How to have a happy Mother's Day when you're unhappyMay 11, 2023
Only special needs moms understand how hard it is to be a special needs mom. For many of us, our experience is so unbelievably hard, when we describe our struggles to others they don't even believe us.
We love our kids with all of our hearts. In fact, I'll go out on a limb and say we love them more than other moms. We have to. More love is required, because ego-based parenting does not exist in the special needs world.
For me, Mother's Day is a weird combination of wonderful and woeful. Wonderful because nearly every day, my son and I make a deep connection. We are close. We have to be. There's no easy, verbal communication between us, so we have to feel our way through. We're so close, it's hard to describe. I KNOW him. Like, knowity-know know him. And he knows me inside and out, too. The good, bad and the ugly.
And that's where the woeful part comes in. Those deep, otherworldly connections are often preceded by a traumatic event. Every day is physically and emotionally exhausting, and our breaks are too short to gain any meaningful rest.
This Mother's Day, I'm going to try something new. Rather than repress my woeful feelings and focus on the positive, I'm embracing both.
First, I'm going to accept that my family is traumatized AF. It's traumatic to watch your child punch themselves in the head and bite the backs of their hands until they bleed. It's traumatic when your child punches you in the head and bites you until you bleed. It's traumatic when your child destroys something of yours that you really love. It's traumatic when your child destroys something necessary, like a window, and you can't afford to replace it. It's traumatic when your child has a violent seizure, they'll probably have more, and there's nothing you can do about it.
It's especially traumatic when all of those things happen in the same week. We've all been there.
Sometimes we can't help but fall apart. On days I just can't anymore, I'm reminded of that scene in the movie Room, when Jack describes his mother's catatonic state.
"Today is one of the days when Ma is Gone. She won't wake up properly. She's here but not really."
Our lives aren't as traumatic as Joy's, although like Joy, most of us can't walk out the door with our kid and leave. The point is, it's okay for us to have Gone days. We are holding together a substantially traumatic situation with little to no support, and no end in sight; it's perfectly normal to shut down some days in order to survive.
It's also okay to feel envious and a little hateful toward parents who are blessed with healthy kids and complain about things that seem petty compared to our problems. Struggles aren't a competition. Logically, we know this is true.
Emotionally, it doesn't work that way. We're only human. If it makes you feel better to scream, "STFU with your stupid BS problems!!" at your phone as you're scrolling through social media, go for it. Let it out!
Now that you've embraced your negative emotions, let's move on with some hope.
I shared these reasons to feel hopeful with Nonverbal Autism Homeschool parents earlier, and received so many positive responses, I decided to share them with everyone.
First, even though most days it doesn't feel like it, things ARE getting better.
The social and medical approach to autism continues to improve, with less emphasis on behavioral modification and more research on the medical reasons for the behaviors. We're not even calling them behaviors anymore in many spaces. They're symptoms now, as they should be.
Facilitated communication is gaining more acceptance and nonspeaking adults are leading the charge. FC has its detractors, but the words of our brave spelling pioneers are undeniable. These amazing young adults keep me going when I don't feel like I can face another day.
Nonspeaking adults are also leading the way for the creation of better day programs, with educational and social opportunities for nonspeakers that allow them to live more fulfilling lives.
Compassionate independent housing solutions, led by parents and nonspeakers, are popping up all over the country. These solutions will become easier to replicate with time.
And then there's the wildcard: technology. The first iPad was sold only 11 years ago. Look how far AAC has come in just one decade! Just imagine what unexpected technological advances will change the lives of our kids in the decades to come.
Finally, I pledge to keep you up to date on these advancements and do my best to keep you feeling optimistic and supported. Special needs parents are more than just caregivers, and if we're emotionally and physically broken, we can't support and nurture anyone. We must care for ourselves, too.
Speaking of optimistic, one of the moms in my program shared with me that the movie SPELLERS is available to stream for free this week (just two more days, I think) on the The Highwire website.
This weekend, take a deep breath and tell yourself it's going to be alright.
They're going to be alright.
We're going to be alright.
It's going to be alright.
Happy Mother's Day. ❤️
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