Steve Jobs was an infinitely creative man. I am yet to read his biography but I am not sure, even with his natural ability to use technology in new and innovative ways, that he would have realised just how much his products have helped, and are helping, children with special needs.

We are a dedicated Apple family. Macbooks, iPhones and the brilliant iPad. Collectively, they are our means of work, communication, shopping basket and entertainment centre. With a husband working for Telefonica and a brother who works for the mighty Apple itself, we’re almost evangelical about the stuff. But in the last few months, I’ve started to realise that these little bits of electronic genius have a role to play in our house that I would never have predicted. Orange, it turns out, is a huge Apple fan too (how ridiculous does that sound? I will remind you once again that the boy isn’t actually called Orange…).

It was this post by a friend who has a little boy with a similar condition to Orange, that made me realise just what a wonderful legacy Steve Jobs has left, in ways he probably didn’t predict. It turns out that Orange is not alone. Lots of children, just like him, with developmental delays and learning disabilities of all kinds, are linking in to the digital world and taking leaps and bounds in their development, through using iPads, not just for games and learning but also as a motivational tool to help them with all areas of their development. Freddie, just like Orange, needs to do plenty of supported standing and playing on his tummy to help his gross motor skills. And, just like Orange, he really doesn’t like doing it. But with the help of an iPad to hold his attention, today Freddie played beautifully on his tummy.

Orange needs to spend a LOT of time playing on his tummy, to develop strength in his chest and arms to push up and crawl. Since he learned to roll it has been really hard to keep him on his tummy for long enough. But thanks to Peppa Pig on iTunes, and a willing sister, Orange played on his tummy happily for ages. And even started to get cross that he couldn’t push himself forward to get to the screen. Motivating him to get moving in this way is half the battle in helping him with his development. If he wants to do something, it’s more than likely he’ll give me the chance to help him achieve it. If he doesn’t, it’s soul destroying and physically exhausting for both of us. But look…here he is, on his tummy and loving it. There were a fair few proper belly laughs from the lad during this episode. No doubt Daddy Pig had done something very silly indeed:

For now, I have no doubt that the iPad, in particular, with its touch screen, will help Orange with his visual, hand/eye and intellectual development in many ways we don’t yet know.  But I am also realising now that we have only seen the tip of the iceberg in terms of what technology can help Orange achieve. Who knows, it might be his means of communication one day if he doesn’t learn to talk. Perhaps even a way of earning a living, being creative, finding friends, linking in to the world in ways that children and adults with special needs and learning disabilities have never been able to do before. It’s a game changer.

Breakthrough, of sorts

We have OT, WE HAVE OT! I got the phone call yesterday. A lovely lady by the name of Angela who introduced herself as our Occupational Therapist and will be visiting us at home on 25th June. This certainly feels like something of a breakthrough. We knew Orange would need OT almost a year ago but as with all things medical there is a process, a chain of events that must happen first. I won’t bore you with the detail but his referral didn’t even happen until November.

After the FACTS group debacle I was feeling a little bruised and had lost hope of ever getting any of the support Orange needs beyond physio. In desperation, I rang our Health Visitor and asked for help. Given that she turned up very clearly drunk (that is another post, but I’m still mulling over what to do about that) I was not hopeful of any kind of positive outcome from that particular visit. Perhaps the fact that she was sailing three sheets to the wind allowed me to let my guard of control down and make some firm demands, I don’t know, but she is obviously capable of remembering things and taking action in ways I cannot possibly after one two many vodkas. She’s made things happen for us. Less than a week after her boozy, wafty visit we had the call I’ve been hopping up and down impatiently for.

Occupational Therapy will, I hope, give us the tools (and equipment) we need to help Orange be as functional in his world as he can be.

Now I need to decide what to do about the drunk Health Visitor. I should probably report her, shouldn’t I?

Dealing with the authorities

It occurred to me this morning that Orange is almost 15 months now and clearly has quite complex needs and yet, despite living in a part of the country that is supposed to be well-served by support services, he has nothing but physio.

We have been told that he needs physiotherapy, speech and language therapy (SALT), occupational therapy and Portage (learning through play). He may also need visual and sensory support services. Yet we sit here, seven months after moving to Surrey with nothing but physio. We have done all the right things to try and get him the support he needs and yet none is forthcoming.

Instead, I am his speech and language therapist, occupational therapist and play specialist. The pressure is enormous. I am no expert. All I can do is read, research, ask others in the same situation for advice on things they have done to help their kids. I am guessing, really.

Two months ago, I got a phone call from a lady at Surrey County Council offering us a place at something they call a FACTS group. This is a family therapy session where mums and children with special needs go along, play and have a bit of time with a therapist or two, either occupational or SALT, usually. Great, I thought. Except it just doesn’t really work. Far from being a ‘family’ therapy session, it transpired I couldn’t take The Beep with me. Quite apart from the fact I can’t get childcare on the particular day the FACTS group is held, why should my other child be excluded, cast aside, yet again, in order for her brother to have access to the services that he needs. She puts up with enough hospital visits, therapist visits and general worry. I’m not about to dump her in yet another creche to sit in a room where Orange might get 5 minutes with a therapist, if he’s lucky.

