- Posted January 18, 2013 by
Vero Beach, Florida
This iReport is part of an assignment:
Clear View of Study - Parents Proceed with Caution
The Journal of Child Psychology and Psychiatry recently released a study that reveals children with Autism may overcome symptoms. At first glance I think this is joyous news!
However, I must confess that I am always highly skeptical of these releases. It’s not because I don’t embrace good news. Rather, I proceed with great caution. I often believe there is an extremist behind it. It makes me wonder who is profiting from the study.
You see, I think we, parents of children with special needs, are a bit like sitting ducks. We want so desperately to see our children succeed, that we feel like we are being preyed upon. Honestly, when I read news releases like the one issued by the New York Times and NBC on Wednesday, January 16th, all I can think is, “Really? Are they going to promote some new potion or therapy?”
It goes without saying that trust is earned – not given.
The study, posted online, is the largest to date. It is likely to alter the way that scientists and parents think and talk about autism.
The good news about this study is that some children will make big gains thanks to behavioral therapy. However, others may not. The scary part is that doctors do not have a means to predict which children will do well and which will not.
The debate lies in the word “recovery.”
I will tell you that I have friends and close acquaintances that swear their child has “recovered’ from autism. Quite frankly, I am terrified of using this phrase. Even if it were true for my child, I feel like it has boastful "juju!"
I already feel guilty when I talk to friends whose children are in their teens and are non-verbal.
I feel like I am one of the lucky parents. My child finally talked in sentences at age 7. Now at 10 - I have to remind myself that I once cried and prayed to hear his voice. As a tween, he NEVER stops talking!
Recently, I took place in a study that interviewed parents of children with special needs about their parenting styles. The person interviewing me asked numerous questions about how I parented our child from an early age to the present. At one point she stopped me and commented, “You do realize that your strategies are therapy based? Don’t you?” I almost cried when I responded, “I really did not find it instinctual. I had to embrace the knowledge of paid professionals to help me craft a plan.”
As they say, “The proof is in the pudding.” Our son has made great gains. In fact, we have been told that he may not qualify for the diagnosis. The truth is that we have a long way to go in terms of reaching communication, social and academic goals.
I want to encourage other parents. This is my list of “must do’s” for parents of children of Autism Spectrum Disorders. I pray and hope their child will be classified as “recovered.”
1. Early Intervention: This is the greatest road block to helping children. Parents are often in denial.
2. Socialization: It’s stressful when your child has unpredictable behaviors. Exposing them to various environmental and social situations is a form of therapy. In time, you learn to re-direct people with judgmental stares and remarks.
3. Build School Relationships: Just like a successful marriage – it takes a partnership and open communication.
4. Parents forget they drive the IEP: Individualized Education Plans are efficient and effective when you have everyone moving in the same direction. The parent needs to lead this effort. Take the time to have meetings before the IEP. Know the old goals, make recommendations on the new ones, and create an agenda. This strategy is a great way to utilize the team's time. Bring cookies and drinks to keep them energized and in the moment.
5. Involve the home and school teams: I have an email blast that I send out to the home and school team. It documents all of the academic and non-academic accomplishments that occur at home. It keeps everyone connected.
6. Never lose hope: Although these studies can bring encouragement. Involved parents and caregivers make the difference.
7. Celebrate milestones: There is nothing sweeter than seeing the pure joy on the face of a child who achieved something they never thought imaginable!