When we started on this long journey of ours along the vast meandering road, with many tributaries, that is Autism Avenue, we had a lot of areas of concern regarding our wonderful WiiBoy. Of all the concerns we had, like language delay, screaming tantrums, hyper activity and wakeful nights etc; etc; one concern took utmost priority in my mind. It completely over took all other concerns....even the lack of speech...to the extent that it cost us a one year delay in finally getting a diagnosis. Well, there were other factors but the Professionals assessing us that day should have seen beyond my obsession with this particular concern. Unfortunately WiiBoy was far too well behaved for that hour of that particular day. I can however assure you that that NEVER happened again as from that moment on I learned how to ensure that WiiBoy behaved appropriately for all further assessments.... You know what I mean!
That worrying concern was WiiBoy's reluctance to eat..... and hence an inability to poo with any regularity. I copped on and stopped mentioning this issue at assessments until I was finally taken seriously by the Lucena psychologist. When I eventually mentioned it to her she nodded her head knowingly and in sympathy. It was yet another indicator of Autistic Spectrum Disorder you see. Everyone else forgot to tell me that. I was saddened by her reaction yet also relieved. Affirmation of your very legitimate and worrying concern will do that to you.
As we all know this "fussy eating" is down to our children's sensory problems. I also believe that their high anxiety levels plays a huge part in this. WiiBoy was a very anxious child. I didn't realise this at the time but was advised so by the Play Therapist and it made absolute sense to me. I was also told, and found it to be true, that as interventions start to work layers are peeled back and eventually (if these interventions are consistent) the child's behaviours/needs are lessened and , ultimately I guess, that's how the child gets to move along the spectrum. In our case from ASD to PDD-NOS. It makes sense, therefore, that as life becomes more manageable for the child their anxiety levels decrease substantially and they do things that you never thought possible. Like for example, asking for help appropriately either verbally or via PECS (or even the fabulous Grace App for iPhone !) as opposed to screaming for hours. Like perhaps, playing with another child appropriately or eating......food! Food that you NEVER thought you would EVER hear your child request...let alone eat!
I know there are so many of you out there with young children going through exactly what we went through. Most of you have early diagnoses so I like to think you are ahead of the game...although I know that's not how it may feel to you. Forgive me, it's easy for me to feel positive on your behalf! It is very, very worrying, I know. This Autism Avenue is a very long Avenue indeed and our children are at different places along this road. I know that the outcome differs for all too but with continued support and interventions I feel hopeful that most of you will experience varying improvements as your child's sensory and anxiety levels are appeased somewhat. I can see it already on some of your facebook statuses and blog posts. They are tiny steps yet giant leaps and it makes me so happy to read them! It is a very long and labourious journey but can be so worth the perseverance.
Our journey to date is about eight and a half years long (from when he was 15/18 months old). Two and a half of which was without diagnosis and assistance thereby allowing the behaviours to take hold and worsen.
Let me share some of the eating habits of the lessor known WiiBoy with you.....
The Early Years.... these years were of great concern as WiiBoy ate very little. On a very bad day he wouldn't even eat chocolate, his favourite treat. So worried was I that I kept a Food Diary detailing his food intake, and his poo output, in a desperate attempt to see if any pattern emerged. It still upsets me to read it. So worrying that, as I revealed about a hospital stay in a previous post ...
"I was so desperate I seriously considered starving him enough so that he'd (drop 2lbs and) get into the Malnourished range, so that they'd do something. Of course I did no such thing. But I was desperate for help."
(Please read my "previous post" here ....it relates to the serious constipation issues that we now have as a result of those early years. WiiBoy is still on Movicol to train bowels. Please be aware of how important this issue is.)
I often felt so sorry for my child, although I didn't know what was wrong I could feel his distress. I often wondered if, even at that very young age, he was using food to communicate his difficulties in navigating Autism Avenue. Even though I didn't know that was the road he was on, I knew he was somewhere that I wasn't and he didn't have the language skills to tell me what was wrong. It is terribly upsetting to see your child so distressed, knowing that he must be hungry yet he can't eat.
Thankfully through the intervening years, things have slowly, yet massively improved. Although he still self limits, his food choices are increasing, and even though he still likes to eat (and do) things in threes he can now cope when that's not possible.
Pub for Tea.....for anyone who knows me this is a very regular status on my facebook page ! As innocent and as normal an occasion as going to "pub for tea" may seem to most families, for us on Autism Avenue it is something none of us take for granted! Over the years we have gone from WiiBoy in rock-a-tot, to being in buggy, to running around causing mayhem to sitting quietly. We have had many years of going for tea and only ordering crisps and a drink for him (I would have tried to feed him something at home...two spoonfuls of dinner is usually all he had) while we tucked into heaped platefuls of fabulous food. That used to kill me....and I'd always apologize to the waitress and offer a pathetic excuse, that I inexplicably felt obliged to give, like: "He doesn't eat"!! These were the guilty years for me. During that time we also had a long period when his acute sense of smell, with very strong accompanying gag reflex, would see him take cover under the table when our food was being served. His sensory overload.
