Eczema/Autism continued

Now, although eczema itself is painful and irritating, and the High functioning Autism makes my child slightly different from the “normal” child, I still find both of these things easier to cope with than some simple everyday occurences.

We are a “different” family, that is for sure. We don’t really delight in parties and going places, partially because it is hard work, partially because we have to explain so many things to everyone else. Three boys with varying degrees of comfort levels in hot weather, two of the boys with eczema which flares up when they are too hot or eat something which irritates it and the one son whom you just can’t prepare.

There comes a time though when even the toughest facades can break. Those times are usually when the school is rife with birthday invitations. Both my sons don’t get any invitations.

Because my second son’s first two terms at school were so traumatic for him and his peers, nobody got to know “him”. He was just the weird kid who wears glasses and screams like a baby when his mum leaves him at school. He smells funny and when he doesn’t like something, he starts to scratch himself until he bleeds. Oh, and don’t forget, he also isn’t allowed to eat the cupcakes you bring in for your birthday.

The sad thing for me was when we attempted to “make” friends for him. On someones (rather heavy-handed) suggestion, we grudgingly decided to hold a birthday party for him. “It will be good for him and it will be great for you as you’ll meet mothers from his class” My heart was in my mouth…I knew that he wasn’t the most popular kid in class, I also knew that the “mothers click” was well established 2 years into a child’s schooling.

I felt bad things to come. My beautiful boy however was ecstatic. He even brought out his slumbering talent for writing (he still has trouble reading as a result of the late diagnosis) to write invitations for his friends. I felt so bad when I made him whittle his list of 35 down by half. He just couldn’t understand that parties cost money and where we were going, each child cost $11. Cheap but still, by 35…sorry.

We did all the right things, we made sure he brought the invites to school and he was so excited you couldn’t wipe the smile off his face if you tried. I booked the venue and explained that there may be 15 kids but are they flexible?  We had an R.S.V.P and my phone number was clearly there. All to do now, wait.

And we waited. Until the last day, when two rang up and said, yes we will come. My boy was beside himself with worry. Imagine a sheep dog who lost a sheep in the heard and was trying to round-up the rest of them in desperation. Well, that was he. “Can we call them mum?” I wished I could, but I had no surnames or phone numbers to even try.

Well, today was the day. I had been assured that after we show how friendly and “open” we are, others will reciprocate.

We were open and friendly to the 4 children which showed up for the party. I was friendly and open to the two mothers who dropped them off. They were also very friendly as they said to each other “let’s go for that coffee while the kids have fun. Thank you so much for inviting them. We’ll be back in about 2 hours?”

He had a ball, he knew many didn’t come but he didn’t know why and won’t ever know why. I won’t tell him, he wouldn’t understand it anyway. I felt hollow. I had been promised the world would open up for me and the children, yet there I stood, having to pay for 10 children, wishing the world would swallow me instead.

I am not angry at the people who don’t understand us, I also don’t resent the ones who never replied, that they are not coming. The people I do resent, are the ones who don’t take the time to really “know” a family before browbeating them into situations which are so far removed from their own comfort zone as to make them physically ill at the though of it. The people who will not listen to a mother’s knowledge of the “system” already in place. The people who know better than you because they got paid to know more.

Many times I am slightly grateful for the visual disability of the eczema because if it wasn’t for that cue, many would not treat my Autistic son differently and that would make him very ill. Mind you, I write that sentence in trepidation that it will be looked upon unfavourably by someone “in the system”. “Oh, we got her now” they may celebrate, “We have it on the world-wide web, this woman likes her kids sick”  Well, as God is my witness, I would have all their pain on my shoulders in a heartbeat if it meant they could go out and play with the other kids without fear of teasing and ridicule. Sad as it is though, “mental” issues are not visual and people suffer needlessly because “seeing is believing”

With love & support

Tarja Kelly


2 Responses to “Eczema/Autism continued”

  1. 1 Lisa Chirnitch 22/12/2012 at 1:28 pm

    Thanks for sharing! You shared some of my story! Wish more people understood!

  2. 2 05/06/2014 at 11:36 pm

    These are really wonderful ideas in about blogging.
    You have touched some nice factors here. Any
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