Making hard decisions

So, as any parent knows, you are faced with making hard decisions about your children's life. As soon as you announce you're expecting, you start getting bombarded with advice on a wide range of topics. Which pediatrician you should use, whether to vaccinate or not, and of course; to spank or not to spank. I think, that as a mom, my greatest fear is that I would make a wrong decision regarding David and his treatment. I am forever questioning the paths I have taken with him and wondering if it has helped/harmed him.

I recently read a book called, The Boy Who Loves Windows by Patricia Stacey. It is about a mother who's son was born with autistic tendencies and her heart-wrenching journey on his treatment and success. Every day for the first six years of his life, she explored and tried multiple therapies, all the while questioning herself. I found myself relating to her worries and concerns about treatment. "Is this the wrong/right one? Should I do more/less of this one? Is he connecting?"

One of the biggest decisions I had to make with David, was the decision to start treating him, not only with non-traditional/traditional therapies, but with medication. David has been in Speech Therapy for 2 1/2 years. Occupational Therapy for 2 years. ABA (Applied Behavioral Analysis) Therapy for 1 year. He sees a Psychiatrist every four weeks and has been seen by allergists, neuro-psychologists, play therapists, feeding specialist, nutrition specialist, and multiple other professionals at various times. He also receives all these therapies at school on a weekly basis on top of his weekly appointments through the private therapists.

We have engaged him in swim lessons to build strength and motor coordination. Gymnastics for balance and control.  I have built sensory areas for him in our house: crash pads, huge box of beans, spider balls, fidget toys, and weighted/compression vests. We participate in Music Therapy (3 months at a time) and a host of other activities.

After much research and debate, I decided that it was time to start David on medication back in February. It was a gut-wrenching time for us and it became very obvious that David needed more help than he was getting in his therapies. This was not a road I wanted to go on, especially since he was only three! I felt like I was failing him. Giving up to early. After talking with his team of private therapists/doctors and consulting with his team at school, we decided to start him on a medication called Risperidone. It is an anti-psychotic that help stabilizes his mood swings. It was like we found the missing key! His behavior was manageable and he was still the same impish, sweet boy that I love!

He's a real "super hero" in life!

Davids mood swing cycles were on about an eight week loop, and the first dose lasted for a couple of months before we had to up his dose. The second dose helped the cycle extend to a twelve week period! Form there it went to sixteen weeks. Clearly, I had made the right decision regarding this step. And then the bottom fell out... About a month ago, Davids mood swings started back up and we just figured it was time for a dosage change. After two weeks with no change, we upped it again. It had an adverse affect on him and things went hay-wire. Uncontrollable crying for hours, screaming fits, and his stimming (self-stimulating regulatory) behavior (head banging, stomping, and hitting/touching everything) went way beyond control. ASD kids do that to retain a sense of awareness to their surroundings like grounding themselves in reality. We stopped having play dates (except with my amazing cousin rachel/cliff and their sweet boy Cade. They really get how to handle him). couldn't eat in public, going to the stores were a nightmare, and school was a disaster. I felt like I was in a prison called home. reduced to exhaustion and tears.

So here I am again faced with two hard decisions. I know we need to find another medication for him as clearly the Risperidone has reached its peak effectiveness with David and I need to decide on whether  to add a new therapy for him called Floor Time.

Floor Time is a program started by Dr. Stanley Greenspan that focuses on engaging the child, gaining joint-attention, through play. I believe it will be a good fit for David but an expensive decision for us. Of course insurance won't cover it, and at almost two hundred dollars an hour (3 hour sessions a week) it would be a big obstacle to take on. And should I drop one of the therapies when I add this new one? Is this to much therapy for a four year old? If i drop one will it have a negative affect on him?

we also are thinking that instead of a mood-stabilizer medication that a non-stimulating ADHD medication would have a better result with David. We have already weaned him off of his Risperidone and started a new med called Intuniv but it made him lethargic and emotional. There is a possibility of adding a stimulating med on top of the Intuniv to help keep him focused and not stimming. I just don't know... It's hard because he can't tell me if the medicine makes him feel "funny" or not and to wean/start a new medication is a month long process.

So here we are at a pretty important intersection in Davids life and I am plagued with doubt and fear of making a wrong turn. I know that out of all the choices we are faced with, we will come out on top in the end. Each decision we have made so far, although challenging, has turned out to be the right one and I just have to have the confidence that whatever we decide it will the right one too. As a mom, you only want the best for your kids and for them to lead healthy happy lives. I pray, and ask you to do the same, that God will guide us and make the way shown on how to achieve this healthy happy life for David.

David my very own "Mr. Incredible"