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):

Fruit
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.

Breads
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.

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

Dairy
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.

Drinks
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.

"Dinners"
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.
Mum:0
Bubbly:1.

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.

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.





   

Changed.

The Bubbly One entered this world after a fairly routine pregnancy followed by a slightly complicated delivery. I was healthy and fit. I worked up until seven and a half months (though increasingly behind a desk with no shoes on and my swollen feet up). I had some blood pressure issues later on but nothing dangerous. During the delivery his heart rate dropped and he lost some oxygen, though he never actually stopped breathing. This happened while I was pushing and we were past the point of no return to go for a caesarean so the OB got him out as quickly as she could, he was suctioned, spent half a day in a humidicrib and the next five days in special care because he had a poor sucking reflex. Other than the poor suck, which was also attributed to his having a very tiny jaw there was nothing clinically there to indicate that he was anything other than a healthy baby who'd had a bit of a rocky entry into the world.

Knowing what I know now, I can see autistic traits in The Bubbly One from birth, particularly with regards to sensory issues. We had a baby boy who wanted to be wrapped so tight I wondered that I was constricting his circulation sometimes. We joked that we were restraining him as we cuddled him so, so tight to settle him as he writhed and fought against our hold- until we applied just the right amount of pressure and he would finally relax and cuddle into us. He wouldn't sleep in his cot, but would lay happily in his pram which seemed so tight and uncomfortable to us. We moved house when he was three months old and when I returned with him to our old house to clean he screamed as he looked around to see everything different. At six months there were more days than not where the only way to settle him was to put him in the baby swing or to take him for a drive. In both cases the movement calmed him and he would drift off to sleep as I cried and wondered what I was doing wrong. At our antenatal class reunion he was the only baby who seemed to be in pain around the other babies. I left embarrassed and disappointed, and joined a mothers group to teach him to socialise and to give me some friends who maybe understood how I was feeling- surely mine couldn't be the only baby like this? He improved there, or maybe it was I that improved. I convinced myself that it was just a personality thing. He grew faster than all of them, but he trailed behind them in development. I watched the other babies become interested in each other and he seemed to be in his own little world.

He made sounds, so I thought he was okay. Looking back I see now that the sounds he made carried no interaction with us. There wasn't the intent to communicate something with us- something that I've only really realised since his little brother came along. I don't recall him responding to his name, more to our voices. He couldn't stand to be with anyone but us or his grandmother, and family gatherings were torturous as he would scream at anyone who looked at him, especially if it was a male with a loud voice. I would bump into friends at the shops and he would cry as soon as they looked at him. We thought that he just didn't want to stop. We thought that he was in pain- that he was teething, or tired or had wind. We just didn't understand why he was so miserable around other people.

By the time he'd turned two I was worried. A lady who helped at the play group I took him to in my desperate attempts to help him to socialise casually mentioned (more than once but without mentioning the "A-word" other than once in passing) that he reminded her of her daughter. I'd see the other kids his age following instructions and talking and it hurt. He wouldn't sit for story time, he wouldn't even attempt any of the singing and dancing and craft time was a tantrum filled disaster. I was worried but everyone assured me that boys take longer to do these things than girls, that my brother and cousin hadn't talked until later, that maybe he just didn't enjoy the playgroup. I mentioned that I was concerned that he walked on his toes and was told that I was paranoid because I worked with people with autism. Someone actually said to me "it's like you want him to have it". Yep, really.

When he turned two he struggled through his birthday party while the other two year olds played happily with each other and used his toys how they were meant to be played with, and I convinced my husband that it was time to look into speech therapy. He started with a lovely young lady, fresh out of university, totally unprepared for an uncooperative two year old, and I left more and more deflated every week. I understood what she was trying to do by playing with him but he didn't want a bar of it. He threw tantrums throughout most sessions and couldn't stay on task. He was assessed as having a severe receptive language delay and moderate expressive language delay and I was devastated. I hadn't realised how much he should be understanding. The speechie referred us to an early childhood screening service, who said there were certainly delays across the board. I hadn't realised that he moved awkwardly other than the toe walking. I thought that he just didn't perform for strangers, not realising that he should be able to. The report strongly recommended that we seek a developmental assessment with a view to gaining early intervention services.

