The One Thing I Want in Life for My Autistic Son

My son has lots of difficulties in life. He can not talk, he can not read, he can not write. He struggles to join in anything others are doing, preferring instead to flap at lift doors opening and closing or turning hand dryers on and off repeatedly. There is a long list of things I would love him to be able to do including communicate his needs, be more independent, understand what people are saying to him or even use cutlery.

Yet two days ago a photograph sent home in his school bag made me suddenly realise that all I really want for my son is one thing: to be included.

My son attends a school for children with severe and complex needs. Many of his ‘friends’ are wheelchair users, or non verbal or perhaps require to be fed differently via a tube. Some have behaviour challenges and others have genetic conditions or learning delays, but they all have unique and wonderful personalities. The small class sizes and increased staffing are necessary for all of the children, most, if not all, of whom will require support all of their lives.

However his school building is modern and custom built. One of the most remarkable things about the building is that it is shared with another school. This is a new and innovative idea where I live but one that seems to have huge benefits not just for complex needs schools and mainstreams but for schools of different faiths too. The building announces proudly to the community that we are all one and we are all the same even if we appear to others as different.

I have to be honest and say I would rather my son did not have some of the physical and cognitive challenges he faces daily. I wish he could speak, I wish he could read and write not because it would make me feel proud as a parent, but more so because it would benefit him so much. I wish he could attend mainstream school like his sister does because he would be known in the community and have friends locally he could play with, not because I have any issues at all with the challenges he faces. He is loved immensely for who he is but it would be beautiful if he was with his peers much more rather than separated and educated so far from home.

So getting the photograph sent home with him spoke so much to me. The photograph shows my son with children from a mainstream school playing a game. He is being supported not by specialist trained teachers or support staff but by another child. He is being included.

That is what I want above anything else for my son. I want him included as equal in society.

I don’t want him pitied.

I don’t want him ignored.

I don’t want him excluded.

I don’t want him mocked.

He has had enough of those things already.

Yes there are things my child can’t do, but there are things every one of us can’t do either!

The children in the photograph had no need to know the list of diagnosis my son has. They didn’t need training in the latest model of therapy for those with autism or have to have hours of training in physical therapy. They didn’t see a child who can not speak or who is unable to read. They saw a child called Isaac and did what they could to have him join in to the best of his ability.

See my child. See him for who he is and not all the things he can not do. See him as a child who is worthy just as every other child is. See him as a peer.

Please let this photograph help change society. Please let this be the generation who sees people as equal.

Please give me hope that the one thing I want for my autistic son may actually happen one day.

Maybe you can’t include MY son but you won’t have to look far for a child who may also have autism, or a genetic condition or who struggles. Send them that party invite. Encourage them to join in the game. Offer to push them on the swing at the park.

Every act of inclusion is an act of love. I promise you it is worth it. I promise you everyone will gain from this.

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What are schools really saying when they reward 100% attendance? 

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I sat at the back of the hall at my daughter’s school end of year assembly smiling as the choir sang, the oldest class performed and finally the awards were given out. As a parent it is such a proud moment to hear your child’s name called out and their achievements recognised. Awards for academic achievement, endeavour, sports, star of the year and citizenship had me cheering, smiling and clapping. Then one final reward which made me so angry I actually wanted to get up and walk out: 100% attendance! 

 
What? You mean they actually reward children with a certificate for not missing a single day at school? Yes it is actually common place and, in my opinion, absolutely awful!

 
To put this in context the average attendance in my local authority this year is over 95% so hardly a huge issue. I do understand some children are absent for reasons that are unacceptable but is this really something to penalise the child for or is this not something that would be better dealt with via education of the parents or guardians?

 
So what are schools really saying when they reward 100% attendance?

 
1. They are telling children ‘we want you here even if you a sick’. 

Surely this goes against all health and safety and human rights of the child and others in the school? This is telling children that coming to school comes before their own physical and mental well being which is appalling. The entire point of education is that the welfare of the child should be central. By rewarding attendance you encourage children to come even when contagious to other staff and children or when they are in no fit state to learn. Stop and think…if an employer put attendance of higher value than human rights would we not be calling our union and going to the press? Then why do we praise schools when they do this?

 
2. They are telling children ‘school comes before your own family.’

Yes children are put down as ‘unauthorised absence’ when they are off due to a family funeral or when there is a family crisis. A few years ago a good friend of mine lost her entire home and possessions in an awful house fire and as a result of being homeless and having no access to uniform or a roof over their head the children lost out on attendance awards! That, to me, is saying to children that even if you have no home, no clothing and no bed to sleep in you should still come to school. In other words, we just don’t care about your home life as long as you attend, even if you are in no state to learn! 

