The biggest thing that worries me is a thought no parent wants to have

Every single parent goes through moments of wondering what the future holds for our children. For some it is about college, University or employment and for others it could be wondering if they will get married, have children of their own. Those are daydream moments you get that leave a smile on your face. I have a child that has Autism, her learning disabilities classed as ‘moderate-severe’. As much as she improves on a daily basis with her social skills, understanding, communication; it’s unlikely she will live alone and always need some level of support and supervision. It worries me all the time, the future. For the time being she spends most of her days at school, loving being with friends and learning what she can. There will one day come a moment that scares me, the day she becomes classed as an adult. Long before then I will do my best to plan with her what she wants in the future but things change all the time.

“They finish school and do what…”

Services for adults with autism in the UK seem to be a postcode lottery with some areas having great resources and support, others having none. I have friends with older children who have now left school and have nothing in place because respite spaces are tight, funds constantly reduced and generally all services being cut or restricted. So the young adult ends up at home, with parents trying to fight a system that gets harder every year. What does the government expect the parents to do? Leave employment and take care of our children/adults relying on the pittance carers allowance they pay (£62/$81 a week for full time around the clock care). I know there are other benefits and financial help out there but the point being these children will one day grow up in to adults. Autism doesn’t go away, it is a lifelong condition. They finish school and do what? End up at home because of cuts to services, placements and support. It worries me, a lot. Eliza is only 7 years old so a lot can change in the years before she is legally an adult. I sincerely hope there will be more services in place by then.

“What happens when I die…”

The biggest thing that worries me is a thought no parent wants to have. What happens when I die? Who will take care of her? Will she manage without me? Who will understand her like I do? I could go on and fill this entire blog with questions that have gone through my head. She has a wonderful bond with her younger brother already and I know he will always be a part of her life but he will have his own life to lead. I would never expect him to take over her care in the future, even though I am sure he would. Sometimes I can’t sleep because of this question, what really will happen….. I have seen other bloggers write about similar thoughts so I know it isn’t just me thinking these things. We all worry for all of our children regardless if they have Special Needs or not but for those that are extra vulnerable, it sits at the back of your mind all the time.

“I push her comfort zones because she needs it”

 

Friends often comment about how much I do with Eliza, how we have tried so many different things already – ballet, gymnastics, cooking club and horse therapy to be a few. Why? Because she doesn’t willingly offer me information on what she wants or needs sometimes so all I can do is try things with her and expose her to new experiences. I test her boundaries and I push her comfort zones because she needs it, she needs to learn that the world will do this to her for the rest of her life. As much as we try and maintain a great routine, I often break it in the hope to show her that it’s OK when things do not go to plan because, let’s face it, life doesn’t always go to plan. If she can learn coping techniques and how to be a little more flexible, these will be great for the future for her. I will always try and show her new things, to keep teaching her about life. I read something on a Facebook page last year that has stuck with me ever since. It was a picture of a young lad and the words read something like “The greatest gift I can give him is to teach him how to live without me”. It hurts to read and type that because it hits home. One day we won’t be here for them, they will go on to face this world without us. We can hope services and employment opportunities will be there and that somehow a support network will guide them through what they need. So for now, I test Eliza’s flexibility and I try and expose her to new things. I help her come to terms with change, learn to cope with it. I push her boundaries so that she becomes used to different scenarios, situations and problems even now at the young age of 7. I hope to keep giving her the support and courage to try new things and live life to the fullest. This is all I can do as a parent because, like that post om Facebook said, she needs to learn to one day live without me.

ba-toddler-to-6

 

 

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Author: Julie Clarke

Mum to 2 children - Eliza diagnosed ASD at age 3. Younger Sibling, Noah. I run a Facebook page called 'Living with Blooming Autism'.

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