Followers

Monday 12 August 2013

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.





   









No comments:

Post a Comment