A month of 2017 has already slipped by, and already I’ve fallen behind in what I wanted to achieve by now!
As an autism parent, there’s always so many things to do. There’s a constant stream of paperwork to fill in, specialists and professionals to chase, therapies to try and implement. On top of that, there’s the just trying to get on with everyday life, work, parenting, and relationships.
Life can be a real challenge. Sometimes it seems there’s just so much to do and not enough time or energy to do it all.
One of the things on my list was this blog post! I wanted to start the year with some hopes and dreams for 2017, telling the world what I’d love to see happen for Tommy and Jude.
Jude is going to be 9, and Tommy 6 in the next few months. If I’m honest, this list is not what I imagined would be the things I’d be looking forward to and hoping for.
I thought it would be all about sports teams, holidays, culture trips, theme parks, good grades at school and making new friends. I thought we’d be working on a second language, not dreaming of our first words in English.
Instead, my hopes and dreams are much more about the fundamentals, about steps I assumed would be more than mastered by now. I realise these dreams are bigger, their impact when they come true even more life-changing.
By putting it down on paper (or screen) and announcing it out to the world, to the powers that be, to the universe, to God, fate, luck, and whoever else needs to get involved, they can help them all come true. Plus it’s a reminder to me of what I want to focus on with Jude and Tommy, and I can look back in December and see how far we’ve come.
So, here it is. Four weeks later than I imagined in my head, but no less important, here’s what I want to happen by the end of 2017.
1. Tommy will be saying singular words regularly and consistently:
I feel like this is the year it’s going to happen for Tommy. He’s been making so much progress since he started school last September (albeit with some increasingly challenging behaviours) it seems like he’s on the edge of a breakthrough. He has said a few individual words at school, such as “two” and “cooking” (I know, random right?) Yet, right now he isn’t repeating them, just saying the odd word when he feels like it.
It’s all about finding the right motivation for Tommy. The only word/sound he uses regularly is “uh” for “up” as he knows that will lead to me scooping him up and carrying him around, usually so he can get something that is out of his reach (his motivator)
He’s also got the “puh” and makaton sign for “please” nailed down, and thinks by using it over and over he can get whatever he wants!
His understanding of language has come on so much, he really knows what it is you are saying to him. I really feel this year is when his outgoing communication is going to take off as well, and when it does, the world is going to open up for him.
2. Jude will continue to be more relaxed and controlled even when having a meltdown:
Last year was a bit of a rollercoaster for Jude. We saw the best and worst of his behaviours at school and at home. By April/May he was becoming increasingly violent towards himself and to me and his mum whenever he was getting upset. His anxiety was as high as it had ever been and it was becoming a real concern. School was incredibly difficult for him last year. It reached a point where we were even considering if it was a good idea to keep sending him in every day.
Then, the second half of the year saw a huge improvement. We made a number of changes in our lives, and Jude became a much happier boy as a result. Having already separated from his mum, we were finally able to sell our house and each get a place of our own. This extra home meant that Jude could now be separated from Tommy much easier. This gives him the complete undivided one-on-one time he craves, whoever he was with. Knowing that Tommy isn’t there all of the time instantly reduced his anxiety levels, and his confidence started to grow.
By the time school started again he was in a much better place, made even better by a change of class. This allowed him to be away from his peers who he had spent the last 3 years struggling with. It was a fresh start for him, and he’s flourished ever since.
When Jude has had a meltdown over the last few months it has generally been over quickly and involved very little (if any) self-harm. At our lowest point, I never thought this was possible. I’m so proud of the steps he’s made with this recently.
So, this year I want to see a continuation of this. Seeing Jude calm and relaxed for most of his day makes such a difference. It allows him to be in a relaxed state, take more notice and show an interest in what is going on around him. Already I can see an improvement in how much he interacts with those he is comfortable with. Slowly he is starting to let down his barriers to let other people in too.
3. Tommy will use the toilet regularly:
I don’t really ever talk about this subject, but both Tommy and Jude are still incontinent and use pads. It’s definitely not something I thought I would be doing as a parent at this stage of their lives. I hope and pray it is one we can crack over the coming years.
Jude is not really close to making any change in this area right now, but Tommy definitely is. He will sit on the toilet when taken there, and he shows awareness of when he needs to go. Sometimes he will disappear upstairs to the bathroom, a clear sign he knows he needs to use the toilet. He understands the process, but often he just chooses not to communicate with us about it.
So, with Tommy, I’d say we’re close, it’s definitely something I think we can achieve soon. We’ve already discussed with school exactly when we are going to tackle it, and they are going to go all out each day to supplement that.
4. Jude will use visual aids to help him understand what’s happening in his day:
If you’ve read any of my blogs before you’ll know just how challenging it can be having 2 pre-verbal kids on the spectrum. Communication challenges are the root of most of the difficulties we face as a family. Any progress in this area will really make a difference to Jude and Tommy’s lives.
Whilst Tommy is getting close to speaking, Jude has greater difficulty communicating what it is he wants or understanding what others are trying to tell him. That confusion and uncertainty only serve to make his anxiety greater. The greater his anxiety, the more on edge he becomes, and the meltdowns follow.
So, by using visuals to back up the language that we use with him, I’m hoping to make those transitions easier for him. This is especially true when it involves something that might upset him, like his brother coming home.
5. Each week there will be some time where Jude and Tommy are together and happy:
Having to keep Tommy and Jude separate is difficult, both logistically and emotionally. Even though I spend so much time with them it’s nearly always with just one of them. I’m left wondering what the other is up to. Do they understand why they’re not with me, or when they’ll see me next?
For years we’ve had to do things like this, Jude just unable to function around his brother. Since separating from my wife it’s now even more regular that we take one of them each. And, from Tommy and Jude’s point of view, this has actually been a good thing over the last 6 months. It’s allowed both of them to get the one-on-one attention they need. It’s meant they can both be in an environment that they are comfortable in. They both seem happier and are making progress.
So, this might actually be a selfish want on my behalf, but I’d love for them to be able to spend some time together and be comfortable in each other’s company. Whether that’s at home chilling out watching tv, in the garden, on the trampoline, going swimming together; anything that allows them both to smile at the same time. I know not all brothers and sisters grow up friends, that they argue and fight, but this is different. If we could find a way for them to be happy together it would make life so much easier.
There you have it. That’s my list of goals, dreams, and hopes for 2017.
What do you hope happens for your child this year?