Embracing Limits?

I wonder why it’s OK for me to point out my children’s limitations but not the ways they excel?

When I tell people that my son, J is autistic, or that my daughter, L, is tiny for her age and was very slow to start walking, this is OK.  It’s allowed.  The usual response is for the listener to then try to make me feel better (about something that didn’t actually make me feel bad in the first place) by saying you’d never know there was anything “wrong” with J; that L knows the best things come in small packages.  This conversation is socially acceptable – no-one is left feeling threatened by my children’s supposed shortcomings, and the other person can be happy they have done a Good Thing by telling me I don’t need to worry.

However, my children are both also exceptional in their abilities.  J can identify 15 different shapes and can tell you the difference between a pentagon, hexagon and octagon.  He flummoxed his cousin when he asked her to draw a rhombus.  He recognises all numbers and letters, and can name every planet in the solar system.  He is obsessed with shop signs and logos and recognises dozens, if not hundreds of them.  A drive down the High Street is J’s perfect trip out: “I see McDonalds, I see B&Q, I see Sainsbury’s, I see Pizza Hut …” is the running commentary from the back seat.  How people react to me telling them this depends on the context in which I present it.  Am I telling them one of J’s autistic traits, or am I telling them my son is gifted and highly intelligent?  The former is acceptable.  The latter seems to make others, especially other parents, feel uncomfortable.*

But it seems to be with L that I am most expected to stay quiet about her incredible gifts.  She has absolutely extraordinary conversational abilities.  Her vocabulary is outstanding, and she sounds more like a 6-year-old than a 3-year-old in her sentence structure and topics of conversation.  And sometimes it’s more like talking to an 80-year-old!  The other day she proudly told me she’d done a wee on her potty: “… and I didn’t even need to hold your hand, even though I was a bit anxious.  Do you think Daddy will be proud of me?”  She has a sophisticated and mature sense-of-humour, has an interest in what is happening in the world around her, and asks insightful and thought-provoking questions.  In fact she meets most of the criteria on Mensa’s “gifted child checklist” (http://www.mensa.org.uk/cgi-bin/item.cgi?id=525)

Just as I am concerned about J’s needs being met when he starts school, I am equally concerned about L.  I want her to be stretched and challenged and supported to be the best she can be.  I am worried that she may struggle socially as children her own age baffle her when they do not reply to her complex conversation.  But mostly I stay quiet about this.  I know that when, on occasion, I have broached the subject, the unspoken reaction has usually been “Pushy parent.  Jewish mother.  Biased.”  I’ve even had to restrain myself from typing apologies and justifications for the way I have spoken about L here.*

Why is it seen as simply stating facts for me to point out my children’s limitations, but bragging for me to explain the ways they excel?  And isn’t this utterly representative of a much wider picture?  Too often we’re too quick to point out our own failings and those of others.  We get so caught up in our limitations that they become all we see.  So many of us struggle to know how to accept a compliment.

I once taught a group of teenagers and asked them to write their name at the top of a sheet of paper, followed by three things they liked about themselves.  They then passed the papers around and had to each write something they liked about the person named at the top.  They got their own papers back, complete with a list of compliments written underneath.  The experience was a revelation for some of them.  They had never had their strengths pointed out by their peers and I could see them visibly growing with pride and pleasure.  Even more telling was the difficulty many of them had in writing the things they liked about themselves – some simply could not think of three things.  If I’d asked them to write three things they disliked, I have a feeling it would have been a different story.

It’s indisputable that we need to accept our own and others’ limits, and be kind and tolerant and supportive of them.  But we also need to embrace our strengths.  Encourage your friends to talk about the great things they, and their children can do.  My children are an example of the limits and strengths within all of us.  It isn’t until we accept, and yes, embrace, both ends of the scale that we can be truly happy.

 

* I would like to point out that I also have many wonderful friends, who are parents themselves, and who accept J & L for who they are, gifts and talents included!

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Invis-ability

My condition (CVID) is disabling.

I have a disability.

I am disabled.

Why is there such a stigma around saying this?  “Disabled” isn’t a dirty word, and it isn’t an insult, it’s just a fact.  My ability to do some things has been reduced, therefore I am dis-abled.  I have some official recognition of this fact – I receive Disability Living Allowance and used to have a blue parking badge.

