You just heard quite possibly the worst words of your life. “Your child has autism.” You’ve grieved the loss of the dreams that you had for your child. You are now on the “I have to do something” phase but what?
This is where we found ourselves 9+ years ago. Has it really been that long? What??? We took a breath and decided that we simply had to get to work. But where to start? Logan’s list of needs were a mile long. He had a ton of issues. That is probably the biggest understatement I have ever said. Let’s see if I can do justice describing him. Hmmmmm, a non verbal 3 and a half year old who was prone to meltdowns at any moment for reasons only known to him, had severe sensory needs, and only ate Kraft mac n cheese. Oh wait, I almost forgot the only slept for about an hour to an hour and a half a night part. Our list was really long to say the least.
What Michael and I did was to make a list of all of Logan’s issues. Screaming, non sleep, no fear of anything, safety, etc….. It was really depressing to make the list to say the least. I cried and cried and cried some more. We made the list and left it for a few days. It was simply overwhelming to look at it. Then we started prioritizing it. I would walk by it and write in pencil numbers next to what I thought and Michael would write the order he thought. We left it hanging on our fridge for weeks.
Then we got to work. Michael started researching things and I joined forums and started making calls. We had this great list of needs that were going to cost a fortune. We needed some creative ways to finance it . Michael would share what he learned and I would do the same. We agreed on what was the most pressing issue at the moment and got started on trying to find a solution. Some solutions came quickly , some we stumbled on and some eluded us for years.
Sometimes the most pressing issue was something that affected us as a family. Logan’s lack of sleep presented a problem that needed a solution fairly quickly. We couldn’t function without sleep so that was one of the first things we tackled. Sometimes, it was a little thing that bugged us like his inability to drink from a cup at the age of 4. Sometimes, it was a big issue like his lack of speech.
Overall the list was completely overwhelming. It made me cry on more than one occasion. To accomplish the list though, we had to get started. Taking it one therapy at a time made it seem more doable to us. Some therapies worked and some didn’t . Some we had to change after starting because it wasn’t a good fit. We got discouraged on more than one occasion. Quitting was never an option. Together we managed it and somehow we got through it. It ranks up there as one of the most painful things I have ever done. I am so glad I did it though . It gave us a focus and a plan. A fluid plan that was constantly changing but a plan nonetheless.
What’s your plan?