When I first discovered my son Jude was autistic, I have to admit I found it really tough. He was just 18 months old, the future I’d imagined for him, and for us as a family seemed to like it was being ripped away from us.
I focused on the fears of what the future held.
Would he ever talk? Would he ever make friends? Would he ever be able to look after himself?
Over the next few years, things would get harder.
Jude’s younger brother Tommy was also diagnosed at 18 months old, and suddenly we are challenges seemed to have doubled.
The world was so unfair, what had we done to deserve this?
As yet unable to speak, there’s been meltdowns, self-harming, a severe lack of sleep, sensory issues, anxiety, and at times quite an isolated way of life.
In the early days I really struggled, I kept it all inside and rarely spoke about it, and whilst I was always full of love and did everything I could for them, deep down I was so upset about how difficult life was proving to be for my boys.
As time went on, as I learned more about autism, more about my sons, I started to get stronger.
Started to focus my energy on finding ways to learn from each challenging experience, to make life easier and better for everyone.
It’s not been easy.
There’s been a marriage break up in there too, and my boys struggle so much around each other that for the last few years me and their mum have looked after one each, and swap every couple of days.
They both need 1-1 care, and this is what we’ve found seems to work best.
But despite the rollercoaster of the last ten years, I am able to realise that I have much to be grateful for.
1. Both of my boys are physically healthy: Yes there might be meltdowns, and challenges coping with the everyday world, but they have no illnesses. They’re healthy, I’m healthy, and hopefully, we all will be for a long time to come.
2. The boys go to a fantastic school: Many families of children with autism or other special needs really struggle to find the right school setting. Often they might fall into the gap between mainstream and specialist provision, with neither being the right option. Some families have little or no choice and find themselves stuck.
I’m grateful every day that we’ve been able to find the right environment that both pushes them to learn, but is also full of love and cares for their wellbeing.
3. I have support from friends and family: My heart breaks every time I get a message from somebody who’s doing this alone. This life is tough to balance, and that’s with friends and family who are there to support me. Some parents I speak to haven’t had a night off in years, let alone get any time to do something for themselves.
4. Since diagnosis we’ve had support: I know this can be a lottery dependent on where you live, or when you received your diagnosis.
But overall I’m pretty happy with the support we’ve had over the years.
It could have been better, but I also know from speaking to others it could have been non-existent.
We were lucky to get a diagnosis so young for the boys and to be in the system ever since. Whilst there aren’t too many options when it comes to activities locally for the boys, we’ve generally not had to wait too long to see professionals, and have attended a number of courses.
I know this isn’t the case for many, for that I’m grateful.
5. We live in the UK: Whilst we might complain about the lack of support, knowledge, or education options available to us, sometimes we have to look at the world as a whole and be grateful we live where we do.
Imagine living in a country that had suffered a natural disaster, like Mozambique, Zimbabwe or Malawi have recently. Imagine living in a country that has no special education set up, no support system, and a real ignorance or complete lack of knowledge around special needs.
If life feels tough now, imagine your family living in that situation.
6. Both of my boys are making progress: It might not be at the same rate as other children their age, the steps might be smaller than I imagined years ago, but they’re making progress.
Life is very different than it was 2 years ago. Life’s very different than it was 5 years ago. Progress might not be linear or straight forward, but overall things are definitely getting better each year.
Our family is one that’s full of love, and for that I’m grateful
Life as a special needs family isn’t straight forward, and very different than what I imagined it might be.
There are still many challenging days, but whenever I start to feel low, I try to focus on what I’m grateful for. It works for me, maybe it will work for you too.