The sun has given up trying to shine, the summer holidays are behind us, and it’s the school’s first fund-raising disco of the new term.  ”I don’t want to go.” says Max.  My heart sinks.  Again.  ”Why not?” I ask casually, pretending it’s no big deal.  Which of course, it isn’t, except it is, to me, because Max has dyspraxia, and I want to him to go to the disco, because I want him to socialise with the other children, and not feel self-conscious about his dancing.  ”My dancing isn’t good and the other children can dance, and I don’t know the moves.”  I promise that I will go along to help out with the disco, and Max is slightly placated.  ”Ok, I will just copy your dance moves then.”

So, I offer my services to the school as a parent volunteer, and Max and I turn up on the night to a crowded gym hall packed full of over-heating, over-excited 5-7 year olds.  The dad doing the disco is great, but I know that already the flashing lights and thumping music are beginning to overload Max’s senses. He stands at the sidelines till the music stops and Disco Dad starts shouting instructions for the party games into a microphone.

A tennis net is set up in the middle of the hall for the children to play beachball volley ball.  ”Girls on this side of the net, boys on the other side.” yells Disco Dad. Within a few seconds the boys and girls have seperated themselves onto the right sides of the net.  Except Max, who is the only boy standing with the girls on their side of the net.  I gently push him over to join the rest of the boys, and silently thank God I came along to help. Offering to help with the disco was of course only an excuse to be here, really it is Max I am here to help.

The volley ball starts, and after a few seconds Max joins in energetically.  The next game involves choosing a partner and sitting down with them on the floor.  I start to feel sick as I watch Max look round anxiously as all his classmates pair off happily, except him, until there are only a few children left without partners.  It takes all my self-control not to go over and press gang another child into being his partner.  Max begins to look as panicked as I am beginning to feel, until another boy, not from his own class, grabs him and they sit down together.  Another quick prayer of thanks.  That particular game descends into chaos, so Disco Dad decides it’s time for Head, Shoulders, Knees and Toes.  I keep a bright smile glued to my face, and my eyes glued to Max, as I watch him manage to put his hands on his head.  And keep them there, despite instructions to move them.  His hands then move onto his shoulders, just as the other children are moving onto their toes.  Eventually he gives up and just sits with his hands on his head.  My smile doesn’t slip for a second. “Wasn’t that fun?”, I chirrup, like some crazed Butlins redcoat.  ”I’d rather play pass the parcel.” he says gravely.

It’s time for a break and the children move into the lunch room for an ice lolly and some crisps.  I watch one table fill up with his classmates, while Max chooses to sit at an almost empty table by himself.  I busy myself helping out, but eventually sit beside him to keep him company.  Neither of us is having much fun.

Back to the gym hall for some more dancing.  The children are all young, so apart from a few of the girls they are all crazy dancers, and Max seems quite happy jumping up and down on the spot.  Things are fine until Disco Dad starts shouting instructions for the children to copy him and his dance routine.  God loves a trier, and Max tries his best, but I can’t help looking to see how the other children are managing, compared to him.  They seem to be managing fine.  Not all of them are of course, but right now I find it hard to compare Max’s abilities to other children’s with any degree of impartiality.  Max starts to look round for me, and insists I stand next to him so he can copy what I do.  I am the only mum on the dance floor dancing to the Birdie Song.

On the way home I wonder how I should handle events like this.  Would it be better to let Max decide if he wants to go or not?  I don’t think so.  He is only six, and it is up to me to make sure he doesn’t begin to gradually exclude himself from things he feels anxious about.  Should I let Max go on his own, while I stay at home?  Would he be fine without me, and does my anxiety, hard as I try to hide it, pass on to him?  But I can’t get the image of his worried little face looking round for me to reassure him, as he struggles to follow a simple game of Head, Shoulders, Knees and Toes.  Well, it’s the Halloween disco next, so I have until October to decide what to do.

“Hey Max, did you enjoy the disco?”, asks my husband when we get home.  ”It was great.” Max replies.  So that’s okay then.

The hardest part had been the phone call two days before.  I called the school and asked for an appointment to speak to Max’s teacher.  ”What is it about?”, the school secretary asked.  ”Er, well to discuss Max.” I replied vaguely.  ”Yes, but to discuss what specifically?”‘ she persisted.  I swallowed.  ”Dyspraxia.”  There, I had said it out loud.  There was a slight pause.  ”Ok, I will call you back.” she said.

A couple of days later I found myself sitting nervously outside the school office – not because it brought back unhappy memories from my time at primary school (I was a very well-behaved child!), but because I still wasn’t sure if I was doing the right thing, and still wasn’t sure how the school would react to the fact that Max has dyspraxia.  And, put this bit down to innocence on my part, but I had with me a very thick folder full of information on dyspraxia, the causes, the symptoms and the treatments – just in case his school had never heard of it.  I know, I know.

