Remember

There is a play group I go to with my Little One every Friday morning. Based in a special place, with special people who have done much for my older son, and our family in the past. Six or seven children with special needs gather there each week with their parents. The children begin by playing with the carefully chosen toys and activities, and an early childhood teacher and an aide work the room, engaging the children as their parents watch closely and learn. They speak with the parents like friends as they ask about their week, picking up on things uttered, and things left unsaid.

My autistic toddler, the youngest in the group by nearly a year, holds a crayon and giggles as he watches the teacher making funny noises to emphasise her scribbles on the page in front of him. Just like that, he grips the crayon, and does his own scribble for the first time, and I smile in excitement and disbelief. The teacher asks about our week, and laughs at the matter of fact way in which I describe my children's rather unusual antics that week. She sees through my joking tone, she sees that my eyes wander away as I speak, she hears my voice catch a little, and she knows that it's been a rough week. She knows that I am tired, and probably feigning enthusiasm this morning for my son's sake, but she doesn't push. She respects that I know what I'm doing, and what I need to do, but also recognises sometimes my children and I just need to coast for a couple of days. We chat about The Little One's eating, sleeping, communication and playing that week. There have been some small breakthroughs I realise as I'm speaking, and the teacher also points out some things in The Little One's play that he's not done there before. There is progress there. Steady progress, despite me feeling like I've not done enough with him in the chaos of our week.

I sit with my Little One for the story and for music time, and not for the first time I think to myself that finally I know what it's like to be at playgroup with a child who wants to be there. I see my small son giggle, flap and spin with other kids who do the same. He plays roughly with the other kids and their parents are okay with it because their kids are doing the same thing. The only girl in the group chooses him to dance with to a song, and their giggles are contagious. He touches the hair of the boy next to him, and is swatted away, but later, when he runs to the door the same little boy wraps an arm around him and guides him back to the group. He has friends. He fits in, and he's happy; so happy.  

Don't look back.

I can't help it. As I sit with My Little One while we sing, and he giggles with the little boy next to him I remember Bubbly at this age, just before his second birthday. I remember, and I feel guilty for not being so content and happy being his mother back then, for not knowing what he needed, or being able to provide it.  

Those early years with my Bubbly One were lost to such loneliness, fear and guilt. If I could go back and hang out with the "me" of those days I would give her a hug, probably make her cry, and tell her that she's doing the best she can, and that her best IS good enough. I would tell her that her gut is right, but that it is not her fault. I would also tell her to cut herself some slack, because that time of denial and grief meant that she was ready to hit the ground running when the paediatrician confirmed what she had known deep down for so long. 

I would tell her that she is not alone. I would tell her that her God is with her through each uncertain day and that she is right to cling to Him. He will show His hand on her life over and over again, no matter how hard things get. She will draw strength from Him and His people.

I would tell her that there is a world with people who understand, and who are living it. That they will embrace her, and she, them and that she will love their kids as they love her anxious, hyperactive little boy. I might even tell her that her child will always be the one lagging behind, that she will watch as his peers go on to mainstream schools, that she will see them speaking, and doing what her son still cannot- and I will also tell her that the time will come where she doesn't care about that anymore. She will see him happy and confident in his own skin, belonging and valued, with friends of his own, and nothing will seem lacking in his life, as different as it is.

I would tell her that every single part of this journey that she is walking is for a reason, and though she may not see it right now, what she's learning in the darkness will help others on the same path.

I would tell her that those years of study were not wasted, that those years in management were preparation for her most important job, and that the training she worked so hard at would give her the strength and the knowledge she would need to advocate for her child and for others one day. I would tell her that her life means something, and that whether she is making money or not, she is doing what is invaluable for her family.

I would tell her that she is worth loving, and that she should be treasured by the one who vowed to do so. 

I would tell her that what she knows as "just stress" is actually anxiety, and that she doesn't have to be bound by that anymore. I would tell her that she is stronger than she knows, and that her hope is not for nothing; that though her child may stay "severe" he will never stop learning, and progressing and making her proud. I would tell her that the day will come when he will make a joke with her, that he will try to trick her, and when he will argue with her- and that she will fail miserably when she tries to be firm with him, because is so damn proud of him for expressing what he wants so confidently. 

I would tell her that a future awaits her which she will feel excited about, and that she will make a difference to many just like her. I would tell her that it's okay to look back, and to remember, because where she has been will help her to understand and support others on the same path without judgement or disdain. Where she has been will help her to understand herself, and her children; and as she remembers she will realise that it's okay to delight in today, and to look forward to tomorrow.

Guest Post by Sarah Jane: If You Read One Thing Today, Let This Be it...

Please note that this is a guest post written by a long-time follower of my blog and Autism Bubble Facebook page. "Sarah Jane" is an Australian mother of two. Her eight year old is autistic and this post is a beautiful letter she drafted to her loved ones to share the news of her second child's diagnosis. I hope you appreciate it as much as I did. -The Autism Bubble   

If you read one thing today, let this be it.... 

This is Christoph*. He is four next weekend. Today I received a phone call, and a few hours later a printed letter that confirmed what has long been known; that Christoph is on the Autism Spectrum. The letter clearly states that Christoph meets the DSM-5 criteria for Autism Spectrum Disorder (ASD). Now, before any of you post anything to say ‘I’m sorry’ or ‘I’m sure he’s not that bad’ or ‘maybe they got it wrong’ or any other well meaning, yet clearly misguided comment,please read on and take in the rest of what I am about to say.

In 2012 Christoph was identified as having a sensory processing disorder and today was diagnosed as ASD ‘severity level Moderate’ (level2). This means it is anticipated that he needs ongoing support of a “substantial” nature. This hasn’t changed since yesterday, and has been the case with Christoph for a long time. The difference, however, is that now he has access to services he was unable to access before. In Australia we are blessed with an early intervention program for ASD and today I signed paperwork to gain him access to this program. This program means Christoph can access evidence based practice services such as Occupational and Speech therapy and Psychological services, up to a set amount, to be used before he turns seven.

