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Stories About Autism

Back to school, for some not all

If you’ve been on Facebook this week you might have noticed that the kids have gone back to school!

My feed is full of proud, tearful parents, posting photos of their little ones in their new uniform outside their front door. Looking smart, fresh, and ready for their first day of term. For many of them it’s their first day at school ever, and the smiles portray a mixture of fear and excitement for both parent and child.

Above you will see our version. It’s Tommy, looking rather non-plussed, wondering why he’s posing for a photo outside of our house. But you’ll notice he’s not wearing a school uniform.

This week was supposed to be his first at whichever school we had chosen for him. Instead, in this photo, he was getting ready to play at home.

You see, we’ve taken the decision to keep Tommy out of school for another year. The challenges he has with his autism is making finding the right school for him tough, so I hope taking some more time is the right thing for him. He doesn’t seem ready just yet, and it’s not something we want to rush him into.

I always thought choosing a school would be a fun experience. I thought I’d be debating the merits of a school based on academic results, extra-curricular activities, and the amount of sport available. Instead, we now have a completely different set of criteria, and trying to find the right school for 2 boys with autism has been anything but fun.

Four years ago we began looking at schools for Jude. He had been attending a mainstream nursery, which we couldn’t have been happier with. We now had a big choice to make. Should Jude attend a special needs school or a mainstream school with extra assistance?

We had various meetings with the team of people involved in Jude’s development, including our assigned key worker from the Essex pre-school team, to discuss what options were available. I remember at the time hoping for some guidance, desperately wanting someone to tell us what decision we should make for Jude’s future. They had more experience than we had. They’d worked with numerous children with autism and seen what had worked for them and what hadn’t worked. Why couldn’t they look at Jude and tell us what setting would be best for him? How did we know whether he should go to a mainstream or a special needs school?

It doesn’t work like that. Professionals aren’t allowed to give their opinion on sensitive decisions like this, no matter how much you want them to. If we followed their advice and it didn’t work out, then what would happen. You can argue that it’s bureaucracy gone mad, but the fact is no-one will risk putting their name to anything that will influence your decision over something like this.

So, like any other parent, we went to see our different options.

What I write below is an attempt to recall the thoughts I had at the time, and describe how I felt…at that time. They’re the thoughts of a parent new to the world of autism, new to the world of special needs, and a parent still very much in the grieving, angry, and scared stage

We visited 4 special needs schools and 3 mainstream schools, and I think I cried during and after every single one

We decided to take a look at some mainstream schools in the hope that one of them might be right for Jude. If he went to a mainstream school he would be entitled to full-time one-on-one support in the classroom with him too.

The schools we saw were all very nice, but it was clear they weren’t right for many different reasons. In short, they wouldn’t be able to meet Jude’s needs, and to even try wouldn’t be fair on him, or the school.

I remember wondering whether being in a mainstream setting would encourage him to be more ‘normal.’ As if just by being around other ‘neuro-typical’ children would somehow force Jude to act like them. That he would copy their behaviours and everything would begin to be ok. I remember worrying that the reverse would also be true if we chose a special needs school and that being surrounded by others with autism would only encourage him to be more autistic!

I found my first experience of a special needs school setting quite upsetting. Up to that point, the only person I’d spent any time with who was autistic was Jude. Other than a few documentaries I’d watched, that was all I’d ever seen. Walking into a classroom of 8 children slightly older than him, all of whom were autistic also, was a real shock. Seeing autism on such a grand scale, these beautiful children all with their different challenges, was moving and emotional.It’s not the school life that I remembered as a child. At first glance, it seemed as far away from it as I could imagine.

I was too busy watching the other children rather than listening to the teacher showing us around. I was trying to spot the children who appeared most similar to Jude in their behaviours.

Were they talking?

When did they start talking?

If they weren’t talking, what were they doing instead?

Which kids were bouncing, and galloping around rather than walking?

Were there any kids that were tapping every surface they passed?

I was trying to plot Jude’s future based on a 5-minute assessment of another child with autism who shared some similarities with him. As if that might somehow help me make the right decision for what school to send him to.

