words” when something upsets me.  It also is what I enjoy most in my backyard. “Someone” I love also did an excellent job of comparing autism to an orchid last week. She said, “They symbolize both strength and beauty. They’re also very distinctive because they are so different from other flowers.” She went on to say that they are like people on the spectrum in that they are misunderstood because they are different. 

Explaining Tsunami Causes, Fears, etc. 10

I do not know if CNN or Fox showed the video of the exposed reef on Oahu, but seeing the initial video scared me in a way I cannot even begin to explain.  This is my neighborhood.  I have walked along this beach with my children when they were small.  I have read stories that talk about the force of the waves that come in after the waves recede.  My home is not in an evacuation zone, but there are only five houses between me and the street where the zone ends.  A drainage canal that goes from the mountains to the ocean is directly behind my home.

The news caster mentioned seeing a pueo, a Hawaiian owl, swoop down near the water.  I have lived in this neighborhood for seventeen years and I have never heard an owl although I have listened for them at nighttime.  They are no longer plentiful in this neighborhood like they once were.  You can read more about the pueo and the role they play in Hawaiian legends by clicking on this link:

Pueo, The Protector – The Hawaiian Owl.

I found a very information article to explain tsunami risks that might explain further how and why this force of nature occurs.  You can click on the link below to read it:

Tsunami.

A wonderful young woman, our former baby sitter, dog and house sitter, and daughter of our close friends is currently in Japan for a year of college study.  Thankfully she is okay.  My children attend school with Japanese nationals and others who have family in Japan.  Some of their classmates spend spring breaks and/ or summers in Japan.  Spring break begins here on the eighteenth of this month and some probably would have been there if this were just one week later.  The headmaster at my daughter’s school is there now, but he too thankfully is okay.

I hope all of you will continue to pray for those in Japan and forgive me for not commenting on other issues now.  I turned fifty-three on Saturday, but we kept the celebration small, just family as this week has already held too much excitement as I know my friends on the spectrum will understand.  I will return to my regular blogs later this week, but I need a break as I continue to pray for those in Japan and try to get my family back on schedule for Monday after our sleepless Thursday night.

A Sibling Is a Gift 9

I often tell my daughter that her brother is the best gift I ever gave her and I honestly mean this. Of course having an older sibling is also a gift. There are several reasons I believe having a sibling is a gift.

The first is that you have someone who shares many of the same life experiences. They know exactly what you mean when you refer to a funny family story. Plus, when you want your parents to change a rule, you have an ally, and if Mom and Dad seem unreasonable there is someone to agree with you.

Siblings are our first friends and they help us to learn valuable life skills. We learn negotiation skills and tolerance of differences by working to resolve disagreements that arise with our siblings. Working together to get something you both want also gives you team building skills.

People may think being the younger sibling of someone on the autism spectrum is hard. However, my son and I both know that the hardest part of our lives has never been related to his sister’s diagnosis. The hardest part has all been related to the bullying.

This made my son much more aware of bullying issues than many of his peers. He talks to me about things that happen at school because he knows he can trust me to try to help him resolve issues. He knows keeping quiet or allowing someone to get away with abusing someone is wrong. He still has trouble with not wanting to “tattle,” but he does realize the value of the bystander and that “reporting,” people who harm others is important. These are all things he learned from having a sibling.

The value of siblings does not end after you are grown either. I am grateful for my brothers still. Two of them were there for our parents when I was far away. The third was also far away; therefore, I have someone who understands how hard being away from home was as my parents aged. My husband and I have implemented plans to try to diminish the burden on our children as we age. Still, I think they will be grateful for each other when the time comes for them to take on the responsibility of making hard adult decisions.