I signed another form allowing Early Childhood Australia to be notified about Christoph so that the process can start to see if he can gain access to additional support through school to give him the best chance at receiving an equal education. I was given yet another book on autism (one I haven’t read!)and the lovely support of our local Autism Advisor staff.

On top of Christoph getting a better chance in life because of this diagnosis he will grow up knowing he has autism. He will grow up knowing it’s okay, and he will be taught the skills by myself, family, friends and professionals to accept himself for who he is, yet strive to be even better. He WILL develop a healthy sense of self and identity that includes his autism because it is a part of him. It doesn’t define WHO he is, but it does define PART of what his behaviour or mannerisms are as a result of his neurology and subsequent cognitions.

Christoph will continue to have intensive sensory based interventions at home including the use of our sensory based play area, cloud swing, hammocks and regular runs and walks. He will continue to use visual supports, scripts, and social stories to develop his independence in brushing his teeth, dressing and other daily tasks. He will continue to have (for the most part) my patience as he takes six months to adjust to the idea of new shoes or a change in structure or routine. Christoph will continue to sleep with his companion dog Crystal who has helped him develop his speech and assisted him to learn skills in calming, and self-regulation. He will continue to have ‘thinking time’ when he behaves inappropriately and he will continue to be given the tools he needs during this time to assist him to calm and refocus. He will continue to be taught to think about thinking, about self-awareness and mindfulness. He will continue to be encouraged to try a new food that, on the first occasion makes him gag. He will continue to be rewarded with stickers when he tries something new, regulates his behaviour or any other number or reward worthy acts. He will continue to learn social skills through daily interactions where he is explicitly taught the ‘rules’ that so many others his age can infer. Christoph will continue to grow. He will continue to develop. He will continue to have support to achieve his potential.

The diagnostic pathway is long (Christoph was initially referred at 20 months old) and for over two years he has seen countless professionals and had multiple assessments for different aspects of his behaviour. It is exhausting, but it has been worth it. With the additional support of some brilliant professionals we are thankful to have up here, I am sure methods of teaching and accommodating Christoph can continue to be refined and improved.

I contemplated a facebook post for some time before I wrote this and my reason for deciding to do it is simple. AWARENESS. I am NOT posting this for ‘sympathy’ because, frankly, there is NO need for it. This is a CELEBRATION of acknowledging a part of Christoph, as you would acknowledge part of someone’s heritage or culture.

I want to thank all of those around me, especially my mum,as well as the rest of my family and friends that have supported me on this journey, attended appointments with me, or learnt along the way with me. You all mean the world to me and I truly thank you for what you have contributed for Christoph. 

This post is not designed for any other purpose than to create a bit of awareness and let people know we got there. After years of appointments, we got there. We advocated for Christoph, we repeated countless times his ‘limitations’ and we ached nearly every time. BUT we got there, and now,now Christoph can soar. So please don’t just scroll past because it makes you uncomfortable to think of someone with special needs. Don’t discount the hard work that got us to this point today.

Gain from this a little bit of awareness, understanding, or something. Share the story with a friend, speak about autism with a colleague. Raise a little bit of awareness yourself.Because the more people that know about autism- and foster acceptance, the easier it will be for Christoph to grow up knowing it really is okay. Let us embrace this ‘label’ and normalise it, come out to the world and de-stigmatise autism.For the sake of those with autism both children and adults alike.

Let us accept neurodiversity.

Thank you

XXXXXX

*Names have been changed 

Presume Competence, In Me.

The idea of presuming competence is a good one, and often the first thing parents new to this journey are told, but it is also often misinterpreted. As the parent of a child on the severe end of the spectrum (and that is not simply because he is non-verbal, he has high support needs beyond communication), it can be really frustrating to have "presume competence" said to me as a throwaway line. There is so much more to it than that. Presuming competence in my son is presuming that with the right supports and understanding he is capable of learning and developing to his full potential. That potential is totally different to most children of his age. Anything is possible, but it is a fairly likely that Bubbly will require care for the rest of his life. But his potential is the best that he can be, and the best at what he wants to be. That may not include independent living, and it may not include holding down a job one day. The usual benchmarks for "success" don't apply here, and to be honest, I really don't care about that. I know of many adults who live independently and hold down jobs who I would not consider successful human beings (emphasis intended). What is important to me for my kids, is that they are respected and valued for who they are, not for what they do.

Stereotypes abound in the autism world. As autism parents we are frustrated by them, we can be angered by them, and sometimes, they can even be a source of humour. We love memes ridiculing the whole Rain Man stereotype. We joke about our kids' collective genius at wreaking havoc (usually in very messy form), and we rave together about the ignorant things people say. We all have stories of the assumptions made of our kids based on their diagnosis, and so often they lead to people underestimating them- and underestimating us.

That's right, it's not the stereotypes of our kids that are bugging me today, it's the stereotypes and assumptions made of so many of us as autism parents. There are so many schools of thought about parenting, about autism, about disability; and within the autism community these philosophies and attitudes seem to take on a life of their own. It's safe to say that we, as a community don't do anything by halves, but I think that often, that can cause a lot of hurt, despite the good intentions that most people have.

Which brings this back to me, and the frustration I'm feeling at the moment. Actually no, I've felt like this for a while, but today I actually felt strongly enough about it to dust off my laptop and write something. I've been in a real funk the last couple of weeks. I've had stuff going on (independent of autism and my kids), and when I'm not in a great place, everything seems hard, including doing everything that my kids need. The guilt for letting a lot of things slide for a couple of weeks is brutal, but I took some time out, while The Little One had his nap yesterday, and I opened Facebook. I caught up on a lot of blog posts I had saved, I perused some pages, and when I finished I felt like I'd been put through the wringer and heard that everything I was doing or thinking was wrong, and the worst part was, that it was well-meant pieces of writing which made me feel like this.

