Our Time Will Come

I love my life and I'm thankful for all that we have, but that doesn't mean that I don't feel a little cheated watching all of the happy families on their holidays on my newsfeed today. I know that things will get easier and our time will come, but today it just hurts.

 

I posted this on my Autism Bubble Facebook Page today in the middle of what amounted to a pretty impressive pity party. I'd already started writing this post though it's taking a bit of a different angle now, and I meant it. I do love my life and I am grateful for all that we have.

 

I swore at the start of the holidays that I wouldn't compare our lot to that of my friends' because our world is beautiful, just in different ways. I promised myself that I wouldn't let myself be dragged down by my newsfeed full of smiling families at the front of theme parks, of the updates saying how much fun they were having, nor of the "I'm so exhausted, what a huge day" posts and pictures of their dinners out each night. And I wasn't. I was actually enjoying the posts and interacting with my friends who also work hard and deserve a great holiday. 

 

But today it all got under my skin. I wanted all of that so badly for my family, and I really wanted it for me. And it hurt. A lot.

 

It's been on my mind a lot lately that we live in a very different world than our friends and family, and it's something that Daddy and I were discussing just a week ago after a rare night out. My wonderful parents had The Bubbly One for a sleepover so that we could go out for dinner, catch up with some family who were visiting from interstate, and have a bit of a sleep-in to recharge for the week ahead. The night out was fun. The Little One slept peacefully in his pram for most of it and we got to talk, laugh, eat our meals slowly and actually be "present" for a full night's conversations. It's the little things that we have come to appreciate in this life of ours, and those conversations really opened our eyes to that. My husband commented afterwards that he feels like we live on another planet to other parents. His cousins talked of cruising holidays, of new cars, of expensive shoes and clothes, of boats, motorbikes and motorhomes- what my husband refers to as "toys", and what he also gets to hear about constantly in an office full of men without the responsibilities we know.

We have a beautiful home, we live comfortably, though with a decent amount of debt, and we're very fortunate to live in a country with very generous provisions for our son compared to what so many others I know receive. But we've made the choice to have me stay at home with the kids, and on a single income we can't afford "toys'- nor do we have the time to use them. After talk about our new (used) car we were asked about the next holiday we were planning and asked had we considered a cruise, and we changed the subject. Our last holiday was a near disastrous weekend away for Mothers Day, and since then we just haven't had the money (or the energy) to try again. We resisted the urge to school them in how different the autism family's life is. We just listened, smiled and nodded a lot, and afterwards in the car we reflected on our life.

Perhaps it was my resolve to see our blessings, but as I said to my husband that night, and as I posted on my Autism Bubble page, I wouldn't swap. I like my life, even with it's struggles. We gain more satisfaction from a followed instruction, or a new word than I would ever gain from having my nails done regularly. A milestone met after years of therapy will trump drinking on a ship somewhere any day, and seeing our son happy, thriving and learning at his amazing school brings us more joy than any of those "toys" ever could. We will have our time one day. We will have opportunities to travel, with or without The Bubbly One. One day we will be able to afford some of those things. But for now, our family is where our happiness lies, and I wouldn't have it any other way.

Which brings me back to today. I didn't realise what it was that hurt so much, but my husband did. I ranted and raved about how our family deserves a fun holiday too, and he gently pointed out the one that I wasn't referring to. One of the holidays in my newsfeed was some old work colleagues, and their trip was different to the others: No family, no kids, no responsibilities for a few days. A chance to escape our world and just be me. It wasn't the holiday itself that I was bummed about, it was the loss of a part of me. A younger me, and a more carefree me.

I'm okay with not working and having a career (and that was a big ego boost for me once because I was good at what I did). I'm okay with missing out on holidays and material things. But I'm different now and sometimes I miss the old me. I miss being able to hold a conversation without autism buzzing in my head and whispering in my ear. I miss being able to go somewhere and not see every little thing that would aggravate a sensory issue, or automatically seeking the easiest exit should things go badly. I miss the chance to laugh until I cry with my girlfriends and not have to be the responsible one all the time. I miss just being, not doing and not thinking.

Tonight I am better. I sit in the quiet, with my best friend and soul mate snoring softly on the couch nearby as I write, just to be near me. My boys are sleeping peacefully. I checked them a moment ago, and watched them as they slept, amazed that I have been entrusted with not one, but two boys so precious. Our world is different, changed by the little boys we have been blessed with, and that world has it's triumphs and it has it's sacrifices. But we will travel that world with thanksgiving, and one day, our time will come.

  

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.