You would think that with all of my concerns I would have run with this information. No. I got angry. How dare they write him off at just twenty seven months. Denial hit in a big way. I saw my dearest friend look at me with pity as I struggled to manage a total meltdown when we took our kids to see a show together. I still remember seeing the words in her eyes that she didn't say because she didn't want to hurt me when I said that we would give him a bit longer to catch up at his own pace. I wasted, yes wasted nearly six months when we could have been getting early intervention. I still cannot remember what prompted my husband to comment that something was wrong and I mentioned the report that he, in his own denial hadn't read. We were at a park watching him run around awkwardly and I commented that maybe he had a form of cerebral palsy as well as a speech delay and that I would make an appointment with the doctor. Perhaps he just needed some physiotherapy as well as speech. The word autism screamed in the back of my mind and I silenced it brutally, but I still took him to our doctor and told her that I thought there was something more than speech and that I was worried about his cognitive development. She actually said to me "You know that if he is diagnosed with (pause) autism, that there is a lot they can do for him while he is young". She referred him to a developmental paediatrician who she said would listen to me.

I spent the next two months before the appointment with the paediatrician psyching myself up. I set about preparing my husband and family for the word that would change things forever- all the while trying to ignore thinking about what it would mean for me. It wasn't until the day before the appointment as I cried on my good friend and manager at work's shoulder that I admitted that I was scared. I knew what autism was. I already loved people with autism, but I had seen the effect that raising a child with autism to adulthood had on families. I wasn't scared for him- I was scared for us. I can't even remember what she said but whatever it was, it helped and I was calm going into the appointment.

I spoke for five minutes with the paediatrician (who did listen) while he observed our son, and he said "I think you are right. He is on the spectrum, though on the mild end". He gave us our paperwork to access our funding, his receptionist took us through the steps that we needed to take to register with the autism advisory service and we went on our way.

I sat in silence in the car for a while until my husband asked if I was okay. "Yeah, it just sucks to be right" I replied. My parents rang and I said the same to them. My dad said exactly the right thing "It doesn't change a thing, he's still the same boy that we know and love and we're here for him and for you". I still cry remembering those words two and a half years down the track. And when I hung up the phone that's what I did. I just cried for my boy, and I cried for us. I cried for the road ahead and for the life that I thought that we would have. We drove for hours, because that was what we did, and still do when we need to deal with something hard. We stopped to let our newly diagnosed son stretch his legs and we both hugged him. And I cried some more. He laughed at my tears. He touched them, and he gave me a hug and a kiss, comforting me- as he still does today.

We struggled on, though by this stage we had an amazing speechie who I'd found via word of mouth. She did not specialise in autism but she was easy going, creative and "out there" and my boy LOVED her. He couldn't sit still so she worked movement, dance, singing and what I now know as sensory breaks into his session. When I butted heads with his preschool director who steadfastly refused to meet his needs because any difference in service to the other children wasn't "inclusive" she assured me that I wasn't being a "difficult parent". She used her contacts to link us up with an amazing OT, who opened my eyes in just one session to how my son's sensory world was affecting him, and for the first time I saw my son laugh and engage and talk with a stranger the first time that he met them.

We moved on from The "Inclusive Preschool" after a few more turbulent months. We just played for four months. We went to therapies. I learned everything I could about sensory processing disorder and how it related to my son and autism, and I left my job to be a stay at home mum. We began early intervention with a vengeance and in a supportive preschool environment my son thrived and was happy. We didn't see a miraculous acquisition of language, independence or social skills, though he did progress he continued to fall further and further behind his peers. A "severe global developmental delay" was added to his diagnosis and the paediatrician used the phrase "more autistic" when he saw The Bubbly One for review. We were told that a special school was the only suitable option for his education and had everything we were doing for our son critiqued as being inadequate when he was assessed for school placement. But things were looking up.

We found other parents on the same path as us, who shared in our triumphs and who were there in the dark times, not always with wisdom, but with comfort and complete understanding. New friends who we probably would never have known but for our children's shared neurology.

We found a school that's more than "special", where our son is valued and supported and has developed a love for learning.  Where he has friends, and is already surpassing everyone's expectations of him. We've found professionals, who care about our boy and take such delight in seeing him progress, professionals who have become friends and who give so much of themselves to our son.

We brought another baby boy into our family, and we have watched the most beautiful loving relationship develop between our little boys despite so many obstacles, which you can read more about in this letter I wrote.

