The Hard

I think it’s safe to say we’re in the thick of a hard season. With autism, the hard can ebb and flow. But it hit me tonight that we’ve been in this place for awhile now. Months maybe. The hard does not discriminate. It’s affecting everyone. Especially siblings. Sometimes we can pinpoint the problem, the triggers, the tipping point. But this time it’s likely the culmination of many things; the unstructured summer months, recently coming home from vacation, the transition back to a school schedule, and the biggest reason- a year of a huge decrease in services. A year ago we lost staff that helped Charlie several days a week. That loss has been incredible and we’re steadily seeing the downfall from it. Today when I called to see where he falls on the wait list for a new worker, I was told he’s half way down the list and they aren’t sure how fast it will go. The woman on the phone used phrases like “nation wide mental health crisis”, “worker shortage”, and “high demand”. It would be the same story even if we tried going to a different agency. Something needs to change. Something needs to be improved. Because my son, and thousands of others like him, are the ones on the short end of that deal. #fcvblogsquad #sunnytheservicedog #autism

New Hope

When Charlie was 4, before he was diagnosed with autism, he was referred to Occupational Therapy (OT) to help give him and us as parents, tools to better help him. At that time we were drowning. We had no idea how to help him regulate his body, help him sleep better or manage his daily meltdowns. At that point we had a social worker, a therapist, a special ed team and a developmental pediatrician involved. The wheels were in motion to help us figure out our complex little boy, but we hadn't found the right combination yet. Until OT. OT was the magical key to unlock some of the mysteries we couldn't figure out. Charlie had a wonderful occupational therapist who was patient, knowledgeable, insightful and all around amazing. She was able to engage Charlie in ways most people were not able to at that point. Assessments showed Charlie had sensory integration difficulties which played a huge part in him regulating his small body. The OT showed us how to implement a sensory diet with him- various sensory activities to do with him daily to help him calm his body. She showed us the importance of Charlie moving his body in order to stay calm. We tried different calming techniques to help him during a meltdown or to implement at night to help him sleep better. Some helped, some didn't. But it's safe to say that OT was the first place where we felt hope. We felt seen and understood in our struggles. And Charlie had so many great gains during OT.

OT ended when our insurance changed the next year and no longer covered his sessions. It was such a big blow when we knew OT was working so well for him. But there was no way we could pay out of pocket for his sessions. Flash forward 6 years. Charlie is now 10 years old. A month ago Charlie started a new program called Adaptive Athletics. While it's not considered OT, I see similarities and many benefits. Adaptive Athletics is a new service in our area that gives kids one on one classes for adaptive mobility, strengthening while focusing on functional movements. Charlie has never been one for sports or organized physical activity, but I thought it was worth a shot. Charlie was skeptical at first when I told him about it. He seemed to be ok when I told him I wanted him to try it four times, which is one session, and if he really didn't like it, he could stop. Charlie walked into his first class a little nervous. When he doens't know what to expect it raises his anxiety. But when Coach Taylor started engaging with him and talking legos, the rest is history. You see, I've noticed Coach Taylor has a way with kiddos like mine. He puts them at ease and accepts them where they are. He breaks down the movements to make them manageable all the while pushing them just slightly so they grow in their strength and movements. Our goal for Charlie was to get him moving, expose him to different sports and exercises and to give him the sensory input we know his body craves so he can be calm. Well, he's on the second session now and loving it! In the time Charlie has been going to Adaptive Athletics we've seen his coordination improve, he's more willing to try different physical activities, his body is calm, he's eager to engage with others within the community, he's learning to be flexible (being ok when things get changed up), and his confidence is soaring. Charlie has so much fun during his classes he counts down the days until his next class. I'm so excited to watch him grow in the next several months.

Push and Pull

Over the years we’ve learned when to push our son’s limits and when to stay put. Autism makes it a tricky dance some days. We’ve had a busy weekend with home projects, yard & garden work, and a couple graduation parties. He did well Saturday running errands and at the first graduation party, but today looks different. Today will likely look a lot like what is pictured here. Downtime and deep pressure therapy from Sunny are almost like a necessity after a busy schedule. Kind of like food and water are essential for survival, rest and recuperation are vital for Charlie’s ability to regulate his body and behavior. We have the second graduation party today an hour away from where we live. And we know today is not a day to push him past his limits. If we did, we know the outcome would not be good. So, today, we divide and conquer. Because that’s what our family needs today in order to thrive.