What do you find hard about having a little one with High Functioning Autism?

[Blossom4538]

Hi all!
As per title really.....

[Shesinfashion]

Huge garage envy here too. I try to recreate similar with candles, headphones of soothing rain and a really good book in my bedroom. I can only "cope" with everything till about 9pm (work as a TA in a SN school) but my children keep finding me. It's never daddy my autistic child requests.

[KOKOagainandagain]

To my shame, I have set up the garage with an electric heater so that I can escape with a Radio 4 comedy on iplayer, a glass a Pinot and vape to my hearts content

If I was a man, and it was it shed, it would be OK so, there you go ...

Now I just need ear defenders for when I am forced indoors for a top up!

zzzz - I bought some wonderful bose headphones but they were insufficiently discrete and it would escalate DS1's meltdowns if I donned them mid-way through

[KOKOagainandagain]

I love the practical things that stop my head exploding - guilt-free earplugs it is then!

[CloudPerson]

We've also had some success with wristbands that are red on one side and green on the other, red means the wearer needs quiet time, green means ok to talk.
I had to limit my time on red, as if I had it my way I would permanently be silent!

[CloudPerson]

I wear earplugs an awful lot of the time and can thoroughly recommend them

[KOKOagainandagain]

I have not posted much recently because everything has gone to shit because I am overwhelmed with issues with both DS1 and DS2 atm and have little spare time and mental energy to try and help others and am dealing with extremes that are too complicated for most people to have direct experience of and so can't really help me.

Also it feels less safe here - I read and post messages on closed FB pages that either relate directly to my LA or are for the 'hard core' pursuing JR etc.

I have also been reading 'neurodiversity' threads and now that DS1 is 16 and I have had time to let the diagnosis and all it entails sink in, I have found that I have become uncomfortable with a lot of the ways that parents of autistic DC think and talk about autism. I include myself in that. I don't doubt that I would be diagnosed if ever I sought a diagnosis (and that previous MH diagnosis would be seen as misdiagnosis) but I went from total ignorance to having to talk the talk of 'functioning' and 'disability' in order to get support for my boys.

I think it helps to see things from the child's perspective. I am ashamed and suffer bouts of guilt that I used to get irritated or pissed off by the sock issue when DS1 would declare that his socks were itchy and remove shoes and socks just as we were leaving for school. He was suffering intolerable anxiety and instead of making things better for him I was too concerned about him being late for school and being thought of as a bad parent. I did not need someone to listen to me rant but I needed to know of the existence of seamless socks.

Regular posters, who have been so for many years, are the backbone of this board and it would not be the same without the kindness and positivity of Polter or the acerbic wit of zzzzz.

Any tips for constant verbalisation/commentry - never a thought left unsaid? My usual coping mechanisms cannot cope with the constant onslaught of DS2 in internet school with me acting as his 1:1 because he also does this during the break or lunchtime. I use tokens with 'listen to the teacher' during lessons but let him verbalise when he is doing worksheets or composing answers as it helps him process. It is the breaks. I don't get one. There is no escape and I can't hear myself think. I had to leave the room the other day as he was talking himself through making cheese on toast for lunch . I am oversensitive to noise and seriously considering ear defenders for myself.

[LornaDoone1]

Delurking to say that I'm currently going through the assessment process with my son and find zzzzz's posts really helpful as they often give me a different (and often better) perspective on things.

[OneInEight]

The OP's post did also follow shortly after a student posting for information which was rapidly shifted to another board as this board is for people seeking advice not as research guinea pigs.

For my family the hardest part is having more than one family member with an ASC. Both my ds's have a diagnosis of AS and I suspect dh would be diagnosed too if he wanted to go that route never mind myself. It makes meeting everyone's needs very difficult as they often conflict. I can never decide whether sharing some of their difficulties makes it easier because we understand the issues or harder because we are not exactly great role models for social communication and compromise.

[user1477282676]

I'd just like to point out that since MN has fallen foul of journalists many, many times....it's perfectly reasonable to ask for a fuller explanation when someone posts a question without context.

Particularly on a sensitive board like this one.

Zzzz was not rude in the slightest. OP's question was abrupt and lacked any explanation.

[Shesinfashion]

My DD is also currently obsessed with "boys pants". My DP gave in and bought her a pack of superheroes ones. Every day she wants to wear a pair, even for school on PE day. 5 pairs is now not enough and she is repeatedly asking for more. She knows daddy is going shopping this morning (supermarket) and has been asking and talking about them at every available opportunity since yesterday evening. Thing is, if she gets them she will replace it immediately with another need/request. It's really never ending.

[Areyoufree]

Socks. Nothing fills me with more dread than the shout "My socks are bumpy!". Well, apart from "Where's Blankie?"...

[Imaginosity]

I find that I get very worried about DS whereas he seems very happy in himself. It makes me wonder why I bother worrying!

I find it hard that I can't do simple things like drop DS off at a party and go. I need to stay and hover around him as he can get boisterous in a way that is not appropriate for his age. I'm always the only parent that stays.

[CloudPerson]

The thing I find most difficult is knowing that so often I get it wrong and that contributes to the boys finding things difficult.

When they ask questions repeatedly (and to be fair I do this too) it usually means they need more time to process something, or I'm not listening properly to what they're saying so they feel anxious about whatever it is.
I do this at the dr's if I have a new prescription, hopefully they don't find it too irritating!

I tend to browse these boards more than I post on them, but I know without some of the regular posters I wouldn't have got through the last few years.

[Shesinfashion]

Perhaps Blossom wanted to ask others what they found difficult first. Her question was pretty clear in the title.

[zen1]

How old is your DD Blossom? My youngest DS used to be terrified of certain noises, particularly hand driers, the school dining hall, fire alarm etc, but I have found that over the years, he has become much more able to tolerate the noises. He is still distracted by them, but they don't frighten him any more. Youngest DS is also fearful of a lot of his 2 older siblings (who I've also recently found out are on the spectrum) favourite films and will have a meltdown if he hears the theme tunes anywhere in the house. Even knowing his DBs are watching in another room with the door shut is not enough to stop his anxiety - and these are just kids films. It is hard to keep them all happy sometimes.