We've grieved for the life that we'd planned- for us and for our son, and new layers of grief will be exposed from time to time. We've had moments of frustration, of anger, of helplessness and despair. But those dark times exist in such contrast to the overwhelming joy our son brings to us. The excitement and fascination as we see him beginning to speak, wanting to let us into his world, and to join us in ours. The hope as he learns faster than anyone expected or planned for. The awe when see people visibly moved when he touches them with affection, and when his laughter spreads to all of those around him. He has a power and an influence over people which is effortless and a part of who he is. We watch him teach our families, as he has taught us, a new depth of love that we've never known, and I have watched him change people's attitudes and responses to autism in a way that no level of advocacy and "educating" by me could ever do.

My dad said "Nothing's changed", but he was wrong. We have all changed. That word, spoken on one beautiful autumn day: Autism. A diagnosis? A way of life? A disability? A gift? Whatever it is today, tomorrow, twenty years in our future, it isn't what has changed us. What has changed us- all of us, is the beautiful boy that we all love so much.

The "Inclusive" Preschool

I saw something yesterday that really bothered me and took me back to a very difficult time for The Bubbly One, and for me. We were in the car driving to the shops and we drove past a preschool which I always stare at with a mixture of anger and regret. The anger part you'll understand soon enough, the regret is that I was too weak and fragile at the time to do something more, and what I saw yesterday brought all of that back again.

As we drove I observed a mother, her shoulders rigid and her face looking like she was near tears. I spotted the little girl next, and it was the awkward gait with a little jump in her step that made me look closer. I saw her raise her hand to her mother and push the car door that was open and waiting for her closed. She jumped on the spot a few times and the hand went up again, her face contorted as she screamed and cried. This probably would've got my attention anyway as it was pretty clear that the little girl was autistic, but I realised that it was only 11am and the mother had probably been called to pick her daughter up by a service that I knew from experience was not suitable to take on children with special needs.

The Bubbly One's first preschool was one that advertised itself as catering to children with additional needs. We'd been totally transparent on enrolment that he would more than likely be diagnosed with autism in a month's time. Coming from a special needs background I gave them detailed information on our son; on where he was at developmentally, his behaviour, his sensory issues and what strategies worked for him. The Director said that they were experienced at supporting children with autism and special needs and I heard the word "inclusive" a lot. I also heard a lot of criticism of other  preschools in the area, and of local early intervention services. She spoke of her own son, now an adult, with high functioning autism and told me that she understood what we were going through. We thought we had our boy in the right place, and from what we'd just heard, the only place that could cater to him. I cringe at how naïve we were, but we were in survival mode, and we just wanted somewhere to give our son the best start to his education.

A month went by and we had a diagnosis. We got some funding for intervention services and therapies. He was increasingly happy everywhere- except for at preschool. He struggled to separate and I got call after call to pick him up, not because they couldn't cope, they assured me, but because he had a runny nose (unusual when you cry apparently), or he had a temperature (but was still wearing his winter jacket inside with the heating on). Miraculously, all of the ailments they called me over were healed once I put him in my car. I was paying full fees for partial days but they assured me that it would only be a little longer before he settled into the routine and could manage a full day. I made suggestions, and they were all knocked back, because they weren't "inclusive". Anything that would involve my son being treated any differently to any of the other children was unacceptable for this reason she said.

Now there was one teacher, with whom he never had any of these issues and she left suddenly and without explanation. She was much loved by the children and parents alike and apparently people expressed that she was missed. The director sent a note home telling the parents that the staff member had walked out on the children, that the children hadn't even noticed she was gone and that the parents should stop upsetting their children by talking about her. We were warned (as we often were), that discussing preschool business with other parents would see enrolment cancelled. I knew that my son certainly hadn't moved on. He was missing his favourite teacher and he grew more unsettled each time he had to go to preschool. I also realised that she had often acted as a buffer between the director and I as our relationship began to deteriorate as I called her on what I saw as a big difference between the service she had promised and what she was actually providing. This was the beginning of the end.