I often come up against people making assumptions about me as an autism parent, especially as a stay at home autism parent. I confess that I'm quick to give my resume of 12 years in the disability world, management experience, and my university education (see what I did there!) so that people, especially professionals seeing my children, take me seriously and acknowledge that I know what I'm talking about. At the same time I get frustrated when old colleagues think that I know exactly what I'm doing with my kids because of what's on my resume. My doctor asks me how I'm coping, and I get annoyed that my kids could ever be considered a burden, but when people imply that I have it easy because I don't work and receive government assistance it makes me furious. Yep, I'm a walking contradiction. But while these assumptions are challenging, and upsetting, I find the assumptions that so often come from within our own community downright hurtful, and often less easy to shake off.

Anyone who knows me, knows that I never stop trying to learn how to be the best mother I can be for my kids, and I really listen to those who've walked before my kids. I love the insights that autistic adults give into things that my children can't articulate for me. I read a lot, and I listen. I love to learn, and I like to analyse the good and the not so good as it applies, not only to my kids, but to those I used to work with. I like many of the principles of "gentle" or respectful parenting, but I'm also fascinated by behaviour psychology. I'd never heard of sensory integration until my son began OT, and again, I can't learn enough. There are some truly gifted and compassionate professionals out there who I've learned much from. Likewise, other autism parents have a wealth of knowledge within them which simply cannot be obtained from a book or a website. There are so many voices out there, and most of them have something good to offer if you listen long enough.

I've been in the autism world long enough to know that lots of different approaches have their merits, but that the individual needs to be at the centre of whatever you do, and I believe that if that individual feels safe, valued and empowered as they learn, then you are on the right track. It was very easy to stand by this when I was a professional who went home at the end of each day, but as a parent, you never feel like you are doing enough, and there is always someone (usually with great intentions) who will confirm that feeling for you, and I'm really tired of that. I'm tired of seeing great, loving parents, who never stop looking for ways they can do better for their kids being beaten down, and feeling like they can never be who, or what their children need.

I like to think that I am teachable, that I am open to different approaches to raising my kids that will instill them with confidence, and which will make them feel valued for the individuals they are. But so much of what I read lately, while emphasising the value and worth, and the affirmation of that in my children, pretty much says that I don't deserve this myself. My needs are no longer important, my views are not worthwhile simply because I love and spend my life raising my children. I've read that I couldn't possibly have my child's best interests at heart because I send him to a special school, or because I take them to church, or because I take them to therapy. I've read that I've given up because I limit how much therapy we do and because I don't drill my kids every waking moment, and that my children will be a burden to society if they are not independent one day (and heaven forbid if they still need help with personal care). I'm told that I am selfish for bringing another child into the world knowing that he too could have autism. I'm also celebrated because I wasn't disappointed when my second child was diagnosed as autistic, but I can't dare suggest that I sometimes have to speak for my kids (believe me, we're working on AAC, but it doesn't happen overnight). I'm so tired of reading that I don't share my children's neurology so I couldn't possibly know them better than anyone.

Let's go back to that idea of "presuming competence" for a moment, and indulge me- I mean no disrespect but I'm about to hijack the concept for a second. Let's presume that if I am given the right supports and understanding, then I may be able to learn and grow and develop to my full potential too- as a person, and as a parent. Again, I mean no disrespect, and no, I'm not autistic, though those online quizzes all say I'm not quite neurotypical either. I have struggled with depression and anxiety at different times in my life (and I'm not in the minority). There are times where my self esteem and confidence sits around the floor- never more so than since I started this parenting gig! Being an autism parent also doesn't exempt us from facing tragedy and hardships in other areas of our lives which affect how we cope, or function, as people and as parents, and it also doesn't exempt us from needing to feel valued and receiving affirmation for who we are and for what we do, in the same way that our children need it regardless of where they're at.

The problem is though, that we autism parents often shelve our own feelings. We ignore our own need for support and help until we reach crisis point. We soldier on, though we're told that playing the martyr doesn't help anyone (and that's true), but when we want to cry out for help we listen to the voices that scream that we're letting our kids down, and that we are blaming them when we acknowledge that we're struggling. We struggle to accept compliments, or encouragement as parents without feeling obligated to be offended on our child's behalf, when usually all the person is saying is, "Hey, you're doing a great job, keep it up" without meaning anything derogatory about our kids, or about autism for that matter. I say that all the time to my friends with neurotypical kids, because parenting is hard, and their response is usually 'Thank you, I really needed to hear that today.". So why is it so wrong for us to need and accept the same validation as parents from others?

We are our own worst enemies in this community. We have so much to learn from each other, and we have so much to offer each other in terms of support. We can be a real support for each other in this journey, and as I catch up with friends who are going through tough times at the moment- with their kids, their partners, or within themselves, and as I deal with my own struggles, I see that happen every day, and I'm so thankful for that. But on a bigger scale? We need to be valuing the person on the receiving end of the message we're so passionate about just as much as we claim to value their kids, and that's tough when they're not right in front of us.

We endeavour not to make our kids feel worthless and wrong as we teach them, so how about we approach parents the same way, because at the end of the day, most are just trying to do the best they can for their kids. Whether they're our friends or not, whether they ascribe to the same philosophies, or approaches as we do, or not. Whether they're new to this world, and grieving heavily, or they're further along the road to acceptance and even celebration, let's try to provide the understanding, the supports, and the encouragement that that parent needs for where they're at right now- and if you can't do that, perhaps help them to find someone who can. It's a big internet, an even bigger world, and who knows, you might even learn something yourself.

