Each week in Moms Talk, our Moms Council consisting of local Marple and Newtown parents, take your questions, give advice and share solutions.
April is Autism Awareness Month. This past week some very scary numbers were published by the Center for Disease Control and Prevention. They estimate that one in 88 children have been diagnosed with an autism spectrum disorder. That's disturbing, especially since it is a 78 percent increase since 2007. The numbers are scary, especially for boys–where 1 in 54 boys are diagnosed versus one in 252 girls are diagnosed.
I'll be honest, I wouldn't know what to do if a doctor told me my child was on the spectrum. So I reached out to local moms to ask them. A lot of moms responded telling me they were anxious to hear what I found out as they need help themselves.
Some moms gave me answers but asked me not to publish them. Why the secrecy? There is nothing to be ashamed of when it comes to autism. It sounds like an epidemic that needs to be focused on so that we can find answers and change those numbers for the better. Here is what I asked:
- If you have a child with autism–what services and help are available in the Marple Newtown area?
- What kind of help does the Marple Newtown School District give?
- What advice do you have for parents who have just heard their child has a autism spectrum disorder?
- What do you think about this huge increase in diagnoses?
Answer from Mary B. (mom of 2):
1. I have a 12-and-a-half-year-old son with Aspergers Syndrome (high functioning autism), Tourettes Syndrome, OCD (Obsessive Compulsive Disorder) and sensory integration dysfunction. He was diagnosed in third grade (Culbertson Elementary School).
2. Marple Newtown apparently has an autistic class for children to work on social skills, however, we were told by the then acting principal (Tom Cook) and the school psychologist that our son was not severe enough to qualify. We have since found out that he should have been placed there, and would have benefited by three missed out years on social skills!
Marple Newtown does have limited help and programs, however, it is difficult to come by and restricted, in that the staff that is handling these programs are mostly not trained in handling the spectrum of issues that go along with autism. Our son has a significant, documented history of bullying and abuse throughout his school career (he is now in sixth grade at Paxon Hollow Middle School) and not much has improved.
Our son was assaulted twice this year within five months of each event (the most recent was just March 1–he was targeted and beat up in the boys bathroom. A couple of boys physically assaulted him, while several others came in to watch!
We have been repeatedly told that everything is being done to keep him safe and that they have plans in place for this and yet it keeps occurring. It took this assault to finally–after four years of begging–to get my son a one-on-one assistant to help him navigate through his day. They have these children "mainstreamed" with little or no intervention that is desperately needed, especially at a young age to better equip these children for later life.
3. Get your children involved with social groups (such as ASCEND through MEET UP, a local Aspergers social group that I am an assistant for). Also, find a reputable, specially trained in Aspergers, counselor and make sure he/she is involved with school IEP meetings and plans for your child.
Find yourself an advocate to help you navigate the very well practiced negotiations that the school will have you involved in. They are very practiced in these meetings, and if you know your child needs help, you are going to need someone who is just as savvy to navigate these meetings.
4. I don't believe that this is caused by something that we are eating or breathing or environmentally, etc. This seems to me to be occurring on a more molecular level during the development of follicle to fetus to baby. There is something occurring at the cellular and/or genetic level that is creating a miscommunication in the development of certain areas of these children's neuro-development.
For a while I even thought it could be something as simple and commonly used as the prenatal vitamins that women take, and how they are processed by the mother and developing fetus. Whatever is causing this is happening prior to birth not after. Finding something that is a common link will be the key–something that all parents are doing prior to conception, or during fetal development (perhaps at the genetic level). I believe that that will give us the answers.
The more open discussions about autism and the Marple Newtown School District, the better. I truly believe that the children will benefit from open communication rather than the "behind closed door" quiet meetings that are going on now.
Answer from Holly S. (mom of 2): As the mother of a son with autism, the best advice I can offer to a parent who has just gotten a diagnosis is to join a support group and find parents whose children are around the same age or a little older. Doctors are able to give the diagnosis, but they are not familiar with individual communities and school districts.
The DELCO Pass is a support group for parents in Delaware County which has monthly meetings and an online community. It is a great way to find out about local services, programs, and therapies. It's also very helpful to be around parents who can understand what you are going through. Balancing family and work in addition to the numerous therapies, doctor appointments, paperwork, etc., can be emotionally draining. It helps to know there are other people out there who are going through the same thing.
Every child with autism is unique. There really is not a "one size fits all" program for autism. It's important to look at your child's own strengths and weaknesses. Many children need lots of speech therapy, whereas others may need more focus on social skills or behaviors.
If your child is not already in Early Intervention, contact them ASAP to be evaluated for services. Depending on the age of the child and their individual needs, there are many educational and recreational programs within the Marple Newtown area.
The Delaware County Intermediate Unit has many classrooms suited for autism. There are also private schools in the area that cater to children on the spectrum or with developmental delays. Not all children on the spectrum need a specialized school setting. There are plenty of pre-schools in Marple Newtown who are extremely accommodating to our kiddos.
For fun and recreational activities, there is the Challenger Sports League, MusicWorks, horseback riding and many more that are convenient to this area. The Variety Club of Philadelphia sponsors many activities for children on the spectrum, including an event at the Please Touch Museum, The Aquarium, Sesame Place and the Zoo.