CAMP....

This weekend, my husband and I are attending CAMP (Caregivers of Autism Maximizing Potential). It's a 1.5 day retreat for caregivers only (no kids) to connect, share resources, and discuss wins, challenges, shortages, etc. and most importantly, RELAX. It's held in Sheboygan, which is about 4.5 hours away from where we live, so it was a long night last night and a very boring drive after dropping off the kids at the grandparents' home. I decided it was a good time for me to use up some of my Audible credits and we started listening to "Forever Boy" a book by Kate Swenson who documents her journey as a mother of an autistic child from birth to present day. We're listening to it and my husband's light bulb came one and realizes that this story is essentially our story as well. The struggles we face daily, the small wins that seem ridiculous celebrating, and the grieving a parent faces when their child is diagnosed with a disability. I had never thought of it that way, that I had to "grieve" my child's diagnosis, but after reading the excerpt "Welcome to Holland" by Emily Perl Kingsley, it all makes sense.

For me, I grieve the fact that Brayden may never drive a car, graduate college, move out and live independently, play hockey or any sport, etc. I grieve the loss of many playdates with other kiddos, the ability to just GO somewhere without having to plan things pretty extensively. I grieve being able to go on a spontaneous trip without worrying about multiple appointments we have during that time and people I must contact to adjust location or time, or finding someone to watch my child while I step out of the house. I grieve leaving my career that was a large part of my life and who I am, let alone dropping down to a single income. I grieve the loss of family as we're not included in things as a neurotypical family would be, let alone watching every penny we spend and having to miss out on events because I have to make sure we have enough funds just to get to the next specialty appointment. Everything in my life, including the most simplest task of going grocery shopping must be carefully planned and thought out. Leaving the house becomes an anxiety-driven event and so we try not to. It's extremely isolating and lonely.

I am NOT alone in this journey and this camp has allowed me to meet other parents who share some of the same journey. While no one's journey is the same, to hear the struggles and challenges that are similar to ours that they have navigated successfully helps give me hope and make me feel validated for feeling how I do and advocating as I am for my kids. Especially the advocating part which is a very LARGE component of parenting a child with unique needs including with our families. My boys are the first in our immediate families to be diagnosed with a disability as a young child. At times I think about what life would have looked like had it been something like cerebral palsy, or SMD, or something where there are SPECIFIC treatments, specific medications, and more physical symptoms that anyone can outwardly see. Would our families have been more understanding and supportive if that was the case? Other diseases follow a specific pattern of symptoms, treatment, and progression. With neurodivergence and ASD, there's no such thing as a line, not a wavy one, not a curly one, not a jagged one, there is NO line. It's symptoms that are based on responses to stimuli and how their brain sees and interacts with all aspects of the world and environment they are in. It's not specific symptoms, it's not specific treatments, it's not specific outcomes or predictable. EVERY SINGLE CHILD or INDIVIDUAL who is neurodivergent is completely unique on how they process and interact with the world around them. There is no "if this, then that". It's multiple trial and errors, failures and minute celebrations, and a complete guessing game. What may work for one child to help regulate them could cause another child to have a meltdown. There is no cure, no specific medicine, treatment, or parent guidebook to tell you what or how to do things to help them grow and thrive. I think this is where families struggle the most. They don't know how to interact with children and support them or even how to support the parents. Some families don't make an effort to understand why the child does this, or understand that a child needs that. In our case, our families have their own challenges that make it hard for them to spend a lot of time with my kids because of my kids' needs. It's no ones fault, but it's heartbreaking because I want nothing more than my children to feel welcomed and safe and loved by their extended families and to HAVE that intense and close relationship. I want everyone to celebrate in the tiny successes like they just won the gold medal in the Olympics and not to criticize them because they can't regulate their emotions or communicate verbally what they need or want. It's definitely a learning curve and I'm sure in some way they're grieving too. But they also must actively want to participate in the education, learning and advocacy for their family members and just be present. I think anyone who has immediate family members on the spectrum need to attend sessions like CAMP, because you hear it from others and not just the parents and I WISH there were more resources around like this.