I Won’t Give Up

I haven’t written in months. Truth be told, I was too caught up in the daily grind, in the schedule of our lives, and when I did have time to write, I was too exhausted or had no motivation to write.

As I sat to write this blog, originally I was angry, frustrated, trying to comprehend why others don’t understand, why they just don’t get it. And, as usual, as I write and approach my computer, the anger melts away, and an outpouring of love, hope, and perseverance leaves my heart and fingers…


We’ve had numerous evaluations these past few months and more over the next few months. I’m looking for answers, for explanations, for the missing pieces of the jigsaw puzzle that will help me understand my boys more, that will give more clues on what I can do, how I can help them to shine their brightest in their own unique ways. Along the road, we’ve encountered our bumps, our challenges. Some aren’t terribly significant, barely making a blip on the radar. Others are a bit higher up on the scale.

One of the biggest challenges is having the school accept Tufts’ diagnosis of Wesley. Just accept it, agree with it, stop saying “we don’t see x, y, and z.” I’m not asking for a tremendous deal of additional services at this point in time. Instead, I’m asking for them to admit that they see what I see, what others see, what the professionals who diagnose thousands of other kids see; to see what is right there in front of them if they’d only take the time to look and see Wesley for who he is, how he is – not see him as someone who “is a role model student” one day and when his challenges arise see him as someone who “we’re extremely concerned about.” One day at a time, I stand here and support my son (support both of my sons as Seamus has his challenges too which he is currently being evaluated for), support him when and where he needs it, stand here as his rock – the one person he knows is so steady that when his world quakes I can stand still and strong, ground him, until his earthquake stops – stand here and provide a little wind under his wings so he too can shine in his own unique and quirky way.

Seamus has already had a long road – (story to be published later) one that we still work with and navigate on and around: the hypersensitivity to clothing, to certain types of touch; the low muscle tone he’s had since an infant that makes doing things other 8 year olds do without any challenges either challenging or, at times, exhausting for him; the screaming temper tantrums and attachments to certain animals (that travel with him everywhere); the tendency to fly off the handle and energetically and physically bounce around like a pinball when playing some of the calmest of games, to the full body stims when playing video games, and the tendency to spin himself in circles when we’re in grocery stores. Still, I support him as I can, evaluating and reevaluating to keep him going strong, to help him keep up physically and emotionally with his peers, to encourage his interests so his quirky light also shines.

A few events, in particular, inspired me to write today.

Yesterday while at Target purchasing Wesley a copy of Star Wars for Kinect and a scooter for Seamus (which we later had to order online), there were moments of that bright smile, that happiness on Wes’ face and in his blue eyes, that he reserves for people he knows very well – the smile that truly lights up his eyes and makes them sparkle, with a hint of goofiness and innocence beneath it. Needless to say, by the time we made it to the register, the smile was gone.

This was not a concern. It’s just part of life for us, part of the daily detective work that involves deep listening and deep seeing to read Wesley. He was thrilled to get his new game. Thrilled! Did it show on his face by then? No, but no problem, not for us. The cashier, however, was a different story. “What’s the matter? Why don’t you smile? Aren’t you happy you’re getting a game?”

So on launches the opportunity for advocacy…”my son has an Autism Spectrum Disorder. Having a flat affect and difficulty showing emotions is a characteristic of it. He is happy. He’s actually ecstatic right now, but doesn’t know how to show it.” Thereby follows the look from Wes which clearly states “what the heck is her problem?”…

Later that evening, as every Wed. evening, Wes’ play therapist came to work with him for an hour. One hour. One. Hour. He and his therapist were in the TV room, I was one room over from them, and my parents, in the kitchen, one room over from me. I overhear my Dad saying “Is she here? What time does she leave? (Note: the same time every week). I’m so tired of this stuff. I’ve had enough of this” (again).

Well, you know what? So haven’t I. I’m tired of feeling like I’m walking on so many eggshells that I’ll fall through the earth. I’m tired of not being able to speak my mind as fully as I’d like for fear I will lose the roof over my head. Perhaps for once, when I’m overwhelmed, or have hit my own sensory overload button, I’d like to flip my lid, throw an adult temper tantrum, scream until I can’t scream anymore, or swear up the wahzoo. But I don’t and I can’t and I CHOOSE NOT TO.

Why? It doesn’t do any good, it doesn’t solve anything, it doesn’t get anyone anywhere. As a matter of fact, it often creates more emotionality and upheaval until the lava reaches the top of the volcano and explodes. In an environment with highly sensitive kids we have to stay calm, stay calm so they can regulate themselves more effectively, stay calm and give them air (space) and water and a bit of earth (grounding) until their earthquake or volcanic eruption passes or lessens. (Maybe a bit of fertilizer so they can grow too).

Wouldn’t I like my kids to not need services? ABSOLUTELY. However, that’s not reality, that’s not the truth of how things currently are. So, is one hour a week worth giving up the television in the living room and eating a slightly later dinner in order to provide Wes with a service that is helping him, helping him to learn how to recognize emotions in himself, to script what he should do when he’s angry or upset, to help him learn that other people have feelings and emotions just like he does?

And, wouldn’t I like to have my own flat or house? No doubt about it. Seamus in his psychiatry evaluation earlier this week was asked “if you could have 3 wishes, what would they be?” The third wish was typical of an 8 year old (so much so that I forget his answer), the second wish was a money tree “so we can buy lots of stuff,” the first wish – a house.

***

I’m trying and I’m doing the best that I can. The best that I can to support my boys on all levels, the best that I can towards becoming more financially sound so we can move into our own space. And the best that I can to take care of myself too. The best that I can.

For parents of children with special needs it’s challenging. It’s challenging to find time to schedule and attend evaluations, schedule and attend appointments, work, be here and available for someone who marches to the beat of a different drum or have the money to pay for someone else to be here in a harmonious way without getting burnt out or exhausted.

To everyone who says “I don’t know how you do it,” or “how do you do it?,” we do it because we have to, because WE CHOOSE TO, because we want to see the people we love succeed and shine as brightly as they possibly can, where they can, however they can. It’s this love that keeps us going, that keeps us moving through even the most challenging of times when we’re knocked down, or left wondering how things are going to work out, or feeling so overwhelmed that we curl up into a ball in bed and quietly cry ourselves to sleep. It’s LOVE that gives us the strength, the perseverance, the tenacity, to do what we do Every. Single. Day. It’s LOVE with which we see the BEAUTIFUL, AMAZING GIFTS in every child. And, it’s love that gets us through those moments.

I invite people, instead of saying to someone “I don’t know how you do it” or “how do you do it?,” to a parent of a child with special needs, or to a cancer patient fighting for their life, etc, that you instead stop for a moment, listen to your heart, and say “You have an amazing capacity to love, to be strong, and to persevere.”

This folks, is why. It is why we

don’t

                                                                     give

up.

Advertisement
This entry was posted in advocacy, autism spectrum disorders, parenting, Uncategorized, writing. Bookmark the permalink.

1 Response to I Won’t Give Up

  1. Amazingly honest and elegant post, Amanda. Keep cultivating that love. You are doing amazing work! Your boys shine and will continue to find their inner lights under your guidance. xoxo

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s