Will I ever be a pro at Autism? I am not sure if I had several degrees and became a neurologist that I would ever be a pro at Autism. That is why I rely on my faith in God to direct my path. Families living with autism have a common bond. We experience things that make us say hmmm! I narrowed my list down to ten but trust me I could have listed 100 things easily.
1. When it is time to go to an appointment or visit family our kids like to bring a comfort toy or object for the ride. That’s fine. The problem is that the one comfort object turns into a mini toy store. Sydney likes to pack a small suitcase to go to my parents house. This is just to visit. So imagine what she brings when she is spending the night for a slumber party.
2. Don’t forget the iPad, the backup iPad, the iPod, and the kindle. Remember to bring the charger, car charger and extra battery pack. The struggle is real. Get the wi-fi passwords ahead of time.
3. Wrestling with your child to brush their teeth. When Sydney was smaller I tried electric and Disney character toothbrushes, the bubble gum toothpaste and mouth rinse. It didn’t matter. She would start off okay but ten seconds in, toothpaste was everywhere. The sensory sensations were just too much for her.
4. Never run out of their favorite food. Now this is tricky because their favorite food may change after we stock up on it. Sydney loves her Jimmy Dean sausage, not Bob Evans but Jimmy Dean and yes she knows the difference. Today the sausages were too black. That’s another blog for later.
5. Feeling on edge for 95% of the day. We are always searching for a trigger that might set off a meltdown or sensory overload. Sometimes the trigger could have happened hours ago and we missed it all together. That sense of panic is painful. If the day is going well don’t change anything, don’t even breathe. Just enjoy the calm moments and embrace it.
6. When the phone rings and it is the school. Do we answer? Let it go to voicemail? We immediately panic before we say hello.
7. One minute as parents we feel like complete failures. But in the blink of an eye we turn into superheroes again.
8. Did I forget to look in the mirror today before I left the house? I think we are so concerned with making sure that are children are fully clothed and have everything, that we neglect our own appearance at times. It is not until we return home and glance at ourselves in a mirror and think. Did I really just go out in the public looking like this?
9. When we have to explain to the doctor and therapists about autism. I have a double whammy because I have to embrace epilepsy too. But there are times when I go to an appointment and walk away feeling like I just paid a copay to teach the doctor.
10. We wouldn’t change our lives at all. Maybe there are a few things we would change but our child is not one of them. I would wish to be a stay at home mom so I could get more therapy and appointments during the day, not for me but for Sydney. I would wish to be able to observe Sydney and be more visible at her school. I would wish to be an autism advocate for other parents and attend IEP meetings with them.
To the families living with autism continue the journey with faith and hope in your heart. To the families that just heard the diagnosis for the first time, stay off of the internet. Find resources and support services in your area to help you. Autism has made us all stronger.
One day the puzzle pieces will all come together.