In the early days of coping and understanding autism, you spend a lot of time searching for answers. You want to know what the future holds, as it seems so scary and full of unknowns. So walking into a school full of autistic children you can’t help but compare them to your son, and wonder how they match up. Will Jude be like the 7-year-old who’s sitting there trying to draw, or will he be like the 7-year-old who is screaming, running up and down in the playground with an assistant as he can’t take another second of being in a classroom?

As we went around the school we could hear strange loud noises coming from the other end of the corridor.  I couldn’t quite tell whether someone was being murdered, or just making lots of noise because that’s what they liked to do.When we entered another classroom we were quickly ushered out as someone else was on the verge of a meltdown, and 2 strangers walking in was not going to help the situation.

In another classroom, a 12-year old boy came over and started talking to me. Within 30 seconds he wanted to give me a hug.

What do yo do?

Do you hug him?

Was I supposed to encourage him or not?

I looked over for some guidance from a teacher, but they were all too busy to see what’s going on.

I didn’t want to appear uncomfortable, but was hugging him the right thing to do?

I didn’t want to upset him, but I was also worried that if I did I might be breaking some kind of rule and would end up with a complaint being made about me!

After spending an hour in the school we were suddenly back in the car, and the tears began to flow again, having been desperately trying to choke them back throughout the visit. Walking around a special needs school, when you’re not used to that environment, is a very emotional experience. I was upset for all of the children in there who have such a wide range of challenges. I was upset that I saw so much of Jude in so many of those children. I was upset for everything that I thought I’d lost by Jude being autistic, and that he wouldn’t have the childhood that I wanted for him.

We ruled out 2 of the schools very quickly. Whilst I’m sure they’re very good schools, they appeared way too clinical for us to even consider. They almost had a hospital feel about them. We were looking for something more. The third school was great but based in London, so either we had to move, or face a long commute every day.

When we went to see the 4th school we quickly realised this was the one for Jude. The amount of love and care shone throughout every member of staff we met. The whole ethos of the school just seemed to be right, and we were made to feel like they would go above and beyond for every child they taught. We went to see it another 3 or 4 times and made our decision. This would be the right place for Jude to go. This was the right setting for him to go to.

Sending any child off to school for the first time is emotional for any parent. You worry if they will make any friends. You worry if they will cope being away from you all day.  You worry that they might cry all day and that the teachers won’t be able to calm them down and look after them.

So, when you’re sending a non-verbal child off to school for the first time, having no idea of where he is going, and no real understanding of why they’ve just been left here, the fear and guilt is overwhelming. Those first few weeks were heart-wrenching, watching him look back as we left him, looking at us as if to say “What the hell is going on?”

Even though we felt that we made the right decision for Jude at the time, he has had some real struggles at school. It’s not through a lack of effort or compassion on the school’s part, just that the school environment can be a sensory overload for him. And right now that’s not a decision we feel able to make for Tommy, or an experience we want to put him through.

The other problem is I can’t imagine Tommy in Jude’s school, but I can’t imagine him in any of the mainstream schools we’ve been to see either. Whilst Tommy is more advanced than Jude is academically, he also has plenty of challenges of his own that he struggles with. He is also currently non-verbal, and still in nappies, and I simply can’t imagine a child thriving in mainstream with those issues.

So, we’ve decided to take our time and give him an extra year out. He would have been one of the youngest in his year too, and I’m sure an extra 12 months will make a huge difference. Tommy will go to nursery 2 days a week to try and prepare him for a school environment, and encourage his social interaction with other children. When he’s at home we have a plan to stick to, and that we work on with him every day. Our main focus is his communication skills and trying to develop that through child-led, one-on-one play and interaction.

Over the next few months we will go back and look at the schools available, and search for some new options too. Hopefully, we will then be ready, and confident that the school we choose will be the best option for him.

P.S……

I hugged him. I felt awkward at the time, but that was my own problem to deal with. Since then I’ve been hugged, high-fived, even kissed on the cheek by various kids at Jude’s school, and I love interacting with them.

Who says people with autism don’t know how to show affection!

 

 

 

 

 

8 comments

  1. Rochelle - September 15, 2015 5:02 pm

    Well said. I have a 14-year-old who we pulled out of school almost two years ago to work at home on social development. It’s not easy. It’s never easy. But I always appreciate a well-written piece by a parent of a child with autism who is in the struggle and dealing with it day to day like me.

