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.

The Chocolate Wars

I have a pretty enviable three year old, who does what he is told. He looks for my hand as soon as we get near a road or into a car park, he isn’t a screamer or prone to tantrum, he always says thank you, and he never ever takes things without asking.

Well, he never used to,  anyway.

The last two weeks I have woken up in the morning to various ‘surprises’ in the kitchen. Empty wrappers, chocolate crumbs, empty spaces where expensive imported treats used to be.. All before 7am. After receiving various pieces of advice, I decided to chronicle the events, for other judgemental parents worldwide, and as a testament to the last few weeks of my life-if as I suspect, the stress of this early morning battle of wills actually forces me into an early grave.

Sunday May 11th
Hubby calls me into the kitchen, to be greeted by a virtual mountain of Reese’s cup wrappers. I count the damage, 9. I’m torn between shock that he would take them and eat them without asking, and hope that I don’t have to deal with projectile vomiting elsewhere in the house. I go find R, and after naughty corner, sternly tell him it is not acceptable behaviour, and there will be no treats for the rest of the day, and take away a stuffed toy. No tears from him, but those punishments are usually the end of it in our house, so I get on with the day.

Sunday May 18th
Had almost forgotten about last week’s ‘mishap.’ About 7.30am, I went to throw some rubbish in our kitchen bin, and was confronted by an empty bag of giant milky bar buttons. A bag I could have sworn had been half full. So unsure that it would have happened again, my first instinct was to ask the other man in our house. “Darling?” I called through the bathroom door. “Did you wake up in the night with the munchies, and finish off half a bag of giant milky bar buttons?” Surprisingly, my hubby was not the culprit.

This time I got really angry. Especially after asking R if he’s eaten anything from the kitchen and getting a negative response. Stealing, Lies, Deception tactics… was my son on the road to a juvenile detention centre?! Overreactions aside, (after three minute naughty corner for us to confab) this time we took away iPad, (more of a punishment for us frankly) and favoured toys for a week. Niggling thought in back of head that we needed a consistent punishment if this was going to become a habit. Also occurred to us that taking away treats doesn’t really work when the child in question has already had more chocolate that morning than you would ordinarily allow in a week.

Monday May 19th
“He’s done it again.”
No one wants to wake up to those words. Not for the second day in a row. I blearily went into the kitchen, to find a Musketeers Bar gnawed on on the floor. Should I be glad he at least didn’t try to hide it today? Unimpressed by the peanuts, he had bitten off all the surrounding chocolate, leaving a pile of shavings on the floor. I literally gave birth to a hamster. Sigh.
Again, he denied it, even when faced with the evidence. He started pulling funny faces, looking cross, and basically acting.. well.. three. Eventually I was rewarded with the indignant, “What?! I was so hungry!” which surprisingly didn’t make me feel any better, especially as he had been given a full cup of Cheerios about a half hour beforehand, still untouched in his bedroom. We decided on a consistent punishment, but I have a feeling it’s more about getting through to him.

I turned to social media, and as we all do, asked a question I already had my own opinion on, and waited for someone to agree with me. Should I move the choc to a cupboard out of his reach, or find a consistent punishment and stick with it? I had an overwhelming response towards option number one. Nearly everyone agreed that he was too little to deal with the temptation, and I was causing myself more hassle than necessary trying to get the message into his little boy head.

Of course, like the majority of us, I couldn’t care less what anyone else’s thoughts about my parenting are, and decided to ignore popular opinion and keep at the consequences approach. Short term pain, long term gain. As easy as it might be to just avoid the problem and move it all away, by persevering I would teach R that he can’t have whatever he wants without asking, that lying is wrong, that gluttony is wrong. It would be worth it in the long run when I had built up a three year old who asks permission, who knows that just because something is tempting, it doesn’t mean he gets to just take it. I would be raising a man who is loyal and honest and has patience, and is TRUSTWORTHY.  Either that, or just less calories for me to inhale in the mean time. Win Win.

Tuesday May 20th
Success! No chocolate eaten, one happy little boy reunited with the iPad and lots and lots of praise and play. Oh all of ye of little faith out there! I had an excellent talk with him, explained all the reasons why he can’t help himself, and here are the results. Smug mum alert. I knew I could get through to him.

Wednesday May 21st
Er… May have spoken too soon, if the remains of an ENTIRE EASTER EGG in the bin this morning are anything to go by….
Again, greeted by denial and angry face, and eventual insistence that he was “very very hungry” and then that I was “not at ALL splendid.” (Cue fist in mouth to muffle snort of laughter and maintain stern face.)

If this hadn’t already become a matter of principle, I think I may be ready to move to the ‘move it’ camp. But hey, who DOESN’T love banging their head against a brick wall eh?

We have now enlisted nursery to help, with his favourite Auntie coining the hashtag, “Big Boys Don’t Take Without Asking.” I love it; we’re printing t-shirts.

Not quite, but we have made a fetching sign together, and dare I say it… I *think* he gets the message this time.

Agree with me? Think I’m mad? Feel free to post below. I can only hope this is the end of the saga, but something makes me say “To be continued…”

IMG_3768