Keep Listening

I recently wrote an article about how difficult and frightening it can be as a parent of a child with a special need, when it comes to approaching your child’s teacher. I discussed the fears and the expectations we all try to balance daily, and the fierce ‘mama bear’ instinct that can be so hard to suppress when we are advocating for our children.

This instinct doesn’t only rear it’s head when we are facing a particularly difficult or frustrating situation, It is there all the time, and probably exists outside of the special needs world as well. It’s an overwhelming urge to do the most you can for your child; a surety that our children give so much just to get through what would be second nature to their peers, that they deserve to have equal opportunities, and sometimes perhaps more than the children around them. Like any parent, we want our kids to have everything. But they sometimes need that bit more help.

Once in a while, we meet a person or a teacher who goes above and beyond. Who waits outside the building to meet you in the morning, because the room looks different today and they know your son doesn’t like change. A friend who brings an extra copy of the story book to rhyme time so that your child doesn’t have to simply sit and listen to words which refer to pictures he can’t see. A teacher who takes the paperwork for his statement home to make sure all the t’s are crossed and i’s are dotted before an important deadline. Who never forgets to crouch down to his level to say good morning, so that he can see their facial expression clearly and know who is speaking to him. Someone in your life who phones you before booking their own child’s birthday party to see if it’s accessible for yours. A visual impairment specialist who somehow knows exactly how to bring your child out of themselves, help them learn confidence and social skills and pride in their own abilities. Who not only encourages your child to be the best they can, but encourages you to give them the freedom they need and simultaneously find confidence in your own parenting.

Those of you who follow my blog will know that my writing is broader than any specific person or place. I am overwhelmed by the response I have received for my special needs article, from parents in countries around the globe, whose children vary from toddlers to teens, all of whom have sadly experienced the emotions I wrote about. I am so glad that my words resonated with all of you, and I truly hope you’ll forgive my foray into the personal just this once, and that the following speaks to you too.

Because once in a while, as the parents of a special needs child, you have experiences that make you forget why it is ever difficult. This week, my 3 year old walked out of nursery with a ‘welcome to big school’ folder, with all the same photos and drawings as his peers. The only difference was that unbeknownst to me, his folder had been made 3 times the size of anyone else’s. My heart burst with joy as he easily showed me who he will be taking with to big school, and explained to me what every page in the folder meant. And the ‘mama bear’ inside me was proudly redundant.

This week, as my son says goodbye to his nursery, I am sad. He entered the building barely two years old, with no language, little confidence, and zero understanding of his own limitations. Among so many other incredible leaps, he can now clearly tell me when he cant see something, is strong enough to ask for help, and yet somehow still has no idea that there is anything in this world which he cannot do. I couldn’t possibly ask for more.

Being the parent of a child with additional needs is often hard, and there is no setting or person in the world who will know your son or daughter and what they need as well as you do. I can only hope I continue to find people in our life who go above and beyond to ensure he is always as happy and secure as I saw him this week.

Start Listening

I have never felt so helpless in front of another human being.

I have been a child, strapped into a highchair or a car seat, wriggling for freedom to run and play. I have been a teenager, full of angry hormones, shouting and demanding independence and insisting I know best, met with inflexible rigidity. I have been a woman, crippled with labour pains, fighting against my own body for release and comfort. But standing in front of you, I have never felt so acutely another persons hands wrapped casually around my heart.

You are my sons teacher. But I am his mother. To you, that title may not mean much. Yes I gave birth to him, but I do not have any qualifications or certificates to prove my worth. I don’t have years of experience or references from children now grown. I don’t have a shiny laminated badge with my credentials, and I can’t issue you a formal letter with expectations or give you any funding or resources.

But that title. That word. Being a mother to that little boy means I know. I know the obstinate way he mutters under his breath crossly when he’s done something naughty, I know that as soon as we walk in a room he will be counting the lightbulbs, (including which ones are faulty.) I know from how far his head is tilted to the right how much difficulty he is having seeing something, and I know from the subtle head wobble when he is too tired to try. I know when his frustration at being left out or overwhelmed is causing naughty or difficult behaviour, and I know when it’s just a symptom of the dreaded threenage years like any other fully sighted child.

You are his teacher. But I am his advocate. I’m the only one he has. And it’s a ferocious balancing act throughout which I’m scared nearly all the time.

Scared to argue my case, because I know that we’re paired together my son and I. Who knows how I could unintentionally offend you and without any malice on your part, have it taken out on my helpless child? Frightened of not saying enough, and leaving him without the same opportunities that so many other children and parents take for granted. Practising with my husband in the morning before I approach you, trying to find that elusive tone of voice, or expression that will make my words appeal to you. Hoping that you will put aside the issues of resources and check-boxes, and just look at this mother who has no pride, and would crawl over hot coals if it meant that you would believe she isn’t hysterical, she isn’t trying to upset you or make your life harder, she’s just acting on the most basic instinct on the planet, that of a mother protecting her young.

I am one of thousands of mothers whose child needs that bit of extra help. We shouldn’t have to write letters or shout loudest or cry tears to be heard. We shouldn’t have to pick our battles and decide which parts of our children’s school life aren’t as important for them to access if it turns out that we can’t fight for them all. We certainly shouldn’t have to feel scared that we’re going to be ignored or condescended to or fobbed off with excuses when we summon up the strength to stand our ground against the system.

But in a world where these situations are often the sad reality, please acknowledge how it takes immeasurable courage for me to approach you. I am the advocate for my son. I’m the only one he has. For the time being, I am not only his eyes, but also his voice. And I’m asking you to stop simply hearing me, and start listening.