My fears for the future for my autistic daughter

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Every parent has fears about the future, it’s natural to worry about the unknown because we want to protect, guide and support our children as much as possible and for as long as possible and the future cannot be predicted. I have the same worries as most parents – finding the right schools, finding out she’s being bullied and a whole bunch of other things. When you have an autistic child, a whole new bunch of fears come in to the picture.

Eliza likes to chat about the future, she loves to be involved and it helps her anxiety if she can openly talk about things. We’ve already been talking that she’ll go to a new School one day as she outgrows her Primary setting. She’s ten this year so we’re talking High Schools as this coming September when it is EHCP review time, we’ll also start planning for the changes to come when she’s in her final year. Now we all know there are not enough schools, let alone schools that will be able to meet her needs. Hence, we’ve already been in contact with some and are hopeful they have space for her when transition time starts but it’s a worry that there won’t be one for her.

Every week I hear of services and therapies being cut back due to lack of money. Eliza’s current school provide pretty much all she needs including speech therapy, occupational therapy and they even helped us get on the SEN dentist treatment list. But it won’t always be this easy. What will be available for her when she’s ready to leave school? What services will still exist? We already know about the fight to move from DLA to PIP, they certainly don’t make it easy that’s for sure. I want Eliza to be as independent as possible, she has already told me she doesn’t want to live at home forever and she’d like to live in some kind of supported living arrangement. Again, there are nowhere near enough of these places. I’m hopeful that more will exist, or a suitable alternative.

My biggest fear is knowing that I’m not going to be here forever. I’m not immortal, I will die one day, and I want to make sure she’s had as much guidance, love and support as she can to help her take on this crazy world as an adult. She is strong, confident and intuitive but also vulnerable. Vulnerable to those that could take advantage of her kind nature. Vulnerable to those that could manipulate or bully her. Vulnerable to her own feelings, she’s an empath and feels extremely deeply so we often talk about this and come up with ways for her to help her control the strong emotions she feels, how to process and filter through them and most importantly, how to take a step back and allow her own well being and mental health time for calm and recovery.

She’s only ten this year, but Eliza’s already overcome so much and she’s aware of how much we have to fight for services, therapies, school placements, EHCP’s. She’s a confident and very academically able child, she understands more than most people assume. I will never stop encouraging her to have her own opinion and to stand up for what she believes in because one day she’ll be doing this without me.

 

*** This was written for the Firefly blog which can be found here: Fears for the future

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