Saturday, 28 June 2014

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.