Category Archives: Best of Best on S-O-S Blog

Does Special Needs Equal Medication Needs? 5

Asperger's Syndrome, Autism Spectrum, Best of Best on S-O-S Blog, Sensory Sensitivity • Tags: ,

This post is part of Danette’s wonderful Best of the Best Series at S-O-S Research Blog where the topic this month is medication use related to those diagnosed with invisible special needs. I mentioned our bad experience with medications in my Therapy? What Therapy? in August, so you might assume I am totally against medication for this group. I am not.

Yet, I am against medications being the first choice especially for young children. First, you need a full workup to rule out alternative causes and to help assist in obtaining an accurate diagnosis. Yet, we have some psychiatrists who skip this step or who, if they do not completely skip it, still fail to order a complete evaluation prior to prescribing medication.

Unlike one of my fellow bloggers in this series, I do not believe the reason is for financial gain. Wonder why? I spent years working for various insurance companies, and even volunteering on legislative committees for case management organizations. I am also married to a physician. Doctors receive money as speakers, but they also go to extra training on medications and take time away from their practices to do this and most do not take prescribing new medications lightly either.

Remember it is their license on the line if a medication causes life threatening side effects. Doctors also pass on samples of medications to their patients who cannot afford them. I really want to write a post about when and why we stopped trusting any doctors, but that is a post for another day.

None of the medications prescribed for my child were samples, nor were they medications newly on the market, yet they still were unhelpful and inappropriate for her since they did not address the root of her problems, and in fact made things worse. Lack of understanding of her sensory sensitivities resulted in the wrong treatment.

I was given a check list to compare at one point to determine which diagnosis my daughter had, ADHD or Bipolar Disorder. I told both doctors that neither one really fit her, but they suggested I guess as to which one fit best. There is a reason I speak out about wrong diagnoses and especially wrong diagnoses in girls. No one even mentioned Asperger’s or autism at that point nor did they mention sensory sensitivities despite the fact that my daughter had text-book characteristics from the time she was a toddler, if the doctor listened and asked the right questions.

Once we had the correct diagnosis from a third doctor, who is a neuropsychologist and who did the complete evaluation, the psychiatrist asked me why I would want my child to have a diagnosis that no medication could treat. My reply, “Why would I want to treat her for something she does not have?”

Yes, medication can help some children as long as you have proper monitoring for side effects and as long as you have ruled out other medically researched options. Please note that many on the autism spectrum also have comorbidities that can be treated with medication. There are ongoing studies related to autism and sleep problems, so hopefully correct treatment options for this will be available too. I wrote about this in July on my Autism Myths, Legends, and Mysteries of Sleep post.

There are times when medication is appropriate, for instance when, there is a risk of harm to self or others. Even then it is important to monitor for side effects and to reevaluate once the patient is stable. Some medications can be safely weaned with medical supervision.

Therapy? What Therapy? 13

Asperger's Syndrome, Autism Spectrum, Best of Best on S-O-S Blog, Girls on Autism Spectrum, Sensory Sensitivity • Tags: , ,
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.

Autism Myths, Legends, and Mysteries of Sleep 15

Asperger's Syndrome, Autism Spectrum, Best of Best on S-O-S Blog, Differences, Sensory Sensitivity, Special Needs • Tags: , , , , ,

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!

The Good, the Bad, the Ugly of Media Use 9

Best of Best on S-O-S Blog, Media Use, Parenting, Schools • Tags: , ,

BestofBestMedia provides so many good things especially for special needs children.  It offers educational programs, a means for those without a voice to have one, and a place to stay in touch with far away family and friends.  It also provides support from others around the world.  This is the good.

However, there is another side to media devices that most of us are aware is bad.  That is the issue of needing to make sure that children learn to interact with others face to face, not just in cyberspace and that they get outside for fresh air and sunshine and exercise.  Many blame media devices for childhood obesity and other illnesses and most parents try to avoid the all day video games many of our children would enjoy.     

Consumer Reports released the results of a survey in May that indicated that 7.5 million Facebook users in the U.S. are under the age of 13, and about 5 million are under the age of 10.  Obviously, this is where things can start to get ugly.  Social networks have been used for bullying by some and others are looking to harm our children in other ways. 

That is why many sources recommend talking to children about the dangers and some suggest being on your child’s friend list.  Others even recommend having their passwords when they first start using social media so you can monitor and help them correct mistakes before they become major.  I see the value of teaching our children to use media responsibly whether they have special needs or not.

Young children certainly need to be monitored when they first start e-mailing, using instant messages, texting, surfing the Internet, using X-Box Live, or joining social networks even when they are thirteen.  Parents also have to monitor television and movie viewing closely especially for young children whether they have special needs or not. 

Those of us with special needs children may actually be better at helping our children avoid the pitfalls than some just because we have had to do this all of their lives.  It is so important that all parents teach their children that the Internet is forever.  Children need to understand that it can’t just be torn up or erased. 

It is the job of parents and educators to teach children responsible use of the Internet.  Children need to understand that there are laws that apply to certain behaviors and that they can destroy their repetition with inappropriate Internet posts.  Anonymity does not really exist for those who break laws as any computer address is traceable.           

Technology is a daily, graded class for sixth graders at my son’s school.  They learn how to safely navigate the Internet, applicable laws that apply to information on the Internet, as well as, how wrong it is to cyber bully someone.  They are accountable for their actions on the Internet, but parents need to remember that until their child reaches legal age, the parent is also accountable.  Maybe we all need a class like this too!