A Chop In Time

Mention the word "haircut" to a forum of autism parents and you'll typically hear responses like these:

Parent #1. "My kids are just fine, we started young". 

There are not many like this, and they don't mean to get your heckles up with the "we started young" bit. To them you can say "That's great, you're really lucky!", and move on.

Parent #2. "Oh they're just horrific. My child doesn't cope at all. But we gave him the iPad and it totally distracted him. Have you tried that?"

I'll leave you with your thoughts about the "horror" of that one. ;-)

  

Parent #3. "They used to have a really hard time and we dreaded them and had to do it ourselves for years. It took a long time but they slowly coped better and aren't too bad now."

I love this parent. I have much to learn from them!

Parent #4. "It's horrible for him and for all of us. He melts down/vomits/faints because he just can't cope, so we hold him still and do it as quickly as we can when we absolutely have to. It's just awful to see him so distressed by something we're doing to him. We're going to have to do another one soon (shudders and comforts their child who is upset just from hearing about the subject)."

Until today this was us, and I'm desperately hoping today wasn't a one-off! 

A "HC" as it has come to be known in the Bubbly household, strikes fear into all of us. Bubbly doesn't cope with the noise of clippers, the feel of hair on his skin after it's cut, a cape or other light fabric draped over him, the feel of vibration on his head, or the light touch involved in trimming near his very sensitive ears. He doesn't seem keen on the sound of scissors near his head either. We're also pretty sure he associates the word "cut" with pain- hence the acronym we use around here, and he knows that scissors can be dangerous. He also doesn't like to be still for long or restrained (of course, who would?). 

So a haircut was something we dreaded. We tried distractions, rewards, heavy work/movement/deep pressure to help his regulation, we tried social stories and videos. Nothing helped, and with this kid the idea that "he'll get used to it if you do it regularly" is laughable. The more we did it, the worse it got, to the point where the words "hair, cut, or haircut" in his earshot would cause him to whimper, cry, and run. So when we'd psyched ourselves up as much as we could, we'd give his Clonidine at bedtime, and when he was really out, Daddy would sneak in and trim off as much as he possibly could. Even this was a fraught exercise as Bubbly would still react in his sleep to the light touch and sound of the scissors. So after Daddy did the ninja thing we'd continue to psych ourselves up, and the next morning we'd try our best to prepare him (usually making him more upset), then I'd hold him on my lap with his weighted blanket for deep pressure and to stop the hair getting on him, and Daddy would clip it as quickly as possible while Bubbly screamed, shook and sobbed his way through it. Nothing would distract him, and nothing we'd say would make it easier for him. We'd be near tears ourselves sometimes. It was horrific, and Bubbly would be really upset with his dad for a couple of hours afterwards, which was just heartbreaking for him. Then, we'd have to look at his very short buzz cut and feel awful until it started to grow out because it really didn't suit him (though he loved the feel of it and would run his hands over his head all the time once he'd recovered from the trauma!).

So Bubbly hadn't had a haircut since Christmas. It's July 1 today. He'd had a reprieve after the window incident in May as his cut (that word again!) had to heal up, so his hair was really long and very thick. It actually looks nice longish, and he's letting me wash and brush it with a therabrush without drama these days, so we were talking about how just a trim with scissors would be ideal- if only he'd keep still and let us. 

Bubbly's been a lot more settled and able to concentrate with a new medication he's on, so I thought it would be worth trying some YouTube videos of kids having haircuts to prep him a little. Foolishly, I did a search in his presence, and the first one was a clip where they used clippers and it was in a hair salon. All wrong on all accounts and he ran away crying. Then I happened to mention my search for a "trim with scissors" video to some autism parent in a Facebook community, and my wonderful friend at Suburban Mamma offered to make one with her kids for us! She sent it through this morning and after I'd watched with a giant smile for my friend and her gorgeous, happy kids, I gave it to Bubbly who watched it out the corner of his eyes until the end of the first child having his hair cut. Then he whimpered and couldn't watch anymore. I thought that was enough for now and we could build up to him watching it comfortably. 

I put it out of my mind and we had an unusually great grocery run (without his harness!). When we got home I put The Little One down for a sleep and put on the new Wiggles DVD we'd bought at the shops. As it loaded I was playing with Bubbly's very long sideburns. Playing with his hair has desensitised his head a lot, and we've been talking about just trimming near his ears a lot with him. Because he's loving the song "A Sailor went to Sea (Chop/Knee)" I've been saying "Chop" instead of "cut". Well he twirled those bits of hair with his fingers, pulled on them, looked me in the eye said "Cho!". 

"Really? Is that okay if I try?" 

"Cho." A little less emphatic this time, but still...

(Uncertainly) "Okay, lets give it a try."

I got the scissors, and he whimpered when he saw them and shuddered when they went near his head, so I stopped. I snipped a tiny bit of my own hair and showed him. Then I slowly snipped a little bit of his hair, and made a huge fuss of him when he kept still, even though he still shuddered a little and his hand went up. Slowly, but surely, he let me trim around and above both ears. I was so excited and told him over and over how proud I was of him and he bounced with excitement. We sent Daddy, his grandparents, my friend who made the video pictures and we kept on celebrating!

Then I sat on the lounge looking at him, and I thought "I wonder if he'll let me trim the back too". He did, and then I kept on going. We took breaks when he needed to, and I rewarded him with lolly snakes at each break. But over two and a half hours (and with some help from Google as I'd never cut hair before), we ended up with a full short hair cut, and one very, very proud little boy! He even held still for verses of "Twinkle Twinkle Little Star" which I sang as I trimmed the more delicate areas near his ears. I wasn't game to do the front so I left it for Daddy to style when he came to visit tonight, and what do you know, Bubbly takes the scissors off him, gives them to me, aims my hand at his head and says "Mum". 

