The revolving door

When most people bring their babies home from the hospital there is a bonding period, there is company from close friends and relatives that all want to see your new baby. It wasn’t that way for us. The doctors had all warned us that we should not even consider having anybody around the babies until they were about a year old. The reason was their lungs were very susceptible to illnesses and even a common cold could turn much worse. So, there we were very isolated from all except the early intervention nurses that arrived every couple of days to check on them. In those days the services were very good and at least it was piece of mind that things were going well. People called to check on us, but nothing was like the picture of Motherhood that I had painted for myself or for my children.

Once the children were turning one and it was clear there were significant delays in motor skills, swallowing, rolling over and crawling then my home became a revolving door. Each child was seen at least an hour a day by either a speech therapist, a physical therapist, an occupational therapist or their in-home intervention at least 3x/week. Yes, we were very lucky to have this available to them and I’m certain that it made a huge difference. It just never meant having any time to ourselves to bond with them. We always had a person telling us something that was not going well. We certainly could see the issues and it felt like we never had privacy. I know it sounds ungrateful but having this go on for a few years was enough to drive a person crazy. It also did not allow for any respite or private time for my husband and I as a couple. That is one of the reasons there is a 75% divorce rate among families with special needs children. In case you’re wondering we are divorced, but I won’t go into details on that topic.

Robin was the first to be officially diagnosed with Autism Spectrum Disorder, I took her to a specialist in our pediatrician’s office and after watching her flap her arms, toe walk and not respond to any verbal cues, the Dr. said, she’s got Autism. Handed me a pamphlet and pretty much left the room. I went completely numb. I had no idea whether she could be helped, was it curable? What to do next? I have no idea how I got home. I do know when I got home, I looked at my husband and fell apart. I cried the proverbial river and then just as swiftly as the tears came, they left. I had a new job, I needed to find answers to all the questions I had in my head. All I knew is I wanted to hear her speak, say Mommy again and ask me for juice. See the hard part was that she did at one time have some speech, then one day like turning off a light it was gone. Autism can be cruel like that, and I will not argue what exactly happened as the trigger. All I know for certain there was a trigger, and I can say it may have been this or it may have been that but what I am sure about is she has a neurological disorder, and somebody needs to find a way to have it go into remission. The word “cure” is not in my vocabulary.

There’s one personal note that I want to make here, although people feel it is appropriate to take an interest in what may have caused the Autism, I wish they would not ask. It is something almost every Parent of a child with Autism would like to know, why? Please don’t ask, unless you’re sought out as a medical or alternative medical professional with a way to help because it is something I assure you we have asked ourselves enough times to know it is something only G-d or a higher power knows for sure.