I watched my son retreat further and further into himself each time he'd been at preschool. He'd sit in the car and cry silent tears after hearing the staff tell me that he'd thrown tantrums all day, been uncooperative and that he'd tried to hit out at them when they tried to force him to participate. The kids told me that he cried all day when I went to pick him up. To see him go deeper into his own sad and silent world was devastating, and the motivation that I needed to really begin to speak up. The director then told me that parents should be busy grieving at this stage, not advocating. Really.  Believe it or not, this woman had an adult son on the spectrum, and she was telling me to stop advocating for my child because I wasn't grief stricken enough.

Then the Bubbly One started OT with a sensory integration specialist and made massive progress in just two sessions. I saw my child engage with someone who wasn't family, and talk and laugh for the first time. Yet when the preschool was asked to support him in the strategies that the OT had recommended to help him to cope with preschool we were told that it was too basic and that what the director was doing was way more advanced. She also accused the OT and I of lying about his sensory needs in a bid to get him more staff support that she couldn't afford to give him. She claimed that she was not receiving any extra funding for his service, but I later learned that she was receiving enough to give him one on one support but wasn't putting the staff on. The director sent me long emails telling me how difficult my son was and how they were doing everything right. She'd write in his communication book all of the things that he wouldn't do, but wouldn't change her approach. She realised that I was keeping records of our contact and she refused to use his communication book, so I had no feedback on my non-verbal son's day other than a few stilted sentences spoken at the wall each afternoon.

In desperation one day I spoke to a friend whose daughter also went to the same preschool and learned that she too was having issues with the director. She told me that there were a lot of parents also not happy and that some families had withdrawn their kids and gotten placements elsewhere. She had a friend who worked at a preschool I'd been told by the director (who was a former employee) wasn't the greatest, even though it had a great reputation for special needs programs. She called her friend and I went to visit the other preschool the next day. This preschool was kind, caring and open. They were run by a committee of parents, and they had a great relationship with my son's new OT, who had done training with their staff in how to work with kids with sensory issues. I applied for enrolment on the spot and a couple of months later got the call that my Bubbly Boy had a spot the next year. We stuck it out until the end of third term when things became unbearable after I told her where The Bubbly One was going the next year. We had a calm but nasty showdown when I gave the director two weeks notice, and I never saw her again- she hid in the office every time I entered the building. I cut back at work and just played with my boy for the next four months. We did extra therapy and went to a play group where I met some other autism parents, and I got my happy little boy back again. 

Both of us entered early intervention and the attached preschool the next year battle weary and anxious, and we found a second home. I saw my son given 1:1 support with no resentment or mention of the cost, I saw his therapists collaborated with, and above all saw my little boy feel loved and valued by people who celebrated every bit of progress he made as though he were their own child. I was also supported and encouraged every step of the way by the director of the preschool and their early intervention coordinator as we navigated school applications, developmental assessments, and the everyday rollercoaster that is raising a child with high support needs. It was hard to say goodbye when he started school- there were tears on both sides, and when I thanked them so very inadequately for the gift they had given our child and family every day their response was "Thank you for sharing him with us".

So back to that mother I saw yesterday. I'm so sorry.

I wish I'd taken things further. I wish I'd made a complaint. I wish I'd done more than warn those I knew not to send their kids there. I wish I'd raised hell so that another parent didn't have to go through what we did.

I wish I'd stopped the car yesterday. That I could've given that mother a phone number for a better place, and I wish I could've given her some hope. Because I walked in her shoes, and when we were free of that place I just couldn't do it anymore. I had no fight left and I needed those months of play time with my boy to recover as much as he did.

A School That's More Than Special.

Tomorrow marks the end of The Bubbly One's first semester of  Kindergarten, and today we went to the recognition assembly for the first half of the year. The Bubbly One wasn't getting any awards but it was one of those occasions where families are invited to come along and have lunch and hang out with their child's class and teaching staff afterwards. They did the same thing at the end of first term and it was great fun and a really good chance to get to know his teacher and aide better, and also to meet some of the other families and our son's friends. Daddy took the day off to come along today and I'm really glad that he did as it's really hard to convey to him how things work so well there. He also got to see The Bubbly One playing with other kids his age willingly, happily and without it being facilitated by an adult! We got his half yearly report and were so pleased with his progress, and also impressed with how it was presented. Each of his goals and key learning areas have been reported on of course, as per his IEP, and with each section there were photos of our son working on each area. There was also a digital copy containing additional videos of him at work, and work he does- with a gigantic smile on his face most of the time!

