To hate Autism

[EnglishRose1320]

I know I might well be but today I am done with it. I am sick and tired of everyone telling me it brings so much joy, a different way of thinking, unique gifts etc. I'd happily swap my son's autism, lose the high IQ, the quirky traits, have an average child in a heartbeat because nothing is worth the aniexty, the depression, the self harming, the house desteoying, the life destroying that we have to deal with. I don't see Autism as a blessing and I don't know that I ever will.

I have to tell my daughter that we need to change her clothes soon.
The mere thought of having to change them will send her into a melt down. I don't know how long it will last.
Then she will change her clothes, I don't know how long after I tell we need to change that will be (could be a day, could be several)
Then she will change her clothes and spend the best part of the whole day/night fiddling, scratching, crying, shouting, undressing, dressing, pulling at her clothes.

That is with doing deep pressure massage - with oils - and joint compressions. With (or without, her preference) calming music, with a calm environment. Just me & her. With me talking in flat calming tones, trying not to hyperventilate and cry until we are near enough done with the process that I can go into the garden and sob my heart out so she cant hear me.

I am not strong enough to tell her today. So tomorrow my MIL will judge me because she has worn the same dress for over a week. I am not strong enough to cope with that, either!

Then she will change her clothes and spend the best part of the whole day/night fiddling, scratching, crying, shouting, undressing, dressing, pulling at her clothes. Sorry, I forgot to add "banging her head on internal brick walls" because the pain of that takes away the "wrongness of the clothes" but we can't let her bang her head....

@differentnameforthis quite frankly sod tour MIL. She isn't living your life. Seriously don't use the mental energy required to process what she thinks.

Might be teaching grandma to suck eggs here but have you tried now and next visual timetables for dressing?

Also @differentnameforthis would it be worth finding clothes she can cope with then just buying several sets so she just wears the same thing all the time ?

Might be teaching grandma to suck eggs here but have you tried now and next visual timetables for dressing? The visual timetables don't stop the clothes feeling like cacti against her skin though. That is the battle, not the actual changing.

And it's hard not letting MIL get to me, because I don't have the reserves to brush it off at the moment. But I'll try!

Not always possible I know but for at home just turn stuff inside out. I do understand the sensory thing, there are fabrics I can't stand.

I don't know whether or not seam free clothing would help?

Thank you, bishop. These are clothes she can cope with. She lives in leggings and tshirts and one dress.

After a continuous 48 hours of wearing them (she sleeps in them too) she will start to calm down. Then we will just notice the pulling at the sleeves, or the the waistband, or the collar. But those 48hrs are hell for all of us, sadly.

Sadly the ability not to give a fuck what others think wasn't one of the things Autism gave me, used to care too much.

Turning inside out doesn't work, it isn't just seems. It's the actual fabric, and the feeling on her skin. She can't wear certain fabrics at all, she can't wear anything with prints on.

We are looking at specialist clothing, but I can't afford to buy it for her not to wear it. It's quite expensive here. her OT is about to get some in, and she is trying to get dd's sizing so we can try it.

Most of the time I can let it wash over me, maybe tomorrow it will...

Bishop, I too, am working on the “I don’t give a fuck” thing. But the habit runs deep, that people pleasing “are you OK?” and “am I Ok?” thing has hampered me all my life.

My DS lives in M&S modal mix pjs and soft full sleeved t shirts in the house. For college....skinny jeans (we’ve 6 pairs...same type/colour) and check shirts (all blue check, same). It’s made our life easier.

different that sounds tough!

Ds is happiest with no clothes or with back to front and inside out pjs on.

When he is dressed he has to wear a Lycra suit which works fine until he grows and it starts to get slightly uncomfy. He will only wear blue chinos and polo shirts!

different My son wears compression tops by under armor next to his skin. They aren't cheap but are a lot cheaper than specialist clothing. The retail price here was $30 per top. Would something like that work?

