Dec 21, 2017

Celebration of Achievement

Celebration of Achievement Night

Our Celebration of Achievement evening was well attended, providing an opportunity for everyone to hear a most inspirational speech by Harry’s mum. She moved the majority of the room to tears and spoke so passionately that we thought we would like to share some of what she said with all of you.

‘ I don’t consider myself to be particularly inspirational, just a parent like you but I’ve recently published a book about my journey as a mum unexpectedly thrown into the world of special needs and I blog about our adventures in the hope that it offers some information, guidance and amusement to other parents – I do have to say that many of my readers laugh at me as much as with me so I think I’m doing ok on that one. My son Harry was born with Goldenhar syndrome which basically means that the left-hand side of his face never developed. This alone wasn’t a reason for him to attend special school but when he was three he was diagnosed with autism and his struggle with social interaction and speech meant that mainstream school just wasn’t the best place for him.

I’m going to be honest and say that I was heartbroken.

You see Harry is a twin and when I was carrying him and his brother Oliver I had big plans for their lives together. I imagined their school plays and discos, girlfriends, holidays and adventures. Their jobs and futures. I was so excited to see what lay ahead for my babies. When Harry was born with his syndrome, a part of that dream slipped away. When he was diagnosed with autism, it drifted further from my reach and separating my boys to send them to different schools felt like I was admitting defeat. That I was giving up on Harry and relegating him to a life of less. How wrong I was.

I was asked tonight to talk with you about some of the challenges that we face but I just wanted to say that some of those challenges were my own doing and looking back I can see where I made life harder for myself with unrealistic expectations and pressure on myself I just didn’t need. As our students move forward with their lives and your parents and carers do the same in supporting you I just want to remind you to stop every now and then and look at just how far you have come, because you will be amazed. And you will be proud.

One of the main challenges that we face when we are out and about is the reaction of other people. Harry does look different and for a while when the boys were babies I stayed at home as often as I could to avoid the stares or whispers. One day, when we had the usual gang of children following us and whispering “Ugh look at the baby!” I stopped the pushchair and invited the children to meet Harry. They said hello, asked me a few very understandable questions like where’s his eye and will he get a new one and then they left. Just like that. It had been that easy all along. Sometimes facing your greatest fear is the only way to move on and I have never looked back from that day. Now, I encourage questions and im not looking for the stares and the nudges as much as I did. Yes it still stings at times but now instead of worrying about what people are thinking I feel sorry that they haven’t taken the time to meet my boy and see how wonderful he really is. I have set up a charity called More Than A Face and will be going into high schools to educate children on facial disfigurement in the hope that I can help the next generation be one which judges people on who they are and not just what they look like.

Another challenge for me as a mum is making sure that Oliver gets enough of my time and attention too. Every day there are times when Oliver needs me or wants to share something with me but I am busy with Harry. Sometimes I can be away for days or weeks when Harry has surgery in Liverpool. Oliver never complains. He never sulks. He just accepts that Harrys needs are often immediate and his can wait. I try to make sure that Oliver and I have time together as often as we can. In the school holidays Harry has a day at the holiday club he loves (even though I feel guilty about that) and Oliver and I have a day to ourselves. We will go out for coffee and a cake sometimes or just nip into town while Harry stays with my partner. Little things that make a big difference because for as hard as life is at times for Harry and for me, I honestly believe that the siblings are the unsung heroes of our stories and they deserve more than the tired leftovers of the carers we become sometimes. But we are a team and I have no doubt that you are too.

As the mum of a technically non-verbal child I also find it hard not knowing what Harry is thinking or feeling. What he did with his day and who he played with. Where it hurts when he is crying and what tickled him when he is laughing.  He doesn’t tell me that he loves me unless I tell him first (although I think that’s a teenager thing too) and I worry that he will forget me when I die like he’s forgotten others because we don’t talk together to keep their memories alive. I simply cannot know. What I do know is that he is such a happy boy and if he wasn’t then even though he cant tell me with his words, he definitely has ways of making his feelings clear. No words doesn’t mean no communication and every day Harry is getting better at making his thoughts known. Recently he's started throwing his own food on the floor for the unpredictable ball of fluff that we’ve had for two years called Sherlock. Im hoping it means that Harry is finally getting used to our dog. Sherlock isn’t bothered either way as long as the food keeps coming.

I've already mentioned that I didn’t want Harry to go to a special school. I had a very old fashioned idea of what that would look like for him but when his dad and I visited Springfield in leek I realised how wrong I was and we just knew that that was the school for our boy. We could see him there and we weren’t wrong. We felt the same when we came here to visit and again, it was another fantastic choice. 

Being the parent of a child with special needs and disabilities is not easy. Our days are often fraught with worry, drenched in exhausted and peppered with battles for the things that our children deserve. When my boys were first born I used to hate it when people said harry had been sent to me for a reason. Now I now it was true. Not because I was the right mum for him, but because he was the right boy to create a mum in me and teach me so much just by being his wonderful self.

Tonight we are here to celebrate so many achievements but I also want to let the students know what you have achieved that you may never get a certificate for.

I want you to know that you enrich the lives of everyone around you; your parents, family, friends and teachers. Harrys favourite teacher (and first love) always says “he taught me more than I ever taught him” and that’s true for you too. You show the true meaning of courage, of perseverance, of strength, of love and humour. You work through your struggles without self-pity and though I am sure there have been tears and tantrums along the way from everyone, you are always amazing people by exceeding expectations. Your parents love you in a fierce way that they find hard to explain and your teachers are proud of the fantastic students you are and the outstanding teachers you help them to be.

Every day you are amazing just by being your wonderful selves and so as we celebrate the achievements of the evening I want every student, parent, carer and teacher to feel incredibly proud of themselves. Always strive to make the person you are as well as the things you do, your greatest achievement in a life you already add so much to. Wishing you all the very best.