A is for Aides :2020 Autism Acceptance Month

10 years. 23 women. One little boy.

For the last decade, A2 ages while his aides do not. Time stands still as they enter our lives at 20 and exit at 22 again and again and again. All the while, A2 ‘s clock continues to tick away putting him closer in age to the next new soon-to-be-best-friend to come on board. He is still little and adorable and fun loving, but a teenager nevertheless. A teenager with care needs that are still very much in line with what they were when our very first 20 year old walked through the front door.

Each year that passes, A2 is more acutely aware and uncomfortable with this fact on a few levels, which in turn makes me uncomfortable with the skeleton crew of potential candidates I must independently identify, recruit, interview and hire folks with little to no experience with Autism. Every year I wonder if I should just provide all of his care and community support myself. I have been faced with this challenge for a year here and there at a time while also trying to find balance with my work schedule. In the long run, that is actually far less stressful and overwhelming (albeit, unpaid) than the Groundhog Day treadmill year after year of the anxiety of locating the right person,the training, the supervision, the getting over the behavioral hump, the getting used to having a stranger in our home and trusting they keep our personal life confidential/my child safe-always and no matter what, and the anticipation over A2 ‘s grief and lack of ability to process that with us when they leave our world.

And then I remember.

I remember the laughter and energy and patience for a boy who deserves nothing less on days when my own dark places pull those things under the blanket with me.

I remember new words and habits and skills that I know I didn’t teach.

I remember roller coaster riding and sledding and jumping into cold pools-things I wouldn’t dream of trying with him (or without him, actually)

I remember relief watching a young A1 be welcomed in to play, given the same attention and love by those who saw that he was here too and just as worthy of the special time his brother deserved, even though no one specifically told them to do so.

I remember birthday presents, phone calls and gifts, just because. I remember off the clock offers of babysitting just to give me and Mr. ATeam a date after not having one for over a year.

I remember A2’s uncanny ability to sense the unspoken leave-at-the-door moments that would go past my radar until I saw his care and loving behaviors.

I remember the phone calls from new professionals telling me about a challenge they faced in their new career they knew how to handle from what they learned working with us

I remember my beautiful boy has no people who know his life inside and out, backward and forward other than me and his dad. With exception of the select few who come here to work under a supervisor who often forgets to show a soft side or appreciation and yet they choose to stay here for a year or longer.

I find I am just as appreciative of this village we create year after year as I was in 2015. It looks different today. I am more tired, less patient with the learning curve and more concerned about the days and years ahead since I now have the wisdom of just how fleeting they are as we barrel toward the thing-that-keeps-me-up-at-night. However, I have had the opportunity to see the future of these college co-eds who come in and out of our life in the blink of an eye. I know special education teachers, speech and language pathologists, occupational therapists, RNs, Psychologists, Social Workers, Disability Advocates, Trauma specialists, Physicians. I see mothers and wives. I see women who seamlessly moved to their next stage in life from A2 better equipped to understand what Autism looks like from the inside and hope it has helped fast track their perspectives as helpers

I sure know that if that is true, A2’s purpose is far greater than I could have ever imagined and I just know if he understands that, it would only contribute to the joy he has for the things we all take for granted.

A is for Aides: 2015 Autism Awareness Month

Though I can’t find pictures of all of them, they have all made a significant impact in our lives. Without them, A2 would not have made the gains in language, socialization and self care that he has. They have cleaned vomit out of their cars, do not ruffle at the idea of diaper changes, and have endured power struggles with grace and maturity. They are the extra eyes and hands in a world where we have none but need 20. They are young and move on with their lives from us but we have always known that we sacrifice longevity for love and are happy that so many reach out to stay part of our village.

A is for Aides: 2020 Autism Acceptance Month

If You Met Us At The Border

adult affection baby casual
Photo by Pixabay on Pexels.com

If You Met Us at the Border

OR

5 Random Reasons It Is Hard to Share Lately

1. I have 84 drafts sitting in my queue in my blog.

Yes, you read that correctly. 84 unedited pieces of work. 84 separate ideas.

If you read my writing, you know I have 3 styles: 1. Poetry 2. Educational/How To/Advocacy 3. Creative Non-Fiction. Sometimes I struggle thinking I cannot “find my voice” in my writing, but I do believe I have. It is all 3 of those voices, just like most of us have in real life. It is the topic that tends to remain consistent–it is about the intense, over -the-top love I have for my child and the intense, over-the-top worry I have for him not because of who he is…but because of the world he lives in…even with, or in spite of me, his extra-human mom who sometimes needs silence, sleep, pre-children normalcy and sometimes just moments where I stare off into the void.

2. “Children do well if they can” –Ross Greene PhD (As a reminder…children grow into adults. Adults who do well if they can. Adults generally have greater levels of understanding as to how to access the “doing well” part depending on the function of their needs and the values they were raised with. Values which may be different than mine.

3. My children have a level of privilege and comfort that even to many, many standards in the US is considered luxury. We are still working class, but we were born into the jackpot of privilege for no other reason than chance. My parents are not college educated and I grew up in a single parent household for much of my single digit years. My father came to the US essentially as a refugee as a child. He came with a small handful of family because the rest were dead or missing. My husband grew up in a small town where his mom was the primary bread winner as a teacher. But we both have above average IQs, were loved, physically and environmentally safe and were raised to know we were supposed to go to college and have jobs. And the people around us were raised to just look at us and think the same thing.

4. My son is significantly disabled. Given he is 13 now, it is fair to say at this point that he will likely not live independently, drive a car, read, earn a full-time fair wage. To be clear, this is not “lack of hope”, this is reality based on his cognitive functioning and the environment which will only marginally accept him. We live in the top public schools in the state (actually, in the nation too). He plays basketball, baseball, bowling and golf in special needs leagues. He has access to medical specialists around the state to monitor his progress and needs. I fully believe he is alive and thriving because of access to local, state and federal funding for services/supplies that would be far out of reach for us as a working class family–and yet, still far less than he needs or deserves.

5. All of the above makes it very, very difficult for me to share about the present and future realities for my child who has needs and who always will have needs and dependency. In a time where regardless of politics, policy, law or any other justification posing as morality….please, please remember that this child at the border’s mother might have at one point had the opportunity to write the same 4 seemingly random ideas.

If nothing else…if desperate families from other countries can be made an example and sacrificed and divided, allowing the children to be made the pascal lambs for the “sake of the rest of us”, please don’t take for granted how our own use of resources for our children might be viewed in the same way in the near future. We also ultimately won’t fit the bigger picture.

What lengths would you go to for your own child? What risks might you take? Where would you go for them?

#autism #disability #love #parenting #HumanRights #WhatIfItWereYourChild #KeepFamiliesTogether

#ToTheEndsOfTheEarth #children #vulnerable #writer #blog