The FACTS group is bogus, really. Set up to look good on paper, but from what I have heard the therapists are there perhaps once or twice a month. What value would we really get out of this?

So I said thanks, but no thanks to the lady on the phone. She seemed quite put out and almost insistent that I find a way of getting to the session. As if it was an obligation, not a choice. Perhaps I’m not the first parent to point out that the service isn’t quite what we were expecting, doesn’t work for our family circumstances and, actually, what is needed is frequent, dedicated OT and SALT for our boy. That’s what we were promised after all.

And that was that. End of conversation. I felt let down, really. And lost at sea, wondering when we might eventually get the proper support we need. But no, Surrey County Council really like to kick people when they’re down, there was a stinging follow up to this little tale. A month later I receive a letter. I open it excitedly hoping it’s news of a referral. It’s not…

‘To the parent or carer of…

This letter is to confirm that you have declined our offer of support via the FACTS group for your son and to let you know that all professionals involved will be informed accordingly’

Hang on a second. You have declined? All professionals will be informed accordingly?

Now excuse me if I’m being a little oversensitive (easily done when you’re worried and exhausted 24/7) but what exactly does this mean? Reading between the lines it sounds very much to me like I am being accused of depriving my son of the services he needs, not that, in fact, you are failing to provide them.

Parents of children with special needs can be very vulnerable, emotionally, and this kind of letter could one day just tip someone over the edge. Me? It reached me on a ‘good’ day, so instead of plunging me into a black hole I just got angry, put it to one side and am now resurrecting it to try and get Orange what he needs.

Sadly, it seems a common theme. I know many parents who have not only had to fight tooth and nail to get what their child needs but then, when offered support, it is lacking or inaccessible somehow. I don’t know why this is but there really needs to be a step change in how local authorities approach supporting vulnerable families and people with disabilities or special needs.

For now, it’s back to Amazon to see what books I can find to help morph myself into a better, all-singing-all-dancing therapist for my son. This will be fine, for a while, but there will come a point when we need proper support services to access equipment that he might need. Really, he needs a bath seat and some kind of supportive sitting and standing equipment. He will probably need a special car seat and or buggy at some point soon. But we can’t get these until he sees an Occupational Therapist. To buy these things would cost thousands and thousands of pounds that we don’t have.

So it’s back to kicking arse with Surrey County Council, requiring energy that (you guessed it), I don’t really have. I know I am not alone in this battle. For every parent out there dealing with the same, or worse, how do we get these people to listen to what we need?

Conquering consonants

This last week has been somewhat of a struggle. I cannot seem to shake this damned virus. I have been coughing and coughing and coughing until I am almost sick. The thought of sitting down to update here has been constantly on my mind but somehow I couldn’t dredge up the mental stamina to open a new blog post, let alone fill it. Really all I have been capable of in the evenings is flicking between email, facebook and twitter, letting the rest of the world fill my head with news, entertainment and general drivel.

In the midst of all this Orange has done something rather wonderful. One morning while sitting in bed cuddling my two bright-eyed morning babies and watching Peppa Pig on my iPhone, Orange turned to look at my face, raised his little eyebrows and said ‘Mama’. If it is possible for a heart to actually melt then this is the moment that mine did. The loveliness of the moment was all the greater because The Beep was there to share it and we were all snuggled up under my duvet watching the sunlight peeping through the trees. Sadly daddy was not there with us, but I know he’s secretly holding out for Orange to say ‘Dada’, so I’m coaching him to say that now instead.

The voice of doubt has been ringing louder in my head though, despite Orange’s New Word. I don’t know why, maybe it’s this virus that’s making me feel more negative than usual. What cuts deep is when The Professionals have their say on Orange’s development. They don’t want to commit either way, so come out with some vagary like ‘well, his use of consonants and good variability of tone are both promising signs that speech might develop’. Note the word ‘might’. So instead of revelling in the joy of my little boy saying ‘Mama’ (and he’s done it again since, by the way), I’m left wondering if it was just a fluke and whether I should even be celebrating it? If Orange didn’t have the difficulties he has, I wouldn’t even doubt new milestones that he hits. But because, week to week, we hear a different story from professional to professional, my confidence in assessing my own son’s capabilities is at an all time low. I doubt myself. I don’t want to seem silly. So I have kept some of his achievements to myself. I think, no, I know that I need to stop doing this.

This post is the first step back to a more positive place where Orange’s achievements are celebrated with pride. And not just outward pride. It’s the inner confidence that I need to work on now. That beaming, sure footed feeling you get when your child does something new. So here’s to Orange. And here’s to words. Bets on for what his next one will be?

Orange and the fish

As sensory experiences go, it doesn’t get a whole lot better than this. After our lunch in the sunshine was rudely interrupted by a sharp rain shower we ran for shelter in the fish emporium at the garden centre. Row after row of exotic little fish swimming this way and that, and that comforting bubbly sound from the tanks. Orange was in heaven.