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.
Monday, 15 July 2013
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.
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.