For several years, I worried about my son’s hearing. We had noticed at around 1 year old, that he wasn’t responding to sounds. At the time, there were a lot of issues to deal with. We were switching doctors. Trying to find one that would help and would take our insurance. His new doctor noticed that the back of his head had a big, swollen area.
This was caused by him continuously falling backwards when he tried to stand independently. He would fall backwards, like a tree falling over. I believe that this was one of the reasons that he walked so late. After falling as many times as he did, he developed a fear for standing without holding onto anything.
His doctor arranged for a scan to check that everything was alright. It was. We just had to get the swelling down. Once that was done, we were told that they were no longer going to accept our insurance. A few more attempts and we finally found a doctor that wanted to address his developmental delays.
This led to a series of appointments with specialists. They included genetics, neurologist, ophthalmologist, ENT, and the area Early Intervention agency.
We found out that his eyes were not aligned. That took two surgeries to correct. He wasn’t hearing. Both ears were filled with fluid, and infected. How no one had caught that, I don’t know. He was getting ear infections, a lot, but they weren’t being diagnosed until he was at the point of running a temperature and throwing up. He had an extremely high threshold for pain. Over the years, he has had three sets of tubes put in his ears, plus his tonsils and adenoids removed.
The doctor with the Early Intervention agency that handled developmental evaluations for services, put my son’s development extremely below what it should be. My toddler was functioning on the level of a baby. Services were arranged. He was to receive OT and Speech, along with Physical Therapy, at home. Because we lived in a small town, it was hard to find therapists to come over.
Did I mention the waiting lists? None of these things happened right away. There were months of waiting involved. My son didn’t actually begin services until he was two years old, and then it was very limited. He would be assigned a therapist, then she would quit. That meant we had to wait again for someone new to be hired that could come out to our home.
We had our son put on a waiting list for a special needs daycare center. I had heard great things about it. Also, the OT that was conducting therapy in our home, was also the therapist at the center. There was a waiting list, of course.
Conducting therapy at our home was not easy for our therapists. Toys that made noise were not allowed. They made my son really upset. Looking back, I know that it was because he had extremely sensitive hearing. At the time, I just thought he was afraid of them. Luckily, (I can’t believe I consider this lucky) he had a slight hearing loss, over time, due to the ear infections. This improved his sensitivity to sound. Now, he will seek out sounds, but has to have the radio on in his room at night to sleep. The music helps block out noise from outside. Did I mention that I can’t whisper something to my husband in one room, without my son hearing in another one? All conversations we don’t want him to hear have to wait until he is asleep or not home.
I think that one of the hardest things during this period of time was the waiting. All of the waiting we did to get to see the different specialists, was time we couldn’t get back. Even with all of those visits, evaluations, assessments, etc., the only answer we received regarding his developmental delays was that he was “globally delayed.” And that began several years of trying to get someone to tell us why.