Letting Billy Go…

We knew the day would come, and it finally did. The day Billy started his new school, weekly boarding in Sussex. We had thought long and hard about him going; it was never our intention to board any of our children.

Where we live, in the London borough of Richmond-upon-Thames, there are no schools to suit Billy’s needs. They are either too high functioning (mainstream schools which we tried and which were a disaster) or are for more severe autism. As explained in earlier issues of The Autism File, the new school at Hassocks was perfect for Billy with its mix of one-to-one learning with dietary and nutritional support, too. It is a new development model: “Whole Health Learning” is the program that Billy will follow.

So, Jon and I headed off on Tuesday, April 21st with Billy singing in the back of the car. When we arrived at the school, Billy was so excited. He took me to his room (Jon and Billy had been down the day before to arrange his things); he immediately played on his Xbox and seemed perfectly happy. Then it was time to say goodbye.

I said, “Mummy and Daddy are going now; we will see you on Friday.”

Billy said, “I might give everything a rest now”. . .Billy’s way of saying he can’t cope. He got into bed and pulled the covers close around him (remember it’s 9.30 am). I stroked his beautiful hair and told him how much we loved him.

He looked at me and said, “I love you, too, Mum.”

So, as tough as I tried to be, I bit my lip, gave him a kiss, and walked out of the door, leaving Jon to say his own goodbyes. I saw the matron as I left and tried to say, “Look after him”. . .but I couldn’t speak. I made it to the car and cried.

I was totally unprepared for such an overwhelming feeling of sadness. . . emptiness. Jon joined me shortly after, he started the car, and we headed down the long drive. Halfway down he pulled over, put his hands in his head and cried, too. We both felt so utterly desperate. This isn’t what we had planned for our beautiful baby nearly 13 years ago, but because he has autism, our lives have changed dramatically—not just ours but Bella’s, Toby’s, our extended family’s, and our friends’ lives, too.

Billy is going to board at this lovely new school because he has autism, and it’s the very best we can do to get him the essential help and support he needs to develop into the young man he will soon become.

We know this school can give him everything he needs, but it still doesn’t take away the unbearable feeling of guilt, loss, sadness, and emptiness we felt as we drove away for the first time when we left our child at a residential school.

That same day Paul Shattock and Rosemary Kessick rang. They are two people who have done so much for autism in the UK—both were our only sources of help with Billy in the early years, and they continue to be our inspiration in all that we do with our autism work. They both separately told me that all parents—including themselves—do what we consider to be the best, even though sometimes they are hard decisions, for our children with autism. I was reassured by the people at his school, by Paul, and by Rosemary that we would see the benefits. . .
and more importantly, so would Billy.

This, to me, is another example of how autism completely breaks my heart.

By Wednesday, we had a call from the school. Billy was missing us and getting upset. We arranged a call with him later that day. Toby (Billy’s younger brother whom he adores), Jon, and I huddled around the phone. The conversation went like this:

“I don’t like staff teachers, do you, Toby?” said Billy.

“I like them, Bill,” said Toby (thinking this would be the right thing to say).

“No, Toby, staff teachers are bad. . . ”

“OK, staff teachers are bad,” said Toby . . .(Billy now giggles hysterically).

“Can I come home now?” asked Billy.

That was a hard moment. . .

So, it turns out that Billy is enjoying the evening and nighttime but not the day. Why? Because Billy hates being told to do anything, and school life is like that. The reason why Billy thinks staff teachers are bad is because they tell him what to do . . .by that I mean fire drills, rules of the school, etc. This has always been Billy’s biggest issue. . .that and certain speech aspects.

Then, I think, why Billy is like this? First of all, Bella is the same; she would, if she could, be exactly the same. . .that’s her character. But because she is not autistic, she hasn’t been allowed to “get away” with it. (Although some might say that’s debatable!)

All Billy’s life he has, to a certain element, “gotten away with it” because he has autism. Even now, some people who know Billy well don’t want to upset him in case they appear to be “being unkind to a child with autism.” That’s all very well and quite right, too, but now we have a child on our hands who fundamentally is spoiled. That’s what we would call any other child who behaved like Billy.

It’s not surprising really. Jon and I are the biggest culprits here. When he first started talking, he quickly worked out that the more he spoke the more he got. . .and he got everything he wanted. I remember Toby asking for a toy car once, and we said, “No.” He had loads of them, but we had to set boundaries somewhere. Toby then asked why Billy got everything he asked for? Well, basically because he has autism, and we wanted communication, speech. . .everything we could get at whatever cost. But somewhere along the line, I have a horrible feeling that we have spoiled our little boy.

Many of you will be horrified by that statement. Billy has autism, and you do what you do to get through. I remember Stephen Shore, Ros Blackburn, and so many others who have ASD telling me in each interview that I did with them that they are where they are because their parents wouldn’t accept autism as an excuse for bad behavior. That, they say, has helped them enormously.

So where am I on this?

Billy is a child with autism, man-made in my opinion, but that’s another story. He has exceeded all of our expectations because I never thought I would hear my little boy speak. . .and for that alone I am so grateful. Billy reads, he writes, and he does his own thing in his own happy way. Billy is superb, and he is an example of how children who have autism can improve their lives beyond belief if the right interventions are undertaken at the right time. But what if I had done what other parents had with their child? Instead of being so grateful for what we have. . .what if I hadn’t spoiled him along the way?  Would he find life easier now? Would he respect staff teachers and still be happy? Who knows? But what I do know as I write this is that Billy is about to become a teenager. He wants batteries for his birthday. . . .any kind, but lots of them! A friend said to me recently on hearing this, “That’s OK,” but I could tell in his voice that he felt sorry for me. . .it’s not right that a soon-to-be 13 year old asks for only batteries. What other 13-year-old boy would? But this good friend hasn’t a child with autism; he has no idea how lucky I am to hear my child understand and answer my question about what he wanted for his birthday. So, my friend, you are right, it is OK. . .actually it’s more than OK, and I will break the bank to line up his wrapped up batteries.

Why? Because thousands of parents would give so much to hear what I did. My little boy with autism has come a long way, such a long, long way, and he can now tell me what he wants.

Is he spoiled? Maybe. . .but autism comes with so many issues.

I am so proud of what I have.