I never thought that we would ever find a place where our son was as valued and as happy as he was at the preschool and early intervention service he went to last year, and then he started school. After working in post school programs for over a decade I knew which schools in our area were amazing, and I knew the ones that I would fight to keep my son away from. There was no thought of mainstreaming- The Bubbly One has a severe global developmental delay as well as autism and he needed life skills teaching as well as academics. There is a lot said about special schools, and so much of it is negative- that they isolate children with disabilities rather than promoting awareness and acceptance, that they focus on life skills at the cost of academics and that the children are effectively babysat because their potential is not recognised. I've heard it all, and sadly there are schools and units within mainstream schools that are like this. At the same time there are others, and I believe that they are in the majority, that do everything they should do, and more.
 
In preparing for school placement for The Bubbly One I talked to a lot of professionals and parents. I looked at a lot of schools, and I absolutely fell in love with one that I knew well by reputation as being innovative and a leader in special education in our state. More importantly I knew that they championed their students- that they were brilliant at tapping the potential that so many failed to see in kids with more severe disabilities. I knew many of their former students and heard the most glowing reports from them and their parents, and I'd seen the absolute joyous reaction in the young adults that I worked with when we saw one of their old teachers in the community. As I walked around that school and I saw the relationships between the kids and with their teachers and aides I wanted that school SO badly for my bubbly little boy and I was overjoyed when he was allocated a place there.

The Bubbly One is in a class of seven kids. Many are somewhere on the autism spectrum, some have Down Syndrome, some have severe physical disabilities as well as developmental delays and sensory issues. Some also have life threatening health issues. He has a teacher, a full time aide and occasionally a third person if there are students doing placements. Each child has an IEP and their lessons are individually tailored to where they are at and how they learn, and he is not only surviving the transition to school, he is thriving.

I have watched him learn and grow, seen the knowledge that we know is in his head drawn out by a teacher who sees his potential and is brilliant at teaching him new things and helping him to retain them. He comes home excited to show us what he has learned, and today was so excited to show us where he learns it. His receptive and expressive language has improved, as has his behaviour and ability to focus and attend to what he is doing. His anxiety in groups has plummeted, and yes, his living skills are improving in leaps and bounds also.

My bubbly boy, so shy and anxious outside of our home, has gained a confidence that I never thought I would see in him, and while the amazing teaching staff and culture of the school deserve a lot of credit, I truly believe that the key to this newfound confidence has been that for the first time he fits in. I never thought that he was terribly aware of how different he was from the other kids at preschool until I saw him respond to his classmates at school almost immediately, and they to him. At preschool occasionally he would have a little girl take him under her wing, but when they didn't get much of a response from him they would drift away to more reciprocal friendships. I'm sure that plenty of facilitation happens during the day, and I know that social skills are a big part of my son's IEP, but this is what I see every morning:

The Bubbly One runs into school giggling, hands often over his ears, but with a huge smile on his face. He walks into his classroom and does a lap around the room to check out who is there. I call him back and he puts his things away, and then he runs to greet his closest friends. This is a ritual I never get tired of seeing because they are friendships formed by he and the other kids spontaneously on their first day of school.

The first is a little boy who he has much in common beyond the fact that they are both autistic. Handsome little boys with tousled blonde hair that rarely gets cut, and devilish grins, they run and spin around the room together like twin tornados. One bounces on the fit ball until the other steals it and they compete for the same musical toys. Both are naturals on the iPad which reveals an intelligence in both of them that their lack of language belies. In the morning they smile and dance in front of each other and then The Bubbly One puts an arm around him and goes in for a hug, only to be pushed back out of his friend's space- and then the giggly dance resumes. This little boy has some health issues and The Bubbly One always seems to know when he is not well. On those days he will very gently put an arm around his friend, pat his shoulder and kiss his cheek. The Bubbly One also annoys the crap out of this friend sometimes and thinks it's hilarious when he is saved from the pinch, hit or bite that he has thoroughly asked for by a fast moving teacher or aide!

The next is a little girl with Down Syndrome- small, blonde and oh so cute. Determined, curious and the youngest in a family of older kids she runs rings around the boys at school. The Bubbly One goes to give her a hug and she gruffly says "No!" (her response to most things), then giggles, hugs him back and licks his hair. The Bubbly One laughs and moves on- he knows better than to take her on!

