The Holiday Note I'd Like to Mail to Everyone on My List

2015 has been hard. The toughest year of my life.  It’s hard to always maintain optimism.
They say, “Don’t let the diagnosis define your child.”
Intellectually I understand this, but emotionally, it is nearly impossible.

We eased into the dx by accepting the fact that our child will likely always live with us. As long as we’re alive. That ‘fact’ has recently been challenged – at least in my mind. He is only five years old. And I’m only thirty-five years old, but there are days that I just don’t know how we’ll physically manage ONE. MORE. DAY.

We joke that it’s like Groundhog Day at our house. I guess we joke about it because if we don’t joke, we’d cry.

His inability to attend to any task is incredibly wearing and debilitating. His intellectual disability plays out at its toughest when he bites and/or pulls my hair. He does neither of these out of malice, but instead when he’s tired and/or excited. It’s senseless to punish him because he just doesn’t know any better.

His consistent need to chew/bite on non-edible objects (blankets, zippers, t-shirts, cabinet pulls, doorknobs) is concerning. “Out of your mouth, please,” thankfully, typically works, but only for him to put the object (or a different one) back into his mouth within seconds.

As he grows, he ages out of certain therapists and we have to get new ones, which is always a challenge. Finding the right one is a challenge. Finding one that takes insurance is a challenge. Getting pre-approval from the insurance company to cover the new therapist is a challenge, etc. And then you get to work w/ the new therapist and they all make the same well-meaning suggestions. As though I’ve not tried that?

Then there’s always the task of dealing with insurance to cover the medical bills, MediCal to cover the incontinence supplies and the Regional Center to help with respite hours.

Nothing is easy.

We took the plunge earlier this year (April) into big-gun anti-psychotic medications. Not because we wanted to, but because we were desperate to get help for our child. At the time we started Abilify – our son was four years old. FOUR. The medications all seem to have some honeymoon effect but eventually the child seems to adjust … and then you wonder if you should increase the medication or try something else?

He’s now in his 2nd year of potty-training and there’s no linear progress. Sometimes he’s interested, sometimes he’s not. Another frustration.

He’s still unable to feed himself any better than a 1 year old. Sure, he can shovel dry cereal into his mouth or dry pancakes or other ‘finger food’ – but there’s no such thing as him eating cereal with milk, French fries with ketchup, yogurt, toast with peanut butter, beans & rice – without him making a mess that will take twice as long to clean up vs. having just fed him yourself.

It’s nearly impossible to spend time with our neurotypical friends. Ummm, “No, he cannot sit down and do an art project (without me constantly helping/redirecting)”, and “no, he isn’t able to sit still to watch a movie, either.” It’s also depressing, to me, to see how different he is from his peers.

Special needs playdates are tough to coordinate because most of our kids are in so much therapy, our schedules never align. And if scheduling isn't the problem - then it's us moms that are all so, understandably, flaky and exhausted.

The idea of having any more children has slipped another year out of reach, which is another sadness. I wanted nothing more than to have taught values; appreciation, dedication, charity and purposefulness, to name a few, to my children. All concepts that, sadly, are currently lost upon my child (although we do try).

Life just isn’t fair. Which isn’t new to me. I get it. It’s just so much more unbalanced and difficult than I could have ever imagined. I keep trying to find reason and meaning, but it’s tough.

Thank you for taking the time to read. Thank you for allowing me to vent. I feel better. I think. We have no choice but to plow forward. And that, my friends, is what I’m going to do.

2016 -- Please be gentle.
Please don’t be as tough as 2015.
Please allow us to find an easier path.


Author Note – I fully understand and realize that my child is only five years old.  And we can be very hopeful and encouraged that things will get easier as he grows and matures.  We can also be hopeful that science will come around to a place that will be able to help him, and us, better manage his challenges.  This note was written, however, as a means for me to communicate our current struggles.