    • James Hunt - September 15, 2015 11:06 pm

      Thanks Rochelle. I’m sure it was a tough decision, but ultimately the right one. I believe the key is to try not to be full of ‘what ifs’ and believe that you are doing what is best, after all who knows your child better than you?
      Hope it’s working out for you all

  2. Nadia - October 3, 2015 5:04 am

    I’m so glad you hugged that little boy! Your account of the school visits are so real and vulnerable, that must have been a lot to take in. Giving Tommy an extra year sounds like a great idea. A lot can happen in a year, and spending the year preparing him seems like a step in the right direction to me.

    • James Hunt - October 3, 2015 12:27 pm

      Me too! I hope the extra year makes a difference, although we have to start the school search/decisions now, so it’s still difficult to imagine what is the right place for him. Hopefully as we go look around it will become more clear 🙂

  3. Susan - November 1, 2015 9:18 am

    Hi James, we have a mutual friend who told me about your blog, and my husband and I have been reading with interest ever since! You write beautifully and honestly, and it’s a comfort to read the every day stories about your boys, as we can relate to so much. We’re currently looking for a school for Zach and it’s been an emotional roller coaster that I wasn’t prepared for. i admire your decision to keep Tommy at home and it’s certainly something ill consider too if I’m not convinced of which direction is best for Zach come Sept 2016.

    • James Hunt - November 2, 2015 4:52 pm

      Hi Susan. Thank you so much for your comments, it’s always nice to hear when others can relate to what we go through too. Choosing a school is tough, and we have a few appointments coming up which will hopefully help us make a decision. Where abouts do you live? Are there many options for Zach? It really is an emotional rollercoaster, for so many reasons, but hopefully at the end of it you the right choice will be clear. I think you just have to go with what your gut tells you, and believe that is the right decision for your child. Even when we have tough times at the moment I know it was right to keep Tommy at home this year. I’m sure when the time comes to decide you’ll know what’s best for Zach right now. Good luck, let me know what decision you make 🙂

      • Susan - February 3, 2016 12:48 pm

        Hi James, I did reply a few months back but have just seen that it didn’t post! I’ve just read about your recent school visit experience and am appalled. I had a very similar experience at our local mainstream school in December and left the building shocked and upset having been ‘shut down’ by the headmistress in front of all the other parents on the tour. My neighbour (and friend) happened to be on the tour also and was disgusted at the response to my questions special needs questions. I’m more shocked at your experience though, with it being a special school – aren’t they supposed to be inclusive and meet the needs of every child?! But like you say, it’s not the right school for Tommy and they quite clearly don’t deserve to have him. Once the dust has settled, I’ve got Zach’s EHC plan finalised, and secured a school, I shall be writing to the council about my experience, and I hope the headmistress feels shocked and upset upon hearing my feedback!

        We’re in the LB Bromley (in Kent) and are lucky really with the support and specialist provision – we have options. Like Tommy, Zach will be entitled to full 121 at mainstream, but we came to the same conclusion as you, and have decided upon specialist. Having visited 17 (yes, 17!) schools in the area – a mixture of mainstream, special units and special schools, we have fallen in love with an autistic specific school just round the corner. We were overwhelmed by the love, care and attention they give their pupils, and the commitment to helping every child reach their full potential. Nothing was hidden on the tour, we saw every lesson that was going on and left with all our questions answered confidently. Every member of staff we came across; headmaster, cook, receptionist, teaching assistant stopped to talk to us about the school and Zach. I know our boy will love it there and he will feel safe, happy and want to learn. If we don’t get a place I’ll be heartbroken! I hope you find a school for Tommy where you feel the same, you all deserve it. Wishing you lots of good luck in your search.

        • James Hunt - December 7, 2016 10:43 am

          Hi Susan. For some reason, I’ve only just found your comment, hidden in a pending folder!!
          So, I’m sorry for taking so long to reply. What you experienced with Zach and the school you chose is exactly why we chose the school that Jude goes to, and we eventually decided to send Tommy there too. 3 months in, things are going pretty well so far, and they both seem very settled this year. I hope school is still proving to be such a positive experience for Zach?

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