I have not written in forever… and honestly my heart and head is running over. But today I must write because my eyes are running over with tears. It seems to happen every year on this day. April is Autism Awareness Month and today is National Light It Up Blue. I cry when I see all the landmarks across the globe honor this day – in a small way – honor our son.
Awareness days – I really wish the problem didn’t exist so we didn’t have to have one. For example, Breast Cancer Awareness month , I wish breast cancer didn’t exist so we didn’t have to be “aware”. Autism Awareness month, I wish autism did NOT exist so we didn’t have to be “aware”. The ironic thing is people who live with breast cancer or love someone with breast cancer or autism or Parkinsons, etc… are AWARE EVERY DAY!!! Part of me really appreciates the attention that this month brings to Autism, but it is more than just wearing blue. It is being truly AWARE 365 days a year. It is about compassion for people who do things you may not understand. So in true honor of Sam, I am going to be 100% honest!
It is about not staring at my child when he can’t hold his emotions as a result of a crappy movie ending. He is 100% honest with everything including his emotions, something I could learn from.
You do not look at us like we are crazy when we ask particulars about menu items – like, do your French fries have skins on them (or potatoes as Sam would say). Or if you have nothing on your menu he will eat, so I pull out a pile of Samuel approved foods.
You can avoid looking at me as I have to take my son at the age of 10 into a woman’s bathroom because the place of business does not offer a family bathroom and I can’t trust the “men” in the restrooms because if something would happen he can’t tell me. He can’t handle the sound of the flush of the toilets, so would not flush. And he requires a reminder to wash his hands (which I am not sure just being a boy and too busy or that he has autism and forgets).
When I hold his hand to walk through a parking lot or have to pull him to the side of an aisle in a grocery store because he has safety concept and space concept issues. Don’t be evil and stare. Don’t bump into him expecting him to move. I teach him to say “excuse me” when he has to cross your space, please do the same to him.
When we purchase 5 of the same exact pants and shirts, don’t question my judgment. Also, if you see him wear the same outfit every single day, chances are it is clean (not 100% guaranteed, but that is his moms issue – lol). When we find a comfortable fabric in his color… that may just be the only outfits in his dresser. , and it simplifies matching and fighting over what he will wear.
Please hold your suggestions on what we need to do for him – like just make him eat other things. I will gladly let you try, but it isn’t going to happen. I know he needs braces, but I am just thankful he allows them to do routine dental care. I know his speech is not where is should be but did you know the resources are limited. We had a speech therapist who never worked with a child with Aspergers so I ended up doing more teaching and explaining in our appointment than he got therapy! I know is every quirk and when others point it out it just makes me feel guilty for not doing more!
To the insurance companies that do not cover my son for care related to autism because it is diagnosed on the mental illness axis. Do you know it took everything we had to allow that label so that he could get the care he needed. However, as a result, you no longer pay for his care and won’t cover PT and OT and speech. So I sought out Medicaid for our son and fought the system only to discover there are limited resources for him within a 60mile radius within the state lines. And our son is pretty high functioning, what happens to the children who need so much more. This is why every denial I receive you receive a reply, an appeal, and a picture of our son so you know you are denying a CHILD not a diagnosis!
To the healthcare provider whose solution to him not taking medicine could be to either just make him take it, crush it in Peanut butter (of note one of the few proteins he will eat) because he won’t know (he will know). Know that as a mom and a nurse I had tried every option before proceeding to the hospital so our son could be held down by 6 people to get an IV in him so we could get antibiotics. Yep, that’s what I wanted for my son. And shame on me for allowing a dental staff take five people to get medicine in him to sedate him for dental procedure and then not let me in the room. P.s. both staff have been FIRED from the care of our son.
To the ignorant people who stare and judge when a child has a fit and assume they are a brat and never considering they are overwhelmed, or nonverbal, etc. If you see a parent struggling with a child, pause and ask if you can help if you are going to stand there and stare and judge. It is amazing what you may learn and how you can touch someone’s life just by asking.
Also avoid the stereotype that all boys play sports. Our son doesn’t play sports, he probably could have. Unfortunately now it is about competition and not just playing. He would have stood out as the weakest link on a typical team. (p.s. thankful for the Miracle League who makes softball possible for kids who want to play without the competition!!!) But, he can play in the snow for hours, the mud for hours, designing elaborate play scenarios for his legos that he created, build a train that could travel through every room of our house. He also can take a Angry Bird game and make it 3 dimensional with blocks and our angry bird collection.
To the teachers /staff who put together an I.E.P (individual education plan) – please remember it is about the individual child. It is full of weaknesses and areas of improvement. I use to sit at a table with strangers, except for the teacher, as they told me his weaknesses and they didn’t know him. They judged him on a few tests. As a mom sitting in those meetings I am fighting back tears half way through (and still sit here and cry when I think of our first few meetings to FIGHT for the changes he needed). Know that as a mom, I will FIGHT. When the system and the strangers sitting around the table fail our son – we will FIRE you too!
THANK YOU to
Our friends and family that welcome Sam into their homes. You know who you are. The ones who go out of their way to not judge and enjoy his incredible imagination and honesty.
Thank you to our healthcare team – physician and dentist – who go out of their way to make sure his needs are met. Provide him with compassionate care. Thank you for believing in me, as his mom, that brings him to every appointment. Thanks for listening to his endless stories.
Thank you to the teachers at Marclay who went out of their way to help him get through second grade. I just wish the system would have been adaptable to continue to meet his needs. So thankful to live in a state that has other options for our son. Agora has been life changing for us. I don’t have to worry about him going to school. Worry that he can’t tell me what happened.
Thank you to the awesome servers at Red Lobster and other restaurants that just smile with our crazy question and our orders. Thank you for asking him his name and inquiring about what ever toys he brought with us (Godzilla, Star Wars, Lego creations).
Thank you to his sister who loves him without limits. It would be easy for her to deny him or avoid him when she is with her friends, but that never happens. Thanks to her friends who love him too!!! I dare anyone to go up against her!!!!
Thank you to the strangers who do not stare. Or those who take the time to ask questions.
Thank you to Sam for making me more aware of what life is about. For helping me see the world through your eyes full of imagination and honesty.
Thank you for my faith/God on days like today that I struggle if I am doing enough… for the days I am angry that things are not “typical”… for the days I am jealous… for the days I need a dose of reality of how blessed I am… for the days I just need an extra blanket of grace.. for the days I need boldness to stand up for him… for the days I want to cry and the days I do cry (like today).. for the times I worry about his future… for the days I need to adjust my view and just look up!