“Mummy, I can’t stop my body.”
In that gutted pause that comes after a loss of control, our 11-year old son found the words to tell me his truth.
“It doesn’t work right. I want a potion to give me superpowers.”
This was after I prised from him the tablet clutched to his chest and saw that the screen was shattered. He had pounded it in frustration because he could not make the volume go loud enough. Instantly remorseful, he had been sitting there in dread, trying to problem-solve. “There’s a place on the High Street with a sign that says ‘tablet repairs’ Mummy. They can fix it.”
We have educated ourselves enough about FASD to know yelling and punishment are the last things that would help him in this moment to learn the lessons he still needs to learn. I was tired, defeated, but my child needed the best of me. “I know it’s hard for you when you are frustrated. It won’t always be like this. When you get a bit older you will be better at controlling your frustration. I love you.”
Trying to think of ways to get to ‘yes’ before this spiraled into a full meltdown: “You are frustrated aren’t you?” Nods. I moved the tablet out of arms reach, lest it become a projectile. “It’s been hard lately, hasn’t it?” More nods. We moved to the couch. He was curled up into himself, while wanting me to scratch his legs, rub his feet.
“You’ve been sad lately, haven’t you?” That’s when the tear appeared in the corner of his eye. The tear that made me choke back my own sadness. These silent tears are rare and heart-wrenching. They speak volumes more than the more common full-on screaming tirades. This poor child is trying so hard. The end of the school year is too much for our son. July has never been a good time in our house.
Every bake sale, non-uniform day, sponsored walk, community outreach activity…every special assembly, film day, school fete, disco and concert triggers anxiety over the uncertainty of expectations and timing. For our son, it leads to strings of negative or oppositional instincts that can leave us all bewildered, shell-shocked, and trying to figure out how to reapply doors to hinges, literally.
For all the positive “you’ve tried hards” there is no sugar-coating the reality that end-of-year reports lead to disappointment and confusion. A little more air escapes from his balloon just as he is trying to wrap his head around the fact that he will have new teachers and new subjects in the autumn.
In every conceivable way that he can, he has told us over and over again in recent weeks that he is on overload. He has refused to go to school, to beloved extra-curricular events. He tells us he is tired, his tummy hurts. He is having digestive problems. He tells us again and again he just wants to stay home. He regresses. He gets caught in the loop of perseverative behaviours – playing for hours with water in our garden, sneaking all the baking soda and baking powder and whisks to make potions – until something throws him over the edge into a meltdown. If we try to redirect, he melts down sooner. He wants to have independence, to determine what he does. But it almost always ends with something that didn’t go just as he wanted it to. And then we have blast off.
So we chat with the doctor. We discuss re-jigging medicines again. Brainstorm about possible other referrals. The team around this child are growing concerned. We can see it in their eyes. We know they are looking at us with deepening worry. Our veneer is scratched and frayed. We can’t even pretend any longer. We all know puberty is crashing down our our not-so-little guy. We need to deal with his anxieties, give him the skills to be able to withstand these many pressures he feels. We need to find ways to buoy him up when he feels like he is getting smashed by wave after wave of intimidating situations.
A psychiatric referral. Tests to see if he has some sort of infection, to see if he needs growth hormone since he has gained no weight in more than six months while finally growing a bit taller. X-rays scheduled to see if there is anything we can do to make the thumb on his right hand work (FASD affects more than the brain, he also has some fused vertebrae).
Each new step forward requires even more logistical juggling. It’s welcome, but it’s more, always more, pressing down on us all. I vented to my husband, maybe cruelly in the middle of a moment, “Prepare yourself. It’s going to get worse, a hundred times worse before this gets better.” The look in his eyes made me think I had slapped him. But the reality is, I don’t think that’s an exaggeration. We somehow have got to get through these teenage years with our son’s self-esteem intact. And it is going to be hard. Hard for him. Hard for us. Hard for his brother. Hard for those around us, watching, wanting to help but not knowing how.
Our son most certainly does not have a carefree childhood, if that even exists anymore. For him, this summer will not be the end-of-year locker-slamming, running-toward-the-freedom release I once knew. For him it is a time of anxiety and uncertainty: unstructured time is no gift to our youngest.
And of course, in our recent daily survival mode, we haven’t fully sorted the coming holiday. So we add another thing to list that we beat ourselves up about. Deer in headlights, we see the summer holiday bearing down on us and make frantic calls for summer camps, urgently fill out forms to register him with various special needs databases and not unsurprisingly find out way too late about deadlines missed. More emails. More calls. Clutching at straws. We find one day-camp that looks great, they even have a Special Needs Coordinator. We gently raise the idea with him. He didn’t say no. We wonder if we are going to lose a lot of money if we sign him up and he then refuses to go.
And the cherry on the top? The last day of school coincides with his birthday, which is an event to him on par with or exceeding Christmas. The disappointment will come when he does not get everything he has requested for months on end. (The list would bankrupt Richard Branson). This year we are going to use the day to satisfy his sensory curiosity. We are going to have a ‘no-manners dinner’ – an idea stolen from my niece. We are going to have an “eat it or wear it” challenge per his instructions. We are going to try to make it messy and memorable and pray it is as fun as he thinks it will be – but we dread it, are prepared for it to all crash down. We have learned with this son that we cannot be rainmakers. No matter how delicious the food I cook, and how many times he has liked it before, I am always ready for the instantaneous rejection that I try ever so hard to not take personally. Birthdays, holidays, we are always on-guard. We know for him the mundane is the true gift. Which doesn’t mean he doesn’t want more. Much, much more.
“Mummy, I don’t want to be 12. I want to be 10.”
This is a child who sees things changing, who feels the differences more the older he becomes. We can’t change what will be. All we can do is shower him with our love – unconditional even-when-you-break-electronics love.
So here we go, the last week of school before the break. Of course England has decided to hit the upper 30s (90s in Fahrenheit) this week, making the school an oven and adding yet more sensory challenges. After we spent 30+ minutes coaxing him and gently trying to ease him out the door despite his refusal, and successfully avoid a meltdown, we work out a deal where his TA will help him plan the shopping list for the no-manners dinner. We gird ourselves for the ups and downs of this week, the week we know we will look back on with envy once we get into the heart of this coming summer madness.
Even if it is not the best-timed birthday, he does after all need a new tablet. The new one will have a rugged cover and a free replacement warranty. We do learn. Slowly. By the time he is grown up, we may just have figured things out.