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Stories About Autism

7 hopes and dreams for 2019

January is the time of year where you reflect on the past, and make plans for the future. Autism parents are no different, only the main focus, like most of our lives, tends to be tied up in our hopes and dreams for our kids. How we hope the coming year will be a better one for them, full of smiles and progress.

I’m a big believer in making goals, writing things down, reviewing them and working on making them happen. So I’ve set out some things I hope will come true this year. Things that will change our lives, steps forward we can take as a family.

1. Jude to continue being more social.

2018 was a massive breakthrough for Jude. The boy who’s been anxious around other people, and especially other kids, visibly let his guard down.

I first noticed it when we started going to a special needs swimming group on a Saturday.The first few weeks he would tense up every time another child came near him and would retreat to the corner of the pool. Gradually each week he began to relax, and even start paying attention to what the other kids were doing.

Now he watches them, smiling, doesn’t shy away, even splashing with one boy a few weeks ago. It’s the same at school as he’s now able to sit at a workstation in a group, engage in more activities, and even interact with some of his peers.

It’s been a long time coming, and something I’m excited to see blossom even further in the year to come

2. Tommy to speak more regularly

If I’m honest I thought this would have happened by now. Tommy has said a few words, but they can be weeks apart, and sometimes are never repeated. He seems so close, that the words are all about to come tumbling out, he just doesn’t seem to be able to take that last step.

His understanding of language has increased immensely over the last year, and he seems so frustrated that he can’t get the words out. I just really hope that this is the year the real breakthrough happens for him

3. Jude to use technology to communicate

Jude has been using PECS at school for 6 years now, and it’s been a real struggle for him. His understanding is starting to improve, but he often gets frustrated quickly, and his motor skills fiddling around with the Velcro are sometimes a problem.

This year, along with the support of school, we are going to trial using an iPad and a communication app. Jude seems to have no issue understanding how an iPad works, and can navigate his way around YouTube no problem. I’m really hopeful that combining technology and PECs will see his ability to communicate open up, and make life so much easier for him.

4. To spend more time with Tommy and Jude together

For the last 3 years Tommy and Jude have lived apart. I look after one and their mum looks after the other and we swap every couple of days. Both boys need 1-1 care, and Jude’s anxiety has made it near impossible for them to be together for very long.

But, with the progress of the last year, Jude’s increased tolerance around other children, and the steps forward I hope we’ll make with their communication. I’m hopeful I can spend more time with the 2 of them together. If we could just all be in the same room, and be happy, even for an hour or two, that really would be an amazing achievement.

Then maybe one day in the future they’d even be able to have some kind of relationship together. A friendship even. We’re a long way from that right now, but if we can spend some happy time together that would be the first step!

5. That I’ll find a way to help Tommy control his anger

Whilst there were many things to celebrate last year, 2018 also saw a real increase in challenging behaviour from Tommy. We kept a diary, had it analysed by a behavioural team, and with the help of their OT’s put a plan and sensory diet together for him.

This worked for a few months, but recently things have deteriorated in that sense, and life has become very unsettled. From the constant screaming, to climbing and jumping off furniture. From throwing and breaking things around the house, to lashing out at me or his mum, things have been pretty challenging.

We’re currently awaiting further assessments, I’m sure Tommy may receive further diagnoses this year. But what I really want is to find a way to lessen his pain, his frustration, and help him reach a more consistent relaxed state. When he does he’s a clever, inquisitive, loving little boy, one who’s desperate to grow. My main goal for him this year is to find a way to make that happen

6. That I’ll be more organised

This one is purely me! As any special needs parent knows there always seems to be a never ending to-do list. Mountains of paperwork, appointments at school, appointments with professionals, therapists, social workers. The list goes on and on. That’s without thinking about work, home, or any attempts at a social life. When I look and see that mountain and know I’m running from one thing to the next it only adds to the stress.

So to make my life better I’m going to tackle that mountain, get organised, and stay on top of it for the rest of the year!

7. To focus more on my own wellbeing too

With all the focus on trying to do our best for our kids on a daily basis it can be all too easy to neglect ourselves. Autism can often mean isolation, sleepless nights, a lack of free time, and the feeling of it being groundhog day.

Finding time to do something we love, see people we enjoy spending time with, is all so important. It can help give us the strength and patience that we need to be the parents we want to be. Whether that’s going out for a drink, a coffee, a run, watching Netflix, reading a book, whatever you want to do, do it.

For me, I know exercise is so important. Even when I’ve had a lack of sleep, getting up and out and doing something really does make me feel better for the day ahead. Recently that’s been in the form of going for a run, or doing yoga at home. I need to make sure I keep that up this year.

Feeling isolated and alone is a horrible way to feel. I know what it’s like to keep everything inside, and to avoid social interactions. It became a slippery slope for me. Luckily for me, this blog enables me to speak to people all over the world who are part of the autism community. Sharing what life is like, listening to other’s experiences. It helps me know I’m not alone, and more confident in what I’m doing each day.

I’m also going to try and let go of any guilt I feel about doing things for me, about spending time away from my boys, and make the most of it when it happens. Every parent needs a bit of ‘me’ time. It’s a chance to have fun, forget any of our troubles for a while and just re-charge our batteries. I know I always feel much better for it afterwards.

So that’s what I’m hoping will happen this year, if I can look back on this post in 12 months time and see all of these ticked off I’ll be a very happy dad indeed. What do you hope will happen in 2019?

*For anyone who thinks they could do with some extra support, here’s a link to the Stories About Autism Facebook Group. A place where parents, autistic adults, family members, and professionals can share stories and ask for advice. 

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