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.

Advertisements

A Day In Mainstream School For My Autistic Daughter

I am so grateful that my daughter can talk and that she shares freely with me her worries and stresses of school. This day in the life has been written with her full consent and approval to help others see how challenging mainstream can be for some children with autism and how they can perhaps ‘hold it together’ all day but explode at home. 
img_2266Morning preparation 

I wake up and come downstairs and try not to think about school too much. I get my iPad or toys and set them up just how I like it. I know I need to get dressed and eat but until things are ‘right’ I can’t think about those things. I need to do one thing at a time so please leave me alone. Let me do it my way. Constantly asking me questions is so stressful as is nagging me about time. By the time we need to leave I am already stressed and anxious.

 
In the playground

I am scanning. This is so hard to see who I need to see when everyone is dressed the same and moving around. The noise, the unpredictable movements, the bags on the ground…that’s a lot to take in for me. I only want to find my best friend and the longer it takes to find her the more I get worried. What if she is off sick? What if she has an appointment today?

IMG_2395The bell

Bells panic me. They mean I have to move somewhere quickly and I sometimes get stressed. Bells mean pressure and children running and they might push me over. I stand in my line and face forwards making sure I don’t look at anyone. The teachers shout about not talking and standing straight but I am doing those already and not sure what I should be doing differently. I turn to see if everyone else is doing what I am doing and now my class is pulled up for me facing the wrong way! I feel to blame. I feel so anxious. I feel different. 

 
Getting to class

I have to remember to put my bag one place, my packed lunch somewhere else and then hang my coat on the right peg. It can be confusing to remember all that while others are talking and moving all around me and the lights are so bright inside. Sometimes I wait until most of the others are in the class but then I worry I will get shouted at for taking too long! Sometimes I forget I have my school bag as it is on my back and I can’t see it! How can everyone else do this so quickly and easily and I can’t?

Class

I listen so much. In fact I listen so hard to everything that sometimes I can’t do my work because I need to stop and listen to everything the teacher says in case she is talking to me. I want to write neat because I don’t want a row but then they say I need to work faster and I can’t do fast and neat. It is hard to concentrate with others so close to me. They move about and talk and turn pages and it is so distracting sometimes. The walls have so much stuff on them, I can hear the tap dripping and I can hear people walking about.

I am scared to talk in case I get in trouble.

Sometimes I just can’t do the work. Yesterday they wanted us to do a senses poem about fireworks. They told me to imagine being at a bonfire with fireworks but how can you do that if you have never been to a bonfire before? I haven’t. They told me to write about what I would touch but you are not allowed to touch fireworks so I can’t write anything. They told me to write what I can smell but all I can smell right now is disgusting school dinners and I can’t even spell that. I just leave that one too.

Then the teacher gets me in trouble for not doing the task. I want to cry. The tears won’t come out.



Playtime

I don’t understand this bit. You play with toys so why call it playtime when there are no toys? Just call it ‘talk time’ or ‘stand in the playground time’ instead. I take my own toys out. Then it rains and we have to come inside and I can’t play with my toys and it is so confusing for me. I don’t like changing things. I get cold at playtime because it is hard to fasten my coat and if I take my time the people tell me to hurry up and go outside so I just can’t fasten it up now. I have one area I like to stand and play with my one friend. We play the same game every day. We like it that way. I want to play with others but I can’t because I don’t understand what they are playing. They don’t have toys. I can’t work out made up games like that.

Lunchtime

Lunchtime is horrible. We have a short time for everyone in the whole school to eat and they want us all to line up and take turns and sit at huge tables with other children I don’t know. I just want to sit down and get time to eat and not have to hear chatter chatter and smell what everyone else has that I don’t like. It is far too noisy and busy and yet no-one will open my yoghurt or peel my banana. I feel lost and confused and just want out of there. 

P.E

I hate PE so much. I never know what we are going to do. Sometimes we do balls and sometimes running and sometimes sports. I hate it all. I know I can’t do it and people laugh. How can I catch a ball when there is so much else going on in the same hall at the same time? I can’t focus. I am so cold. My legs don’t like not having trousers on. My arms miss my cardigan so much. I once fell and hurt myself in PE so I don’t run now because running is dangerous plus they said at assembly to not run in school so I don’t run. Then they tell me to run and I want to ask ‘but you said not to run in school’ but my voice won’t work. I want to cry. The tears won’t come.

I do like school. I like learning and I like doing work. I like having a desk and I really want to be star of the week. I like the other children though I don’t know if they like me. I want to tell you about things that have bothered me like being told to work quicker or not eating. I am tired from it all and now I feel safe. I want to cry. This time the tears will come so please let them. 

img_2186
I am ok. I just need to let the day at school wash away so I can rest.

School can be hard but then everyday can sometimes be hard when you have autism like me. 

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

IMG_1816
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? 

I blogged, you shared and together we won!

Over 1200 read about my boy being denied a school placement to meet his needs. So it is only right that the same people get to hear what happened today.

We won!

And here’s the details:

We had the letter arrive to say our placing request for a local special needs school had been declined on the legal grounds that the school would need to employ another teacher. To you and I that means the school is full.

We had also asked for the original decision to place him in a unit within a very busy mainstream to be reviewed. The review also came back as the original decision being upheld.

So here we were with the following options:

1. Take the council to tribunal through the summer. We were very very unlikely to win a tribunal if the school is full. 

2. Consider a late deferral and hope to find a suitable school next year. there are only two special needs schools for our whole area. We would have had to go through the whole process next year again with no guarantee of getting it right again.

3. Home school.

4. Do something totally radical and ask strangers to help.

5. Send him to the school they wanted (Not a chance!)

I must be crazy but options 1-3 (let’s rule out option 5 straight away) did not appeal and as we had nothing to lose I wrote my usual weekly blog. And put it on my usual social media outlets. Except this time I begged people to share it. And ask others to share it. Get it out there. Make it public. 

So I blogged. And you shared.

And I emailed the press. Then I called the council. And they got worried. So I sent them the blog too. 

And a few hours later they called to say they wanted to talk. Great. I was delighted to listen. And an arrangement was formed. We could still not have a place in our local special needs school but we COULD have a place in the other school. In other words: WE WON!!!!!

So can I say THANK YOU!

Thank you for playing your part in changing a decision that would have been detrimental to the health and welfare of my son. Thank you for being part of our miracle. Thank you for reading, sharing, talking about it and praying. Thank you for caring enough about a little 4 year old boy you didn’t know. 

Thank you for changing this boy’s future.

Image

I blogged, you shared and together we won! Please feel free to celebrate with me. He has his first induction this Wednesday!!!

Hallelujah.

 

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:

isaac pjs

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!
577606_10200518715804508_832777491_n