So it looks like I'm going to have plenty of opportunity to hone my very poor hairdressing skills! I really had no idea what I was doing, but Daddy said it looks great, and that it's still better than any cut he's had before (It could've been his relief at dodging the "HC" bullet, but I'll take the compliment!). As far as I'm concerned, the huge milestone that is a calm, meltdown and tear-free haircut makes it the most beautiful hack job I've ever seen! 

SO, if you related at all to parent number four in the beginning of this post, there is hope, and now that I've blogged about it, I'm so desperately hoping this wasn't a one-off! Stay tuned!

  

And That's Okay

"My entire life can be summed up in one sentence: It didn't go as planned, and that's okay." -Rachel Wolchin

I saw this saying on a meme today. I love it, and it truly is my life. It also reminded me of the brilliant psychologist I saw not so long ago who used to finish a lot of sentences when we were taking stock of where I was at with "and that's okay". I don't know if she realises how much she says that, but it's a really nice place to be, when you can look around, look back, and look ahead, and truly feel okay, even when things are uncertain. Those were comforting words when my world was spinning, and they still are when I'm having a rough day or week and when I'm inclined to worry about what's around the corner for us.

We're in a good place right now, my boys and I, even with a lot of uncertainty ahead. For an anxious being like me, it's surprising to feel almost excited about the unknown. We're moving later in the year after we sell our house (but staying local), and my parents are moving- not locally, but a couple of hours away. Bubbly will be therapy-less for all of next term for the first time in four years, and we're jumping through hoops to get The Little One diagnosed. There's a lot happening, but I can see the positive in all of those things even though each will involve their own struggles.

Bubbly has made some really nice progress over the last few months, thanks in part to us finally finding an ADHD medication that really works for him without wreaking havoc on his body, and also due to a whole lot of people working really well together and with him, to make his life and his learning as comfortable, and "Bubbly centred" as possible. I mentioned in my last blog post (about the month from hell, read it here), that with his ADHD under control Bubbly is really able to concentrate and is looking, for lack of a better phrase, "more autistic". He's a lot more rigid and noticing things which previously he was too distracted to take in before. So we've had to be more vigilant about explaining routines to him, and we've had to be very patient with him when he gets stuck on something that might seem minor to us. While it's meant more severe meltdowns, they've been less frequent, and afterwards he seems to be able to process what's happened and debrief with me, which is huge!

Bubbly's autism is a real strength for him when his sensory world and ADHD are managed well. When his world is calm and ordered he is more able to focus on what he needs and wants to focus on. His school are amazing at teaching him in all of the ways which appeal to his brain's style of thinking and processing information, and they too have noticed a vast improvement in his concentration and learning without all of the distractions that he struggled with before. His days are still not easy, and he's had some tough moments at school and at home, but it's exciting to to see so many little breakthroughs in the midst of it all.

In particular, he's made some great gains with his communication. I am LOVING that I can have a slightly more detailed, and almost two-way conversation with my boy. Not so long ago Bubbly could only communicate about his immediate wants and needs before he needed space and processing time. Now he will sit on my lap for a few minutes to talk about his day, or about stuff that's made him happy, or stuff that's bothered him. Sometimes he'll respond with a part-word, he'll squint a little and cock his head to one side when he's thinking about something and wants to hear more, and he'll smile into my eyes and give me a big hug when I've understood him, or when something I've said has made him feel good. There's still a lot of guesswork and elimination before I work out what he wants to talk about, but he gets so excited when I get it right. It just melts me, and I'm sure he's well aware that I'm learning whole new levels of communication now too. All of a sudden I'm having to explain things in more detail to him, in ways that he can connect with, and I'm having to get back from him that he's understanding my ramblings! I'm sure he's always understood what we've said to him, but the level of thinking he's able to do now, and his speed in processing what we talk about, and his responses have improved so much. There is so much in that head of his, and he's just so keen right now to get it out, and to take in even more!

The challenge of this sudden burst in Bubbly's desire to communicate more with us is that he is still non-verbal. He can use some part words, respond to parts of a song, and mimic words when he hears them, but he needs a tool for spontaneous language, and that's where his newfound concentration has helped immensely. Bubbly has been using TouchChat on his iPad more at school and it's finally really gelled for him that he can use it to communicate with us, and that we can also use it to help us to understand him better! He's also understanding the concept across other apps too, and is having a great time "nagging" me with Tap to Talk (we're buying the TouchChat for his home iPad in a couple of weeks, it's expensive), and I am SO excited to see him learn to use it more and more.

Finally, I am seeing such a love and adoration for his little brother, and so much tolerance of, and understanding of how he is experiencing the world at the moment. Which brings me to what's consumed so much of my brain and my time lately: 

My Little One is autistic. I'm sure of it. We knew he had developmental delays, but until recently I'd been told that while he did seem to have sensory issues, and language delays, he wouldn't qualify for an autism diagnosis yet as he was too young, too easygoing, and not withdrawn enough. I was told to come back when he was two but that I was clearly doing all the right things to engage him and to encourage his learning. In the last month or so though, the traits that no one else seemed to notice have become more prevalent, and more pervasive. The staff at the special needs playgroup we attend have come to agree with me, and we've started the long process of getting him assessed for autism. We're probably looking at a formal diagnosis in the next 6-12 months depending on waiting lists.   

I've started many a post about this, and every time I've deleted it. You see, before The Bubbly One was diagnosed people used to tell me that I had nothing to worry about. That boys just take longer to learn how to talk, that they're more physical than girls. With Bubbly I was told that I was just a paranoid first time mum, that he would catch up in his own time, and that I was paranoid because I'd worked with people on the spectrum. 

