Hi,
Reopening this, as I have been run down for years. Have a son with high functioning ASD and ADHD (medicated), and have a daughter with mild ASD, learning difficulties and mild dyspraxia (was much worse, but has been worked on).
I've never had particularly good health, having always had asthma and eczema (so my autoimmune system isn't good). Have found the stresses and strains of caring for 2 kids with above difficulties extremely draining, and was getting increasingly chesty and snuffly over at least a couple of years until last autumn, when I decided that something must be done. GP tried different antihistamines on me, but then I asked for a referral to the local chest clinic. chest x-ray didn't show anything untoward, and a CT scan showed mild bronchiectasis (death of the tissue of the very fine bronchial tubes) which doesn't need treatment. However, a sputum sample showed an infection - why my GP never thought to get me to provide one goodness only knows. Some of them are useless. So, I've had - wait for it - FIVE courses of antibiotic during the summer which didn't shift it, and I'm on my 6th. I've felt very low and generally ill all this time, and before I started the antibiotic I'd go through periods when I felt relatively energetic, and other times when I felt really tired and run down. I do find it stressful with the kids, and next week my husband is away for two nights :-(. I have no family to help - no sibs, and parents both dead, in-laws 170 odd miles away. Have now started a referral for a local paid-for respite service, but, as with anything else, there's a waiting list - up to a year.
Help for parents of kids who have less obvious disabilities which nevertheless cause a lot of stress and anxiety to the carer really needs to be extended over the country. I'm on the local babysitting list, but very rarely use it, because most of the other parents really don't know how to interact with my kids. Once I've got something set up with this Carers First (Kent), I shall leave the babysitting circle.
I find myself shouting at the kids more often than not, as they won't do what I ask, but felt rough enough yesterday evening that I managed to tell my son to go to his room after pinching his sister and shouting at her without shouting myself. Could really have done with good behaviour from them yesterday. Feel slightly better today, as I didn't wake up at 4.50 am this time, though hubbie's alarm went off at 5.50, and that nearly always wakes me. Snoozed after that.
Son is 13 and going through puberty, and doesn't seem to think he should be told by us, and especially by me, what to do. Daughter is 11 and just started secondary, at a special school.
That's another stress factor, or several: obtaining statements, applying for DLA, and finding the most appropriate school. Not to mention mainstream primary schools that exclude for 'bad' behaviour when the child isn't coping, because their policy is not to distinguish between bad NT behaviour and that of ASD kids, and, of course, not wanting them in school, as has been highlighted on other parts of this forum. Been through all of those.
So, what I'm saying is that I am in sympathy with the findings of the study, and it helps to explain why I feel c*** so much of the time.
Kathy