For the first few years after my diagnosis (and for many years before) I was obsessed with proving to others that I really was ill.  My problem was that I never really look ill.  There’s a reason for this: when YOU get a bug your antibodies recognise it and create new antibodies that are specifically designed to fight that particular bug.  Once the bug has been killed, different parts of your immune system march in and effectively consume the bug.  This “warfare” going on inside you is what makes you look and feel ill.  However, I’m different.  I don’t make antibodies, so I can walk around with a serious infection whilst looking absolutely fine – no warfare going on in my body.*

The problem I always had was that I didn’t look ill or “disabled” and so no-one knew I had limitations unless I specifically told them.  I remember once parking in a disabled parking space at the station (having displayed my blue badge) and as I was walking from my car a man from the minicab office came out.  “Oi!” he shouted at me.  “You’ve got to be disabled to park there!”  I replied “I am disabled actually” and carried on walking.  “Oh really?” came the reply.  “Yeah, you bloody look it”.  Thank G-d my Mum was with me: “Wait here” she hissed through gritted teeth, and went marching up to the cab office.  I have no idea what she said to the man, but I do know that my Mum is a force to be reckoned with when she’s pushed!

It’s now 13 years since I was diagnosed and I still struggle with balancing the need to be treated equally with the need for acceptance of my limitations.  Only last week I had a coughing fit at the checkout in Sainsbury’s.  My coughing fits are a sight to behold – a deafening, hacking cough that leaves me breathless, doubled over and bright red in the face.  Oh and usually coughing up yellow stuff.  Sorry – too graphic?  Anyway, I am well used to being given a wide berth when these start, but during the Sainsbury’s incident a mother actually moved her child away from me.  Everyone in the line behind me started muttering and shuffling backwards, but I didn’t have any breath left to tell them they weren’t going to catch anything from me and I don’t smoke 40 a day.  I was left embarassed, apologetic, and feeling like I couldn’t get back to the sanctuary of my car quickly enough.

And as chance would have it, it turns out my son also has a hidden disability.  My 3-year-old little boy, J, has autism.  We are still waiting for the formal diagnosis to say exactly where he is on the spectrum, but my suspicion is that it will probably turn out to be Aspergers.  He looks just like any other boy his age, and at first glance usually behaves like others his age too.  So when he suddenly has a meltdown in the supermarket (they just adore my family in Sainsbury’s!) it is very galling for me to have people glaring and tutting at us.  I am desperate to explain to people that he is screaming hysterically on the floor because last time we were here I bought him a magazine, so he has come to expect that as we walk through the door, and can’t understand why things didn’t happen as he’d planned.  Or that he is spinning in circles with his hands over his ears bumping into people because he has gone into sensory overload and can’t take the tills beeping, people talking, babies crying, fluorescent lights buzzing, trollies squeaking, phones ringing noise.  “Don’t judge my little boy” I want to say.  “He’s not being naughty.  He has a disability“.  But I don’t.  Instead I sit down on the floor next to him in the middle of the cheese aisle, and I hold him close to me and put my hands over his ears, and get his favourite laminated picture out of my bag so he has something else to focus on.  And then we carry on shopping.

I once had a conversation with a man who had Multiple Sclerosis and used a wheelchair.  He described his experience of feeling invisible, and of people seeing the wheelchair and nothing else.  No-one expected anything of him, and people were constantly surprised at his abilities.  We compared it to my experience (and now J’s experience too) of people being surprised at our limitations.  We pondered whether it was better to have a visible disability or a hidden one, but ended our conversation none the wiser.

My condition (CVID) is disabling.

I have a disability.

I am disabled.

But sometimes I think I’d be much more able, less limited, with just a little patience and acceptance from strangers.

* Thank you to my fellow CVID friend L.M. for her explanation of why I don’t look ill when I am ill!

Accepting Limits

Grrrr. I know I’m new to this blogging lark, but it’s still mighty irritating to have finished writing my second ever post only for it to have vanished into the ether. And it was a pretty good post too. Now I’ve got to try to remember what I said. Grrrr.

Well I started by saying that I’m not intending for all this “I’m through accepting limits” talk to come across like I’m claiming to be some sort of super-woman. I’m not shouting: “I can do anything I like, so don’t try to stop me!”

Because actually I do have some very specific limits, and I can’t do anything I like.

I have a very rare genetic condition called Common Variable Immune Deficiency (CVID) which is a type of Primary Immune Deficiency. I won’t go into it in detail here as I intend to do so in later posts, but in very simple terms I don’t make antibodies. This makes me very susceptible to all manner of viruses and bacterial infections, and my particular weakness is chest infections which I have frequently (or lately, constantly). This is because I have another condition called bronchiectasis. This is permanent damage to my lungs, caused by 20 years of chest infections and untreated pneumonias. I was diagnosed with bronchiectasis in 1998 when I was 21, and CVID in 1999.