It's amazing the levels of denial that people will experience about a child that isn't even their own. I've been there again in the last six months with my Little One. It's ironic that my experience as Bubbly's mother is what tipped me off to those subtle indicators in my Little One, yet those who would compare him to Bubbly tell me that there is nothing there, and that my concerns are unfounded.
"He doesn't look autistic."
"He just hasn't got the example to follow. Bubbly's like a toddler himself and he doesn't talk so he doesn't have someone to copy"
"Maybe he's just copying Bubbly, that's common when the older sibling is on the spectrum, it can lead to a false diagnosis."
"But he's so different to Bubbly."
"If he is, he's definitely high functioning."

I get it, really, I do. People know that parenting an autistic child is hard. They know how much I love Bubbly, and they see how invested in him I am, and how hard we've worked to get him where he is today. They also remember the person I used to be. They remember me being ambitious, doing well in my studies, going to university and working my way up to management. They see that I am a single parent now, and they think that another child on the spectrum will all be too much.

They think I deserve a typical child.

I don't.

I have the children I am meant to have, and to me, they are exactly who they were created to be. Made in God's image and with a purpose for their lives, they have gifts and abilities which I am so excited to see develop in them. In Bubbly I already see an incredible ability to give comfort, and to know when someone needs it the most. I'm watching the progress I've described in this post, and it makes me burst with pride; and seeing all of this in him, as my baby begins his journey, gives me so much hope for the people they both are, and will grow up to be. I also know that these boys have changed me and made me into the person I was created to be.

There is a five year gap between my boys, because we knew the odds, and we waited until we were prepared to welcome another child on the spectrum if it were to happen. And welcome he is. This precious little boy gave me a second chance. A chance to enjoy being the mother of a small baby, without the fears and constant worry, and feelings of failure I endured first time around. I wrote about Bubbly's early years before his diagnosis here, and our experience is so different this time around. Autism isn't some unknown specter, but a familiar and respected part of our world. I no longer grieve for the life we could have had. I'm quite happy with the one I've been given. I know there are incredible challenges and I know that I will always be parenting in seemingly a different universe from most parents. I know that we will have to work hard and wait patiently for those things that so many take for granted. I know that I may have to care for my boys for the rest of my life. 

The reality is, that none of us know what life will bring. I can only work with today, and focus on being the best I can be for the children I've been entrusted with, where they're at right now, and where I'm at right now. We have our tough times. Those times when I am exhausted and the day seems unending. When government support is declined for a toddler who is too young to have his therapy needs recognised without a diagnosis. When I feel guilty for not wanting to sing and dance to another children's song while my child just stands there amongst their dancing peers, or when I have to coax my reluctant toddler to do yet another craft he can't yet manage. 

There are times when I feel like I have nothing left to give, and then, just when I need it most we have our moments of beauty. A shared smile and belly laughs between brothers who are so different, yet so alike. A hug and a part-word to convey a little boy's joy at being understood after a rough day, and a toddler's first dance to a familiar tune. Our days are full of these moments, and they are timely reminders when I fall into the trap of worrying about our tomorrows. Our future is uncertain. It always will be, and it will never go as planned, and that's okay.  

Surviving The Month Of May

I was having a discussion with some friends the other day about the levels of supervision our kids require. It was prompted by a scary near-miss with a wandering child at our play group, and of course some parents were wondering aloud how the mother hadn't noticed their toddler had disappeared. One of my friends doesn't have kids with special needs and has been able to teach her kids to stay in sight of her. Another has a son on the spectrum who she has to hover over because of his sensory issues and struggles relating with other kids which can lead to him melting down quite suddenly.

Me? I make a helicopter mother look distant. Both of my kids are runners, accident prone, and have no awareness of anything but what they're experiencing or looking for. Bubbly is six and still often wears a harness while shopping, and I have little doubt his brother will need it by the time he no longer needs it. On the rare occasion we go to a playground I check the fence, I stand by ready to catch my kid as they step off the edge of a platform into nothing. I'm there when they run under the swings, oblivious to the fact that the kid swinging really high will knock them flying, and I'm there when other kids push past them because they take too long sitting down to go down the slide. Usually I'm the one being ignored or backchatted by the little darlings when I ask them to wait their turn too. I would love to sit and talk to my friends while our kids play, but that's not going to happen anytime soon.

At home I can sit, but not relax. As long as my kids are up I have to be "on". It's exhausting, and every now and then I think to myself that maybe I should leave them to their own devices and let them learn to survive without me for a few minutes. Sounds easy, right? Because you can't wrap your kids in cotton wool. You can't put a helmet on them (The Little One's physiotherapist laughed and told me he's too top-heavy), and you can't always be there to protect them. Plus, you'll become a nervous wreck.

Well, I'm not a wreck, but I suspect my nerves are still recovering from my kids' antics and incidents this month, and since I deal with traumatic events by writing about them, here's our incident quota for the Month of May!

The First week of May
It was almost time for Bubbly's bus to arrive. I have this thing about not going out to the bus in my pyjamas, even in my driveway. My life is chaotic, but I like to at least look semi-together. I was half dressed when I heard The Little One start to wail. He wails at everything. He's either happy, or catastrophically wailing, usually over a piece of paper not flapping how he'd like it to. So I didn't run to see what was going on. I quickly finished and then went to see why he hadn't stopped crying yet.

My blood ran cold. I found him with his leg trapped under Bubbly's recliner that he likes to tip and rock on. Bubbly was oblivious to the commotion and watching The Wiggles quietly on the chair. I freed The Little One and checked him over for injuries. Everything moved okay and without hysteria from him, I couldn't see any marks on his leg, and he calmed down within a minute or so, so I thought he'd had a very lucky escape. Bubbly's bus came, I took him out while carrying his brother. Then we went inside and I set him down on his feet. He cried straight away and couldn't put weight on his leg at all.

