Monthly Archives: May 2016

Too cool for THAT school …..


When Aine was approaching school age, it was our very strong desire that she was taught in a mainstream setting. I’ll be very honest with you, I feared the stigma of specialist settings. I imagined her growing up, meeting new people, and being judged for saying she went to a special school. I felt she would be academically ahead of the other children there. I thought that in mainstream she would be pushed to achieve, she’d have competitors, peer pressure, standards. I failed to take into account the pure stubbornness of her and the lack of interest in what others were doing, so long as she was doing what she wanted to do!

It worked initially, in a fashion. She learnt to read, to form her letters and numbers. She learnt shapes and facts. She performed in plays, I will never forget her little friend prompting her ‘Aine, it’s your turn’ in a loud whisper mastered by five year olds, and her saying ‘oh, look at those flippy floppy feet!’ We’d practised for months. Seeing her friends bring on a chair during a dance display to help her to stand up, hearing her shout ‘where is my mummy’ upon hearing my unmistakable laugh and seeing her straining away from her teacher to get to Daddy. Those are wonderful memories that I will treasure forever. But I also remember the stress of attending parent/child activities. Doing projects at home and sharing them in school with a group of other pupils and their parents. I was beyond stressed. I would worry for days that she wouldn’t cope with me being there and invariably I was right to. Mostly the other parents paid no attention, I knew a lot of them and they understood Aine’s difficulties, but I still felt under the spotlight, unable to control my child’s anxieties and outbursts. The stress of CAF meetings, review meetings, receiving reports, attempting homework, the dreaded Sports Day. I’m sweating thinking about it all.

As she entered year 3 it was apparent how far behind she was. She had missed a lot of schooling because of seizures and illness. She had been attending half days for the most of her last term of year 2 because of fatigue and now she was still really operating at year 1. We decided to ask for a placement, part time at a special school. Thankfully, after a lot of stress and begging, we were granted a place two days a week at a wonderful school. After looking around both MrM and I felt that we could see Aine fitting in well there.

Year 3 at mainstream was a bit of a non starter. By November we knew that Aine wasn’t moving forward and that mainstream schooling was no longer working for her. She knew she was being treated differently, she wasn’t doing PE, she wasn’t accessing the curriculum, she was often sitting apart from her peers. I was receiving messages that Aine was a problem to them and that broke my heart. In order to get Aine the education and support to develop she needed, we felt that the only option was to continue just with the specialist school. Thankfully she was offered a full time place there. I say that as if it was easy. None of it was, I have stories that would break your heart, but my dignity is preserved and I will keep them to myself.

Now don’t get me wrong, Aine still takes exception at having to attend school. She is still anxious about being away from Mum or Dad, she still wants to stay in her jamas all day, but the things these kids get to do is awesome.

She goes horse riding. She has sat in a helicopter and a fire engine. She’s made Chinese food and dressed in traditional Chinese dress. She’s danced the Charlston. She is about to go on her first ever residential. All things she couldn’t access before.

I would like you to know that I don’t think special school is the best option for all kids with additional needs. It just is in our case. Some mainstream settings get it right, some work really hard to include those children that need extra support and some struggle with that. I don’t regret any of the choices that we have made. I truly believe we have given her the best chances. And to prove it this week she was ‘pupil of the week’. For horse riding and working hard in PE. I love her school. Her teacher is wonderful. The kids are fantastic and the staff offer more than just education, they support our family and that is priceless.


Warrior ….

It’s fair to say as ups and downs go, we’ve had a lot of downs recently. Aine’s epilepsy is unstable, and for the first time this week her consultant described it as intractable; hard to control with medication. 
After a lengthy discussion, it was decided to increase her current medication to try to bring her seizures under control. I was nervous, I see the side effects of this medicine and don’t want to increase them. Anxiety, insomnia, loss of appetite, aggression, and one not noted, stammering. I wonder what the girl underneath these drugs would be like. We see glimpses of her. Giggling, loving, polite, bright, but these are often overshadowed by the shitty stuff. But what are her options. Surgery, scary stuff, ketogenic diet, she hardly eats as it is, and more meds, more side effects. Epilepsy really is a nasty condition. 
As for the ups, well after agreeing flexible schooling, Aine has been doing half days for a while. Today she did her first full day in a while. She went horse riding. Last week she wouldn’t get on the horse. This week she did and she loved it. She went swimming too. That’s her favourite thing to do. Her teacher said she’d had a great day and really enjoyed herself. 
But then we’re on a downer again. Tonight we see the meltdowns. The anger, the outbursts, the inconsolable crying. Back cramps, she bit me, so hard on my shoulder. It’s hard to stay calm. It’s hard not to cry. Why is my child so angry towards me, so intent on hurting me. I don’t know for sure, I can only hypothesise that it’s because she can’t tell me how she feels and her senses are overwhelmed. She doesn’t hate me, I know that, but it does feel that way when I see the expression on her face as she lashes out at me. We always hurt the ones dearest to us, don’t we?
And then came the vomit. It’s not usual for Aine to be sick, except after a seizure. It was grim. All over the bed. 
She’s fast asleep now, snoring softly, curled in the foetal position. I love her with all my heart. I’m so proud that she rode a horse. I’m so proud that she can remember his name. I’m so proud that although she has this evil condition, she battles. 
She’s my little warrior.