Last year about this time I was worrying about Zack starting Nursery.
I needn't have, he has settled in well and is making some progress. Woah. Hang on, SOME progress.
Ahem, I apologise now for the blatant boast I am about to make on Zack's behalf.
He was given some little goals at nursery when he began. Very simple ones, ones that I knew he could do as he had been doing these at home for the past six months or longer. However nursery hadn't seem him do them in the classroom and they were popped onto what's known as an IEP (Individual Education Plan).
His were to make a choice, such as choose between two toys, anticipate to something such as ready steady go, and to track or follow an object.
HE GOT THEM ALL.
......................................................I was having a proud moment. And good on him, well done Pants. I knew you could do it.
He has new goals now. Tougher ones. Not sure if he will get these but glad they are harder.
One is a social goal, spending time with another child and reacting to them etc. The second is to vocalise more in order to get attention. Apparently he is starting to do a bit of this, I like that they put this in his plan. The third is to try and get some more mid-line play happening, that is to get his hands together in the middle to play with a toy.
Okay boast over.
As I was saying this time last year, I was worrying about nursery. This year I am worrying about schools. He goes to school next year. Next September and deciding on the best place for him is a hard decision.
I took a look round the Royal School for the Blind in Liverpool. It was a wonderful place, teaching obviously geared towards children with visual impairments. Of the children that I saw a lot of them reminded me of Zack but the journey is over 20 miles, not sure if the school warrants me sending him on such a long trip each day.
In my quest to decide on the right place I have spoken to many different people about where they have sent their child and their reasoning behind it. I have also spoken to parents of children who are considering mainstream schooling for their disabled child. And it's that very consideration that often makes me pause longer than usual on the debate between special needs and mainstream school.
You see I've looked at the local mainstream primary school. It's lovely, as you would expect from a small local school. Right for Zack? I'm not so sure. Of the special needs teachers I have spoken with most agree that the right place for a child with profound special needs is with teachers who specialise in that area. But why do some parents choose to send their child to mainstream? Is it because at the very core of their decision making they want their child to be accepted as the norm? That by sending them there they are saying to the world look they are okay, they can cope with a mainstream setting? Is it lack of acceptance of their condition the real reason behind mainstream choices?
On the other hand does putting a disabled child in a school for special needs just widen the gap between their peers even further? Does it ostracise them from their community? Does it single them out as being even more different?
I know in my heart of hearts that for Zack the right school for him will be a special needs school. There he will get the right help, the right kind of teaching to accommodate his learning ability. However in saying that, I don't want him to go to a school whereby they assume that all children with similar disabilities are the same and therefore don't push him.
And as I know a special school will be right for him, I also know deep within my very core that he is bright and that if he has the right teacher, the right person to help him to communicate using whatever system that may be then he will surprise a lot of people.
To me this belief is almost like saying to an atheist I know God exists. Without proof, I know God exists. And without proof I know there is more to Zack. I say to people that I think he's bright and quite often it is met with a polite smile and a sympathetic nod of the head. I know what they are thinking, is he? Really? Aaaaah, well she probably wants to think that, gives her comfort.
Well, no it doesn't bring me comfort. You see, I will carry on making this statement and shouting about this for as long as Zack needs me too because for now I am his voice. It isn't comfort, it isn't a need to grasp onto a slither of hope that might show that he can actually do something. No it's an understanding and quiet resonating belief that he is there, listening, understanding and waiting.
That's why choosing the right school is important to us. And I will get the right one. And he will surprise you.
This isn't my blog, it's Zack's. Zack arrived here seven weeks early, he had no heartbeat and wasn't breathing. He suffered catastrophic damage to his brain, he has cerebral palsy, problems with his hearing, vision and feeding. Our lives are both challenging and extraordinary. He is a gift. I hope that for whatever reason you find yourself reading this blog it can go some way to help those in the same situation and some way to remove the cloak that covers parenting a child with disabilities.
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4 comments:
Brilliant post! Echoes exactly a conversation I had with a friend recently who is doing her Phd in Education and needed to interview me about the mainstream/sen school choice for parents of disabled kids. I am either fortunate or unfortunate in that not only do I have the Mum's persepctive but I am also a teacher in a mainstream primary school and well aware of the environment Elin could have been in if we had gone down that route. You basically articulated my exact thought's in your post so I don't have much to add EXCEPT that I too work in a lovely, local, small Primary school. And I know we are just not equipt to deal with achild like Elin. The school just isn't geared for it. Yes, she could have an amazing support worker, but ultimately it's the combination of workers with amazingly honed expertise and also resources that make the SEN schools so good for children like Elin. In the end, it's a no-brainer. However, does that make it easy? Does it heck. When I was pregnant my baby was absolutely going to the local primary. Not only did me and my sister go there, but so did Paul's older kids (Elin's half brothers and sisters). The cherry on the cake was that my own Mum is a support worker there and has been for 30 years 9how cool to have Nana at your school!). Add to that it's less than a mile away and you could say it was going to be the perfect choice. I was devestated when it dawned on me that it was not going to be right for Elin. They had no equipment, no knowledge. The rooms were small and would not lend themselves easily to wheelchair and physio stuff lying around. The curriculum was intellectually based. Should I insist? Should I fight, and get her into the school? I wasn't sure. After all, wouldn't it be good for her to be part of the local close knit community? Would it be wrong to deprive her of contact with 'ordinary' able-bodied children? And honestly it would make ME feel sooo much better. But then I went to look at the SEN school. Children like Elin everywhere, a sensory goldmine. People stroked her hand and spoke to her. They asked if she was fed through a mickey, did she have seizures. Could she see, how much could she hear. They had a physio room, a dark room, a soft play room, a hydrotherapy pool, what looked like the whole of TFH there at their fingertips. They had everything. I never looked back. I hope you find the right place for Zak because ultimately none of the above matters, you know in your gut when you hav found the right place. And you know in Zak's face too :-) x
Thanks for your comment. It is so interesting hearing the view from the other side so to speak. So often I hear about children similar to Zack doing well in mainstream and I think, hmmmm, should I send him. But then, like you say. the SN school has it all, expert staff, equipment, it is the right place for him. Thanks for reading. xx
Tried writing this twice already.. My original slightly revised plan that I settled on when I was pregnant was to send him to our local
school. But after diagnosis day, having had a chance to get to meet/know him, I've had to change my mind. I think SN school could benefit him. It's not the be all end all if he does not attend mainstream school. Would it be wrong to deprive her of contact with 'ordinary' able-bodied children- yes but when mainstream schools are not appropriate, maybe we should be finding other less hard ways to do it. My child goes to activity classes with his peers which is less difficult for me than if he were to attend mainstream. It's a big step attending school.
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