Starting School

Both my boys will  be starting school in September.  They're not twins - there's 14 months between them ("Irish Twins" - it's called in our family) but Cheeky starts Reception at our local mainstream and Little H will start in the nursery class at our local special school.  Apart from the to-be-expected feelings of anxiety and melancholy of losing both my children to the state education system at once (don't you DARE ask me what I'm going to do with all the spare time - I'm sick of that question already), I'm actually a little excited for them both.  Cheeky is well ready for school, the child was born ready for school, and I expect he will thrive.  Little H is much healthier and has been making good progress in his development so I think he too will gain a lot from the varied experiences he'll get at school.  It has been a strange few weeks though, preparing for that transition.  There have been similarities of course - expensive school uniform for one (although, to be fair H doesn't need to wear one but I think I'd like him to).  However, it's the contrasts between the experiences that have been most striking. 

I chose a school for Cheeky based on the fact it was the closest Roman Catholic school and I'd taught there in the past so knew it well.  We had one visit to the school to look around and then applied through the online form from the local authority. I found out he'd been allocated a place at our preferred school via email in April.  

I rang the council for a list of special schools for Little H when he was just two years old.  Over the coming months I rang them all and asked about the type of children they taught then visited four of the schools most suited to his needs.  He had numerous assessments from local authority professionals (Educational Psychologist, Teacher for the Visually Impaired, Early Years Teacher) and a statement of special educational needs was compiled.  The process took a year. His papers were sent to the school of our choice who agreed they could cater for his complex needs.  I negotiated (with some degree of difficulty as they wanted him full time immediately) that he could start with a part time place and gradually increase it over the year to a full time place for Reception.  

Yesterday I met with the class teacher's at Cheeky's new school.  They provided information about the curriculum - literacy, maths, religious education - and discussed (in rather unnecessary detail, I thought) the school's behaviour policy.  They impressed on us the importance of education, ensuring good punctuality and attendance and the progress our children could be expected to achieve within the year.  We were given an example of the school dinners provided and told to ensure the children's clothes were named and their shoes had velcro on so that they could put them on themselves.

Last week I met with the school nurses at H's school.  We talked about his need for a 1:1 carer to be with him at all times and went through his epilepsy care plan.  The deputy head said (much to my delight) I could pick the days I wanted him to attend based on the lessons I thought he'd get the most from.  I'm planning to send him on the days he has hydrotherapy and time in the interactive-creative room.  There was a chart on the wall detailing the times, rates and volumes of the children's tube feeds.

When asked if we had any questions;

I asked Cheeky's teacher if there were after school clubs and extra curricular activities for the children.

I asked H's which hospital the ambulance took children to in an emergency.

The Sound of Sirens

I had one of those 'moments' today. You know the sort- sick in the pit of your stomach, heart racing,  catch your breath sort of moment. It was nothing really- an ambulance; sirens blaring, lights flashing, whizzed by as I pulled in to get out of its way. H wasn't with me (it was respite time and I'd taken Cheeky to the park) and as I surreptitiously checked my phone wasn't on silent, I was once again filled with The Fear. The Fear that the sirens were coming for my son.

It's a strange sensation that long wait for an ambulance to arrive. Seconds feel like hours and only the calming repetitive questions from the operator stop you screaming in fear. In all honesty, the first time I rang 999 I think all I did was scream, although at some point I must have stipulated 'ambulance'. I do distinctly remember being told to "calm down" and that she "couldn't understand a word I was saying", but it's hard to remember anything as complicated as your address when your baby is blue and lifeless in your arms. I've since heard (on 'helicopter heroes' or 'casualty' or somewhere) that they can get your address from a GPS signal on your mobile phone if needs be, which makes me feel slightly less shit about my incompetence that first time. It also never occurred to me to do mouth-to-mouth that first time either- which you'd think would be obvious- but screaming and crying and shaking him was my preferred method of dealing with a lifeless child until the first time Mr. M witnessed one (boxing day, I believe) and quickly stepped in with CPR. 'A-ha', I thought, 'that looks a bit more pro-active!' And shortly after resuscitation training commenced! 

I suspect, if you met me now or watched me handle H's seizures (we didn't know that's what they were at first) you'd think me brave or strong or perhaps assume I was medically trained. The truth is I had to become this person, to build this shell- in essence my son's life depended on it, on my ability to stay calm, to give mouth to mouth, to ring an ambulance ... 

But that first time ... God that first time ...

There are so many many many times I've thought my son was dying. So many times I've begged and cried and pleaded with God. There have been the dramatic side-of-the-road-giving-mouth-to-mouth-incidents and the more 'controlled' 20-doctors-and-nurses-around-his-hospital-bed-on-a-'crash-call'-with-a-resus-trolley-and-heart-paddles, to the "shit-he's-stopped-breathing"-in-the-middle-of-dinner-at-your-mate's-house kind of events with H. And there's the times that I've woken in the middle of the night or early in the morning, too scared to check-just in case.

The ambulance today brought me back there. Back there to a place I can't bare to be but fear I'll be in the future. He has been so healthy lately, his seizures controlled (touch wood). 

I never want to see inside an ambulance again.

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.