Today is the last day of Autism Awareness Month. I don’t know if the world is any more aware of Autism than they were 30 days ago. I am aware that my #LifewithAutism continues on. That advocating and caring for my son takes up the bulk of my day (is it a wonder I even get to blog or work on my other writing projects or the microfarm?). But, this is what I’m here for, I know. So I strap my Mama Warrior armor on and do battle via email, in person, and on the phone (even though those are painfully hard given my hearing loss). You do it all not because your some superhero, but because you love your child and you do whatever you can do, while getting them to do as much as they can, too.
I’ve been battling this Autism Awareness month, like I do any month, every day for my son to have the highest quality of life he can. I’ve been battling the discrimination that’s been bred by people not knowing this disorder or unfortunately thinking they know what it is and that my son doesn’t have it. The later is wholly more frustrating.
I write letters to Senators and Congress persons. I email legislators in our state to fund facilities and programs – which is 48th in the nation for mental health care, which encompasses often anyone getting care for ASD (Neuroscience is only a small part of it – at least for us. Remember, ASD is a spectrum.) I read and research everything I can get my hands on to learn from others’ experiences or the new studies and sciences…grasping for anything I can.
I’ve spent the whole month helping him battle the sensory overload and the ongoing anxiety this creates. I’ve talked him down off the brink of self-harm too many times to count, just this month alone. This month we’ve changed doctors (again), and meds (again), and are battling for his education (again), and battling the insurance company (again), and still dealing with the railroad of injustice he’s dealing with (for which I can’t say anything here because cases are still pending). But, let it be said that the wheels of justice turn only with big, big dollars, of which this working poor family has none. Yet we battle on.
This month, I again, answer “Yes,” to those who say, “Have you tried this?” I’m still open to suggestions, but, trust me I’m constantly looking and trying…everything!
I’ve also spent the whole month celebrating the victories – even though by neurotypical (NT) standards they are small. They are huge in our world. Victories this month include going on his first solo bike ride in more than a year, as short as it was, it was still solo. Of course, he won’t get off the bike, because someone might be able to catch him and hurt him. Bike riding used to be something he loved and did often and all by himself; but, as is the case often with Autism, it’s a cha-cha. Something they did yesterday, or last year, may just suddenly stop, as the noise in their head takes over. My son also has been so much more affectionate to his family, handing out hugs and compliments, with ease. This is huge. He’s been a counsel to his younger brother. This was epic! I’m still living off that moment. He’s been more self-aware, telling me when he feels even more abnormally anxious. He also found a way to participate in a big social thing within the confines of his abilities and he is happy about it. Happy. A big smile on his face any day is huge, since my Bean’s default is defensiveness, worry and future-tripping*.
This Autism Awareness Month, therefore, has been like any other month for me, for hundreds of thousands of persons and families living with #LifewithAutism. So, I’m issuing a challenge for those that know me, know my son, Bean, or know any family struggling with the challenges this disorder creates, to talk to someone about Autism. Tell them what you know. Tell them that 1 in 68 people will be affected by this in our nation. 1 in 68. We need to find treatments. We need new facilities, programs, and for goodness’ sake, understanding. If you are reading this and you’ve not ever met or known someone who has or deals with Autism, learn what it’s about. If you know, ask how you can help. Sometimes they just need an ear. Or a quiet smile of acceptance.
*future-tripping: imagining the worst case scenario for everything and then getting anxious about it and worrying even more than your default setting. Not being able to be right in the now.