apraxia, depression, down syndrome, raising a non verbal child, raising special needs kids, special needs blog, special needs kids, special needs mom, special needs mom depression, Special Needs Parenting
I wish I could say that friends and family, in general, ask how I am doing from time to time. That they regularly call or text to check on me. It’s probably not that they don’t want to ask, but rather that they surmise that given my lifestyle, or lack thereof, I must be a total mess, so why ask. This is why depression for the special needs mom often originates from isolation.
There are other factors, of course. Juggling your child’s medical needs, behavior, and absence of progress can be exhausting. On top of that, considering you might routinely check the outside gate at least ten times over the span of thirty minutes to make sure it is still securely locked, just so to be certain your child cannot escape, well….yeh, there’s that.
And how about those ten years without sleeping through the night because of the sinking feeling that tonight might be the night her ticker acts up or gives out?
Or the thousands of diapers you have changed for a child who is unable to potty train?
The bottles you have made for the child who has such incredible sensory issues that he cannot eat solid food, so everything is still pureed and placed into a bottle so he can self feed?
Oh, and don’t forget how your child, over time, grows…and grows….and grows….making meltdowns at the grocery overwhelming and epic…instead of picking her up and carrying her out to the safety of the car as you so often did in the past, you now have to kneel down in the floor alongside her in public, holding her until the episode passes. The room is too bright, too dark, too loud, too quiet…
I could go on. So could you.
While all of these concerns are challenging, they do not produce depression. You love your child more than the air you breathe, so the work that goes into raising him or her or them, is part of the package. Your routine, though it seems unhinged and chaotic to the outside world, is your normal. You, in fact, barely notice anymore.
But others do, don’t they? And perhaps that’s the kicker. They see, but they don’t really see. It can be likened to the old saying: “You cannot really understand another person’s experience until you’ve walked a mile in their shoes.” In my case, and I’m guessing in yours too, it wouldn’t take a mile. Possibly only a step or two.
Psychology teaches that it is human nature to avoid situations that make you uncomfortable, especially when it involves circumstances you cannot change or improve. I am a living testament to that. Those I at one time deemed as absolutely essential in my life have exited stage left. Gone. Skedaddled. Vamoose. Even family. Unexpected? Yes. But even more, it is heartbreaking for my kiddos who are unable to verbalize how they feel about being abandoned.
I’ve questioned more times that I can count whether I am, in all actuality, a monster….and maybe I just can’t see it. It’s been thrown up in my face a time or two (or one-hundred) as well. The words jab me like a punch in the gut:
“Open your eyes. There is a reason you are isolated. They leave you and never speak to you again because the problem is you.”
So I’ve wondered. What is it about me that makes it so easy to leave and to forget? to disregard?
There are times when I’m certain I’ve been short-fused, screwy, eccentric, and incredibly hard to understand….I am raising two children who have Down syndrome, health issues, sensory issues, and who are non-verbal in addition to an adopted teenage daughter who is battling all of the manifestations that go hand in hand with Reactive Attachment Disorder…Trust me, I see that I am anything but “normal” and/or “easy”. But isn’t family supposed to stay?
There are also instances when I haven’t the energy to return phone calls or when I’ve been too pre-occupied to remember a special occasion, but for the most part, I have put work teemed with sacrifice into my relationships for the benefit of my children. But there is no mercy for this monster and her kids. No communication. No visits. Left teetering on a proverbial tight rope, hanging precariously over one-million things that could go very wrong every single day, I balance on my own, knowing if I get off kilter, if I wobble, and Lord help me, if I dare fall….my world could fall apart….thus causing their world to fall apart. The isolation, doing it all on my own, is by far the hardest part of it all.
And where is God in all this, right? The other day, my daughter became upset and threw a cup of water across the room, quickly followed by a full plate of food. While I was busy teaching her to help me clean up the mess she had made, which probably took about twenty minutes (yes, I could’ve had it cleaned up in five minutes or less had I done it myself), I noticed I wasn’t hearing any sounds from my son. When I found him, he was hanging onto the side of his bed with white knuckles, tears rolling down his face, and with both feet stuck into one single leg of his “feety pajamas”…. he dangled only mere inches from the ground, but by his own estimation, he was hanging from the side of a cliff. I have no idea how long my little guy, who is non-verbal and unable to call for help, had been hanging there. I felt awful. Once free from his predicament, he grabbed my neck so tight, squeezing every ounce of comfort he could find, trembling from head to toe. My first thought was really God? Can you relate? Situations like this happen all day every day in my big-top world. Hello, Ringmaster? You do realize You have put a clown in charge of this circus, don’t you? A ‘monstrous’ sort of clown.
When I fail to make sense of it all, and when depression sneaks in to steal, kill, and destroy, it is my faith in The Ringmaster alone that keeps me going. In the loneliest, most difficult of times, I honestly feel His presence. No matter whether I’m still and quiet, or running around in circles, He is faithful and shows up to make Himself known in simple ways, it could be through the words of a song or the kindness of a stranger, but He always shows up. He never fails. “The Lord is near to the broken-hearted” has become one of my favorite verses. It is profound, and it means, quite frankly, that He is near me often. It means that He loves me no matter what; that He doesn’t see me as a monster or a clown at all. He sees me, instead, as His daughter, His princess, His beloved. He sees you that way too.
The battle is real. As you can tell, I have experienced what it’s like to feel inadequate, repulsive, worthless, invisible, and to wish I didn’t exist. Those thoughts, however, are taunts and barbs coming from the enemy, who is so weak, he has no other way to fight. And so he fights like a sissy, trying to win by making us doubt ourselves. Scripture, however, says the truth is what sets us free. And the truth, friend, is that you and I are warriors. We give up sleep, hobbies, vacations, nick-nacks, and a social life to raise and protect our babies. When therapy isn’t working, we do hours of research to find new, and innovative ways to help our children. While the world looks on and sees what our kiddos cannot do, we look at them and see a world of opportunities. We hope. We dream. We never give up. And that, dear one, is the reason the enemy works so diligently to isolate us. It’s all a hideous game to rob us of joy, to rob us of life. When we see his schemes for what they truly are, then we can laugh in the face of adversity and cling ever tighter to The Ringmaster. Which is the point to this whole life thing anyway. To The Ringmaster, I have a hunch, we are not a bunch of clowns….who knows? We very well could be the main event.
When you feel isolated, and all alone, remember: “The Lord watches over you….He is the shade on your right hand.” Do you see Him? He’s there, even now.
Godspeed. You are not alone.