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.

Final Steps to Learning How to Forgive 4

My Angel Music Box ©Delightfully Different LifeBeginning the Final Steps

The final steps to forgiveness from Dr. Luskin’s book Forgive for Good begin with recognizing what he calls the unenforceable rules of wishes and hopes.  This is what I fail victim to recently when I got upset about something that was out of my control.

Sometimes we have to accept that the goal we set will not be reached in the way we envisioned.  That does not mean our goal is bad, it just means that we do not always have control over every situation.

Chosing Alternate Goals or Routes

We can make a decision to alter our goal or go a different direction when this happens rather than stewing over our disappointment and anger and allowing it to eat us alive.  This may mean severing a relationship or it may mean looking at it from a different view and adapting our plan, but either way the point is to get unstuck so we can move on with our lives.

Instead of demanding others comply with our demands, we have to change our thinking to hoping our wishes come true and working to make this happen while realizing there will always be road blocks in life.  Some we can go around, others we must go over or even under, sometimes we must turn around and regroup or walk or even run away. On a rare occasion maybe it is even okay to plow through the road block. However, first we must carefully weigh the danger and determine if it is safe or at least worth the risk.  We must put aside our anger to make the best decision.

Refocus on Positive Intention

We need to turn the focus back to our positive intention and find another way to make that intention our destiny.  I believe that our true purpose in life is to learn from our mistakes.  Dr. Luskin  states, “The person or event that hurt us is important insofar as we can learn from the situation.  In no way, though, do we allow our grievance to distract us from our goal.”

He goes on to say what so many of us heard growing up. Our greatest revenge on someone who hurt us is to move on and find peace.  He explains how to find your intention if you are unsure of what your intention is.

The Last Step: HEAL

The last step to forgiveness is HEAL.

  1. H is for hope.  Hope for understanding.
  2. E is for educate.  Educate yourself that you will experience disappointments.
  3. A is for affirm.  Affirm your positive intention.
  4. L is for Long-term commitment.  This is your long-term commitment to your well-being by doing whatever it takes to help you move forward.

I choose to educate others to help them avoid the same mistakes as part of my long-term commitment to heal from the mistakes I made when I did not understand my daughter.  Your long-term commitment may involve assertiveness training, counseling, stress management or something else. Near the end of the book Dr. Luskin also discusses ways to forgive yourself. Like me you may have to go back to some of these steps at times when someone unexpectedly pushes your buttons and you find yourself once again needing to forgive yourself and/ or others.

I am grateful for the reminders throughout this book that I can regroup and go back to the stages when I falter in my forgiveness journey. I am grateful for all of the angels on Earth and in heaven who help me with this and I am grateful to those of you who share this journey.