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.

Major Guilt and Buckets of Tears 16

It is either already or almost Thursday in much of the world so instead of Wordless Wednesday I share this post inspired by Breathe In Now « Try Defying Gravity.

Mistakes Made, Opportunities Missed and Guilt

I still cry sometimes over all the mistakes made and the opportunities missed. I think it is a common parental condition that comes with the autism spectrum diagnosis. I usually try to avoid talking about it publicly because I know my daughter hates to see me cry, not because she does not care, but because she cares too much. The diagnosis does not bring the tears in my case, the guilt does. All the years we failed to understand her and caused her life to be more of a struggle than it should have been bring tears.

Opportunities Missed: More Understanding, More Family Time, and More Travel

There are buckets of tears for opportunities that we missed, not for more therapy, but for more understanding, for more family time including travel that included consideration of her sensory sensitivities. The tears flow over the visits to Georgia never taken to visit my family after disastrous travel experiences due to our lack of understanding of transitional and sensory difficulties. I flew to Dad’s funeral alone when she was fourteen months old for this reason and to Mom’s bedside as she lay dying, alone again, for the same reason. I cry for all the times I failed to adequately explain to family and friends how much I wanted to be there and why I could not.

Others’ Lack of Understanding and Condemnation Including Doctors

Rivers of tears fall when I remember all the times I failed to protect her from others’ lack of understanding and from their condemnation of her and us. I cry for all the years we allowed doctors to treat her like a lab rat instead of a child with a big heart. I cry for the years we treated her differences like they are something to be ashamed of when they are not.

Seeing Her Heart

More tears for every time people have let her down and I have failed to call them on it. Many still do not see the heart of my delightful child who is now a wonderful teenager, soon to spread her wings as she blossoms into an exceptional young woman. I cry because I cannot get all those wasted opportunities back.

Cherishing Now

The best I can do is cherish the time we have today and hope and pray for more joy in her life in all of her tomorrows.  I encourage her as she shares her story, and I work to educate others so other little girls and their families benefit from our mistakes.  I work on forgiving myself and others, as I hope and pray for a future where acceptance and kindness are the norm regardless of people’s differences. I also pray everyday asking God to send his angels to watch over my family and to help heal the world.  I am grateful for the Delightfully Different Life I get to share and for the opportunity to educate others.

Autism Myths, Legends, and Mysteries of Sleep 15

This post is for Danette’s wonderful Best of Best Series.  Click on the badge below on July fifteenth to see other posts on this subject.  FYI: My daughter approved this post.

BestofBestThe myth is that if your child cannot fall asleep it is due to either anxious parenting or lack of firm parenting.  The legend is that those on the autism spectrum can totally avoid sleep problems if they avoid sensory overload and they are in a calm environment.  The mystery is why those on the autism spectrum have trouble falling asleep and staying asleep.

Too many parents of children on the spectrum experience judgement for their child’s sleep problems and are given poor advice as a result.  I am one of them.  I can tell you now that if you talk to my fifteen year old that she will collaborate that the environment was quiet prior to her bedtime, and I was calm as we read her bedtime stories, told her stuffed animals good night and said her prayers during her toddler years.  Her bedtime was the same every night too.  Still she rarely slept more than six hours and she frequently had trouble going to sleep and went through periods of waking up several times a night.  She completely gave up her daytime naps unless she was ill by the time she was three.

Parents are also told that if they remove bright colors and all electronics from the bedroom and keep the house quiet their child will be able to sleep just fine.  Some recommend adding deep massage and/ or aroma therapy.  My teenager will tell you this does not work for her.  There are many times that she has no idea what keeps her awake.  Her mind just has trouble shutting down when it is bedtime.  She does eventually fall asleep.  She does get enough sleep to function either by taking naps or by sleeping longer some days.

No one knows for sure what causes those on the autism spectrum to have problems with sleep yet it remains an issue into adulthood for many.  Baylor College of Medicine believes it possibly is due to alterations in the production of melatonin.  You can read about their study by clicking on this link: Treatment of Sleep Problems in Children With Autism Spectrum Disorder With Melatonin – Full Text View – ClinicalTrials.gov.

I believe we need to quit believing there is a one size fits all range of needed sleep or even for the time of day people sleep.  Maybe some children and some adults do not need as much sleep as others.  Maybe some people are born night owls and need to sleep later in the day.  Mayo clinic seems to think this is true for teenagers anyway.  Click on this link to read more: Teen sleep: Why is your teen so tired? – MayoClinic.com.

Let me know what you think!

Pondering Changing Directions 10

Cattle Egret - CopyBubulcus ibis - CopyMy camera 041

There is a new kid in town and no it is not this bird.  The bird is a Cattle Egret a.k.a. Bubulcus Ibis.  I have been wanting to get a picture of one and today I was able to do this.  His pictures seemed prefect for this post. 

The new kid is someone I love dearly and whom I totally support although I am not adding her link or mentioning where you can find her.  This is a precaution I feel strongly about since she is a minor.  I am following her just not publicly although I am glad others are following her publicly and I encourage you to do this if you have not.  I am very proud of her and I am passing the reins regarding sharing her story to her.     

That is why I am not answering questions directly related to her for future post although there will be a post of answers to questions on Mommy Lebron’s blog tomorrow.  She is aware of my answers and is okay with them, but I am not comfortable with any further questions directly about her.  Again, I want to protect her as much as possible while still encouraging her.   

Related to this, I am having thoughts about starting one or two new blogs.  I want to keep my life, as an advocate for tolerance and acceptance of differences for those with special needs, separate from things I want to post related to brain storming ideas and the writing process for my next novel.  I plan to change the tone of this blog to more general topics related to autism spectrum, bullying, and tolerance rather than specifically as it relates to my family. 

In addition, I still plan to continue to write about forgiveness and gratitude.  I am not sure if I should continue to post my forgiveness and gratitude posts here or start a third blog as obviously some of these posts are directly related to bullying issues and to my beautiful daughter.  Your thoughts on this one might help me with my decision.      

All of my blogs will be accessible from my author site as pages whatever I decide.  I hope you understand my decision.  I will be blogging here at least weekly until the end of the year.  I may decrease the posts here after that, but I do plan to keep the blog.