I needn’t have worried.  It turned out my meeting was not only with Max’s teacher, but also the deputy headteacher and the special needs teacher.  I thought I would be nervous, but it is amazing how focused and articulate you are when it is your child that is being discussed.  I outlined Max’s problems, our concerns, my conversations with the doctor.  Then the deputy head told me they were already aware that Max was having problems.  In fact, for the last couple of months of summer term they had been giving Max exercises in class to improve his fine motor skills and pencil grip.  Children aren’t officially diagnosed by the school until they are seven, but the school are aware earlier of children who may potentially have problems like dyspraxia, dyslexia or ADD.  And Max isn’t the only child in his school to have dyspraxia.

The special needs teacher, a wonderful, calm and experienced woman who has studied with Dr Madeleine Portwood will draw up a series of physical exercises for Max to do three times per week with a small group of  children from his class.  The playground assistants will be made aware of Max’s condition and try to organise games at playtime that Max can take part in, and make sure he is not being excluded.  They will also ask one of the older children to keep a discreet eye on him.  His teacher will make allowances if he takes a little longer to get changed before and after gym, and will make sure he hears all her instructions in class.  Right now, I don’t think I can ask for more from his school.  I feel enormously grateful that they were already aware he was struggling, and are so ready to work with us together to help Max.

I have to keep in touch to discuss Max, and what we can do to help him.  I left the school feeling happier and more positive than I have done for ages, and so relieved that talking to his school was absolutely the right thing to do.

I took a few very deep breaths and phoned Max’s school and have made an appointment to see his teacher.  Can I have some help about points I should make and questions I should ask?

I bought a book on helpful exercises to do at home with my child. I bought another book, aimed at teachers, and tried to come up with a plan on how I could help him at home with his school work.  Then I put the books away and faced up to reality.  By telling no-one else that Max was dyspraxic, we were actually doing far more to hinder him than help him.  Unequivocally, the best thing you can do for your child with dyspraxia is seek as much help as you can – as soon as you can.

Which is why I found myself in my doctor’s surgery, talking to her about dyspraxia.  I worried she might dismiss me as an over-anxious mother, fretting needlessly about her child.  I worried she would tell me to go away and come back in a few months if I was still concerned.  I even worried she might not know much about dyspraxia.  I needn’t have worried.  I calmly and in some detail, told her of my concerns about Max.  Many of them weren’t new to her – it wasn’t the first time I had been here to discuss a concern about him.  It was the first time dyspraxia was mentioned though.  She agreed I was right to be concerned and that same day sent a letter of referral for him to the Community Health Team.  This team comprises of a doctor, occupational therapist and physiotherapist who will assess Max, and come up with a care plan to help him.

The downside is that the waiting list is long.  The referral was made several weeks ago, and we are still waiting to hear when the appointment for our initial assessment will be.

So, while we are waiting, the next step is to talk to Max’s school.

Maybe it’s because Max arrived early. Maybe it’s because labour lasted 19 hours, I had an epidural, the baby was in distress then delivery was assisted.  Or maybe we will just never know for sure why six years after Max’s long and difficult entry into the world I am now sitting in my doctor’s surgery discussing Max.  And dyspraxia.  My appointment, the latest in a long series of appointments about Max, is the first one where the word dyspraxia has been mentioned.  But it’s not the first time dyspraxia has been mentioned between my husband and me.  For a while now we have known that ‘something’ was not quite right with Max, but trying to put our finger on what that ‘something’ was, was proving difficult.

Then, spending yet another night wandering aimlessly around the internet I came across dyspraxia.  It was a condition I had never heard of before, but one I recognised immediately.  Or perhaps that is the wrong way round – it was a condition I had never heard of before, but I recognised Max immediately.  And I will always remember the sick feeling in the pit of my stomach which grew stronger and stronger, as I read through the list of symptoms which read like a personalised account of every stage of my little boy’s life so far.  In fact I felt so sick with recognition and dread I had to switch off the computer and refused to even let myself think about dyspraxia for the next few days.  And then, when  I couldn’t stay away for a second longer, I spent every spare hour I could, obsessively reading everything I could find about dyspraxia, no matter how obscure the detail, I had to know all of it. Then I had to go back and re- read it all again.  And again.

There was no doubt in my mind that the ‘something’ about Max was dyspraxia.  I started to tentatively mention it to my husband.  ”No, no”, he would say, “I was over-sensitive and highly strung when I was a child.  He’s just like me at that age that’s all.”  ”But we know there’s more to it than that, don’t we?” I would gently counter.  I was desperate for him to agree with me that Max had dyspraxia, to be as sure about it as I was.  I needed him to be on my side, to feel that we were going to tackle this together.  ”I was rubbish at sports too, when I was at school, I never got picked for anyone’s team.” “Yes”, I would agree, “but can I just read this list of symptoms to you and then see what you think.”

My mother’s instinct versus his paternal pride was a short-lived battle.  He hated the thought that there was anything ‘officially’ wrong with Max.  I hated the thought that Max and I were going to have to tackle this on our own.  After a few more skirmishes he finally surrendered.  He quietly listened while I read out my latest discoveries about dyspraxia, then he would go off and quietly read more himself.  He agreed grudgingly, and then sadly that, yes, there was in fact no question in either of our minds – our beautiful, funny, clever, sad, anxious, little boy, who seemed to trip and fall over a lot, and didn’t have many friends was dyspraxic.

Now, where to go from here?