It took many years to come to terms with facing lifelong illness. I had to learn to accept and live with the limits it placed on me, whilst also thinking about how to challenge those limits in a realistic way.

Most of the time I think I deal with it pretty well. I don’t complain much, even though I spend a fair amount of time feeling utterly rotten. I am very proud of some of the things I have achieved in spite of my condition. And I have learned to accept help where I can get it, which in turn reduces the limits I have to face. But today I was reminded that having a rare, often debilitating condition, leads to limits beyond *just* being ill a lot. A big part of what I’ve had to accept is other people’s ignorance, intolerance and plain unkindness. This afternoon’s case in point was a perfect example of the stress, anxiety and frustration that can be caused by another person’s ignorance, and more importantly, a systemic failure to accomodate people who don’t fit neatly into a set of tick-boxes.

I phoned Job Centre Plus to talk through my possible entitlement to benefits. The conversation went like this:

Job Centre Plus: Do you have any illness that may affect your ability to work?

Me: Yes.

JCP: Do you get specialist medical treatment?

Me: Yes [so far so good!]

JCP: By this we mean dialysis, chemotherapy, radiotherapy or plasmapheresis.

Me: Well it’s none of those, but it is specialist medical treatment. I receive it weekly, and without it I’d probably die.

JCP: [Suspiciously] Hmmmm. What’s it called?

Me: It’s antibody replacement therapy.

JCP: That’s not on my list.

Me: Well no, it probably wouldn’t be as my condition is very rare. But I need to infuse human antibodies once a week to keep me alive.

JCP: What’s the name of your condition?

Me: Primary Immune Deficiency.

JCP: Is that the same as HIV?

Me: No. HIV is a secondary immune deficiency, which means you catch it. My condition is a Primary Immune Deficiency which means it’s a genetic disorder.

JCP: Oh. Well what’s the condition actually called?

Me: Primary. Immune. Deficiency.

JCP: Hold on … [5 minutes of keyboard-tapping sounds ensue] … It’s not on my list.

Me: No, I didn’t think it would be.

JCP: Hold on … [More keyboard tapping] … I’m just going to go and speak to someone.

[5 minutes of listening to “I Will Always Love You” on pan pipes]

JCP: Hello. It’s not on my list.

Me: No, it’s a very rare condition.

JCP: What shall I list it as? Is it a blood disorder?

Me: Not really.

JCP: I’ll put blood disorder.

Me: Oh right.

JCP: Do you have any other condition?

Me: Yes. It’s called bronchiestasis. Would you like me to spell that for you?

JCP: Yes please [keyboard tapping sounds] … it’s not on my list.

Me: Oh really, I thought it might have been? It’s not quite as rare as the first one.

JCP: Can you spell it again please.

Me: [Spelling s-l-o-w-l-y]

JCP: Yes! I’ve found it! Can you tell me when you first had these conditions?

Me: I’ve probably had the Primary Immune Deficiency all my life but it wasn’t diagnosed until 1999. I’ve probably had bronchiectasis since I was a teenager but it wasn’t diagnosed until 1998.

JCP: So when shall I say you first had these conditions?

Me: [banging head on table] You can put 1999 and 1998 if you want to.

JCP: What date?

Me: I have no idea.

JCP: I need to type in a date.

Me: First of September?

JCP: For both of them?

Me: Sure, why not.

JCP: Any other conditions?

Me: Yes, depression.

JCP: [jubilantly] Depression! I know that’s on my list!

Me: Hooray!

The first post …

I’m through accepting limits
‘Cause someone says they’re so.
Some things I cannot change
But ’til I try I’ll never know.

I don’t really know yet how this blog is going to take shape. I’m not sure what I want to say. I just know I want to say something.

But before I could even think about what to write for my first post, I had the challenge of finding a suitable title  for my blog. Eventually I found inspiration in my favourite musical, Wicked – the lyrics above are from the song “Defying Gravity” sung by Elphaba and go a long way to explaining why I felt the need to start blogging.

So … I intend for this blog to be about the things I cannot change, and how I can learn to accept them. And for it to be about how I can try to change the things within my control. But mostly I intend for it to be about refusing to accept limitations that others have imposed – on me, on my family, on the world around me.

I don’t know if anyone will read this, and I don’t know if what I write will be worth reading. But, in the words of Elphaba: “It’s time to trust my instincts, close my eyes and leap!”