Friday, 23 August 2013

Food, Glorious Food (Or Not)

 There was a time when I envisaged myself happily preparing food for my family in my kitchen. My kids would eat what I put before them and ask for more. There would be no separate meals prepared. My children would not love all vegetables of course, and I would be okay with this and simply dish up those that they would eat, just as my mum had for me, and I would not worry about their nutrition because fussy kids only became that way because their parents let them. Right?

And then I had a child with severe autism and sensory issues.

The Bubbly One didn't always have a limited diet. I admit to being very pleased with my three year old who would eat a napoletana pasta with baby spinach at the shops instead of McDonalds. He may have had autism, but he was a "good eater". I'd worked with adults with autism who had limited diets, but it never occurred to me that my own child would head down this path. As a toddler he ate most of what we ate, though I had to cut his vegetables really small and mix his food together. But from the age of about three he began to drop things from his diet, just a few things at a time. It was subtle at first. He'd "go off" something for a while, then eventually he'd take it back up again, but then he wouldn't do that either. He just kept on dropping foods until he go to the point where we are at now. His paediatrician has told me not to worry as long as we are supplementing those things he lacks, but it's still stressing me out in a big way. We are hopeful that we will be able to participate in some feeding therapy at school over the next year or so, but that's still depending on funding and we can't afford to do it privately at this stage.

The Bubbly One's diet is as follows (and yes, I know it could be worse, that's what I am afraid of):

Thank God he eats fruit! Watermelon, rockmelon, kiwifruit, red grapes and berries are in. Apples and mandarins are on their way out. Green apples, green grapes and bananas (except in cake form) are offensive. I am grateful that he eats fruit as he eats no vegetables except for cucumber, which must be quartered, sliced and the skin left on so that he can then bite the flesh, leaving the skin. If he was a celebrity this would totally be on his rider! He also likes to chew on raw carrot but spits it out, leaving chewed carrot everywhere- but I let him in the hope that he may actually swallow some.

White bread, raisin bread (untoasted at the moment), toast with jam, peanut butter or vegemite. Cheese has disappeared from his repertoire unless it is baked on in copious amounts on a cheese and bacon roll or a cheesymite scroll (which must be from Bakers Delight and NOT home made). I suppose pizza probably fits here too sometimes, but I'll get to pizza in a minute.

Plain chips, Doritos, popcorn, biscuits. He'd also eat lollies or chocolate all day so they are literally locked away if we buy them.

Ice cream, Ice cream and more ice cream (thank goodness as his meds go in there), flavoured milk and thickshakes. If not for Sustagen he'd have nothing for breakfast some days.

Diet cordial, flavoured milk, juice- yes I tried juicing fruit and veg. He took a few sips, was finished and then the kilo of food we'd juiced went to waste. He does drink V8 fruit and vege juice so I stock up when they are on special. He has his iron supplement in a small amount of coke. Likewise if he needs medicine, it goes into coke. Don't judge. We tried EVERYTHING and desperate times call for desperate measures! Incidentally, caffeine does not affect his behaviour, which old schoolers will say is typical of those with ADHD.

McDonalds Cheeseburgers (but hold the bun) and fries, fish and chips, KFC popcorn chicken. I make damn good burgers, fish, chicken schnitzel and fries, but these are all unacceptable. He was having oven fries, fish and chicken nuggets but he's recently gone off them too. So most nights, toast and fruit it is. No meat, no rice, no pasta, no vegetables.

Cakes, biscuits and muffin bars
I need to return to work to keep up with his demand for these things, BUT miracle of miracles, he will deign to eat my baking, which brings me to my mission of the moment: hiding vegetables, fruit and whatever the hell else might be a little bit good for him in all manner of cakes, biscuits and slices (without Daddy and I gaining ten kilos each from sampling them!).

So as you can see, his diet is not totally limited. It could be a lot worse and I'm sure I will hear from those whose kids only eat 3-5 foods, or have had to move to tube feeding because they eat nothing. Likewise, I'm sure that I'll hear that gluten and casein are evil so let's get my thoughts on that out of the way:

I've seen "the diet" help where GI issues do exist, which makes sense to me. If you feel like crap all the time then obviously you're going to struggle to do things, and if you can't tell anyone that you feel like crap you're obviously going to act out to communicate that. But, I've seen adults with autism and no GI issues put on the diet after years of "regular" eating, stick to it religiously for years, and guess what? It made no difference to them whatsoever (except for when their friends had McDonalds and then it was ON!). Except for the bonus of having a healthier diet because fast food was off the menu I honestly didn't see an improvement in their communication, nor a reduction in stimming and challenging behaviours. So I'm a little bit cynical about the whole diet theory and while we have considered it, we don't feel there is enough evidence that it will help our child. Bit if it's worked for you then I'm very happy for you.

