Paul loves music. His favorite instruments are the piano and the organ. He also loves legos and riding his bike. He is generally a happy little boy. He is obedient and likes to follow all the rules. His teachers have told me, “We wish we had a classroom full of kids like Paul.” He is very endearing to most adults.
When Paul was a toddler, before we started occupational therapy, he would play church all day. My vertical blinds were the organ pipes and he would stand in front of them to sing and conduct the choir music. He would say prayers, give talks, and frequently remind me that I needed to be reverent. I look back on that time and find it very touching that when he couldn’t make sense of his world, he found comfort in playing church.
Paul was born at 26.7 weeks, weighing just 1 pound 7 ounces. He was in the NICU for 11 weeks. The scariest part of our hospital stay was when he got a staph infection. He was just a couple of weeks old, so he was still very critical. It took such a toll on his body that he had to have blood transfusions every day or two. It was very scary. He was still very small when he came home from the hospital, weighing just 3 pounds 14 ounces.
We started early intervention services about a month after he came home from the hospital. Every gross motor skill had to be taught and we spent countless hours working on things like rolling over, sitting up, crawling, walking, and standing up from the middle of the room.
When Paul was about 9 months old developmentally (when babies are premature, you measure their development from their due date), we noticed that he was spending hours a day kicking the floor. That was our first experience with sensory issues. We worked with an occupational therapist through early intervention, and started brushing his skin with a special brush and doing joint compressions. Within a month, the kicking had almost stopped.
When Paul turned 3, he did not qualify for early intervention services. I cried at the meeting. I knew that he still needed a lot of help, but he was just above the qualification level. I was able to get him in the same preschool class he would have been in, but as a “neurotypical child.” Within a month, his teacher told me that I really needed to get him services. A few months later he qualified for services and was able to get an IEP.
During this time without services, it was very hard to know how to help him. He was singing all the time. It was like he operated on another planet and I didn’t know how to reach him. After a particularly hard day, I pulled out the phone book and tried to find a private occupational therapist. I knew we had seen progress with occupational therapy before and I just needed someone to show me how to help my child. He was diagnosed with Sensory Processing Disorder and we started weekly visits with an occupational therapist. My husband and I both went to every occupational therapy session. It was life-changing for us–it gave us the tools to help Paul learn how to cope in his world. He was later diagnosed with autism when he was 4 1/2. His official current diagnosis is PDD, which is on the high-functioning end of the autism spectrum. Last year, when we took him to a neuropsychologist, he was also diagnosed with ADHD. His ability to plan how to carry out a task (executive function) is extremely low. He also struggles with anxiety.
Paul has worn glasses since he was one, including bifocals for the first four years. He had surgery when he was 5 to correct his eye alignment. For the most part, his eyes look like they are working together now, even though he has times when his brain is only using one eye at a time (usually when he is tired). He does not see 3-dimensional.
Paul has had a severe hearing loss in his left ear since he was a baby. The doctors think that it could have been caused by a drug he was given in the NICU to help him with the staph infection. (He was not very old when he got the infection, so the drug really saved his life.) He has worn a hearing aid in his left ear (usually just at school) from the time he was 3. Recently, he lost some hearing in his right ear. He now wears hearing aids in both ears all the time.
Paul has been a blessing to our family. Even though we have been stretched financially, physically, and emotionally, there are things that I could never have learned without this experience. Every time I have felt discouraged or overwhelmed, God has helped us find the therapies that we have needed or has provided a way for us to meet someone who has given us the ideas we have needed in that moment.