Growing up

Jude is growing up and as his mother I need to help him do this as successfully as possible within the confinement of his abilities. I feel I have this massive pressure to not mess up as I don’t want him to get to 15 or 16 and not even be able to do his own shoes up or make a sandwich for himself without constant support.

Thankfully, Jude has recently begun to show microscopic instances of wanting to become more independent and grown up, for example he always wants to make his own toast in the morning. He is TERRIBLE at spreading the butter but at least he is trying.

Like we have with Emmeline, her eating skills are somewhat questionable and she invariably ends up with half a yoghurt down her chest and stomach but we have to persevere through this stage in order for her (and Jude) to master their skills.

This picture simultaneously makes me smile and despair. His finger strength is so poor that he struggles massively with things such as opening packets ands wrappers. He spent absolutely ages trying to open this but couldn’t even work out which bits to pull apart or where to hold the packaging. I kept having to move his fingers but ended up opening it for him as I could see he was becoming upset.

“Often, people get so used to making decisions and doing things for a child with special needs that they start to do so automatically.”

I am massively guilty of this. Always in a rush, never any time just to experience things, I nearly always do things for Jude that he is probably very capable of doing himself. I got this quote from a Davida Hartman book on supporting children with autism through adolescence (title: Sexuality and Relationship Education for Children and Adolescents with Autism Spectrum Disorders) however, I do not feel it is entirely relevant to Jude because of the added complexities his microcephaly brings with it. The tips suggest helping children understand themselves and their own unique qualities and weaknesses; whilst this is fantastic and essential for any child growing up, I just don’t think Jude is on that level in any way whatsoever. So how is he going to get through adolescence?

What I was thinking about today, relating to growing up and changing, occurred from a visit to my parents house this afternoon. It was a really hot day so mum got the paddling pool out for the children and they had a great time splashing in the water together. Rightly or wrongly, or perhaps fresh for a discussion another day, Elsa is too self-conscious to strip naked in front of anyone other than her immediate family; she’s even wary of doing so at her grandparents. She is nearly 8 years old and has started understanding the privacy of her own individual body. Jude however, couldn’t care less and would strip in the middle of a public park if there happened to be a paddling pool involved.

So an important question is, how do we go about teaching children with learning disabilities about private issues such as body awareness, teenage life and puberty? Jude is 10 now so I kind of need to work this all out pretty soon.

I will be speaking to his school to ask advice and have looked up as much information I can online but generally there is no blanket answer and it very much depends on the child’s level of comprehension.

Not even just looking at puberty, how do I take on the task of teaching Jude what it means to be a teenager? I always look at children walking around town and wonder if Jude will ever be capable of similar outings with friends. I assume not. I’m going to contact as many charities and special needs organisations to find out what social events Jude can start attending as he lacks regular social experiences and this is, of course, a massively important element of being a teenager.

The British Institute of Learning Disabilities is a charity I have embarrassingly, never heard of. But just looking at their website is inspiring and gives me hope that there is something out there for teenage Jude. It is packed full of information so I will be scouring the pages and making notes so will be sure to report back on what I find but it’s quite clear to me as to why so many people with learning disabilities end up with mental health problems. According to the Foundation for People with Learning Disabilities, 25-40% of learning disabled people also have mental health problems. Could it be because having been marginalised and judged by society their entire childhood, once they are no longer a cute little child, the minimal support they were getting shrinks rapidly to the basics needed to survive? Perhaps that is an unfairly harsh view of our social care system however based on our current experience of it, I have no other possible way of viewing the outlook.

I have this (hopefully irrational) fear that once Jude hits his late teens he will be left to fend for himself, friendless and incapable of ever financially supporting himself due to lack of qualifications. This is why I want to ensure his adolescent years are as focused as possible.

On a lighter note to conclude…Jude’s amazing symmetrical obsession continues. I walked upstairs this afternoon to find this on the landing. It’s a bit of a blurry picture however, the order goes…Gruffalo slipper, school shoe, 2 animals – 2 animals, school shoe, Gruffly slipper!!