This is the reality.

I often get asked what I’m doing/have done in the weekend. Usually it is nothing. Or I answer listing the chores I have done. This is my life as it currently stands.

Let’s take this long Easter weekend, for instance. It is a 4 day long weekend. While others are camping, eating out or enjoying water sports, I was at a Marxist Convention in the city – an hour train ride away.

It was held over 3 days and was a series of 1.5hr long talks and commentary sessions, from 9.30am til 8.30pm. It was hard going for my brain, which has been away from Marxist terminology for 15 yrs. I went, simply to chaperone H, who has no street wiseness. I did it because I love my son and his current interest is Communism and Socialism. Why would I not take him?!

I had to answer his questions, remind him to eat and drink, keep him grounded and assure myself he still had his belongings. I was on high mental alert the three days and I came home so taxed that I was asleep by 8pm. H is sometimes so anti social that he just ignores those who speak to him. I had to keep him civil enough to ensure a polite interaction went by as quickly as possible.

Then yesterday was D’s normal prophylactic injection day. I inject a product called Factor into his vein twice-three times a week. D is supposed to be testosterone tidden so his veins will pop up. This isn’t happening because D uses food to self soothe. And during school holidays, he eats more. I work full time, so I cannot monitor his eating. So, D is putting on weight and the two veins D will let us use are scarred and hard to find. I dug at his arms 6 times yesterday…and no blood.

I tried today and still no vein access. I will try tonight. If I miss, his veins will need a rest for a week. So, the risk of D having a bleed sky rockets. That means time off work, going to the children’s hospital and consoling an autistic boy who hates haemophilia.

Bleeds do not happen by schedule. They happen whenever. Day, night, at home or out. I am now on mental alert for the first sign of a bleed. It means an hour drivd into the city. Not fun when I have to fix heavy trucks tomorrow.

Don’t get me wrong. I am not complaining. D is alive and I am grateful. I am explaining why I do not do things others my age do. I cannot get drunk; I cannot go out with mates. Both my boys are increasingly anti social and are not wanting to leave the house. They do not want to go camping, go out and watch football or go waterskiing. There are sensory issues and haemophilia to consider.

Teaching the boys to do chores is time consuming. I have to supervise the whole lot. H wonders if he has done the job right and D slacks off. So, I do most chores myself.

I am tired. I wanted a few days to recover from life. Instead, I’m now nervous about finding a vein a few mm wide.


Author: kaptionthisblog

A 40 something mum of two, all of whom have autism and love ice cream.

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