Our Autism Journey: A Parents Perspective

Family Vacation 2018

My name is Michelle. I work for the Behavior Place, and I am Tara’s assistant. I met Tara about 3 years ago when I was looking for ABA for my son.

My Bear was born on a Tuesday night in November in 2010. A week and a few days early. It was a rapid birth. My water broke at about 4:45 in the afternoon, and he was born at about 6:30 in the evening. 10 lbs 2 oz, no epidural, sunny side up (face upwards), not breathing and badly bruised on his face and eyes from the fast delivery. His birth was pretty much how he lives his life: head first and hope for the best.

Bear December 2010

I felt everything in our life was normal. Bear was a sweet and cuddly baby who slept when he should, rarely ever cried and made all of his milestones. He sat up, smiled, laughed, made eye contact and ate any kind of food you gave him. A little after his 1st birthday, around 13 months or so, things started to change. Bear cried A LOT. He didn’t want to leave the house, and it was difficult to get him in his car seat. He started to refuse foods he had eaten in the past and, if I didn’t mention it, he cried A LOT. I knew in my heart something was wrong, but you can’t quite put your finger on it. My oldest son started to talk at 10 months, complete conversations by 13 to 15 months. He was doing math and starting to read by 2. Bear did none of these. He didn’t talk and had massive meltdowns. What we learned later on was that he couldn’t see very well and that he could barely hear. He got glasses at 18 months and tubes in his ears at about 2 years.

I was late to the EI (Early Intervention) game. People would say that no two children are alike and that I shouldn't compare my children. Or, he is a boy and they mature slowly, not to worry. I called EI when he was 27 months old, January of 2013. By the time I got services it was May, and then he aged out in September to start preschool. My experience with EI was just mediocre, there was so much red tape and policy change during my 9 months with EI, that I didn’t know if it was worth it for our family.  Bear just didn’t get the time in that he deserved. One key thing I learned during that time is make sure you speak up. Ask as many questions as you can to the therapists that come into your home. Be as involved in the sessions as your life will allow you. Make sure you know and have met the supervisor on the case, don’t just settle for your coordinator. Most important, do as much research on the next steps after EI. That is my one regret. I wish I had done more research on the next steps after EI. The time you’re in EI goes so fast that it is so hard to navigate what happens after you age out. You sort of go with the flow of what the school district is telling you. I wish I knew what his rights were and knew that we had choices. Getting an educational advocate is hard, but it is so important that you find one that works with your family. Mental Health Association and Independent Living are free advocates that might be able to help. Again, I stress that you do your own research and find what is best for your child. This will literally become a second or third full time job.

Bear September 2013

Once Bear aged out of EI, he went went to special education preschool. The first year was wonderful. Bear had a teacher that loved to hug and was super sweet to him. The second and final year were….well, I was taught that if you have nothing nice to say, don’t say anything at all.  Again, I can’t stress it enough and please learn from my mistakes. If you aren’t happy, speak up! Find a place that is right for you. Go on social media and ask questions, there are some good support pages on Facebook.

During our second year in preschool, I knew things weren’t getting better. In fact, things were getting worse. He wasn’t talking. He ate the same food, dinosaur chicken nuggets for three meals a day.  Bear was obsessed with Thomas the Tank Engine. He would line up the trains, keep them in specific order and if you moved them, the day was over. We could barely leave the house to go anywhere. Family events were miserable and vacations were a nightmare. We went on a Disney cruise and he cried for 12 days. In December of 2014, I took the leap and made an appointment with a child psychologist in NYC, and we got the shock of a lifetime and some answers. Bear had Autism Spectrum Disorder (ASD). Later, he would get the diagnosis of ASD level 2 with ADHD. Things to tell my younger self are, if you don’t like your doctor, find someone you do like that will be compatible with your family’s needs. I think once you get an autism diagnosis, you become like a first time mom again. You call the doctor every day with questions and needs. You need a doctor that has the time for your questions and is up to date with current Autism related issues and trends.

After I got the diagnosis of ASD, I began to look for services. My luck finally changed when I found Tara. Tara was so easy to work with and so knowledgeable. Over the next 2 and half years, Bear made tremendous progress. With the provider’s help, he began to brush his teeth and over the next year we worked on going to the dentist. It took lots of practice and many trips, but he can now sit in the chair all by himself and use toothpaste. We worked on safety in the home and in the community. To this day, we ask him what his steps are to cross the street. It’s hard to have someone come into your home 3 hours a day, 7 days a week. Of course, all therapy has its pros and cons to it. ABA therapy was such a blessing for us. The pros far outweigh the cons, but it is a commitment. The most important part of ABA therapy is family involvement. Use what they are being taught in therapy in the home. Have the school involved, make it consistent throughout your child's life and you will see the difference and your life will start to get better.

Bear is now in second grade. He has made tremendous progress over the last 4 years. Bear loves to make other people laugh. He loves to hug and is so smart. He can work a room like nobody's business. We call him our used car salesman because he can work those beautiful brown eyes and get you to do whatever he wishes. He can find a work around for almost anything you say. Thomas the Tank Engine sometimes makes an appearance, but we are now firmly into dinosaurs and stuffed animals. Bear loves Build-A-Bear and knows all the people who work at the store along with how to use the stuffer machine and the hold spiel. Food is still a challenge for him, he has a very limited diet. Reading is very difficult, but he loves math and science. Going out in public is still a challenge for him, but we are able to go on vacation. I am so proud of how hard he has worked for his accomplishments. I can’t wait to see were the next few years take us.

Bear November 2018