By the time we got in to see the doctor The Little One was able to walk a little when I took most of his weight. There was slight bruising, but nothing looked broken or swollen, so she gave me forms for x-rays and said only to bother getting them if he deteriorated. I made him rest and gave him lots of TLC, and he didn't deteriorate, so I breathed easier. But the overprotective, anxious part of me won out and the next day I took him for the x-rays "just in case". The radiologist told us to stay until she'd had a look, and when she returned gave me the good news that nothing appeared broken or worth worrying about and we were fine to go home. That afternoon The Little One started running again out of nowhere and didn't seem to be in much pain at all. So I relaxed and was thankful, because it could have been a whole lot worse.

The Second Week of May
Nothing major this week. I had my best Mothers Day ever, and for the first time Bubbly seemed to get it was a special day for me! We got some assessments done for The Little One (which I will post about shortly), and to my very great excitement he was given a place in a playgroup for kids with additional needs at the wonderful preschool Bubbly went to for Early Intervention and his final year of preschool. Bubbly was also in a spectacularly good place. It seemed that his new medication (Strattera) was finally settling in his system, and he was calm, happy and doing great work at school and in his therapies. I actually posted just how great he was doing and started to think maybe we could relax a bit with him.

The Third Week of May
 All hell broke loose with The Bubbly One.

Never, EVER post or share how great your child is going. I asked for it really!

Bubbly's medication has done wonders for his concentration and focus, but without the distractions his world was full of he's suddenly noticing everything. We've never thought he was an overly rigid kid when it came to routine. Bubbly was always fairly easy to distract. It was only really his sensory quirks that he would perseverate over. But with this new focus has come a fair amount of anxiety over where things are or should be, and what should be happening on certain days. It was like he suddenly got "less ADHD" and "more autistic", if that makes sense. It was fantastic for his learning, but we suddenly had to deal with a lot more meltdowns around things that weren't even noticeable to me, and our preventative strategies weren't doing much at all. He was constantly anxious about where his iPad was at all times, and this expanded to include my iPhone too. Several meltdowns were over him not being able to take them into the sand pit, or me having to check a message. School weren't having any issues, and we all thought that maybe he was just tired and letting out his stress after keeping it together so well at school.

 Bubbly's meltdowns have always been mostly noise and lots of banging the wall or furniture with his hands. If we stayed out of his way then he wouldn't target anyone. But these meltdowns brought a new depth of frustration, rage and aggression. Even more difficult was that even a tantrum over something minor could escalate to a full blown meltdown in seconds which would take 30-45 minutes to subside, and during which I was a frequent target. Afterwards he was so upset that he'd lashed out, especially the one time he pushed his brother and realised that the'd scared him.

Something had to be really wrong, so we went through all of the health related things first, and realised that he wasn't drinking much, and that his bowel habits had slowed right down. This was an expected side effect of his meds, but without enough fluid we realised he was possibly constipated, which is really unusual for him. We started treatment for that which did it's job (in "spectacular" fashion) in a few days.

Then there was the incident on the bus.

I saw on the Monday afternoon that Bubbly's iPad had been taken off him on the bus. When I asked why I was waiting to hear that he'd thrown it, but his attendant said that he was biting his buttons off his shirt and chewing his car seat. Bus staff are there for transport, not to know the ins and outs of our kids, but I didn't feel that taking Bubbly's iPad was an appropriate response to what he was doing. It had nothing to do with him chewing, and he isn't able to understand that losing his iPad is a consequence of that; and secondly, if he's chewing things then that is a sensory seeking, stress relieving behaviour for him, and not something that he actually realises is "naughty". If it was happening regularly, and I'd seen it on that other seat several times before, then it was quite possibly related to Bubbly's sudden anxiety about where every device in the house was. When I asked him about it he got really upset until I told him I would speak with his school about it- and then he relaxed visibly and just collapsed into a big hug. I love that he knew that they would understand!

So I spoke with the school who were wonderfully supportive (of course), and we put some other strategies in place to assist with Bubbly's need to chew something. A chewy pendant is working well so far. His bus driver was very apologetic and concerned that Bubbly had been distressed. He also said he hadn't realised Bubbly's iPad had been taken and promised it wouldn't happen again. He's also really curious about sensory stuff now and is asking lots of good questions, so I am educating him for two minutes each morning and afternoon. The attendant wasn't happy that I spoke with the school and ignored me for a week, but she's slowly come around!

The Little One also managed to hit his head on his cot at some point through the night this week, and woke up with a giant bruised egg on his forehead, which he also fell on later that week, landing on the tail fin of one of Bubbly's planes, making a nice cut over the bruise. I got some "nice" looks in the shops that week!

The Fourth Week of May
The Little One turned eighteen months old, so I took him for his vaccinations. The doctor asked for his x-rays of his leg. I told her that I was told there was nothing wrong so I hadn't gone to pick them up- and then I learned that the radiologist missed a tiny fracture that the doctor found the next day. Feeling like the most negligent mother on earth I went to pick up the x-rays, sent photos of them to his physio and returned to the doctor the next day. Both reassured me that there wasn't a lot to worry about and that it was easily missed. The doctor said she'd have plastered his leg had we realised, and the physio laughed, and said "Can you imagine what damage that child could do with a leg in plaster?". No one seems overly concerned though and we go back for more x-rays next month to check that he's healing okay. I'd thought I was overreacting even going for the x-rays in the first place!    

