It Gets Better {A Special Needs Kid Grows Up}
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As my children have grown, I have become far more protective (and far less open) in the things that I share particularly about them. I know I’ve made a lot of mistakes in protecting their privacy. I continue to tighten the reigns. But this morning, I feel the need to share this post about our kid as a response to something I wrote on this day 6 years ago – in 2017:
Finally through our last {week}day of summer.
I am pooped.
I don’t feel like I rocked it this summer. At all.
I didn’t do the behavioral therapy worksheets we downloaded. We didn’t spend very much time outside. I didn’t fill his hours with proprioceptive activities and crossing-the-midline exercises.
Some days – er – most days, I didn’t really even use the clip chart.
I yelled too often and hugged too little.
I drank too much coffee and Diet Coke. The kids watched too much Netflix.
I’ve become a gum addict, because…stress. And I don’t drink.
We have been pulling clean underwear out of baskets in the living room more days then we pull them out of the drawers.
Last night, I was cleaning diarrhea off the walls at 11:30 PM.
I am discouraged.
I tell his teacher at open house, “I don’t really feel like we’ve made any progress this summer.”
I didn’t tell her, “I feel like it’s my fault.”
I spent the entire day making my special needs child photo albums of his last 6 birthdays to give to him as a gift for his 7th birthday, because looking at photo albums helps him fall asleep. He was mad and stood in the hallway saying mean things about me when I told him to get out of my room.
This week he has told me that he thinks I’m a horrible person, that I never want to spend time with him, that I don’t treat him like he’s my kid – that I don’t ever let him do anything fun.
At bedtime he cries and demands to be covered up while his almost-two-year-old brother calmly sings himself to sleep.
I don’t know how to keep doing this.
I don’t know how to keep hope that “someday” it will get better. That “someday” we won’t have to say the same things over and over and over and over. That “someday” every request (no matter how mundane and every-day) won’t be met with defiance, whines, and questions.
I don’t know how to get him to understand that my doing ALL THE THINGS is my loving him. That when I tell him, “Take your medicine“ (for the 5 millionth time) or make him sit on the potty and poop before we leave the house that I am really saying, “I love you.”
That when I refuse to tie his shoes because he can do it, that it’s because I want to see him succeed.
That when I set boundaries, ignore his cries, and hold my ground when he’s bashing me because I refuse to carry him out of the Y – that I am loving him by helping him “someday” grow into a responsible adult that can function “normally” in this world.
I don’t know how to convey to him that the reason I’m so tired, frustrated, and annoyed with him is because of ALL THE THINGS going on in my head in which I am worrying about him and how to best help him.
I wish I knew how deeply I love him, in spite of how often it seems I don’t “like” him.
I wish I could take a vacation from special needs parenting so I could just be his mommy.
Reading posts like this is so incredibly bittersweet. I remember these days vividly. My heart breaks for my former self, and how bad things were. My heart breaks for my former child, both for how much he had to struggle, and that his mom then wasn’t the woman I am now. But if I were to live those years over again, even with all the knowledge I have now, things would still have been hard.
The biggest reason I felt the need to write this post was to share just how far he has come…we have come. I want to tell other mamas of kids with behavioral challenges: IT. GETS. BETTER!
Because, let me tell you about our kid, six years later…
We’ve homeschooled through the last 5 summers. My boys have spent hours and hours outside, especially during milder months like April and October. (We actually do a lot of school in July!)
We no longer use or even need behavior charts, although we have edited our family rules a few times and have those up on the wall as a reminder.
I still raise my voice too much; but most mornings we have Morning Cuddles™️, and he’s gets many other opportunities for cuddles and hugs throughout the day.
Full disclosure, after making coffee, fixing mine just the way I like it, and bringing it to my bedside warmer – he flopped his almost-13-year-old body on the bed while I was drinking my first sip, sending coffee everywhere, and putting a big splotch of coffee on my Sudoku book that was lying on the floor next to my bed. I was ticked and put an abrupt end to Morning Cuddles™️ because he wasn’t controlling his body appropriately. But after stomping out of the room, he came back and apologized. Also – this happened after making coffee, fixing mine just the way I like it, and bringing it to my bedside warmer.
We nixed Netflix and have drastically reduced screen time.
I’m still bad at laundry, and last night he pulled underwear out of a basket instead of a drawer. BUT, I’ve started ironing again (WHAT?) and even teaching my kid how to iron.
I am his teacher, and I get to see his progress right before my eyes daily.
At bedtime, he takes his medicine and crawls in bed to read. 30-45 minutes later, his eyes are heavy and he’s ready for sleep (thank you Trileptal!). He can make his own bed, straighten his covers, and cover himself up on his own now. He still always wants Mom to give him a hug and kiss, but he doesn’t throw (too much of) a fit if that doesn’t happen.
In the morning, if I leave him with his medicine container, a post-it note, and some water – he will take his meds without being told. Throughout the day, he will take his meds without fussing every time he’s told. Some days, he will even ask, “Mom, is it time for my medicine?” when he’s starting to feel hyper.
His bedwetting stopped several years ago, and his digestive issues are almost completely gone – thanks to him being willing and eager to have a more varied diet and drink more water (and a ClearLax Subscribe & Save Subscription).
He ties his own shoes every time, and has even helped Little Brother learn to tie his own shoes.
His dad and I (if I’m honest, more Dad than I) have done the hard work of setting loving boundaries with him and insisting that he rise to his capabilities. He hasn’t always understood why. But now I am seeing small glimpses of what he can “someday” become: a responsible adult that can function “normally” in this world.
I’m still often tired, frustrated, and annoyed with him (he’s a middle school boy after all!), and I still always have ALL THE THINGS going on in my head. My roles of “special needs mom” and “just his mommy” have blended more seamlessly (along with teacher, counselor, and so many more). I will probably always crave alone time and probably never get enough of it, but I continue to build a life that I don’t feel the need to escape from.
He will probably never know just how how deeply I love him. Does any kid? But when he still grabs my hand on a family walk or gives me a kiss on the cheek in the middle of church, I know that he is expressing his love because he feels that love reciprocated and he feels safe with me.
I’m so thankful for this awesome kid who will be an official teenager next month (ready or not!). I am thankful for the progress he has made. I’m thankful for the people who have loved and supported us along the way. It’s been hard, but God has been with us each step of the way – guiding us, caring for us, opening our eyes to the changes we needed to make because of our kid and FOR our kid.
As he has grown up, I have grown up too. Happy {Early} Birthday baby boy.
2 Comments
Julia
I needed this! God knows how much I needed this. I am in the throes of those early “challenging” years. I can’t see beyond the behaviors, IEPs, therapies, the tears, and the fear! Thank you so much!
Aprille
I’m glad I could encourage. Today has been ROUGH for me – struggling with both this one and my younger one who has ADD and we are struggling to find the right medication for him. The hard continues, but it does change and certain things do get way easier.