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I care for my teenage second son. He has quite a few needs. The dyspraxia and hypermobility mean his legs can seize up, so he sometimes needs a wheelchair. He’s often in pain at night and is in and out of bed a lot, going upstairs and downstairs. His fine motor skills are limited too, so he can’t use a pen or do up laces or buttons. I’ve got used to doing everything for him. He needs someone with him all the time.
What’s harder for me is the development delay that affects him – his understanding is that of a much younger child. It got flagged up at nursery when his speech wasn’t developing. Even now he is limited verbally, he has more of an outburst – it's hard to explain...It frustrates him a lot.
Getting him ready for school is not just a case of ironing his shirt and doing up his buttons. He’s now 6 feet tall and very strong. I have to physically get him out of bed when he doesn’t want to. He can easily lash out, most of the time he doesn’t want anyone near him. He doesn’t understand his size and strength. Once he’s “gone”, it’s hard to get him back, you just have to wait…
But he doesn’t look like he has development issues. When out at a restaurant, people are generally kind when I quietly explain that he can’t say thank you, he’s not being rude when he’s looking away. I’m hoping he will wear the sunflower lanyard to flag up his invisible disabilities. We moved two years ago and people are starting to get to know him here. Some parents, who don’t have children with special needs, try to pass on their tips – it can actually be insensitive, hard to hear.
We get really good support from the NHS. We have a constant cycle of appointments. The Orthotics department at the Luton and Dunstable hospital are absolutely amazing, 10/10. They’re really understanding and will keep appointments short and sweet. They give me options when we’ve had to miss an appointment because he is dysregulated.
Dysregulated is a term I’ve had to learn instead of kicking off, otherwise I would be frowned on by those in authority. As a parent, you tend to speak freely – it can hold you back with expressing what you need to say if you have to find the official, acceptable word. On the other hand, if it means I get taken more seriously as a parent with a special needs child, then it’s good to learn these things.
His school is really good with him and the school transport makes a big difference – I know he is safe and with lovely people. And he’s popular at school, especially with the girls. He’s strong, good at martial arts and has a flair for weightlifting. When he was younger, he wouldn’t join in. But at this school, the others come to him.
My young daughter is also showing signs of hypermobility, she is triple-jointed. This means she is great at ballet and gymnastics but comes at a price – her sore legs can keep her up at night, and sometimes she can’t walk very far.
My friends say I don’t have my own life, I do everything for my kids. They are my whole life but for my own wellbeing, I love taking my dogs out for a walk every morning. It’s my time to do something I want to do; just being with the dogs gives me something I can’t really describe. My son can feed and bond with them too. I brought up our Husky to be our wellbeing animal.
Mum is brilliant with my son; they have a really strong relationship. She’s about the only person I feel can leave him with.
On Saturdays, I enjoy helping at a local out of school special needs club. There wasn’t anything like this when my first son was young. I know what the parents might have had to go through to even get their child there – and how important that break or change of scenery is for them. It’s a break for me too, away from my children. As the cost-of-living increases, I’m having to consider going back to work and this is the type of work I would choose.
My message to other carers is that there is help out there. You just have to ask for it and be prepared to go looking. You are not alone.
Also, it’s important to get respite for you, even if it’s just for the day. Sometimes this can be funded. There are now more clubs and activities for children with special needs. A swimming session, for example, might be more possible than you think.
I’ve joined Carers Voice run by Carers in Bedfordshire so that I can help them with new services and ideas.
By registering with us as a carer you will get access to a whole range of services, including advice, information, access to our groups, events and carers grants.
You can book a call with one of our support workers and talk to them about any of your concerns.