And just to top things off...
Bubbly was relatively calmer, having his routine settle down, his system "cleared" and his ipad untouched, until Sunday night as I was preparing his dinner. Arsenic hour is right before dinner time in this house, so I was relatively organised, but apparently not enough for Bubbly. He wanted his garlic bread out of the oven and cool enough to eat NOW. He'd eaten a punnet of strawberries already (great dinner, I know. Don't even go there!), and I'd managed to hold him off, though his whining was getting more and more urgent. He took issue with my choice of his usual plastic plate, and presented me with a very breakable porcelain one, which I explained wasn't safe as I put his dinner onto the plastic plate- and he looked at me, belted the fridge door, screamed and RAN.

I didn't see it, and I'm glad I didn't because the sound of breaking glass is still haunting me. Yep, he thought about it, and he charged at the window as he would a wall. The momentum must have carried his upper body into it and he was on his feet inside when my brain realised what I'd just heard. I ran to him to check his hands and wrists for blood, and saw a tiny bit of smeared blood and some hair on his hand. Then he whimpered and put his hand on his head, and I saw a long cut oozing blood. Thankfully Daddy was there at the time and one of us grabbed a clean towel for the bleeding. We did the "hospital or ambulance" debate in about 2 seconds and I called Triple Zero (Australian emergency number).

The paramedics were amazing. We'd stopped the bleeding within a few minutes so they said to relax and let Bubbly calm down and be comfortable letting them look. They reassured us that they were due to finish soon and were happy to wait as long as he needed, which turned out to be a while because Bubbly was pretty freaked out, sore and scared. We ended up giving him some pain relief and his bedtime meds an hour early in the hopes he'd fall asleep. He didn't, but he saw the bag I'd thrown together in case we had to go to hospital and decided he was going to Daddy's. We buckled him into the car where the paramedics got a good look and determined he had a deep scratch but not a cut needing stitches. They pronounced him a very lucky boy who'd probably have a good scar, but told him that "Chicks dig scars". They instructed us to keep it dry for a couple of days and call again if he grew disorientated or started to bleed heavily, then they wished us good luck with him and left.

So that was "The Month of May". Bubbly has recovered well, and he's off the hook for a haircut for even longer now- in fact, his too-long hair probably saved him from a worse cut on his head. The Little One enjoyed the excitement of the paramedics immensely, and Mummy and Daddy have almost recovered from the trauma, though we all shuddered at the sound of the broken glass being removed when the window was replaced. The Bubbly One has not charged at a wall since, and I'm desperately hoping that he has made the connection between his wall/window crashing tantrums and getting hurt. We're also revisiting the visuals that have never been particularly helpful for him in the past and hoping that his new found concentration helps him to more effectively manage his anxiety and frustration, and hopefully so that he can give us a clue about what's on his mind before things escalate too much in future.

And what have I learned? That my kids are still going to get injured even right under my nose! Seriously, this whole month has probably made me more vigilant about what my kids are doing, but overwhelming as it has been, everything could have been SO much worse. Sometimes survival is a victory in itself, and if we can look back on the last few weeks and manage a relieved smile before we tackle whatever's coming next, then I think we're doing okay.

Happy Sad

The Bubbly One is a musical boy. By that I don't mean that he's a savant, but music is his thing. Most of his vocabulary is in song form. I can give him a verbal instruction half a dozen times, and he might respond to part of it. Sing an instruction? He just seems to get it, and he acts on it, whether it's an old instruction, or a new one. Music calms him, excites him, and provides him with a link to the world. Throw his name into a song and he thinks it's hilarious and will want you to do it again, and again, and again! Sing anything from Shrek, The Wiggles or Sesame Street and he'll do his best to join in. What he lacks in words, he more than makes up for with enthusiasm!  

Music has a similar effect on me, though I cannot sing to save myself. I associate songs with times, places and people. A passing phrase will remind me of a song I know, and some songs make me very emotional. I know that there are many other people like this, but tonight I saw it in my son with a song that has always "got me", and it blew me away.

Bubbly found iTunes radio on my phone, which had a Muppets station. It turned out The Muppets were the radio DJ's, which was very cool. But then Kermit singing Rainbow Connection came on. This song is one that I've always loved, and which I have a really emotional response to. I have no idea why. I saw The Muppets movie that it was in when I was really little, so maybe it's something from then, but I digress. I paused in the kitchen when I heard it start, and then I heard it. My boy singing along, in the sweetest, most innocent tone he possesses. There were no words coming out, but the sound was beautiful and it came from his heart. After a week filled with him yelling, and occasionally screaming, all I could do was stand there in awe, and just listen.

Of course, I downloaded it straight away. And he played it over, and over, and over again. I can listen to it over and over again, so that was fine, and I sang along with him as he began to dance around the room.

"You like this song Bubbly?"
He stopped twirling and listened.
"It sah!"
"It's sad?"
"Sad"
And he began to twirl again.
And he played it again, and again he stopped twirling here:

Have you been half asleep
And have you heard voices
I've heard them calling my name
Are these the sweet sounds that called
The young sailors
I think they're one and the same
I've heard it too many times to ignore it
There's something that I'm supposed to be;

He'd stopped in front of me and looked into my eyes.

"It's sah, it sad"

I didn't know what to say. Bubbly has never identified an emotion before. He was relaxed, more so than he's been in a couple of weeks. He was smiling, and I really don't think he felt sad, but I think he was identifying that something in the song had touched him, and I said the first thing that came to mind.

"It is kind of sad, but happy sad."

The swaying and twirling recommenced as he sang along, again with no words, but beautiful pitch.

Someday we'll find it
The Rainbow Connection
The lovers, the dreamers and me.

I don't know whether it was the right thing to say, in fact saying "happy sad" was probably a pretty foolish thing to say to my autistic son, who struggles to convey his emotions. But it seemed to make sense to him, because he didn't stop at that point any more.

He just continued to twirl, and sing. It was beautiful, and I could have watched him feel that music all night.