If you gave me a pound for every appointment I’ve attended for Hannah since her birth, I’d probably be able to afford that house I’ve got my eye on in Cornwall.
I kid you not!
(Don’t worry, that’s the last time I’ll mention Cornwall in this post…possibly)
…and I bet that goes for most, if not all, parents of children with additional needs.
(I mean attending appointments, not buying houses in Cornwall)
Over the years, we’ve seen, or continue to see: cleft team people, special dentist people x 3!, Occupational Therapist people, physio people, portage people, orthotics people, heart people, consultant orthopaedic surgeon people, wheelchair people, eye people, paediatrician people, blood people, genetics people, dietician people. ear people, community nursing people, speech (or not!) people, the list goes on and on and on and….okay, I’ll stop now. I’m sure you get my drift and if you got fed up reading a portion of the list of ‘people’, then just imagine what it’s like co-ordinating and attending said appointments!
I KNOW!!! #exhausting!
Appointments, meetings and whatnot, don’t ordinarily faze me. But it necessitates I switch my ‘mummy head’ off for a while and transfer to ‘professional head’; detach (as much as I can), get on with the task in hand i.e. liaise with other professionals, ascertaining the best way forward, to ensure that Hannah’s needs are best met…or try, at least.
I’ve learned over the years that if ‘mummy head’ stays switched on, I’m at risk of being unable to focus properly (or at all!)…and, perhaps, get a bit emosh – dependent on the ‘theme’ of the appointment or how frustrating things may get.
…and that just won’t do.
Now don’t get me wrong, there’s nothing wrong at all in being emotional. After all, it’s part of being human, isn’t it? but if you’re at risk of those emotions becoming all-consuming, then, perhaps, it’s best to have a chat with someone – someone who can actually provide an informed, professional diagnosis and help you get treatment if necessary – and not one of those amateur mental health ‘experts’ – like ill-informed people you know who’re keen to signpost you to a doctor…just because you have a weep every now and again *rolls eyes*
Anyway, during most of Hannah’s appointments, it’s vital that I stay focused. But sometimes it’s not that easy – in the early years there were many occasions where I got a bit teary…for a variety of reasons.
Most days, like most parents, I feel hardly able to string a sentence together and just lollop about like a zombie (an exhausted zombie, I hasten to add!). And if you ever meet me, you may assume I’m a bit aloof. I’m not, not at all. I’ve just become socially inept, can’t make small talk…and am still a little bit shy, sometimes.
But when it comes to ensuring Hannah’s needs are met, I can talk the hind legs off a donkey*, rattle off HUMONGOUS words rather articulately *raises right eyebrow in a totally bragging way* and engage in medical discourse better than an actor on Greys Anatomy (Confession: I’ve never watched a single episode of that, so I hope they do actually talk about health stuff on there!).
* Btw, with reference to the donkey stuff, the internet says that this is a literal translation of the Gaelic (apparently) which actually means “making a donkey sit down on its rear end”. So when someone can ‘talk the hind legs off a donkey’, they may talk so much, they can do extraordinary things…or, my interpretation being they just talk a lot!
(I’m not suggesting that the people I communicate with are donkeys. Well, erm, not many)
So, where am I going with this?
Well, I recently attended a health appointment – regarding Hannah, but without her (if that makes sense). I was advised the appointment would take around an hour as this was an assessment to ascertain whether Hannah was eligible for a service. The outcome being that she was….yay!…more people to see! More appointments to juggle! More ‘monitoring’ rather than useful intervention (perhaps). Oh what joy!
Anyway, during this appointment I was asked to describe Hannah’s needs; from sleeping, eating, communication, continence, dressing…blah, blah, blah…the whole kit and caboodle. It was very thorough! And over the years it’s got a little easier to talk about what Hannah struggles with, whilst leaving the mummy emotions out of it and not feeling like a complete failure (I used to feel like a failure ALL of the time…even though my rational head kept reminding me that I wasn’t. At all).
This appointment most definitely required ‘mummy head’ to come off for a bit!
About an hour and a half later (whoopsy!) we were coming to an end, when the person completing the assessment advised that she always liked to end by discussing the child.
I gave her a quizzical look…I thought we’d been discussing Hannah for the last 90 minutes! Had she not been listening?
…then…PING!…lightbulb moment. I knew what was coming.
“Tell me about Hannah” she said
(Oh, crikey!…this is not good! Emotional “mummy head” is at risk of sneaking itself back on without my permission….this just won’t do!)
(coughs to clear throat, but not as much as Theresa May at the recent Tory party conference!)
(Smiles. voice wobbles)
“She’s got a zest for life I’ve never known in anyone else…”
(Oh God, I’m going…)
(Oh no! oh no! NOOOOOOOOOOOOOOOOO!!!! the eyes are tingling, one side of the mouth is quivering a bit…don’t…don’t, don’t do it, you plonker…pull yourself together woman!)
Pauses for composure.
Oh, sodding hell! That’s gone and done it! I now have something in my eye…something a bit watery! Maybe my tear ducts are just perspiring…it is a bit warm in here.
Silence in the room.
I doubt I could’ve said any more.
A comforting, understanding smile was given.
The meeting ended shortly after.
Now, when not caught off guard – like when I blog, for instance…hiding behind a computer screen – I can shout from the roof tops (not literally though, not on Broccoli HQ’s roof!) about how wonderful I think Hannah is. How precious she is. How I’ll love her to eternity. How she’s enriched my life more than I could’ve EVER imagined or could articulate. How she grasps life by the throat and gives it a good shake. How utterly, utterly bonkers she is sometimes…which makes me laugh…and scared in equal measures! How she can light up a room with her smile. How I’d give my life to protect her.
…but it’s much harder for me to say these things to a total stranger, in person.
I think maybe, when working with children with additional needs, and no matter what career path you’re on, you can easily lose sight of the person. The child. THE most important thing (for want of a better word) in your intervention (and, let’s face it, what’s keeping you in a job!).
Often, in order to find a way forward, the emphasis is pretty much always on what a child CAN’T do and many medical assessments overlook who the child IS and what their strengths are. WHO they ARE. Because their disability (or disabilities – plural – as in Hannah’s case) don’t define who they intrinsically ARE. They’re just a part of them.
My child is not a medical diagnosis. She’s not Cornelia de Lange syndrome. She’s not Autism. She’s not a cleft palate. She’s not a profound and multiple learning disability. She’s not fixed flexion contractures or a bilateral superior vena cava (ooh, hark at me with the words!) she’s not all the other labels she’s been given over the years.
So, whilst it came as a bit of a surprise to have been asked about Hannah…the child…MY child…it was also extremely welcome and quite refreshing!
Good on you, lady professional…like a breath of fresh air, you were!
I think I’d better take tissues at the next appointment though. You know, just in case it’s a bit warm in there!
So I guess that’s all for now my lovelies.
Until next time and thanks, as always, for stopping by.