A View From The Special Needs Trenches

A View From The Special Needs Trenches

Waves crashing up to the sand beach

By Lisa MacColl

I am the parent to a child with a variety of invisible neuro-developmental, cognitive and behavioural challenges. She has permanent, irreparable brain damage as a result of her birth mother’s use of alcohol and drugs during pregnancy. It is what it is and we deal with it, some days better than others, some days not at all, but we do it, and we get up the next morning and do it all again. Here’s a glimpse of life in our trenches.

Self-Care is a Dream

If one more well-meaning millennial counselor reminds me of the importance of self-care, I may throat punch someone. I know they are coming from a place of genuine concern, because there is a middle aged, frumpy, tired woman sobbing in a chair in the office. I know that I have to take care of myself because when the ringmaster falls, the whole circus falls too.

But here’s the thing. Wanting to do it and having the ability to do it are very different animals. Self-care, especially when it involves things like actually leaving the house for a period of time to do something just for me takes time, planning, energy and money. I can’t just leave my daughter by herself and go for a walk. She may be a tween chronologically, but mentally, cognitively and neuro-developmentally, she’s closer to six or seven. Would you leave a six year old child to fend her herself at home? Neither will I.

We can’t just ask the neighbour’s kid to babysit. We need a babysitter who understands and can handle our daughter’s challenges. That limits us to one babysitter, and we pay well. That also means we limit the use of a babysitter to very special occasions.

The rest of the time, taking time for myself translates to a couple of games of Candy Crush or drinking my coffee while it’s still hot. I used to read voraciously, but now I read for pleasure at bed time. The rest of the time, I’m reading for work or to learn more about my daughter’s challenges so I can be a better parent.

I Doubt Myself

I see you over there, Mrs. Judgey McJudger, with your disapproving stare and your pursed lips. You’re watching the meltdown in progress and you’re thinking that it’s over-indulgence, or poor parenting. I heard you too, Mr. Smugpants with your Stepford wife and your perfect McChildren. I heard your muttered comment about the need for a good smack. I was strong-arming my child out of the store in the middle of a meltdown that day, or I would have obliged you and smacked you upside your head as requested.

When there is no ability to process action-consequence, all the sticker charts in the world will not solve it. When there is no ability to control impulses, no amount of withdrawal of privileges will change the see-want-take. When there is no ability to extrapolate from one situation to the next, every day is groundhog day, and just because my child understood something three days ago does not guarantee she will understand it now. I have to remind her every day to wear socks, to brush her teeth, and tell her what to put in her backpack every single day.

So I doubt myself. I don’t need help on the self-doubt front, so you can just keep your opinions and snark to yourself. You can’t possibly make me feel worse, and seriously you have no idea what we go through in a day, or even in a morning.

I Worry

I worry what will happen to my daughter when we’re gone. I worry who will take care of me when I’m old, because my daughter won’t be able to care for me like I cared for my mother and I’m an only child. I worry that she wants to take a babysitting course, and I know no one in the neighbourhood will hire her because she’s been ostracized. I worry that she wants to go to the mall with her friends unsupervised and with her lack of impulse control it could be a shoplift waiting to happen. I worry that her “friends” would set her up because she just wants to be liked. I worry that she knows she’s different and she gets upset about it. I worry that the kids at school pick on her because she’s different and there’s not a damn thing I can do about it because she has to go to school because homeschool is not an option, because then we won’t have a home to homeschool in. I worry that one day she’ll figure out she can get on a bus, and then she won’t know how to get home and we won’t know where she is. I worry that she’ll want to take driver training when she’s sixteen, and what if she doesn’t pass, or God forbid, what if she does. I worry about teachers who don’t understand her, classmates who are mean, parents of those classmates who are misinformed and make decisions without proper information. I worry that some days I don’t think I can do this parenting thing and I still get up and do it again. I worry about finances, because all those extra therapy sessions and summer camps are expensive and I can’t do my day job if my kid is home from school yet again. I worry.

My Normal isn’t Normal

I live vicariously through other people’s trips with their families. Trips to tropical destinations or Disney, smiling, happy children playing in the sand on the beach, I smile and say all the appropriate things, while I’m crying inside. How could we take a plane because what if a meltdown happens while we’re flying at altitude and there’s no where to go. And if we did manage to get there, would it end up like every other time we’ve gone to an amusement park and the sound and people overwhelm her and we have epic meltdown? I don’t know if it will ever happen, this happy family vacation thing, and it makes me sad.

