Disability 101


First up, apologies for the length of time that’s passed since my last post. The summer was crazy, my youngest has since started school and we’ve tackled one small family crisis after another for the last few months- as you do. Business as usual then.

Excuses aside, I’d like to put a disclaimer out right here. This topic is something close to my heart, and is in no way meant to insult or guilt trip you lovely people; but rather inform and educate from the perspective of those of us living in the parallel universe of disability. The biggest hurdle we face as parents of special kids is an ignorance and lack of education on behalf of the world. These barriers infiltrate our everyday; irksome diversion signs on this long haul journey to destination unknown. Take a walk in my shoes for a while.

Five things you should never say to a special needs parent.. (and a few things you should)

1. God only gives special kids to special people, and God never gives us more than we can handle.

Top of my list are these two gems- more often than not they come together, like the bread and butter of awkward conversation.  Whilst I understand the inherent need and heart behind offering kind sentiments intent on comfort and explanation this is, quite frankly, bulls**t.  Let me explain. Cleaning poo off every exposed surface in your house. Stopping your child from making himself sick when distressed. Advocating for your child 24:7. Permanent sleep deprivation. Wishing every day to hear one precious word fall from his lips. These are a few of the ingredients for Recipe Real Deal. I know of many families for whom the strain of raising a disabled child has been precisely too much to bear- marriages have melted in the heat; children removed from their homes for the safety and sanity of all concerned. Thinking further afield are you telling me the child in sub-saharan Africa who dies of malnutrition, or the Eastern European teenager trafficked into the sex industry were not ‘given’ more than they could handle? People everywhere find themselves dealing with situations no human being should ever have to bear. Shit happens, let’s just call it out. Our journey is rough, and it definitely IS more than we can handle. We are not superhuman or better than you; just because we have special kids doesn’t make us special. We’re wading through this muddy swamp the best we know how, and when you row past on your kayak of good sentiment, it hurts.


2. I couldn’t do it.

My problem with this little phrase is the embedded assumption that where you couldn’t, I could. The reality is this- we really can’t. We really can’t, but we absolutely have to. There are days I want to run away and start again, days where the daily grind crushes me to powder. But the fallout if I choose out is too dire to think about. Could doesn’t come into it- if you had to, you would.


3. It’s probably just a phase- he’ll grow out of it.

Oh. Dear. Lord. This one has me sitting on my hands so as not to publicly facepalm and embarrass my fellow conversee. As humans, difference seems to sit uncomfortably and we automatically try and bridge any gaps with a jolly fix it comment.  Firstly, no he will not grow out of it. B has a rare chromosome disorder, for those of you who skipped biology in high school this means his disability is in every cell of his body. Hardwired, if you will; however much Miracle-Gro I feed him won’t change that fact. Other disabilities are similar. Take autism, for example. Copious research has shown autistic brains to be routed differently from the start. Special needs parents are in a constant state of grappling with reality, and reminding us so harshly of what is NOT true for our children does nothing but delay this process. We’re dealing with the differences- please join us in that too.


4. My mother’s brother’s cousin’s neighbour’s dog owner’s child had special needs. I know exactly what you’re dealing with.
Er. Never, ever say this. Period. Some of the more sensitive among you will have your jaws on the floor right now, but in actuality this is a phrase many of us have heard before (interchange the people as necessary!) However much you THINK you know about our lives, you know very little. Whatever your ‘experience’ level, unless you too are on this journey you’ll only ever have sideline viewing, and that’s OK. You know the facts we are comfortable sharing, the prettily-packaged-digestible–to-the-general-public-bits. We’re already so very isolated on this road, the last thing we want is to be labelled the ‘needy obsessive one’ in the few social circles we do manage to turn in. It takes a lot for us to share, and so we filter. You know when you watch a 3D film and you’ve forgotten your glasses? We have the specs.


5. It could be worse

This little throat punch is especially troublesome- to be told things could be worse means that we have already made ourselves vulnerable by letting you in on some struggle or another. (But you’re right, my foot up your rear may worsen things for you today) Seriously though, as soon as you say this to me, a mental note gets scribbled as I shift your name from the safe list to the guarded list in my head. We all need a bigger safe list, but for special parents that network of true friends is literally our lifeblood. Of course tomorrow could be worse, but that doesn’t invalidate my trials of today.


When I asked my network of special needs parents the cumbersome clangers people had dropped in conversation regarding their kiddies, they came up with the following. Big shout out guys, thanks! Hold onto your hats, these are all genuine quotes from no doubt well meaning people, along with some varying responses.