Nowadays we visit and WiiBoy tucks in with relish! He has his favourite dish in each venue we frequent. In Bradys , our local, it's Burger with onions (yes...he can now tolerate something inside a bun, although he doesn't eat sandwiches!) and chips, and in The Martello Bray where we go with my mam it's "creamy pasta" ..without the chicken and bacon (we don't like "bits"!) So, while he still self-limits and has some rigidity about what he eats and where, we all now enjoy a guilt-free trip to Pub For Tea!
The Holidays...... We have been on lots of holidays with WiiBoy over the years, they keep me sane! Although how we ever went on a foreign holiday again after our first one with him simply astounds me! But we did and I'm glad we persevered.
We persevered through the years when he ate virtually nothing for two weeks. Then there were the years when I'd make spaghetti bolognese and flat pack it in freezer bags to bring with us just to ensure that there'd be at least a couple of days that he'd eat something....even a couple of spoonfuls. Nowadays I can just bring some My Dolmio pasta and sauce packets (just in case)! They are a life saver! On those early holidays we would leave an hour early for dinner every night so that we could go to the nearest Mc Donalds (we always made sure there was one nearby) as this was the only place he would eat something. "Something" was usually five chips.... and maybe a chicken nugget, if we were lucky. He wouldn't eat in the restaurants. Mc Donalds is familiar territory in an unfamiliar place.
Fast forward to this year's holiday in Lanzarot e and witness the Food Miracles! Yes...they can happen!
The Soup Miracle: Occurred on our Fire Mountain trip. He had soup.... chicken and noodle soup!! Yes.... soup with bits in, for the very first time ever! Does that mean I no longer have to use a tea strainer to remove the chicken bits from Avonmore's fresh cream of chicken soup then? Here's hoping....
The One-Plate Miracle: This happened the night he and I were in a bit of a strop and he walked on to the Dining Room. We got delayed and arrived five minutes later to see him hunched over his Nintendo DSI...or so I thought. It was Chinese Buffet night and he likes some chinese dishes. As it turns out he was hunched over a plate of food. He had helped himself to egg-fried rice, chicken curry and Prawn Crackers! They were all on the one plate.... yeah, that's right...all the food groups were *shock horror* touching each other!! AND...he ate it all with the one fork!!!
The Mix-It-Up Miracle: This was the trip to the Indian restaurant. He eats one Indian meal now...Chicken Korma. He'd tried it once or twice before. He lapped it up. It was served on the one plate...no longer a problem for our WiiBoy. The miracle? He said...wait for it...."Mum, can you mix it all up together?" Can you believe it? We had to pay a return visit to that restaurant he loved it so much! Oh, and he's also had Chicken Balti since we came home!
This post was formed in my head whilst on this holiday and this is where it is supposed to end. But...there's more! The best one is saved 'til last ...WiiBoy's Piece de Resistance .....
The Broccoli Miracle: This happened only yesterday and I'm still in shock! After all the years of sensory issues around food. Of years of very limited vegetable intake and virtually no fruit intake (THANK YOU... Innocent Smoothies! ) this happened..... WiiBoy and I eating dinner, he had carrots only as vegetable whilst I had carrots and broccoli. He said..."Mum, can I have some of your broccoli?" "Sure" I replied as nonchalantly as I could muster...very difficult when you are both in absolute shock AND wanting to jump up on to the roof of your house to proclaim this miracle to the world!! But it gets better.... he then asked for another piece and chose the biggest floret there was and popped it whole into his mouth! He merrily chomped away on it saying : "Mum, can I have only broccoli the next time?" Eh...yeah, abso-bloody-lutely you can son!
Everytime something like this happens it feels like a switch has flicked for WiiBoy and yet another door has opened within him.
I have to say, my WiiBoy is a very happy boy these last few weeks and yesterday was a particularly good day all round. I can't help but wonder if the two weeks off school and the no homework since we came back (lots of tests in school) has something to do with it.
I share this with you for two reasons. One because I am so damned proud of my boy and two, I remember only too well the worry I had over his non-eating with everyone telling me he'd grow out of it. So I share this so that you know you are not alone. So that you know, NO they won't grow out of it BUT with support...and perhaps a daily What's Happening Next schedule to allay any anxieties;-)..... switches may flick and doors may open, in time, for your angel. At least, that's my hope.