How do you explain?

Long time readers might remember I have an 11 year old cousin, whom on this blog I call Jewel, who has special needs. She's on the autism spectrum basically, with a diagnosis of speech dyspraxia and some muscle tone / motor function problems thrown in as well.

GG and Jewel get on famously, GG being fascinated with older kids, especially one so into music and dancing as Jewel, and I sometimes think Jewel loves GG because she doesn't have any expectations to live up to with her, plus her behaviour is often a lot better around GG, almost like she is enjoying the fact there is someone who she can be better at at different things.

The girls see each other probably a few times a week, and GG often stays over at Jewels house, where they have a great time.

Jewel asks, probably every time I see her, if she can stay at my house one night too. To date, she has only stayed a handful of times with me. Not because I don't want to have her, but because at the last minute, her anxiety gets the better of her, and she doesn't want to go.

This is rough on GG. She gets excited at the thought of having Jewel stay at our place, and quite upset when it then doesn't come to pass. It's not Jewel's fault of course, and I don't want to drag her when she clearly is upset at the prospect, although I wonder if she would have a bit of a meltdown and then be fine, if we really pushed the issue. I suspect I'm falling into the trap of thinking of her like a "normal" toddler, who doesn't want to do something, which would be a mistake. I can't pretend to know how Jewel's mind works, even her own Mum doesn't. I once said to her when we were considering this approach, "You know her better than me". To which she replied, "Well no, I don't really know her at all". I was struck with sadness at that sentence, but didn't really know what to say in reply.

Yesterday, we had another go at having Jewel come stay. Last time, speaking as if it was simply a done deal, "okay it's time to go" throwing her stuff in the car and going seemed to work. She had about a day knowing about it, which gave her enough notice that it was going to happen, but not enough time to work up a lot of anxiety about it. Well, it must've been a fluke last time, because this time it didn't work at all.

Jewel became very upset at the thought of going, yet every time we said "Okay, you don't have to then", she would immediately say she now wanted to. I don't know if she was trying to please us, saying what she thought she wanted us to hear, but then getting scared and saying no, or whether (and this is what my gut tells me), part of her does want to come stay and play with her friend, but her anxiety makes her pull out at the last minute.

Through out all this, GG had been cajoling Jewel to come with her, "Yeah, c'moooooon" and getting visibly excited that Jewel might be coming to stay. These days I prep her that it's only a maybe, Jewel might not come, etc., etc., and she is pretty good, she no longer gets too upset if it doesn't work out.

As we were leaving from Jewel's yesterday, GG seemed fine, until a few minutes after we left, her bottom lip started wobbling and she asked in a plantive voice, "Why Jewel no come stay?"

"Well, you remember that sometimes Jewel gets a bit scared of not staying in her own place, and decides not to come. You can still see her on the weekend and have a play."

"Yeah, but why she get scared? I no get scared staying over."

And there's the thing, how do you explain something as multi-faceted and delicate as autism and mental health to someone who is only 3?

I gave it a try, anyway...

"Well, Jewel's brain doesn't work like yours and mine..."

"What a brain?"

"Umm, it's what you think with, in your head, and it's how you learn things. So Jewel doesn't think and learn quite like we do, and some things that don't worry us, upset her quite a bit, like staying over. So we have to be a bit patient with Jewel, because she can't help it."

"Something wrong with her brain?"

Of course the easy answer here would be "Yes", but I don't want GG thinking there is something 'wrong' with her friend and cousin, because really, I don't like that connotation, and she won't get the subleties involved.

Instead, I go with, "No, there's nothing 'wrong' with her, she's just different. It doesn't mean her brain is worse, or better, than ours, just different. Like your dollies, Raya and Prinny, one is cloth, and one is plastic, but you love them both, even though they are different, right?"

"Oh, yes!"

"Well, there you go, Jewel is just different."

"Whycome she different?"

"Well, that's just the way God made her."

"Oh, God like different dollies too!!"

Sometimes, I really feel very small and humble when speaking to my daughter....

The Real SuperMums

You hear the term “Super Mum” bandied about a lot these days, don’t you? To describe some celebrity that manages to combine a career and multiple helpers plus a nanny to raise her kids; a soccer Mum who manages her kids, her charity lunches and her hairdressing appointments, all while swallowing fistfuls of her kids Ritalin so she can knock out costumes for the school play at 3am.

It’s certainly become a common phrase, and way too over used in my humble little opinion. Except for a certain group; Mums of special needs kids.

I’m not saying they are the only Mums out there deserving of a ‘super’ title, but almost to a tee, each Special Needs Mum deserves not only a title, but a crown and a kingdom to go with it.

I almost decided not to post on this subject, fraught as it is with touchy subjects, and as un-qualified as I am to write about special needs kids, with my one healthy and ‘normal’ child. Within my family are three special needs kids (well, one is an adult), one of whom a cousin I am close to. We’ll call this particular 11 year old girl Jewel.

Jewel is a gorgeous young girl, pretty and blonde, with a sunny and joyful personality. She loves music and dancing. Her exact diagnosis is a bit of a mystery, even to the experts it seems sometimes, but she falls within the Autism Spectrum. She also has speech delay issues and muscle tone problems, and has previously been diagnosed with Pervasive Development Disorder. What all this means, in simple terms, is Jewel sometimes has trouble modifying her behaviour to appropriate levels, and has trouble communicating with people. Her family all understand her well, but most strangers have a hard time understanding her speech.

I have watched her mother, an Aunt I am so close to I sometimes think of like a big sister, see her newborn baby placed in a medieval-looking cast for her ‘clicky hips’, then go from initially having some concerns about her baby’s development to the eventual diagnosis. I have watched on as she dealt with the new reality of her daughter’s life, re-assessing her hopes and goals for her. And I have been always impressed with the grace, unwavering love, patience and yes, even humour she has faced this with.

Now I know compared to some others, Jewel’s condition is relatively lucky. She is able-bodied, reasonably coherent and able to express love for her family and friends, but I don’t think disabilities are as easily quantified as that. Your hopes and dreams for your child have still been drastically altered, your reality changed forever. Heartbreak is heartbreak.

Through Jewel, I have met some of her friends, all with different levels of physical and mental impairment. And meeting the Mums, I am struck that, with all their different personalities, they all possess a certain something; a flinty strength of character, not easily defined, but certainly courageous, hopeful and steeped in love. And what’s more Super than that?

In writing this, I am aware that I have only talked about Mums. Mainly because it’s the Mums I have met, and as a woman I tend to relate more to other women, but the Dads I have met are no less impressive. In the case of Jewel’s family, she has an amazing Dad, patient, loving and encouraging. She also has a pretty outstanding older brother, who has always been a great kid, but has perhaps a bit more compassion, maturity and empathy for the situations of others than the average 14 year old.