Can I touch him?
Gracious response: He needs hugs just like any other kid.
Ungracious response: Oh no,  definitely not, he’ll break.

What’s wrong with him?
Gracious response: launch into educational chat about child’s condition.
Ungracious response: What’s wrong with you?

She doesn’t look any different to me.
GR: Not all children with a disability look different.
UR: You don’t look ignorant, but here we are.

She’ll eventually catch up/walk/talk/potty train etc.
GR: I’d really love that.
UR: Brilliant, an all-in-one therapist. Could you tell me where I can train for that?

Why doesn’t he talk?
GR: His brain is wired up differently.
UR: In all honesty, with comments like that, I’m wondering why you do.

But he’s so cute and adorable.
GR: I agree.
UR: His smile is magical, especially at 4am with poo all over his face.


Like I said at the start, this isn’t meant to shame or guilt trip you. Please don’t be worried to chat to us- having special kids has made us more thick skinned than you could know (and also developed a somewhat warped sense of humour!) But it would defeat the purpose of this post to leave you with a sour taste in your mouth; I want to leave you with a few truths and some practical ammo, a disability 101 of sorts. Here comes the sugar

We are lonely. I always appreciate when someone takes time out of their busy-ness to connect with me. So often our lives get so sucked up in caring, advocating and fighting for our kids we have little time or energy left for anything else. If I haven’t been in touch for a while, apologies, you are an important part of my life and I need your input. A text, an email, a phonecall or even a letter go a long way to making life less lonely.

We’re copers. We cope because we have to, not because we choose to. Our alternative to coping doesn’t bear thinking about, but please don’t presume we’re coping well. A lot of the time we may present a surface calm, but underneath we’re frantically scrabbling to tread water. Ask how we’re doing and be prepared for an honest answer; be genuinely interested in our chaotic life; ask how you can help. Knowing people are listening is worth more than you can know. 

We get forgotten. So often our family gets forgotten because the assumption is it’s too difficult for us to join in mainstream activities. People are also worried that it will be too tricky to accommodate our needs as a family, so often (through no ill intent) they don’t even try. We’re constantly thinking outside the box and being three steps ahead so we can function as normally as possible- after all we have three regular edition children in this dolly mix. All it takes is a conversation about how we can work it and chances are we can probably join in some way or another. Consider this the knot in your hanky.

Having a special child defines our family. This is not our preference, this is just the way our shit got dealt. Let us talk about it without fear of being labelled obsessive or needy. Offer to help. Be authentically interested in the progress of our kids without trying to whitewash the chaos. Love them with us for the unique and incredible people they are. Don’t offer us advice. Take time to connect and hear us- I mean really hear us. Be patient when our fighting spirit occasionally overspills to you.

But lastly, remember this. We love you, we need you, and you can be the difference between Concorde or Titanic. Titanic simply can’t be an option.








Comments

  1. Thanks for your post. I agree with you so much it brings tears to my eyes. My almost 5 year old has 22q13 syndrome. This should be required reading for all.

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    Replies
    1. Thanks Julie-please share with whomever needs to hear! Life is crazy enough without the added input of well meaning people who happen to hugely miss the mark :/

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  2. my daughter has 22q13 syndrome also, Julie.

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  3. I was once told that "I had no life!" Once I picked my jaw up off the floor I said "actually if that were true, I would be dead!" The poor girl didn't know where to look after that and yes she is now someone I avoid.

    Welcome to Blogland. I am a Unique parent too. Come say hello at http;//lyndylou-whocares.blogspot.co.uk

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    1. Big love! A different life, yes. still a life none the less!

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  4. It's interesting to read this. I had a beautiful, healthy child and she died at 11 years old. I heard many of the same things from the people that tried to meet me half-way. Even worse though, many didn't even try. I've not walked your walk and cannot speak for your life or your response to people's sad attempts to "help". I never got the statement "It could be worse". I guess they felt that the death of a child was the worst thing that could happen, maybe that it way your people mean when they say that to you. I always tried to remember that they were trying, and that was better than those that just walked away since my life was just too sad for them just then. A few told my family that they would talk to me after some time passed..... I still don't know what that meant. Anyway, thank you for sharing your life and your trials. I think your blog will do great things for those that share your journey. Blessings to you and yours.

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    1. I'm so sorry for your loss and I can't begin to imagine the pain. Thank you for taking the time to share.

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  5. Thank you for a very insightful analysis
    You have helped me understand a lot more

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    1. Thank you John for your encouragement. It's brilliant to know this is falling on listening ears!

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