Autism & Us

I have two daughters, aged 4 and 6, both diagnosed with autism, with the youngest (Lilah) also having OCD and pica. At the moment, Sophie is non verbal, though spouts random words and nods her head at every question. Lilah has just started to say “do want” “I want” “yes I want...(insert item)” and has come on very well with her communication in these past few months.

Before though...

At 1.4 years-3 years, Lilah would make herself sick, full on vomiting in the middle of a shop, at the bank, in the post office, at the dentist, at mealtimes when she didn’t want to eat her dinner. She’d throw up at the sight of me eating food she didn’t like. She’d make herself sick if she wanted to play with water in the bath.

Then came the poop.

Everyday, Lilah would pee on the carpet, right beside the potty, every time. She would also go number two, and if I happened to be busy at the time, she would take said number two, and draw on the walls, carpet, herself, smoosh toys into it... this happened many a time, I do have two daughters, one can’t have eyes on her 100% of the day when there are two with such difficulties.

Both are very fussy eaters, mostly beige or orange food and it is becoming increasing difficult to provide enough variety in their diets. I do like to feed them both gluten free, they have not been diagnosed as intolerant though they both have what I call malteaser poops, small hard nuggets often difficult to pass and will cause sore tummies. If your child’s stools are similar, try stopping gluten for just two weeks and see if it helps.

Not a day goes by where something isn’t broken, eaten, lost, or obsessed over.

Toys are difficult to find, nothing too noisy which makes any movement. Both girls are freaked out by dancing Santas around the holidays & I’ve had to stop going to one of my friend's houses around this time of year as her Christmas decorations scare my children... yet they both love Halloween (????).

If I have one helpful tip, it’s to look for triggers, study their reactions to things carefully, if your child is on the verge of a meltdown and you just can’t figure out why, take a second to investigate the environment and their body language. Sometimes it helps if I get my girls into a different room first, once they are calmer, then investigate. If they are in such a state of frustration, they can’t communicate at all. Sometimes it will be the silliest of things, such as a particular advert, or the sun's coming in too bright, or the room can simply just be too busy with decor. Once the offending issue has been dealt with, they can get on with their day.

It’s hard for any of us to imagine what their world looks like, sounds like, feels like, or just why silly little things can cause such a dramatic response. With Sophie, I know she can’t deal with chaos, when a room is too busy, noisy, if there’s too many people, too many items on her plate to choose to eat... she’s easily overloaded & needs a calm environment so she can be heard.

Lilah on the other hand... revels in chaos, causes the calamity, she’s not bothered by large crowds, in fact she doesn’t even care who’s where or doing what, as long as she does whatever is on her agenda and no one gets in her way, she’s happy. If there’s something she wants she will stop at nothing to get to it, no matter how dangerous.

My girls, though both diagnosed with the same base condition, are very, very different children. If your child is diagnosed with autism, it doesn’t mean there’s a particular set of rules or a guide that you now must follow, it means now the rule book has been thrown out the window & you are now the author of your own guide. There is advice out there, there will be a thousand things you will try & nine hundred and ninety nine things that won’t work. That one thing that works for you might not be the “norm” for anyone else you know, but if you know what works, stick with it.

I’d love to hear from more parents if children with autism. I haven’t exactly been very pro-active when it comes to communicating with other parents, mostly due to my own anxiety issues, though now I feel I have learned the lessons my kids had to teach me!