No clothes or soft thin jersey mix stretchy seamless cotton dresses help us. We'll wear the same clothes for longer than most would find acceptable. DC prefers no clothes and being wrapped in a blanket, has ones of various textures and rolls around in them. Obviously not so good for leaving the house though. I can't stand a lot of fabrics, it's awful and i sympathise. Most ppl have no understanding or acceptance for now difficult things like dressing and wearing clothes can be.

I will say the lack of support in the U.K. For parents of children with autism is shameful. Here in New Jersey, UsA we get some excellent support. My son was in early intervention, with the cost dependent on income. A family with a household income of £60k a year pay £10 per session. If earning less you pay nothing. We were top of the income chart and paid £130 per session (household income was about £400k that year).

Our daughter being diagnosed, we went back to the state care program called performcare. We have three hours of therapy a week at no cost to us. Our school district and health insurance cover the cost. If no health insurance your child is automatically enrolled in Medicaid so the state picks up the portion covered by insurance.

We have had to fight our school district and I'm getting involved politically to bring in some changes. I'm one of two working parents in the program. The other mothers stopped working and focus on their DC. I see them struggle more than me. It's not the money but working gives me an outlet and a break from the monotony on caring for disabled DC. The downside of me working is that I'm not around to do play dates. They don't welcome our sitter and a couple of mothers have told me that our sitter spends her time on her phone not being engaged with the DC. I spoke to the staff at the library who run the program and they told me our sitter isn't on her phone and spends her time running around after the baby. It's made it all a bit awkward now with the group.

At school DD gets 2 OT sessions and a social skills group each week.

I’m bothered by the differences in support by region in the UK. The support in my local area is shit hot, but nonexistent in other areas. It’s so unfair.

The support in Cheshire is diabolical. When looking to move over I was left dumbfounded that I had an employee at the LEA tell me that provision is better in Cheshire than in america.

The care in America has been top notch so far. As far as I can tell Cheshire could learn a lot from New Jersey.

So much is a postcode lottery.

I am hoping to get ds into a special school which has on site OT (and salt and mental health staff) as his OT needs are massive both physically and sensory, however as it’s a private school I can see having a massive battle to get the LEA to agree even though it is what he needs and can’t be provided elsewhere

yes! There were times... months, years... where I would have wanted it to go away. Four hour tantrums about underpants day after day for example. DS wasn't identified as having ASD then but I was not coping well and neither was he. But now DS has figured out a lot of socially acceptable ways to cope and we were very lucky that each year brought better ways to deal with it . We really lucked out with schools that were incredibly supportive and willing to work hard to meet his needs. Nursery school for instance allowed him to wear flipflops because those were the only shoes he could wear, they even didn't complain when his toes started hanging off the edge because replacing them was going to be too much. I learned to sew clothes that he could tolerate better, figuring out how to reduce seams and put them on the outside in places they didn't touch (e.g. moving the side seams over so his arms didn't brush them as much) and would take him to fabric shops to find fabric that didn't make him itch. For a while he had multiple absolutely identical outfits and wore the same thing day in, day out. He still prefers to just wear a towel inside the house.

funnily enough, fabric I consider to be soft and gentle on the skin is not usually what DS finds comfortable. He prefers rougher fabrics in general. He still struggles with a lot of synthetic fabrics. For instance, he'd rather wear an old stiff scratchy cotton jacket (on the very few times he is willing to wear one at all) than a fleece one. An old cardboardy stiff scratchy towel is much nicer to use than a soft blanket.

It took me a longer time than it should have to figure this out.

Oh fabric softener is a big no no.

I’m bothered by the differences in support by region in the UK. The support in my local area is shit hot, but nonexistent in other areas. It’s so unfair.

Notreally, mumsnet users should put together a database of supportive schools and LEAs etc. I live in the US and one of my friends moved to a different state and uprooted her whole family because where they were moving to was known for being much better at providing care. If you are looking to move anyway, it would be nice to know where is a good place to go.

@buttfacedmiscreant that’s a great idea. I’ll probably put myself with this, but I’m North Lanarkshire. The paediatrician who specialises in autism is Dr Cameron and she’s bloody brilliantly, pre 5 learning support and SALT are shit hot too.

There is no support in our area.