Now that's out of the way, back to my new mission. 

I'd pretty much given up on the idea that anything I cooked would be appealing to my son. But then, not so long ago I bought this book that I'd heard so many great things about and I began to hope a little. I won't name it, but it was all about making the good stuff that we want our kids to eat undetectable in those foods that our kids supposedly love. There are heaps of The Bubbly One's sweet treats in there, but I was determined that what he ate at least looked like dinner. So we started with pizza (oh so healthy, I know). The Bubbly One loves garlic and will happily eat a cheese and garlic pizza, so I followed the instructions and made a mixture of white, supposedly mild tasting vegetables (yes, I had my doubts also). I then mixed minced garlic into the mixture and made my boy a cheese and garlic pizza. When it was cooked I tasted it first. The garlic was too strong for me, but how he liked it, and knowing that it was there I got a very mild taste of the vegetable mixture. I presented it to a hungry Master Bubble who took a bite. He chewed. He swallowed and he looked at me. He took another tiny bite. Lifted the cheese and showed me the base with a look that clearly said "I KNOW it's there". Then he ate the cheese and went and dumped the vegetable-laced base in the kitchen sink.

I tried several of the hidden vegetable recipes with foods that he liked, and I stopped keeping score because he knew every single time that I cheerily served him something I'd made that it contained something he wouldn't normally eat. Not only did I stop keeping score but I kicked myself for even attempting it because I now had a food sleuth on my hands who suspected foul play at every meal time, and we suddenly were limited to toast and fruit for dinner. Which brings me to the next stage: forget "real food". Let him eat cake!

The Bubbly One's snack foods were sending me broke so I thought I'd start baking again, and why not try to get something extra into him when he least suspects it! 

I found a recipe for chick pea and choc chip cookies, and since I had an oversupply of chickpeas thanks to that book which swore they were easy to conceal I thought "Why not". Last night when the kids were in bed I cooked up a batch. They smelled great, looked unassuming, and I found a willing guinea pig in Daddy. He took a tentative bite, inhaled the rest and reached for another one.
"Can you taste the chickpeas?" I asked him.
"The what? They taste like Subway cookies!"
That was a good sign. I tasted one and could absolutely tell they were there. What a way to ruin what was otherwise an awesome cookie! Still, I figured I had nothing to lose and "accidently" left the container on the bench for The Bubbly One to find. I acted like I was grudgingly giving him one when he demanded it in the morning (you should see the con job I do to get meds into him!). He took a good long look. He ate the choc chips off the top, and then he polished off the rest in Cookie Monster fashion leaving crumbs everywhere. So I offered him another and he ate that too. Win!!

Of course, my next step was to brag about it on my Facebook page, then I packed some for his lunchbox and wrote a note for his teacher in case they thought they contained nuts, also asking her to let me know if he ate them or just crumbled them up. At the end of the day his teacher told me "He loved them, but he picked out the chickpeas".

Mum: 0 
Bubbly: 543.

Monday, 12 August 2013

On His Terms

We're enjoying a busy but relatively smooth patch inside our little bubble at the moment so I haven't blogged for a little while. The Bubbly One seems to be going through a bit of a change which has been mostly positive. I've written a lot about The Bubbly One's sensory world, and before my eyes I'm seeing a shift towards a calmer yet more intense little boy. I'm both interested and anxious to see which direction things will go for him, and therefore us even as I delight in the small yet significant progress he's made of late. It's also led me to have a good long think about what's happened to get him to this point. It could be his medication, it could be his amazing school, his excellent therapists, the awesome reserves of energy and patience of his mother (HA! I think not!). All of these (excluding the last one) contribute, but I'll come back to what I think it is. First, a little update on where The Bubbly One's at right now.

After preparing for sensory warfare for the Winter holidays we had by far our best holidays ever just hanging out at home. He wasn't remotely interested in any of the messy sensory activities I had for him, nor anything that could be construed as "work" (i.e. structured activities, puzzles, etc.). We spent a lot of time outside, we watched a lot of DVD's and he used the iPad a lot. On the iPad he mostly did preschool level literacy and numeracy stuff and worked his way through a few hundred flash cards and some communication apps- all by himself. He loves these apps and he mimics the words and I can see him applying what he learns so I pretty much give him free reign with the iPad at home. He relaxed (as much as a sensory seeking mover and crasher does), he played with his baby brother, we had a play date and we just enjoyed each others' company.

