When I was preparing for the birth of Thing 1 I can honestly say that the word “autism” never crossed my mind. I gave it no thought. We were preparing for the birth of our first child and we couldn’t be happier.
Thing 1 was born 5 weeks premature. Even though he was premature he did not need to spend any time in the NICU! After he was born and a few months passed, we began to realize that things were a bit different for Thing 1. At eight weeks old he was diagnosed with torticollis for which he received about 18 months of physical and occupational therapy once a week along with at-home exercises that we needed to do with him. We also noticed that his developmental milestones were delayed such as sitting, crawling, walking and talking. At first we were told that this was a result of his torticollis but, as he grew, we started to notice behavioral differences in him too.
We noticed that Thing 1 always had to have a certain number of books read to him at bedtime in a certain order. We noticed that he thrived in a very structured environment and did not like change at all and did not transition well. We noticed that he did not engage in imaginative play with his toys. We noticed that he liked to see how his toys worked and then he would organize and arrange them in groupings. Thing 1 used to be obsessed with the vacuum cleaner when he was about 2 years old. He loved to use the vacuum. He would begin to vacuum almost as soon as he woke up. Loud noises and echos bothered him so sometimes he would wear hearing protectors while he vacuumed. He used to like to cut up pieces of foam into hundreds of tiny little pieces and then sweep them up with the hose of the vacuum. He also used to love to do laundry beginning at around age two or or three. He would help me load the laundry and then he would watch the water in the washer until the spin cycle and then he would close the washer lid and watch the water empty into the sink. We spent many hours in the basement watching the water in the washer and the sink. Eventually, he just loved water and would spend hours playing in the water in the kitchen sink.
All of these things started to add up and, when he was in four year old preschool, we decided to have him tested and that’s when we found out that he was on the autism spectrum and had Asperger’s Syndrome. Our lives were forever changed. We had no idea where to begin to look for help. I scoured the internet looking for help and resources and for the best ways to help Thing 1 and to help us to be better parents. I read countless books on autism and Asperger’s Syndrome. I became a fountain of knowledge so that I could help Thing 1 and our family best handle our new journey into autism.
When Thing 1 started Kindergarten we were given the opportunity to send him to a fantastic school which specializes in teaching kids on the autism spectrum and teaching kids who just learn differently. That is how we have always explained things to the boys. We have always said that Thing 1 learns differently so that is why the boys were in two different schools. That is why there have been therapy appointments and speech therapy for Thing 1 and not for Thing 2. It’s always been our way of life and the boys have just accepted it.
Over the last couple of years we began to see a lot of changes in Thing 2 that caused us concern. At first, we didn’t notice anything different about Thing 2, especially since he was hitting all of his developmental milestones. However, we had adjusted our lifestyle to work with Thing 1’s autism. We took longer to transition into a new situation, our life was very structured and we took precautions with hearing protectors for loud noises. Thing 2 had the benefit of these lifestyle changes. However, we thought that Thing 2 just went along with them and we didn’t realize, at the time, that he actually needed those lifestyle changes too.
As Thing 2 was getting a bit older we thought that Thing 2 was beginning to imitate Thing 1. We thought that he didn’t like tags in his shirt or loud noises because he learned that from Thing 1. However, as Thing 1 began to thrive in his new school and he learned to deal with things that bothered him, Thing 2 became worse because he was not receiving that same daily therapy as was Thing 1 at school. We began to realize that Thing 2 really did have trouble with tags, and sensory issues and loud noises. We also started to see symptoms of hyperactivity and a lack of focus appear in Thing 2. This led to an initial diagnosis of ADHD. After about a year, and a lot of discussions, we decided to try ADHD medication for Thing 2. It seemed to help for a few months but then it seemed as if things were beginning to get bad again. The tantrums were increasing as well as his lack of focus. He used to overreact in simple situations and become very emotional. We also saw an increase in his anxiety and he began to take “safety blanket” types of objects to school in his backpack which he left in his locker because it made him feel better.
We knew that something had to be done to help Thing 2. We took him to a place which had special testing for ADHD. We found out that his medication was now making him worse and that they believed that he did not have ADHD but that he actually had Autism. We were devestated. We never saw that diagnosis coming. Thing 1 and Thing 2 present so differently that we honestly did not believe that Thing 2 was on the spectrum. Apparently, the autism spectrum is a lot larger than we had ever imagined. In the end, Thing 2 also ended up being diagnosed, at 8 years old, as being on the spectrum.
The boys’ school has been a wonderful part of our journey. Thing 1 started out in preschool at a private school which he attended through Junior Kindgergarten. Thing 2 attended the same school from preschool through first grade. Even though we loved that school it was clear that Thing 1 just learned differently and needed a different placement. He needed to be taught differently and in a way that he could understand and learn. In Kindergarten we started him at his current school and he loves it. Once we realized that Thing 2 also learned differently, we transferred Thing 2 to the same school in second grade and he too loves it!
There are two teachers/intervention specialists per grade, speech therapy a few times a week at the school, 12-16 students per class, social skills learning and an environment for kids who just need to learn things a little bit differently. We are also blessed to have had a school like that near us. We wanted to send our children to Catholic school and this school is also a Catholic school so we are doubly blessed! Regardless of their individual learning styles, both of our boys are still able to attend Catholic school for their educations.
Now, when I say that the school is near us, that is a relative term. Near us is actually 25-40 minutes away, depending on the traffic and time of day. It is so worth the ride though because of the benefits provided by the school. I am able to drive both boys to school and pick them both up. So it all works out and we are all happy…most of the time.
I have to admit that sometimes it is hard. Sometimes, I think how easy it would be if they went to the local Catholic School which is only seven minutes from our house. I would be back home within 15 minutes of leaving instead of my normal one hour and 20 minutes round trip in the car each morning and each afternoon. When I start to feel sad or frustrated about things like that, I have to sit back and take a fresh look at our life. Our life is good. I love our boys! We CAN live with life on the spectrum. Our boys are each special in their own ways.
I hope that, through this blog, I can share with you the ups and downs of our autism journey. I hope to share resources with you that will help you in your own special needs journey. My favorite form of therapy is crafting so you will also see a lot of crafting on this blog along with family fun things to do. I hope that this little blog can help you on your special needs journey.