The Highs and Lows of a Year in Mainstream School (Part Two)

It would be easy to conclude, in the face of all the traumas, meltdowns and difficulties, that my son’s first year at school had been less than successful. This is the child who tries to escape from the classroom because he wants to play outside, despite the raging storm, then throws a major tantrum as he is physically restrained. The child who has taken to screaming, “I’m changing the rules!” when it is suggested he follows them. The child who molests his classmates out of curiosity. Not exactly ‘Star of the Week’ material, is he?

Looking around the room at my son’s annual review meeting, I couldn’t help but think, ‘how much salaried money is sat around this table?’ How can a four-year old generate such a mini-industry of educators and health professionals around himself? How many people does it take to educate one child? Is he really such a handful, such a needy case? Despite the room being packed full of people, we still found time for some awkward silences before we began. I can see how some parents would find these meetings terribly intimidating. Even with our backgrounds in education, my wife and I still feel tense beforehand. Whether I like it or not, these sorts of meetings are a permanent reality of my son’s school years. The brief parent’s evening appointment and end of year report will not suffice. Only the assembled autism task-force can tackle my son’s needs. Despite this, the meeting was, from all points of view, a resounding success.

As expected, there was a great deal of progress to report. Without losing sight of the fact that my son has a full-time TA, it’s very gratifying to know that he has been able to participate so fully in pretty much everything this year. He is socialising, or showing interest in socialising, more and more with his peers. He was involved in class assemblies, harvest festivals and sporting events. His attention span and ability to sit has improved, he is self-confident and he is learning well. Really well in some cases- his spelling and numeracy levels on the Early Year’s Framework are at the highest level. Of course, in other areas (personal and social development) he scores very low for his age. That’s pretty typical of my boy- no middle ground for B, he’s one extreme or the other! But mostly, he’s a superstar. We’re so proud of his achievements this year.

Sitting there in the meeting, it struck me how far we’ve come as parents in a short time. Just a few short months ago we struggled through a similar meeting, listening to a similar litany of my son’s inabilities and struggles. Each failure to fit in or reported meltdown was a dagger through the heart. We took it as a failure of our parenting and, if I’m honest, a failure of our child. This was not part of the plan when we had kids. This was something that happened to other people, not to us. Not our boy.

Now though, things are different. We’re different. Along with all the positives were plenty of negatives, like SALT’s assessment of his zero-attention span, or the class teacher’s tales of his quick temper. But this time, we did not let these reports get us down. We still don’t like hearing them, but I think our sense of perspective is getting better. We’re more able to see the whole picture, which is one of progress, than focussing on particular details. This change has happened quickly, and it has happened out of necessity. I’ve spent far too long feeling sorry for myself, silently seething at the injustice of it all and taking each setback to heart.

It takes other people to help you see the progress that is being made. I think parents are the worse placed people for being able to see how far a child has come on. We’re too busy dealing with the day to day details of family life to take a step back and say, “look how far he’s come”.  I also think, and perhaps this is just me, that we see negatives too easily, whilst taking the positives for granted. It’s up to the grandparents or neighbours to marvel at how much his speech has come on in just two weeks, or to remind you that his skills really are amazing and special. I said to my wife recently that we must not forget to enjoy our children’s childhoods, because for all the problems, this is a priceless and treasurable time in all our lives.

For a long time I questioned how accurate my son’s diagnosis of ‘high functioning autism’ was. How could a condition that so obviously set him apart and caused such delays in his development be high functioning? At the age of three and a half, when his communication was so limited, it was difficult to see how my son could ever function in the world, let alone to a high level. What the paediatrician had, of course, was perspective. Her words still ring in my ear- “This child will be alright.” I feared she was wrong but now realise how, having seen many other children like my son, she knew what she was talking about. Recently on Twitter someone wrote, “For those of you who think I’m “high functioning”, or less autistic than others, all I can say is, you should have known me when I was 4.” I’m not entirely sure of the writer’s intention, but I take this as a sign that in adulthood comes the ability to find your place in the world and to function. I think my son is heading in this direction.

One of the reasons I starting writing this blog was the hope that parents who found themselves in our shoes might read it and maybe even find it helpful. Most importantly, I wanted them to know they were not alone. For the families of those on the spectrum, autism can be very isolating. I know we felt very lost and alone in those first months. Perhaps by reading of our experiences, warts and all, it would help them through theirs. I’ve tried to be honest about the difficulties and the pain, the frustration and the battles. I’ve said it before, but I could not find the books that reflected what I was feeling, hence the blog.