My own family had a sudden death in the family this year and as the immediate relatives it was down to us to make all the funeral arrangements and deal with the estate. The problem was the relative (my children’s gran) lived over 400 miles away. Did school really expect me to say to the undertaker ‘I’m so sorry but as this is term time could you keep the body until the next school holiday?’ Life does not run to school timetables and children are part of wider families where death, hospital stays, separation and unexpected events happen. Do we actually want to live in a society that places school attendance above the welfare of our own children?

 
3. They are telling children ‘turning up is just as important as learning’ 

That sounds good doesn’t it. They will claim this is an award ‘that all can achieve’ wether they are academic or even have additional support needs. You don’t need to be sporty or overly confident or even the ‘teacher’s pet’ to get attendance so what’s the problem? The issue here is that children come to school not simply to have their name ticked on a register as having attended but to learn and develop. We are supposed to be preparing children for the future but what employer would want someone turning up to work doing nothing? If a child has managed to keep up with the pace of learning and tried their best all year is this not of much more long term value than just being there?

 
I get that schools want children there. I understand they are accountable to the local authority for attendance. I understand they want to be seen as inclusive and have awards for children that struggle academically or do not overtly shine out in any subject, but why pick attendance?

 
Make school a safe haven, a place of significance and fun where children want to be. Educate parents on the importance of helping your child to attend as much as possible. But please, do NOT reward children for coming in when unwell, for putting school above family or for just merely having their name ticked on a register. 

 
I thought we were all about having the child at the centre or getting it right for every child or whatever else they wish to call it?

 
Oh and while I am here: not one of the staff members in her school this year would have gained an attendance certificate so why should the children not be treated the same? 

Special child denied special school

I can just see the headline now on the national newspaper. 4 year old boy with tumours has no school to go to. Disabled boy denied the education he deserves. However it reads it will be a riveting story. A story of a young boy who can not talk and is completely incontinent with medical and developmental needs denied the education he deserves by his local council. Shocking. Appalling. Outrageous. But true.

Far too true and way too close to home.

Because this is the child I am talking about:

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This is my son!

Isaac has severe and complex needs. He has a diagnosis of classic autism, global developmental delay, learning difficulties and a medical diagnosis of neurofibromatosis type 1. He has no speech and he still wears nappies. He did not learn to walk until he was 3. He is still being tested for a number of genetic conditions. And the law says he has to go to school at a certain age.

Isaac is due to start school in August this year. The law says he has to be enrolled in his local mainstream school which although heartbreaking, I did in January this year along with every other parent of pre-school children in Scotland. I knew he would never attend that school but had to go through the motions of producing all the necessary documents and signing all the necessary forms. But Isaac had already been put forward to the ‘forum’ back at the beginning of December the year before for the council to make a decision on where best he should be educated.

This ‘forum’ did not meet until March/April and at the end of April we were allocated a place in a very busy mainstream school with a unit attached.

We went to view it but it was very unsuitable for Isaac’s needs so we appealed and also put in a placing request for our local special school. We waited a long and agonising two months to find out today that our appeal AND our placing request have both been refused.

So we are expected to send our precious baby to a school with stairs when he can only ascend stairs with one to one support or else he crawls up. We are expected to send him to a school where he would not be getting one-to-one support. We are expected to send him to a school where he would be expected to have his lunch with almost 300 mainstream children and share a playground with the same children. Where there is no on-site nurse to be there in the event of his medical needs requiring attention. Where he would be one of 6 children with only one qualified teacher and perhaps one member of support staff.

As hard as it is for me to write, this is a boy I adore and treasure more than life itself after all, I know within my heart that my sons needs are profound. He self harms and harms others. He can escape within seconds, he eats and chews everything so presents a choking hazard at all times, he has challenging behaviour, he self stimulates, he eats his clothes, he is non-verbal and can not use sign language or pictures to communicate yet. He is completely incontinent and needs changed regularly. He has sight problems and balance problems. He has very little awareness of his surroundings. He can not call or ask for help. He can only use a spoon and his fingers to eat. He can not hold a pencil. He can only understand a few key words. He has no sense of danger.

He is a special boy and all the professionals agree he requires special education. But a group of people who hold the power within the education department, who only know about this boy through written reports, feel it is ok to deny him the education he deserves.

Could you deny this baby boy a special school? I couldn’t!
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