My son lives in the gap. You know this place — the one where the child’s issues are significant enough to impact their life (and yours!) but not significant enough to qualify for an IEP. As Molly wrote about in Duckery, these are the children that look like ducks to the casual observer but are really geese wearing duck feathers.
Hubby and I have been working with our son since before his first birthday to help him manage his particular sensory challenges. He was getting a reputation at daycare as a biter at 9 months of age. We bought him a chew stick and began feeding him apricots and prunes. The child LOVED these chewy items. He also loved crunchy carrots, which we have unfortunately had to eliminate due to an allergy. He struggled to fall asleep in his classroom – too much noise and way too bright. This was made worse by the fact that he was not on a regular sleep schedule at home either. At daycare, he loved playing with another boy who was a year older than him. My son’s little 9 month old hands would quite literally reach out and pull this boy on top of him. After about 30 seconds the boy would sit back up, only to be pulled back on top by my son. This action would be repeated over and over again. …continue reading
One of the things people know (or think they know) about me is that I can be fearless. From the moment we learned Ballerina and Music Man had Autism back in 2009, I still treated them like Big Brother and acted as though nothing was wrong. As time passed, that philosophy seems to have changed. Is this for their benefit or for mine?
You see, when we first learned they were on the spectrum (we didn’t even get an “official” diagnosis yet), we piled into a car for a 14-hour drive to Disney World just 2 days later. It was a trip we had been planning for months and we weren’t going to let this life-changing news affect our plans. We had already considered the twins’ “quirks” into our day and built our days around what we needed to keep consistent for their routine (meals at specified times, naps (since they were still taking afternoon naps), bedtimes, etc.). And we were introduced to other issues as the trip went on and learned how to adjust what we were doing to accommodate for them (like sitting on the aisle during shows so we could make a quick exit, if necessary). Autism — NAH, these are just our kids. It wasn’t until we came home that we started addressing their issues and started really helping them learn to cope with the day-to-day.
But even through this, our activities didn’t really change — they were just added on to. We still went to weekly playgroups (for all 3 kids). We still kept going to gymnastics classes. We just added in time for their new school or Ballerina’s ABA sessions. Other Autism Parents complimented me saying, “How can you take them to a playground, or to gymnastics?” And my response was always that we do what we have to do — Big Brother needs these things and therefore, so do they. They were still the same kids and the deserved to have the same opportunities.
It has now been nearly 3 years since we took that Disney World trip. It’s now been nearly 3 years of knowing that my children are Autistic. It’s now been nearly 3 years of having my life turned upside down because my view of their future has been tainted by this diagnosis. And somehow, during these 3 years, I became afraid. I still enroll them both in activities so they can experience what their typical peers get to do, but it’s different. With them, I hover. With Big Brother, I encourage him to go and explore, and to potentially make mistakes. I know that he may get hurt (a consequence that I don’t wish for), but I allow that possibility to not disturb me. When we go to the playground for example, Big Brother just goes off and starts playing (he’s nearly 7 now). I stay with Ballerina and my husband stays with Music Man (or vice versa). We don’t let these kids out of our sight for an instant. The twins are now 5. This pattern has been true since Big Brother was 3. Yes, at 3 years old, I would allow my son to run around the playground with minimal supervision. He just had to be able to see me and he would be fine. Somewhere along the line, I did start treating the twins differently then their older brother. And I’ve done this (at least I tell myself) because they are Autistic and Big Brother is not. …continue reading
