It Starts With You...

I once listened to a podcast where they refer to the parents and caregivers as "command central". You are the hub of all information about your child, and this couldn't be more true. The things that work, don't work, their favorites, their non-preferred, everything. Man, that is a huge responsibility especially if your child is not able to verbally advocate for themselves, but it is such a cool gift at the same time.

As Alleys Mom, I am basically command central for him. I am his hub of information that will be given to the outside world. If you sit back and look at it from that perspective, I'm kind of a big deal. Just kidding, well sort of, it IS a big deal. I have all of this top secret information. What he ate that day, how it affected him, has he had a bowel movement recently to get rid of toxic build up in his body, did he drink enough, is he tired, did he get up in the middle of the night. These are all things that parents of typical children do not have to convey to the outside world for their child. Their is very capable of doing it themselves. Being the central hub for Alley literally makes my brain like a hamster on a wheel, and it never stops going. Ever. Are we doing too much? Are we not doing enough? These are my thoughts in the middle of the night that keep me awake over and over, but they are also what keeps me going because I know he needs me.

Part of this whole journey is having to learn my role as well. I am the bus driver (along with my husband) we drive Alley's bus, so to speak. His bus consists of family, friends of the family, medical professionals, therapists, teachers, neighbors, strangers, anyone that comes in contact with our guy. However it is so important for my husband and I to remember that nobody gets on or off that bus without our control. For example if a family member doesn't understand the capacity of our journey and handle it with compassion and selflessness then their stop is here and they can get off Alley's bus. If a medical professional is not open to the information my husband and I are relaying to them and want to just tell us what they believe we SHOULD be doing that we know won't work, then they can also get off our bus. This is something I personally had to learn first hand. Not every single person in your life has a right to be there or deserves to be there. Alley's life is precious, it's a sacred world that not everyone understands or is lucky enough to peek in to. If people around us do not treat our journey like that, then they will no longer be a part of our bus ride.

We have kept some doctors around that have been with Alley since he was younger. His Developmental Pediatrician is someone who diagnosed him at the age of 18 months. He is wonderful. Wonderful in the sense that I feel he is a part of our team. He is the one who prescribed Alan the medication that went ass backwards on us. But he was upfront about it, we knew there were possible side effects and I appreciated that. What I appreciated most about the whole situation was he was very willing to pivot with us. He didn't write us off when we said we wanted to go the holistic route. He gave us the green light and said "I have heard wonderful things about this path, I am just not an expert in it. But I think you guys know him best and whole-heartedly support your decision." When we followed up with him a couple months later he was elated for us. He wanted to know what we were doing so he could direct other families he sees down the path we were on, and I appreciated that. We still see him once a year, and he will always have a seat on Alley's bus. This is how people should make us feel, as the central command, we know what is best for our child.

Yes, everyone has their professions and areas of expertise when it comes to Autism. And maybe they belonged on your bus for a short period of time, but don't ever be afraid to show someone where their bus stop is. It starts with you, you are setting the precedence for how your child should be treated and how you are treated as your child's hub. And man that is such a special gift.

With grace-

This Autism Mama