Jude has overcome one of his weird behaviours…do you remember how I said he won’t shut the car door without you walking towards him (you couldn’t make this stuff up!) Well, he now shuts it without making a big deal of it. Instead, he now shuts the door and then tells you “I did it mummy, I shut the door all by myself” in a sing-song voice.
He has also developed a weird smile. Whilst waiting for Elsa’s school bus I wanted to take a picture for the blog so told him to smile at the camera…despite retaking it about four times, this is what he kept doing:
I feel quite productive this week. Writing this blog has made me work a bit harder in terms of helping Jude with all elements of his life. So far…
- I have contacted Family Fund and requested a grant so I can turn his room into a sensory room (it may take several weeks to hear from them but at least I’ve got the ball rolling).
- I’ve attempted to contact Sibs so I can set up a social group for Elsa – I’d love to have playdates over the summer holidays for her and the siblings of disabled children in our area so am hoping they get back to me soon. Weirdly, there isn’t a phone number or email address on their website so I’ve messaged them on Twitter! I think it would be fabulous for Elsa to create networks and friendships where, hopefully, they can talk freely about their feelings. As I said before, I worry about her as she has quite a bit of stress on her back. Not just from Jude but having a disabled brother doesn’t help things.
- I’ve booked Jude in for several days over the summer holidays with the SNAP day camps so that will be something to look forward to, plus it adds to his socialisation experience.
- I’ve arranged a few dates with Jade over the next couple of weeks as he still asks to see her literally every day! I think she is going to be a massive influence on him as he nears his teenage years; she is the key to giving him “normal” experiences without having to hang around with his mum…which ten year old would really want to go bowling with his friends and his mum! Jade is a way cooler option.
- I contacted Special Kids in the UK as well to find out what they do. It’s too late now but they have a fabulous camping trip every summer but they also have day trips, social events, etc. I’ve registered our details and joined the forum 🙂
- I have offered my support to Jude’s school in whatever capacity they could use, whether it be working on the PTA, writing emails and letters to local businesses to gather sponsorship for events or even just sorting the filing cabinet out. I haven’t heard back from them yet but I guess they are going through the end of term craziness we all experience.
Think that’s it actually. So hopefully we will start to see some results from all this contact, fingers crossed.
Something related to lots of my previous posts but incredibly important nonetheless is discussing isolation. I have touched on the subject through my discussions on jealousy and how it’s difficult to go out to events sometimes with Jude alongside us. We’re so lucky that on these occasions, my parents are happy to look after Jude so it is possible for us to take the girls out to places that aren’t Jude friendly or where he’ll just be a bit of a nightmare. Lots of families do not have this and I honestly cannot imagine how they cope.
Contact a Family undertook research looking at isolation amongst families of disabled children (http://www.cafamily.org.uk/media/381636/forgotten_isolation_report.pdf.)
It’s five years old however, I imagine the results are still indicative of current feelings. Here are their findings in brief:
What is the impact of isolation on families with disabled children?
- 72% experience mental ill health such as anxiety, depression or breakdown due to isolation
- almost half (49%) have felt so unwell that they asked their GP for medication or have seen a counselor
- 57% say lack of support means they are isolated and not able to work as much as they would like
- 1 in 5 (21%) say that isolation has led to the break up of their family life.When do families feel isolated?
- 65% of families with disabled children reported feeling isolated frequently or all of the time
- 64% reported feeling most isolated when their child was first diagnosed with a disability
- 43% said that they felt most isolated during school holidaysWhat are the causes of isolation?
- over half (56%) felt that the cause of their isolation is due to a lack of support from statutory services such as social care and education services
- 54% said that not having the time or money to do things that other families do makes them feel isolated
- 50% said that their isolation is a result of the discrimination or stigma they experience
I’ll elaborate more on this at a later date as it is something I sense is such a huge topic of conversation and one that people without disabled children really can’t comprehend (understandably). It makes me MAD how Councils and Local Authorities create such a nightmare for families just to gain a bit of support, a bit of respite and care for their disabled child so they can access the wider world and NOT feel so detached and isolated. I know from experience how hard it was for me to get those 95 hours of support from our LEA. I had to fill in so much paper work, hassle the social care department on a daily basis and bombard my Social Worker with emails. I’m a fairly literate, intelligent person and I found it difficult; I can only imagine how hard people find this sort of trauma if they are less able, completely disabled themselves or if they work long hours. I actually want to try and set up a support network for these sorts of people in my area – help them fight the council so they can actually get help, feel like they have some self-worth and lead as normal a life as possible. If anyone has any idea how I could start this, then I’d love to hear from you. A x