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Challenge: Kids with Special Needs

You asked, so I'll tell you: I'm not OK

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This morning, as I absentmindedly scrolled through my Facebook feed, I repeatedly came across a post by titled 'Dear Moms of High School Seniors: How Are You Doing?'

Each time I saw it (too many to count), I felt as if I was being taunted, ridiculed, and challenged. You see, my son happens to be a senior too. But a different kind of senior. One on the autism spectrum. I have decided to respond to this article. Consider this the AUTISM SPECTRUM DISORDER (ASD) version. As you may or may not know, if you have met one child with autism, you have met ONE child with autism. Here is MY take.

For clarity, I have bolded the text to separate the original article from my reply.

"Dear Mom of a High School Senior,

How are you?

I mean, really.

How are you doing?"

You asked, so I will tell you; I am not OK. Well, maybe I am OKish, but I have seen brighter days.

"Just a few years ago, I was where you are now, and so I have a little idea of what you’re doing. You’re running around even more than usual, trying to figure out how much meat you need to serve 200 people at a grad party taco bar and reserving a tent and praying for a sunny day. You’re saving dorm-shopping checklists and going to senior parent meetings even though you still cannot actually believe you are a senior parent. You’re thinking your entire life has become an acronym: FAFSA, EFC, SAR, GPA, SAT, ACT.



No. No. No. No. You really do not have any idea what I am doing. Yes, I am running around, but AS usual (not MORE than usual). I am NOT planning a grad party. Or taco bars. I am praying, but not for a sunny day. I am most certainly not dorm shopping nor going to senior parent meetings. I can agree with you, however, on a couple of things: I still cannot actually believe I am a senior parent. Mostly, because it doesn't matter one bit and it saddens me to no end. My life is the same as it has been since diagnosis day. It HAS become an acronym, but a different one: ABA, PT, ST, OT, IEP, ADA, ADHD, BCBA, BIP, LRE, PDD, PECS, SIB.

SOS, indeed.

"But what I’m asking is how you’re doing—physically, mentally, and emotionally—right in the middle of all you're other doing."

I have been dreading the culmination of his school years for, well, years. I understand that moms of "typical" high school seniors have a different reality than mine. Because of this, I usually feel discouraged to vent about our differences. Truth be told, I don't want to make anyone feel uncomfortable, but I also want to bring awareness to the impact autism can have on families. I understand how well-intentioned family and friends aren't always sure how to handle a situation that is foreign to them, so I often abstain. This does not ever take away the happiness I feel seeing kids within our circle, moving on with their lives right on schedule. Is it so wrong to want my son to have that opportunity as well?

"On any given day when I was in your shoes, my answer to this question might have been something along the lines of one or more of the following:"

I'm pretty sure we wear different shoe styles, but I will play along.

“I’m great! This is so much fun!” No, that's not it.

“I’m stressed. This is so much work.” 100%

“I’m a sad, weepy mess.” I can be, yes.

“I’m excited and beaming with pride.” Not excited, but do beam with pride often.

“I’m numb and exhausted.” Bingo!

“I have no idea how I’m doing.” Often.

“I don’t want to talk about it.” That too. But today I do.

"Since I was, not long ago, mom of a high school senior myself, I offer myself as Exhibit A that you can and will make it through." I sure hope so, but not holding my breath. I do need to live forever, you know.

Miami Beach"But the thing is, I know you don’t want to just make it through. I know you don’t want to just grit your teeth and survive. You long for so much more than that. You want to soak this season up and savor it and give it as a gift to your senior—and to yourself."

Forgive me for one second.


I do long for more than that. I don't want to soak and savor a single second of this. With big brown innocent eyes and the gentlest spirit I have ever met, my 17-year-old is completely unaware of what other seniors have been up to this year. Because of his cognitive delays, his life remains one pure bubble of toddler computer games, kiddie toys, and Barney videos. My gift to my senior is me holding it together long enough to hide my tears, as to not confuse him when he's prompted to "pretend" like he's really graduating. More on that in a bit.

The silver lining, of course, is that none of the charades will affect him. It only affects the adults who KNOW that come fall, he will go back to school to continue attending until he no longer can at the age of 22. And still, there will be no SATs, no college tours, admissions, dorms, or frat parties. Not for my son, anyway. I don't really care if he chose to not attend. Or decided to become a hairdresser. Or a barista. The keyword here is CHOICE; he does not have one, and I find it cruel. Our choices are as follows: (1) Start the process of guardianship over him. (2) Look into more activities to keep him active and not homebound once he ages out of school. (3) Set every detail of his future in place to keep him safe and happy once we no longer exist.

This is one of the problems with hiding the shortcomings of autism. Thie original article I mention encourages parents of mainstream teens to share their feelings on this grand occasion. Not many parents of ASD teens talk about this critical moment in their lives. When we first become parents, we dream of the significant milestones: Kindergarten, graduation, marriage, kids, and grandkids. Life takes many turns, and children grow up to take different paths, but they mostly CHOOSE their journey. There's a new parent-shaming trend (mostly by those within our ASD community) discouraging us parents from discussing the very real feelings and needs of those on the severe end of the autism spectrum and what we go through. I know it's much more pleasant to hear the Hollywood tales of real-life good doctors and savant rainmen. But, although many higher functioning individuals do attend college, those instances aren't as common as portrayed.

First GradeI am fiercely proud of my son, and all he has learned, accomplished, and overcome. As a mother, I have fought tooth and nail (and will continue to do so as long as I am breathing) to give him the best support system throughout his life. I champion and encourage his every whim and interest. I love him so much it physically hurts. But, dammit, the cards he has been dealt infuriate me and I have a right to feel that way. I have a right to mourn the situation, and it is not a reflection on him personally.