Next is another little boy with autism. Tall, thin, quiet, and with the most expressive brown eyes I've ever seen. This friend taught The Bubbly One how to point- three years of speech therapy and he learned from this friend in a month! He gives me a big smile from across the room and points his long thin fingers at me, then at The Bubbly One, then at the baby. The Bubbly One wraps him in a bear hug and squeezes, just how he likes to be hugged- and his friend's eyes look like they will pop out of his head. "Gentle hands" calls the teacher and The Bubbly One lets his squashed friend go, gently rubs his shoulder and then runs to me.

I give him the squeeze that he is craving and he puckers up and kisses me on the lips. I give him one more squeeze and say the words I know he is waiting for: "Love you buddy, work hard.". And I am dismissed. : )

 

Autism Service Provision and IEP's; Aussie Style!

I read a lot of autism blogs, mostly written by parents. The vast majority are from America and I am always struck by three things. The first probably goes without saying but I will say it anyway: we're all going through similar things. It blows my mind that I can have a crap day and get on the computer and most of the time there is a mum or dad on the other side of the world who has just blogged about the very things that have either plagued my day, or which are consuming my thoughts. I truly believe that without the internet- and particularly without Facebook, I would not cope as well as I do.

The second thing that strikes me reading other people's blogs is how much they have to fight their insurance companies to pay for vital services and medications. In Australia we complain about our health system but we are so incredibly blessed to have government provided health care. Yes, there are long waiting lists for non-urgent surgery (like my son's tonsillectomy), but when any of us are sick we can see a doctor for free. The Bubbly One has a health care card so most of his prescription medications only cost $5.60 (but we were paying $68 for melatonin!) and he gets free dental care at a disability specific dental hospital.

In terms of funding for services, in Australia children with autism are funded $12 000 from diagnosis until they turn seven (two allocations of $6 000p/a), so for the next year and a half we are pretty much set, though I watch the statements like a hawk to make sure that we don't run out. The Bubbly One is having weekly OT and fortnightly speech at present and his therapists charge his funding body for services. All I have to do is sign the forms and check the statements which are emailed to me monthly. We are very fortunate with my son's therapists. Both are very experienced, brilliant with The Bubbly One and work for themselves as part of consortiums. Their fees are very reasonable compared to larger centres, they never charge us if he is sick and misses a session, and they always give him more time than they charge for. His OT also gives me a massive discount for any equipment that we purchase from her company (usually close to cost price) and often gives him freebies. This is a rare situation and his therapists have become friends as much as supporters of our son and family.

Once The Bubbly One turns seven we get a handful of sessions (5?) part-funded by Medicare each year and our private health insurance covers 65% of sessions until we've reached $400 each for speech and OT (but for this level of cover we pay $150 per fortnight or get taxed higher for not having it). We can also get a 18-20 free sessions in total until he turns 15 (or 13, I can't recall). We could put The Bubbly One on the waiting list for government provided therapy services for when he is seven or older, but to be honest I'm not really impressed with what I've seen from them when I worked in the disability world, plus they don't offer OT with sensory integration which is what my son needs and will do for quite some time. I also get paid a very small allowance from the government that is not means tested, and it will be enough to pay for one therapy each fortnight plus a little extra, which will almost cover fuel to get there. So, even when his funding ceases we will manage, otherwise I'll be returning to the workforce!

We are also lucky to have gotten a respite package this year, something many families miss out on and desperately need. I haven't seen the dollar figures as it hasn't started yet but it will be enough to give us a break and to give The Bubbly One somewhere fun to go without us tagging along! I am stunned at the amount of parents who don't apply for respite who would be eligible, though I am in the enviable position of having worked with the people who will be providing my son's service so it's probably easier for me to trust that he'll be in good hands.

Our government is in the process of enacting a national disability insurance scheme which will provide total coverage for people with disabilities that they are either born with or acquire at any stage of their life. I am both excited and cynical about this. It will happen eventually but it's being used as a political football at the moment and it will still be years before it is fully operational. This will be partially funded by a levy on most people's taxable income and a lot of people in the community aren't happy about it, though they do support the idea of a national disability insurance scheme. No one really knows yet how any of this will work and cynical me is waiting for the proliferation of new services to emerge out there to "help" families manage their services (for a fee of course!).