Our normal is trying to block kicks, punches and flying objects in the middle of a meltdown. Our normal is reassuring the neighbors we aren’t murdering our child just because she’s screaming “don’t touch me,” even though we aren’t within 20 feet of her, or even on the same floor. Our normal is pushing our very tall tween in a shopping cart because that’s what it takes to get groceries done quickly, and spending a fortune on sushi and crab because she will actually eat that right now, and at least it’s protein, which is better than the packs of dried seaweed she was eating before that. Our normal is packing four spoons in her lunch every day because she can’t use the same spoon for different things. Our normal is watching sugary intake like a hawk because artificial dyes, especially red or blue will send my child into orbit for hours because she was born addicted to sugar, and there’s no such thing as “just this once.” Our normal is watching the same show 100 times because she has OCD and is perseverating. Our normal is trying to explain confabulation to someone with no experience, and reassuring the teacher that no, we did not send tequila in her water bottle and there’s no need to call child services. Our normal is casually going for a walk a few minutes after she walks to school by herself to ensure that she actually got there and didn’t get distracted by squirrels, dogs, rocks or random strangers, and conversely, looking out the window at home time until I see her coming around the corner without actually being caught looking out the window until I see her coming around the corner. Our normal is dealing with a tween’s changing emotions and a junior elementary school brain. Our normal is replacing lunch containers and bathing suits because she can’t remember to put them in her backpack. Our normal is hiding snacks if we want to have any. Our normal is a lock on the cake sprinkles, if we buy them at all, because she will eat them with a spoon until she is twitching because she was born addicted to sugar. Our normal is not your normal, and unless you live it, you can’t possibly understand why I buy her the expensive underwear and buy mine in a bag of six at Walmart, because it’s the only underwear she’ll wear and it beats the alternative.

I Grieve

I grieve the child that might have been, while loving the child that is. I grieve the ability to take her to a symphony concert that I am singing in because there is no way she would get through it. I grieve the simple tasks that are so difficult for her, like remembering to wear socks or bring her lunch containers home. I grieve the mean comments, the judgements, the ostracizing and the bullying. I grieve the assumptions that it is my parenting, rather than a neuro-developmental cause. I grieve the loss of myself, because this is so all-consuming and demanding there is no time left for me. I grieve my loss of love of school because it is not a happy place for my child, and by extension, it is no longer a place of happiness for me, a lifelong learner who loved school. I grieve.

I’m Lonely

So often, it’s easier to pretend everything is fine than to try to explain how it’s not. Most of my friends and family know some of the story and the issues, but very few know the whole thing. It’s easier to filter the information than be judged by people who should know better. I don’t need any more suggestions, judgement or “tough love” ideas. I have bookshelves full of them, thank you. So my circle is very small, and getting smaller. It rarely expands.

I’m Scared

I’m scared I don’t take proper care of myself because there aren’t enough hours in the day or dollars in the bank. I’m scared I will fail my daughter. I’m scared all the judgey people are right and it IS my parenting. I’m scared we won’t get the strategies and resources we need in time to help our daughter succeed to the best of her potential. I’m scared I will burn-out, flame-out or implode from the multiple demands and responsibilities and I’m so damn tired. I’m scared I have lost so much of myself that I won’t ever find it again. I’m scared of puberty because adding hormones to this cocktail is going to be so much fun; I already know what the full moons are like. I’m scared of the future because I’m not getting any younger and I was the caregiver to my mother at the end, but who will take care of us because our daughter won’t be able to. I’m scared that her own healthy dose of stubborn and temper will be her undoing and I won’t be able to do anything about it. I’m scared.

I’m Tired

I’m tired of staying up way too late trying to finish work, or find another solution or squeeze five minutes of time to myself because it’s the only time in the day I’m off the clock. I’m tired of the looks, the whispers, the loud comments and the expert pronouncements from people who wouldn’t last as long as it would take us to drive to the end of our street. I’m tired of researching, learning, trying, failing, and doing it again so that I can educate myself, my family, our friends, the health professionals and the educators on what makes my daughter tick, what works, and most importantly, what doesn’t. I’m tired of juggling bills, putting off repairs or begging agencies for resources or assistance so that we can help our daughter succeed. I’m tired of having the same fight with educators every year about the same issues because they haven’t bothered to read the voluminous file that is my child, or even the much smaller IEP that contains the essential information to help her succeed. I’m tired of having to ride my broom into meetings because that seems to be the only way to get people to pay attention. I’m tired of having to be THAT parent, because collaboration and cooperation aren’t working. I’m tired of the look of longing in my child’s eyes when she sees the other kids in the neighborhood playing together, both of us knowing she wouldn’t be welcome if she went down the road. I’m tired of iCarly, Sam and Kat, Drake and Josh and H2O on a constant loop because perseveration and OCD are a lethal combination. I’m tired of whatever the current obsession is, whether it’s Beanie Boos, pill bugs or tattoos and piercings because I will have to hear about it every waking minute of every day until she moves on the to next one. I’m tired of trying to stay a step ahead of whatever it is she will eat for now, and tired of getting the purchase quantities wrong because I misjudged how long the food thing will last this time and I’m stuck with six packs of frozen crab my child is no longer eating and we’re out of the instant oatmeal she is now eating. I’m tired.

Before my child was the one lying in the store having a meltdown, I was smug and judgemental. That changed quickly the first time it was my kid attracting the glares as my mother pushed her grocery cart to the end of the store and disowned us until her granddaughter was back “in control.” I’m sending a blanket apology into the universe to all those other parents that I judged. Sorry about that. I was wrong.

So next time you’re climbing up on your high horse about that kid on the floor in the store, remember this: All parents, biological, adoptive, foster, step or some combination of all of the above want very simple things for their kids: to be happy, to be safe, to be loved, to be accepted and to reach their full potential. Instead of judgment, catch the eye of the mom in the center of the storm and tell her she’s got this. Acceptance and understanding can move mountains. Also coffee. Coffee is good, too.

Lisa MacColl writes about a variety of subjects including finance, investments and parenting. She is a writer, editor, crafter, baker, singer and fights the good fight to keep the cats off the table. www.lisamaccoll.com.