A little aside: I may lose a few people by posting a bible verse here, but this verse is one that sticks with me often when we're going through a difficult time or when The Bubbly One's progress seems to have stalled. I used to focus on just the heart being sick part of it which makes it pretty depressing, but I had it all wrong. Then I read a great article (you can read it here) which reminded me that "deferred" actually means that something will be coming later, not that it will never happen. I'm very impatient, particularly if we've worked really hard on something with our boy and everything goes pear shaped. But this verse reminds me that God's plans for my son and our family will come to fruition, just not necessarily on my schedule, and that having those desires fulfilled will be more amazing than I can imagine. :-)
Still with me? Thank you!
School holidays have started for my state in Australia. Normally this would have me preparing to abandon my personal Facebook to hang out on my Autism Bubble page as an act of self preservation. Although I do still have my moments, generally I'm past feeling like we're missing out on things by having a child with The Bubbly One's needs. He's happy with his life. He loves his therapies, his swimming and his respite days as much as "typical" kids enjoy their sports and after school groups, and I'd say he loves school better than 99% of kids his age! But there's something about reading about everyone's relaxing days at the park, bowling, movies, trips away and days at the beach that hits me really hard during school holidays. I'm generally a pretty positive person, and I like our life, but when we're having a tough day resentment and jealously can really sneak up on me when I see what the rest of the world is up to.
We avoid a lot of things in school holidays, in general really, but it's not because of my fear of what people will think if The Bubbly One has a meltdown. It's because I know that The Bubbly One will not cope and that he really doesn't need to "learn to cope" with that particular situation yet. A meltdown (or worse, a shutdown), isn't particularly pleasant for me, but it is excruciating for my son, and this is what I really struggle to make people understand. If my boy has reached that point of no return, then he has been stressed to his absolute limits. It doesn't matter if five minutes ago he looked like he was having a great time. Most people don't realise that a manically running around and laughing uncontrollably Bubbly One is actually starting to really stress out. They don't see that he now has tunnel vision and is totally unaware of any hazards, or anything really, around him. They don't realise that his flushed cheeks and his ragged breathing are all signs that his nervous system is under huge stress, and they don't see that the obsessive eating isn't hunger, but an attempt to calm himself and to focus on something other than the world that is overwhelming him. They think that his throwing sand or dirt, or flicking his saliva is him being naughty, and that he needs to be taught to behave, because "he has to learn somehow".
Instead, it always comes back to us being bad parents, or overprotective parents, or lazy parents who won't make an effort. Parents who let their child rule their life, or who use him as an excuse not to go to things. I'd like to think that I'm past caring about that but it does hurt. What gets to me even more though is the inability of others to consider and have any empathy for what my son is experiencing, and the inability to understand that this is what directs us when we're out, or in deciding whether it's worth even attempting something. We refuse a lot of invitations on account of The Bubbly One. We pick and choose our battles and we do our best to follow his lead. We also take a lot of risks and try things in the hope that he will find something that he enjoys. These risks may seem small to most, but for our family they can be huge and require a lot of thought and planning.
I'll be honest and say that I grow tired and anxious even thinking about the preparation and intensity of the support The Bubbly One needs just to keep him safe and semi-comfortable when we are out, and that's just to be present in that environment. Actual participation in an activity and interaction with others is often a bonus and that makes me sad even when we've managed to attend an event "successfully".
On top of his autism, The Bubbly One has a severe developmental delay. I hate throwing the word "severe' around all the time, especially as my boy has made so much great progress this year. We try to use the word "yet" when we say The Bubbly One isn't able to do something. But so much great work has been done to make people "presume competence" that it can be really hard for them to understand that some kids still need a hell of a lot of help to learn even the simplest of tasks. Add to that the sensory world in which my Bubbly One exists, and those things that most kids pick up seemingly via osmosis become huge. Even when we are somewhere that The Bubbly One is familiar with and comfortable, there is still so much work and preparation that goes into maintaining what he has learnt, and helping him to adapt to every little change that comes along.
So we watch him, we follow his lead, we break things down into tiny steps. We constantly survey the environment for things that have the potential to overload him or frighten him. His fear when it hits is all encompassing, and after five years I feel his fear as my own at times. They say that autism is like a different radio frequency, and when we are with our Bubbly Boy that is the frequency we need to be tuned into. It makes it difficult to follow a conversation or to relax. It makes it frustrating when people aren't hearing what we're hearing or seeing what we're seeing, and like an old style radio frequency, sometimes you need to find that exact place, try not to move, and incline the aerial ever so slightly to avoid the static.
I know that I am sounding very negative here, and I hate that, but it is our reality. It is physically draining because The Bubbly One is fast, he is strong and he generally needs physical help to participate and be safe. More so though, it is mentally and emotionally draining. The Bubbly One needs me to be positive and upbeat when we're out. He needs to me to be calm and confident regardless of how I am feeling on the inside. So that's what I do, and afterwards I let it out when I have some time alone. It's not all doom and gloom though. There is always the hope that he will have a great time, and when he does, and all goes smoothly the euphoria is like no other. If he loves something we will do it again, and again, and again! And when something goes well, we immediately start thinking of what else we can try. We swell with pride, and with hope that this could be the big breakthrough that will help us to do the things that so many other families take for granted. We truly do delight in the small things, and we always try to find the positive in a day, no matter what the end result has been.
But when it doesn't go well, it is bitterly disappointing. We blame ourselves for putting him in a situation he wasn't ready for, or for not knowing when was the right time to back off. The "Why?", or "What did we miss or do wrong?", and "How much longer?" questions loom. But then we do what we've always done when we've been dealt a blow and we need to process things. We go for a drive. We talk it out (I usually cry, more from exhaustion than anything). We look for the positives, and we do our best to learn from what didn't go so well. We hug our Bubbly Boy and tell him we're proud of him, and we swear to ourselves that we will try again when he is ready.
So these holidays, we may get out, or we may not. But I will try not to compare our lot to that of my friends. Instead of dwelling on what I think we're missing out on I will try to look to God, and then to focus on my family and on the blessings they bring to me each and every day of our journey. I will focus on my Little One, who makes my heart burst with every babble and giggle that escapes from his mouth; and on my Bubbly One, who lives with such joy, who makes me laugh loud and often, and who fills me with pride every single day. And I will continue to hope, and to trust that those desires will be fulfilled.
"Hope deferred makes the heart sick, but a desire fulfilled is a tree of life." Proverbs 13:12 ESV