At my son's current (autism-only) school, the graduation ceremony is lumped in at the end of the annual school-wide talent show. They mean well and always try to give the students the most authentic experience possible. When the time comes, the entire school will watch the senior class slideshow (starting with baby photos and ending with cap and gown ones). The "graduating" students are then escorted on stage and prompted to "act out" the usual routine of receiving of the diploma, handshake, and then maybe hats thrown in the air. I say "act out" because very few of the students understand what is actually going on. They, like my son, have been following adult direction their entire life and just do as asked. Just because. Those who cannot are helped by a shadowing teacher or therapist to "act out" the ceremony.

At some point, someone reaches the mic and reads a speech citing the usual cliched "you did it" and "reach for the stars" phrases. For the last decade, I have sat there numb as tears stream down my face. I always stare hard at the screen as the happy baby photos show what once was. A time of hopes and dreams. The days before parents received news that would alter their life course forever. I don't know how other parents feel when this part of the show comes. From where I sit, it seems like many parents of kids on the spectrum don rose-colored glasses, maybe as a coping mechanism. I do not fault them for a second and often feel guilty of not being able to play along as well. We all do what we can, but I just cannot relate. That is not (and has never been) me. Everyone claps and cheers through it all while I want it to end. What are they so happy about? "You can do anything you put your mind to," cue the clapping. Cringe. Is that so? Last I checked, my son's limited cognitive abilities prohibit him from putting his mind to anything more than what games he will play after school TODAY. It actually comes in handy, preventing him from worrying about things ahead of time, and understanding many of life's many cruel happenings. I cannot change that, and I also cannot stand the "graduation" sugar-coating and Hallmark sentiments. There isn't real graduation closure for these "seniors." Not when some will leave school into the abyss of unemployed adulthood with special needs altogether, and the rest return to continue the same life-skills-type classes just a couple of months later.

"I’ve only done this once, so I’m hardly an expert on the stress of the senior year high school. But from my view on the other side of pomp and circumstance, here are a few steps you might want to take along the last few miles of the senior-year road:"

  • Take a deep breath. Slow in, slow out. It really does help reset your mind and emotions. Oh yes, this one works for both my son and I. It's how he self soothes when having extreme anxiety.
  • Laugh. It’s called “good medicine” for a reason. Tough one.
  • Let the tears flow. It’s called a “good cry” for a reason. I do. All. The. Time.
  • Unload on one of your senior-mom friends. No one understands where you’re at quite like someone else who’s there, too. Despite the discouraging parent shaming of doing just this, I am trying.
  • Unload on a mom who’s been through it before. (I am raising a virtual hand.) Current situation
  • Take a nap. You are a mom and you are tired. I really want one. And then another. Yes.
  • Take a(nother) picture. Eliminate the nagging feeling you’re missing something. This is me. You have NO idea. Photos are my thing and help my son understand where he has been and where he is (literally) going tremendously.
  • Hug your senior. Store those hugs up, my friend. Done. And done. At the end of the day, despite his limited speech and understanding, I KNOW he feels happy, safe, and loved by us.
  • Schedule a manicure/pedicure/haircut/massage/lunch with your funniest friend. If ever there was a time for self-care, it’s when you’re taking care of everybody except. My current m.o. Maybe I'm not doing as badly as I thought? Enter my Disorderly Blondes Autism Podcast project with my fellow ASD mom bestie! Funny too? Win-win!
  • Give thanks. Gratitude activates peace. Peace is good. I am thankful for many things, but autism and its attack on my son is not one of them. I find peace in other ways, like his beautiful smile, bright-eyed innocence, and sweet demeanor.
  • Eat some chocolate. Chocolate increases serotonin levels. Serotonin makes you feel happy. Happy is good. Oh yes! I don't carry around these extra pounds for no good reason! Wine too!
  • Say “no” to something. Usually, that means you’re saying a greater “yes” to something else. Always
  • Look back. Oh, the places your senior has been! You can say that again.
  • Look forward. Oh, the places your senior will go! Where is that, exactly? What happens when I am too old to care for him, and he is a real senior (citizen)? What happens when I die? We are working overtime to provide him with independent life skills and funds to cover everything he will possibly need, but he will need lifelong round-the-clock care. How does one live in peace NOW knowing our protection will be gone one day, and the potential for him being mistreated is a strong possibility? After all of the sweat and tears, is that how it ends?
  • Grieve a little. Letting go is hard. Grieving is the status quo, letting go is NOT an option.
  • Celebrate a lot. There is so much to still hold onto and so much to look forward to. Not sure about that. Our lives seem to be headed full-circle. Tough times in the beginning upon diagnoses, celebrating achievements, and then tough again when we significantly age and are forced to loosen our grip.

"I promise it will be okay. In fact, it will be so much better than okay." I want this to be true so badly. Spoiler alert, every time I make a wish on my birthday candle, this is it. And also before bed every night. And often during the day too!

"You will feel pride like you’ve never felt before." He does make me proud. He has worked so hard his entire life.

"You’ll see the past, present, and future, all wrapped up in one gorgeous package. Not possible.

"You will be so grateful. You will be so hopeful." I am grateful. I am hopeful. But it has nothing to do with senior year. .

"Congratulations, Mom. While you’re celebrating your senior, I’m celebrating you!" Thanks, but I still have a while to go. For now, I will load up on tissues to use as I watch my son walk across that stage. Real or not. The tears will be inevitable. Thankfully, I know his smile will carry me through. And exhale.

2017 Holidays

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