So that's where we're at in a nutshell with a five year old at the severe end of the spectrum. There are also some payments from the government that we've applied for that not everyone knows about. We are able to claim some money towards the cost of incontinence items until he is toilet trained, we have been successful in getting some funding for play equipment for our home through our early intervention service (we claimed a year ago and it's being installed next week), and I was successful in claiming a one off crisis payment last year after I left work to assist us financially. We have a great welfare system here- many say it's too generous and perhaps it is, but anything we receive goes towards our son's care and I defy anyone to say that he doesn't deserve all of the support we can get for him.

Finally, IEP's. I am amazed and saddened at how adversarial this process is for so many and clearly in the USA it is entrenched in some pretty rigid legislation in order to ensure that it is used correctly and that each child's rights are upheld. I read blogs where people talk about taking their lawyer into their child's IEP meeting and I think about my son's first one at school this year, where his teacher and I (just us!) sat down over coffee and went through the process together. We laughed a lot. It was relaxed and informal and we got everything into that plan that we wanted. His OT and speech goals and plans were already being implemented and were included. Everyone was on the same page and I had (and have) final say on his goals and how they will be worked towards (until such time as he's able to actively participate in the process). It's a legally binding document, yet if it needs changing I have a chat with his teacher, or she speaks with me and we change it, without a massive production.

Perhaps this is so simple because The Bubbly One goes to a special school for kids with severe disabilities. Inclusion is not a goal for us and in all likelihood won't be in the foreseeable future. He's not fighting for limited resources in a mainstream school, but enjoys an individually tailored education in a place that is set up to help him to learn in the ways that he does best- and he's thriving there. I went into his meeting prepared to push for certain things, only to find that they were already in place because that's just what they do- because it's right and the best way to support him in discovering and meeting his potential. Perhaps this will change in the future and I'll have to unleash my inner Mama Bear (she has come out in the past), but for now school is the easy part for us.

I'm sure that there are parents in Australia with IEP horror stories (we would have had at his first preschool had I not withdrawn him), but I've sat on both sides of the IEP/IP table- both as a parent and as a service provider and I can count on one hand the number of times that a meeting has gotten heated, and to be brutally honest, I think it was more of a personality clash of the people involved and nothing to do with the person whose interest everyone was supposed to be looking out for. Maybe I haven't experienced a "real" IEP, and maybe I'm not a real "warrior" mum because I haven't needed to kick and scream for my child's rights a whole lot as yet, but I'm happy, the school are happy and most importantly my boy is happy.

P.S. If you're an Aussie and want more info on any of the funding sources I've touched on above feel free to inbox me on Facebook. Some of these I only found out about because I know people in the industry who've heard through the grapevine that something's available. Also, what I've described above is just what we access for our five year old in our circumstances and I've kept it very brief so as not to put people to sleep! Older kids and adults are entitled to some other stuff also which I may be able to help you out with. Feel free to ask! : )

I Didn't Realise- Lessons I'm Learning and Taking the Medication Plunge.

It's been a full-on month inside our autism bubble. Endless sensory seeking, not much sleep, hyperactivity and increasing hitting and kicking from The Bubbly One, The Little One has his first cold and is showing me just how amazingly settled he usually is, and we've started some planned work to our house and yard so my blog and Facebook page have been pretty neglected. I confess that I've also found myself struggling with everything going on with Master Bubble and needed to take something of a step back from everything at night (when I'd normally write) just so that I could recharge for the following day (or sleepless night).

The Bubbly One is only five years old and has suspected sleep apnoea which, along with his sensory issues, anxiety and hyperactivity, makes it hard for him to not only fall asleep, but also to get quality sleep once he's out. He had melatonin prescribed back in April (only a paediatrician can prescribe it for kids in Australia) as our first option and to get him to sleep it was awesome. The problem was that he would wake at 3am most nights (I don't consider it morning!) ready to start the day. He'd have plenty of energy from having some quality sleep and would have a great day at school. He'd get home at 3:30, or 5 on therapy days, and he'd be exhausted after keeping it together all day and would unleash until his melatonin kicked in at bedtime. Then the cycle would start again at 3am.

We'd looked at everything that could possibly be causing The Bubbly One's behaviour to increase so markedly. It was like his entire world was off balance and he was desperately trying to right it again but without success. We'd been behaviour charting since December and there was always something that could be throwing him out, but those things were becoming more and more minor as his behaviour became more and more erratic, and the sleep situation became more and more difficult. The Bubbly One has always been fairly adaptable but that was changing before our eyes, and as hard as it was to admit it, we were really struggling to cope with his hyperactivity and impulsiveness. We were doing everything his therapists suggested, yet nothing was working- and he wasn't happy.

