This week has been a bitty one to be honest. One sensory review of my smallest ADHD son, coupled with the ever increasing joy of signing on and parenting classes. Let’s start with the post though, and a refusal to renew the Disability Living Allowance for our eldest son who was born with bilateral cataracts and CMV infection. He only uses one eye, so has no 3D vision and what vision he has is low contrast, with poor visual acuity. His CMV infection has left him with a strange way of viewing the world. I spent half an hour with him recently trying to answer the question, “Mimi, what would happen if you’re stuck in a queue of traffic that’s not moving and as a result of an emergency you had to go backwards?” No amount of “you can’t drive backwards over the car behind you” was an acceptable response apparently. As his parents, we spend a significant amount of time helping him to make himself understood, adjusting his environment to remove visual hazards or helping him navigate his environment when it can’t be changed and making sure his glasses are clean and in front of his eyes, not half way down his face. As a result, he doesn’t manage too badly. This is particularly true when he doesn’t actually go anywhere new very often because we’re too exhausted or broke to go anywhere new with him. Therefore, he lives in a familiar, (visually speaking), world and he is bright enough to compensate for poor vision by using his brain. This requires a huge amount of effort for him, so comes at a cost to his ability to process mental challenges simultaneously. However, he’s smart, and at the age of 10, when nothing he does at school taxes his brain hugely, he manages this pretty well too. So, when he’s assessed for his level of disability he doesn’t rate as “vegetable” and is therefore not in need of significantly more care than his peers. If you’ve already invested significantly more care on your disabled son, you will reach a point where objective analysis deprives you of the means to continue providing that support. If you’re too stupid to do anything imaginative and constructive to help your son’s mental development and your son isn’t smart enough to compensate for his visual challenges by using his brain, you can receive £70 a week to spend in Lidl to feed your baby peperami (later my dear reader, bear with me). Instead, the benefits bill is clearly being cut significantly by removing entitlement from all the smart disabled people who have found their own alternative strategies intelligently and independently.
Which brings me on to my smallest son, currently (at least) in receipt of disability living allowance for ADHD with oppositional defiance disorder (ODD). The school staff, and us as his parents, are still at a loss to identify some of the triggers that cause spontaneous combustion of smallest son. These outbursts are violent and troubling for everyone involved, so solving this issue would be handy. Suggestion has been made that they may be sensory in origin so this week we went off to have a sensory assessment. As an aside until I had actually parked the car and already committed myself to a £3 fee, and gone through to the reception desk, I did not actually know what on earth the appointment was for. A full page letter received week ago, scattered with barcodes, snowflake codes, hospital number, an NHS number and lengthy text about parking and missed appointments said nothing about what the appointment itself was actually about. It could have been bed wetting. However, as the waiting list for this is so long, Connor has worked with the Rodger bedwetting system and/or grown out of this long before the referral has come through. I called over a week ago to try and find out why we needed a paediatric occupational therapist in our lives, and spoke to an answering machine. My voicemail was later called back, but no information left. When I rang up on the day, the reason for this lack of information became clear as there was no record of anyone making the referral at all. Instead they asked if my smallest son “had issues” to try and ascertain just which ones were being addressed that day. I resisted the urge to refer the paediatric occupational therapy department to my earlier post and promised to turn up at the prescribed time and place.
So, a sensory assessment is clearly an exciting thing for a bright 7 year old to do. Balancing, jumping, socks on and off, counting to 10 with your eyes closed whilst simultaneously doing things with opposable thumbs, it’s a riot. When he discovers that the “aim” of the game is to score 3 rather than 1 for each task, it becomes an Olympic sport. This level of activity, focused on getting an ever higher score appeals so much, that all thoughts of chewing pencils, defying orders or having a mega strop are long forgotten. End result, we have a kid with strong preferences (all school food is disgusting) and extremely high activity levels, but no dominating sensory issues. His level of ability means that all available strategies, like close fitted, stretchy, “huggy” shirts will be less than useless.
Note to self, stop carrying huggy shirt to and from school each day in the hopes that one day smallest son will think it is a good idea to wear this.
I did ask briefly if they thought if they thought that the child and adolescent mental health services (CAMHS) would be able to help, but this was not only outside their area of expertise but also pretty unlikely by the looks of the facial expression I got back during the polite silence. The parenting classes I’m doing are the gateway for access to CAMHS which now inspires me even less……….
On the topic of parenting classes, my dear reader, what can I tell you? Nothing I’m afraid, I am forbidden by confidentiality to blog on this topic. So instead I will delight you with information on the geographic area immediately surrounding the location of the classes: specifically, the city’s brand new Lidl. Now we’ve had a Waitrose in town for as long as people have been rubbing two sticks together and using them to eat sushi. A Lidl is a very new addition and a long way away from the centre of town/Waitrose/the library. As I needed to get some ingredients for supper after the parenting classes I thought I’d go in and see what the fuss is all about. It was also lunchtime so I thought I’d pick up a sandwich. Once I’d walked past the opening aisles (plural) of biscuit based carbohydrate, I was relieved to hear another couple ask someone for the location of ready-made sandwiches. They were shown to the location of the deep fill BLT and cheese ploughman sandwiches. That’s it, that’s the whole range. The couple decided they weren’t interested. As you can see from the image below this was a wise decision, with hindsight. However, it turns out this was not a decision made for themselves, oh no, it was made for their son in arms, probably no more than a year old. Before I had time to think “thankfully at least one couple in this neighbourhood knows how to bring their kid up moderately well after all” the father turned to the mother and said, “oh well, let’s go and get him a pepperami then”. *sigh*
Back home I quickly fill out the online form to prove I’m looking for work. This is dutifully ignored the next day as I sign on. I ask if the job centre has any support from/access to companies that can sponsor me to get security clearance in order to be eligible for MOD contracts. At the immediately blank faced response, I pointed out that the online information makes it clear that I cannot apply myself; I need a sponsor and that personal contacts have told me that there is a six months backlog in people waiting for clearance and hence a lot of jobs available. The blank face continues to be blank. I knew this was a waste of time, it’s just too much fun not to try. “Have you tried the .gov web page to find a list of companies?” I tried to explain (again) that I know there’s a list of companies that can do the sponsoring, I wanted to know if the job centre could actually put me in touch with one of them. My question has been noted (on a post-it) for the advisor at my next appointment to help me with. We spend the rest of the 10 minutes appointment discussing my adviser’s month long holiday in Thailand he’s going on soon. I can’t wait to sign with “a member of the manager’s team” next time. Be still my beating heart.
I did get to engage my brain cells briefly at a professor’s book launch at Bath University, on the topic of manufacturing in the UK. I was able to discuss starting our own companies with a fabulously smart MBA colleague and friend and ask a former member of the government how to improve gender equality in technical industries. None of us could identify the content of the canapes, but the future of “making” in the UK looks safer than I had previously thought.
So what did I learn this week? Parenting classes, signing on, getting access to DLA and probably many other state derived support mechanisms are all much easier to access if you have done nothing intelligent to help yourself first. This seems wrong. Granted, I’ve watched parents (years ago) frustrated with their toddler’s aggression towards an older brother, who did not realise the hypocrisy of smacking him to tell him so. These parents may, therefore, be too stupid to help themselves and need state intervention. There’s a strong argument for the state being there to help those who cannot help themselves. Should the reverse logic be equally true, that those who can help themselves don’t get support when they need it? The quality of the state intervention leaves so much to be desired in this situation. The job centre may be the best oxymoron ever and the health service may be beyond repair. I certainly can’t fix either one myself, the worrying thing is that I haven’t seen much evidence that the people inside the government can either.