Wednesday, 22 May 2013

Not So Great Expectations


My son will never talk. He will never walk. I doubt he'll make it as far as crawling effectively. And I'm OK with that. I think. Most of the time.

There was at time I longed for him to speak (part of me still does), times I hoped and prayed he'd sit and crawl and walk. I remember in the early days being told that the greater input children had when they were very young, the more progress they were likely to make. The pressure was on me; the more I pushed him, the more he would achieve.  

Is it wine o'clock yet?
I made a timetable; honest-to-God an actual timetable. There are lots of therapies for a child like H; and to fit them in (especially with an excited toddler to contend with too) a timetable was necessary.  Time in the standing frame, working on visual skills in the dark den and 'baby gym' with action songs could all involve Cheeky, but certain therapies, like Tac-Pac (a sensory stimulation programme to music) and intensive interaction (does exactly what it says on the tin) could only be carried out when Cheeky was at nursery.  Any time deviating from said timetable caused tremendous amounts of guilt and I would mentally calculate the hours owed to different therapies. Appointments and illness were the biggest barriers to us achieving the goals I had set (on a wonderfully colour coded excel spreadsheet), but the greatest guilt weighed down on me the times I was too exhausted to cope with more therapy. I figured that since I had given up work to be Little H's full time carer, this was my job and I should treat it as such. But I didn't timetable in lunch breaks, or free periods, or teacher training days. Hell, there wasn't even a start and finish time, because even when the timetable ended, he still needed feeding and changing and bathing and putting to bed. It was a 24 hour job.  

One day, whilst doing Tac-Pac at the appointed timetabled time (after lunch, while Cheeky was at nursery), Little H had a seizure. It was a pretty big one: a mouth-to-mouth requiring, Midazolam requiring, pretty blue in the face, not-breathing one. And I cried. Not really because I'd had to resuscitate my child (again) but because it had interfered with my timetable! Well, not really- but not far off!  I was frustrated because I NEEDED to make sure that all these therapies were carried out so H could develop to his full potential, but he kept getting ill or having seizures and everything would have to go on the back burner. How could I *make* him progress if he was too poorly to handle it?

Now, you might well be thinking 'for Christ's sake, give the boy a break' and if you are- you're right! But you're unlikely to be the parent of a disabled child. They'll be the ones nodding along, recognising the guilt and the pressure to just do that little bit more to get their child to sit or stand or eat; those simple milestones (and all the teeny, tiny, almost unidentifiable steps in between) that come so easily to neurotypical kids, take hours and hours of work and practice from us and our kids.  And every minute missed, every moment not spent working towards those goals, sees the chance of them achieving them slip further and further away. It would send you mad!

I'm not sure when my epiphany moment came, but at some point I realised it was all a bit futile. Probably around the time of my endless-crying-cant-cope-with-all-this-any-more stage which coincided with H's repeated visits to the High Dependency Unit and his knack for stopping breathing at any given time of day or night. Sitting and standing and talking really didn't seem that important any more. Just being alive was all that mattered.

Little H has thankfully got steadily healthier but my positive mental attitude has remained the 
A standing frame can make
a handy shelf/filing cabinet.
same. I'd love him to be able to talk and walk but the truth is he is a profoundly disabled little boy and the chances of that happening are pretty slim. More important to me is that he is happy and that I can look back, if and when the unthinkable happens, and say I enjoyed the time we spent together; that I made him happy, that he knew he was loved. So I spend more time cuddling than encouraging rolling; and more time lying on our backs in the garden listening to the birds than strapping him into a standing frame.  I still do the therapies of course, now and then; they're just not the be-all and end-all any more.

Maybe I could and should push him more. But I don't want to. I want to enjoy my son for who he is, not who I hope he should or think he should become. I worry I am selling him short though- that without those aspirations he will not be able to achieve his full potential- a potential a more dedicated mum might be able to reach. If I've already given up on the idea that he'll ever walk then he probably never will. But is that because I'm being realistic or am I holding him back?  I like to think I am realistically hopeful.  I hope one day he will stand but I realise there is every possibility he won't. 

I suspect it is easier to take a step back when your child is as profoundly disabled as H and the gap between him and his peers grows ever wider. If it was within his grasp to achieve such things maybe I'd keep pushing. I haven't given up on him entirely though-that's not what I mean to convey- more that part of me doesn't care as much if he can or can't do these things; he is who he is and as long as he's happy, then I'm happy.

"Make mine a pint!"
Having said that, I'm cautiously optimistic on the 'learning to sit' front. When he's not throwing himself back head first or sliding his bum forward, H is managing very small amounts of time sitting kind-of unaided. With a table in front of him to lean on, he can manage to sit like a big boy! It's a definite step in the right direction and he does seem to enjoy it. He sat last week for nearly a minute on my lap with his arms supporting him on a pub table! Combining physio and alcohol- that's dedication! Who knew therapy could be such fun? So who knows? I won't spend every waking hour forcing the issue but I'm encouraging progress all the same.

Maybe not such great expectations and probably not doing half as much therapy as we should; but being realistically hopeful and cautiously optimistic - well it might not be right for everyone but it seems to work for us.

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This is the first blog hop (of hopefully many) for parents to share their stories and experiences of raising a child with additional needs.

The theme of this blog hop is Therapy. Physiotherapy, speech and language therapy, sensory integration therapy - there are so many different therapies involved with teaching and raising children with disabilities.  Please join in and share your experiences here.