Then for the first time we began to see some aggression from him- first at walls and doors and then at us. He would hit and kick (me in particular), and then would cry and kiss me to try to make it better. He's still small so he couldn't do any major damage to me, but he began to try to hit his baby brother, something he had always stopped himself from doing. He also has kids with severe physical disabilities in his class so I worried more when his teacher said that he had attempted to hit one of his peers. He was miserable already, but to see him so upset after he had lashed out was nearly as bad as the act itself. I conceded defeat at this point and called his paediatrician. He believed that the sleep issues were exacerbating all of the other behaviours and suggested the other option we'd discussed which was Catapres (Clonidine). He said that it should help with the sleep situation with the added bonus of it taking the edge off his anxiety and ADHD type of symptoms (he's undiagnosed but ticks all the boxes). Now, I have no issue with medication and have seen it change lives for the better. We are fortunate to live in a day and a place where science has given us an additional and very valuable tool in our arsenal to help our kids (and adults), but despite what my brain says on this one, I don't mind telling you that part of me still felt like I'd failed my son.

Before I had my kids (and until The Bubbly One started early intervention) I worked with adults with moderate to severe disabilities, most of whom fell somewhere on the autism spectrum. I LOVED it and I was good at it. That work, and more importantly, the people that I worked with made a profound impact on my life. Those young men and women, and the people working with them, made me who I am today and prepared me for my son in so many ways that I never envisaged back then. But I also carry some "baggage" from that work. Most of it is positive and makes me a better parent and advocate for my child, but some things drive me to worry and fear for his future, more so than if I'd been new to autism when he came along. One of these is my tendency to jump ahead twenty years in my brain and see the "minor" things that my son is doing now happening when he is a big and strong man. I have worked with (and been very fond of) some big and strong autistic men in my time. Most were gentle giants when they felt valued and safe, and The Bubbly One makes me smile often when he does something to remind me of one of them. But some, to be quite honest, could be pretty scary when their world turned upside down and they hit meltdown.

The thing that I struggle with, is knowing that as a professional I was always able to help the people that I worked with, yet I've been at a loss with my boy. At work I was known for being calm (and patient!) in a crisis, and for being able to diffuse a potentially dangerous situation so that there would be a positive outcome. I led a team and educated others in understanding autism, in navigating each individual's sensory issues, in facilitating communication and in preventing and responding appropriately to challenging behaviour. I did this successfully with some of the most complex individuals I've ever known. So why do I struggle so much with my five year old, who I know and understand better than anyone else in the world?

In pondering this I've had to admit that I really didn't get just how draining life as the parent or carer of someone with a disability can be. I thought I did, but until I lived it, I didn't realise how unrelenting the stress is. I didn't understand just how hard it is to care for your other children, your spouse and your home, and still be consistent in giving your child the support that they need. I didn't understand the isolation of the anxiety that hits you with every new stage of your child's life. I didn't realise that the overwhelming love that you feel for your child magnifies every high and low that they, and you go through.

My son's life, his emotions, his experience of the world, is for the most part interpreted for others by me, and it has been gut wrenching to see him so unhappy and not know what was turning his world upside down, nor what I could do to make things easier for him. It was terrifying to give him a medication, even when his paediatrician (whom I trust) said that it was safe, to wait and watch for possible side effects and to feel like I was pinning my hopes for my son on something that might make things worse for him. I watch him still, but I am starting to breathe again.

After one week he has stopped lashing out. He is sleeping peacefully- he still wakes for a reassuring cuddle at 2am but instead of thrashing around on his bed in frustration because he cannot stop moving he quickly drifts back to sleep. He is still a bundle of energy and noise, with a "witching hour" at 5pm, but he is focused at school and he is learning- and he is trying to carry over what he learns at home rather than switching off when he gets home because he is exhausted. He is trying to follow instructions and using some words to talk to us because he can concentrate and is not overwhelmed with frustration. He still lives in a sensory world, but when he seeks, it is for enjoyment, not to cope with a grievous wrong that no one understands. In short, he is happy, and I am enjoying my little boy again.