By: Samia S.
My name is Samia and I’m a mother to a special ten year old, Zaki, with Autism. Autism is a developmental disorder that can have a variety of symptoms. The most common associated with autism are challenges with communication, social interactions, and repetitive behavior. April is known as autism awareness month , so I was excited when Sana asked me to do a guest blog talking more about autism.
Autism isn’t something that one is diagnosed with at birth.
As I mentioned, autism is a developmental disorder, and isn’t something that one is diagnosed with at birth. In my case, my son was born normally with no complications. We didn’t see any abnormal symptoms in the first six months. He met all his milestones either on target or even ahead. He was sitting by six months, and even walking before he was one year old. Our first challenge we experienced was his aversion to baby food. I do have an older son as well so I was able to identify quickly that this wasn’t normal. He wouldn’t tolerate baby food and would throw up excessively. The doctors toyed with different scenarios ranging from acid reflux to a digestive issue. Not a single doctor mentioned it could be a sensory issue, which we found out many years later. His weight dropped dramatically and he went from 90th percentile down to the 5th percentile. By the time he turned one, they were ready to do more invasive testing. By then, we were able to give more solid food and that helped curb the vomiting. We never had to move forward with any procedures since his vomiting was subsiding.
He met all his milestones either on target or even ahead. He was sitting by six months, and even walking before he was one year old. Our first challenge we experienced was his aversion to baby food.
Around eighteen months we started to notice he had regressed slightly. Regression is a common sign in autism which we didn’t know at the time. Basically it means that kids start to lose speech and social skills that they have already mastered. In our case, Zaki had forgotten how to recite some of the numbers and words that he knew very well. We also noticed that his speech was not developing as well. We brought our concerns to a pediatrician who said that he was still young, and some children take time to learn to talk.
By three and a half, he was pretty nonverbal.
By two and a half, we had started speech therapy and also enrolled him in a part time preschool program. We had requested an evaluation but many pediatricians didn’t encourage them at a young age. The reasoning was that speech therapy and preschool would help with the issues he was experiencing. By three and a half, he was pretty nonverbal. Doctors were worried that he might be deaf and Zaki underwent an ABR. When he passed that with flying colors, our pediatrician approved the evaluation.
The evaluation was performed by a development pediatrician. She spent a total of 3.5 hours with him spread out over three different sessions. By now, it was very apparent that something was wrong with Zaki and we wanted to know answers. The developmental pediatrician diagnosed him with autism, on the severe end of the spectrum. We were instructed to begin with Speech therapy, occupational therapy, and ABA (applied behavorial analysis therapy).
At the time, ABA was a newer type of therapy that wasn’t covered by insurances in Georgia. We were very worried about his lack of speech so enrolled him in multiple speech sessions. We also moved him to a special needs preschool where he could receive more intensive therapy. More sensory issues had popped up by then. His sensory issues entailed of routine problems, refusal to wear certain materials, and also to certain sounds. An occupational therapist helps with sensory issues so we began weekly sessions with an OT.
We continued this regimen for years but didn’t see many positive results. Because he was diagnosed at severe end of the spectrum, we were worried he may nonverbal for the rest of his life.
We continued this regimen for years but didn’t see many positive results. Because he was diagnosed at severe end of the spectrum, we were worried he may nonverbal for the rest of his life. He received a communication device and went through sessions on how to use it properly. During this time, we spent a lot of time doing research on the web, going to autism support groups, and basically any avenue we could get more information. We started learning more and more about ABA therapy and the benefits of it.
Within 6 weeks of starting ABA therapy we started to see results. His vocabulary has improved tremendously. He’s still considered behind, but he’s communicating.
Since we had not seen significant results from speech, we decided to try ABA therapy when he was seven years old. Within 6 weeks we started to see results. We continued ABA therapy and now he receives it 10 hours per week. His vocabulary has improved tremendously. He’s still considered behind, but he’s communicating. He’s learned how to read and his sensory issues are under control.
In summary, we have learned that therapy is a lifesaver. At one point, doctors weren’t sure our son would ever talk. But we continued therapy and have seen tremendous results. I would encourage anyone who has a special needs child, to give them as much therapy as you can. If finances are an issue, there are financial aid programs available. Don’t let that deter you. Therapy makes a world of difference. Zaki is now doing community therapy as well, where he’s learning skills to be independent like grocery shopping.
My advice to moms of special needs child is to be your I child’s biggest advocate.
I wish we had pushed harder for an evaluation earlier, however I kept thinking medical professionals know more. While they are definitely instrumental, each parent knows their child like no one else. Experiment with different kinds of therapies, as no two kids can be alike. What works for one, may not work for another.
Acceptance is key. The sooner a parent can accept that their child will always be different, the easier it becomes to realize the unique qualities that make them so special and advocate for them.
We wish we had started ABA therapy earlier but am grateful for the wonderful therapy he’s getting now. Also, acceptance is key. The sooner a parent can accept that their child will always be different, the easier it becomes to realize the unique qualities that make them so special and advocate for them.
***All pictures submitted by the author.