Now though, one year on, I have a different message. And the message is that, however difficult you’re finding it now, it does get better. The lows will still be pretty low and the problems don’t go away (they just become different problems) but, I promise you, things will improve.

I truly believe that, because it’s happened to me.

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12 Responses to The Highs and Lows of a Year in Mainstream School (Part Two)

  1. Louise says:

    Thanks for this post, I too forget how far my son has come along and it is so important to sit back and remember that sometimes. He has his first play date tomorrow, 6 months even 3 months ago I would have never thought that possible, even when the nursery told me he had a friend I wouldnt believe it until I saw it with my own eyes. I have underestimated my son too often but our kids can acheive so much, I’m beginning to believe that now.

  2. Emily says:

    I truly thank you for this post (and all of them). Our sons are about the same age, and reading about all of your family’s ups and downs have helped me to cope with our son’s diagnosis of autism. I work with deaf children and my husband is a child psychologist. Even so, this is so overwhelming and devastating. Our son is still mostly nonverbal, and self-stims a lot. We never thought this would be our reality ( we have a “normal” 7-year old). I am not at the hopeful phase at this point, but your post gives me hope…and I really need it. Thank you so much again for sharing.

  3. Yay! It’s nice to read something so positive. Glad to hear it’s all good fr you right now, adn I’m sure you’ve given hope to a lot of others. The rollercoaster never stops, bt it’s true the peaks get flatter for longer :0

  4. Deanna says:

    I just recently had a grandson who was diagnosed as autistic and came across your blog. I want to say thank you, you have made me laugh and made me cry. It’s as if you have read my thoughts or peeked through our door. We have experienced the scrutiny of others as our grandchild has had yet another meltdown, we have smiled, as we endured another parent giving us tips, since we obviously haven’t been as successful in our parenting skills as they have been. You give us hope and I thank you!

  5. B's Dad says:

    These are such kind comments. Thank you all so much. It’s easy to get bogged down in the day to day and forget how well our kids are doing, often against the odds. And, of course, how well you are doing as parents. Stay strong, everyone.

  6. I did read this earlier, but it must have been on my phone, which is why i didn’t comment, but fab. this is great and so lovely to read. Steph is right about the rollercoaster, there are always little things and sometimes some big things, but if you’ve got the right support and consistancy then I’m sure things will continue to improve. In the meantime have a lovely summer and you can start Reception on a positive note. – I have some understanding of how you feel because that is how we are feeling about High School at the moment, so fingers crossed it works all round :-)

  7. jo says:

    I’ve been through a similar meeting recently, reading this was like looking in a mirror, thank you x

  8. jennylynndotcom says:

    Thank you so much for all of your posts. We are just starting on our journey, and I have found your blog incredibly helpful. I wish your family all the best.

  9. Sarah says:

    My son is starting mainstream in September and I have been awfully worried about how he would cope. Your blog has made me feel a whole lot better. Thank you, your candid writing writing has made me laugh and cry!

  10. Linseyfilby@btinternet.com says:

    Wow, I felt like I was reading my own diary when I read your post. My daughter is 6, high functioning autism. After a reception year of dual schooling between a specialist school and mainstream, she is now in full time at main stream and what a time we’ve had… Originally the main stream school thought that just by allowing our daughter through the door was “inclusive” enough, she would pretty much be out of class 1:1 with her TA the majority of the time, might have pinned a big note to her, I have special Needs.. After many discussions and us giving simple suggestions ( the school senco has zero interest or ideas ) this has changed, as you say give a child the right environment and they will flourish. Finally they are listening to what my child “can do” rather than focus on what she can’t, I feel like I am a constant pain to the head teacher but surely simple things like written schedules aren’t too much to ask for ( she does have a statement and the school receive a substantial financial subsidy for her attending ).. We too have had to sit through assemblies, sports days dreading what is to come however Our girl loves school, she Is happy ( most of the time ), and at the moment she does not think she is any different to her peers, she thinks her permanent minder, her TA, is because she is lucky.. We’ve had the odd comment from children and parents but for the most part everyone is accepting of our daughter and her quirky ways.. We are about to embark on Nativity preparations, will she understand it all??? Will she request to dress up as a tomato???? We can only begin to imagaine but one things for sure, we will cry with pride but I’m certain she won’t be Mary lol xx

    • B's Dad says:

      Ah yes, very similar experiences.I love your daughter’s attitude to her T.A. Very sweet. I also like the phrase ‘minder’ which I’ve used at school myself (I’m a teacher) and got told off for! Thanks for sharing.

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