I actually already wrote this blog post a couple of days ago but my daughter whacked the keyboard and somehow it vanished from cyberspace. I’ve sulked about it for a while so I will try and reassemble it from what I remember!!
I wanted to explain some of the side effects of Autism Spectrum Disorder, side effects that happen to the whole family not just Thurston. Autism has affected our lives in lots of ways that people wouldn’t automatically realise and it always helps when someone is understanding of the situation, so I’ve put together a list of 4 issues we face in our family that are ripple effects of Thurston’s diagnosis.
#1 The other 3 children have nothing in the house that is truly ‘theirs’. As far as Thurston is concerned, everything is up for grabs whether it is his or not. It’s very difficult to expect a 10 year old and a 7 year old to accept that they can’t be attached to their possessions. This also means that we don’t really let them have very expensive items as we can’t take the risk. Not only does Thurston take the other kids’ stuff whenever he pleases, he is also constantly breaking things. It doesn’t matter if it’s a brand new birthday present or a Lego masterpiece that has taken hours of construction, if Thurston wants to see what would happen if he throws it down the stairs or flushes it down the loo then it’s gone.
#2 Money. I remember when he was first diagnosed that several people made comments to me about ‘all the money’ we would receive and how we ‘must be loving this’ because he was entitled to Disability Living Allowance and I could claim Carer’s Allowance. I don’t know if those people had actually checked the figures on these benefits but it hardly seems like I’ve won the lottery. There are a lot of costs involved with having a child like Thurston. For example, last week we had to replace his school uniform because he didn’t know he had pooed and it had covered his back and his school clothes. I have to replace the teats for the bottles he drinks his formula from monthly because he chews through them due to his sensory issues. They cost £4.49 for 2 and he has 6 bottles. He suffers from Pes Planus and so I have to buy him high-ankle supportive shoes as his insoles push his feet out of normal shoes. When we were looking at schools for Thurston we naturally tried to get him into the same school as our other boys. The school was completely unhelpful and really disappointed us. They weren’t willing to fund a care suite for him and instead insisted I would have to go into school to change his nappies. We found a school that was excited to have Thurston and enthusiastic to take on all his challenges. Although it is a mainstream school, it is affiliated with the local special needs school and is specialised in inclusion. The downside to this is that it is physically impossible for 1 person to do the school run. There is no help available with this at all. Alex had to go part-time at work to help with the school run, which inevitably makes money even tighter. The benefits associated with Thurston’s disabilities do not even cover the costs combined with the loss of earnings.
#3 I’ve had to sacrifice working for the foreseeable future. With my other children, my husband and I worked opposite shifts to share childcare and I took pride in the money I contributed towards the household. The odds of finding a job to work around the school run (for which I can never be even a minute late as it triggers a meltdown), appointments, meetings etc plus actually being a responsible, professional employee after staying awake for 40 hours is near impossible. Nowadays, the only money I earn is my Carer’s Allowance. Carer’s Allowance is currently £61.35 a week. I’m sure a lot of people don’t even think I should get that considering Thurston attends school full time. However, I am awake when Thurston is awake, he is not safe to be left alone when awake in the night. So if he sleeps from 8pm-1am then I am awake from 1am and that’s that. I also have to complete bundles of paperwork for everything that he needs whether it be DLA, TAF meetings, care plans for the school Medical Officer, Blue Badge applications etc. No one ever sends out appointments they are supposed to, so another chunk of the week is spent on the telephone to receptionists/secretaries to chase up important appointments. Then there is the time that the appointments/meetings take up. For example, next week Thurston has Physiotherapy (a weekly appointment), an Occupational therapy appointment, I am going on a course about Challenging Behaviour, he has a dietician appointment at the hospital, and we have a Team around the Family meeting at school. Then we have to do the therapy ‘homework’ wherever possible at home, making sure he bounces on the trampoline for his core strength, practicing Speech Therapy exercises with him etc. He is not toilet trained so at 6 years old we are still changing nappies plus he needs specialist formula and medication to be administered. If you add all this together, I’m pretty sure the hourly rate from the £61.35 Carer’s Allowance would be a bit of an insult.
#4 I find this really hard to admit but sometimes I really struggle with the embarrassment that Autism can cause. I’m not the type of person that enjoys attention and find the stares, comments and tuts from the public really hard to take. The difficulty with Autism is that it is an invisible disability and that the symptoms can be interpreted by strangers as ‘naughtiness’. If we are out and Thurston is screaming, laying on the floor, shouting “bloody hell” or hitting me, then I can’t help but feel embarrassed. I’m only human! Sometimes, I can embrace the situation and have ended up doing some bizarre things to placate Thurston when we are out in public. I have sat on the floor in the middle of a Primark aisle because Thurston has been upset that I have been feeding Indigo and he wants to be a baby too. I know my eldest son can be really embarrassed by some of the stuff Thurston does, one of the worst being throwing chips at an old woman in Pizza Hut, whereas I think my middle son is just jealous that Thurston can do and say the things that he wishes he could!
We’ve adapted as best we can to cope with these challenges and I think we do pretty well on the whole. All the hard work and exhaustion is worth it when I look at the joy on this little face when he’s having a good day!