He started respite once a fortnight for a few hours for the first time ever. He's had both familiar and unfamiliar staff. He's travelled in unfamiliar cars (a big deal!) and he's accessed a new environment. We worried about how he would cope with any of it- and he was better than fine, he loved it!

And the BIG thing; he started swimming lessons. As most Aussie parents do I started swimming lessons with The Bubbly One when he was eighteen months old. It was a disaster. While the other babies and toddlers giggled and happily kicked and blew bubbles my boy screamed and cried non-stop. In hindsight, the swimming centre was a sensory gauntlet for The Bubbly One, and by pushing the issue as long as we did thinking that "he just has to get used to it" we did a lot of damage. It took us two and a half years to get the Bubbly One into a pool again without traumatising him, and from there it took us another year to get him to stop clinging to us and hold my hands while he floated with a buoyancy vest. I had serious doubts about anyone's ability to help him to learn. But then we learned the hard way that he needed to learn after a weekend at the beach where The Bubbly One, in full meltdown, ran repeatedly into the waves over his head while Daddy desperately chased him and pulled him out over and over again. The entire experience left us shaken, particularly as The Bubbly One is a runner, and more recently a climber. Both sets of grandparents have pools, and we have water near our house.

I put him on the waiting list for private special needs lessons that week and a couple of months later a vacancy came up. It also happened that the Bubbly One's school had an intensive swimming scheme starting the week after his first lesson, so I put his name down telling the school that if we or they didn't feel that he was coping we'd back off and just go slowly with the weekly lessons. But as he seems to be doing a lot lately the Bubbly One has surprised us. He didn't freak out as we entered the Hydrotherapy centre, but instead jumped up and down excitedly (his pool ID photo is a hilarious blur!). He coped with the larger pool environment for school swimming and has even used the disabled change rooms despite his fear of public bathrooms. It will be a slow process as The Bubbly One has a severe receptive language delay as well as proprioceptive and gross motor planning issues, BUT he is trying so hard and he is having a blast! I watch him each week with his instructor who is a lovely and gentle but firm older lady. and every time he does something new I hear "teh-mum, teh-mum" (Tell Mum!) echoing across the water. He is so proud of himself and I could just burst watching him conquer another of his fears.

We've also had some small gains with his receptive language and following instructions, and some significant gains with his speech, including some echolalia which has me watching what's coming out of my own mouth! Now we've had The Bubbly One in speech therapy for three and a half years, and honestly, I don't know that it has really made that much difference to his communication. It has helped us as parents to understand how he communicates, and how to respond to him and provide the best environment for him to learn in, but as far as him actually gaining and retaining new skills? I think it is pretty much down to him being at that stage of his development and wanting to learn, which brings me to a phrase we have used with relation to The Bubbly One for a couple of years now: On His Terms.

The Bubbly One saw an awesome speech therapist in his preschool years. She wasn't an autism specialist, something she reminded me of regularly, but she was creative, relaxed, and more than a little "out there"- and The Bubbly One loved her. When he couldn't sit still she worked movement, singing and sensory breaks into his sessions until he reached the point he is now at, where he arrives ready to work and pays attention until that work is done. One day we were completing an assessment for his school placement and she said something that has always stayed with me. She said "He is able to do most of this, but it must be on his terms". It was said a little tongue in cheek, but it was so true of my bubbly boy. We try so hard in this world to bring our children to a place, or a standard, which is perhaps not where they want to be, are ready to be, or even need to be.

We are reminded constantly that our journey with autism is a marathon, not a sprint. We love our children, and we want what's best for them and we want it now, often not realising that they are quite content to enjoy their present as we rush them towards the future we want so badly for them. How many parents beat themselves up because their three year old is not in the 20, 30 or 40 hours of early intervention the latest study says that they need? How many of us feel the need to justify the hours their child spends using technology? I did it in this blog post! We keep at it because we want to believe that if we just work hard enough at it then things will get easier, yet we make things so much harder for ourselves and our kids because we forget to follow their lead.

I gathered enough activities to fill every moment of our recent school holidays, and on the first day my son looked at them and did them. Just for me. With silent tears rolling down his cheeks the entire time. I backed off and let him just be for two weeks, and each day he brought me the iPad with flash cards and numeracy apps and laughter and hugs, and the words started to emerge. We sang silly songs and when I asked something of him he tried his best to do it because he was ready for my voice. When he struggled, he took my hand and said "come", and he accepted my help instead of retreating inside of himself. We followed his lead at the pool, and rather than fear and anxiety we have seen him so happy and proud of himself as he learns.

It seems so simple, yet I need to be reminded over and over again. I can't do it for him, I can't make him learn, and he doesn't need to "just get used to it". He may not do something now. He may not do it next week. But he will do it, and he will do it on his terms.