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Finding the wait and lack of help difficult.

Kateshep

Hey so never joined one of these before but am finding things increasingly difficult.

my son is 16 has been seeing camhs for around 3 years now they referred him for asd assessment over 2 years ago, just before the first lockdown had been told had been adcepted for an assessment but no idea when that would be, we are still waiting.

we are finding sensory issues becoming more and more severe to the point he cant stand showers or baths, he struggles with a rinse in the sink too.

he haits his hair being greasy but cant stand to wash it becomes so frustrated there have been instances of self harm.

he had been on fluoxetine for around 2 years for clinical depression which we are in the process of stopping as we feel it is no longer helping.

he struggles to maintain sleep schedule we have tried melatonin and promethazine neither of which helped.

he has come to the realisation that he failed to get any gcses and feels the prospect of college or tech like the end of the world, he hasn’t been able to leave the house without me for years now.

he also has tyoe 1 diabetes and is being treated with hormone blockers for gender dysphoria with the koi clinic, they are pushing him to socialise and attend school or he will nor be eligible for his cross sex hormones. 
so he is struggling i am struggling just looking help and advice or someone to vent too lol 

  • in reply to Gerty

    The diabetes part of it isnt really an issue its pretty well controlled it is much more asd issues colour, texture, etc of the food. He tends to eat the same things every day for a week or two then something different for a couple of weeks.

    he is on high doses of multi vitamins and vitamin d from the nutritionist and has a supplemental shake daily as well.

    as to going out he has never been an outdoors or an active person much happier inside with a book or art supplies, he has taken to sitting out in the garden with this warmer weather though.

    we are finding if tolerance for frustration is just non existent atm which is leading to more meltdowns for him. 

    He is wanting to come off the ant-depressants to see how he fares unmedicated

    the vast majority of his issues are sensory at the minute light, sound, water etc 

  • in reply to Kateshep

    Would his issues with food and diabetes  allow him to change his diet to boost vitamins and minerals eg more.fruit, salad and veg., or, if not, take sime good quality multivitamins supplements? Diet and deficiencies definitely affects mood. Maybe ask him to help prepare food and maybe involve him menu planning, find a simple diabetes or other cookbook he can choose any recipe from the book?

    Also can you take him out and get fresh air, nature and exercise to help with the sleep and mood, difficult I know keeping up with a 16 yr old boy on a walk, but at 16 he could be counted as a child on National trust membership which gives options for places to go.if any near you.

    Sorry if these seem simplistic with all his issues but it seems we are forced to do self help on mental and physical health these days and these are the things that help in my family.

  • I need to inform you through multiple errors in CAMHS I had to wait six years to be diagnosed I was Twenty two when I was finally diagnosed a month before turning twenty three. Which meant i missed the opptunity to attend college through 19- 23 funding and missed out extra support as didn't have formal diagnosis. I'm now twenty five this year and every cores that relates to an industry or sector i could work in with very little support requires in depth technical skill that my age disqualifies me from access because all the IT courses and apprentices are for under 23s. so i know where he feeling like their is no way that life is going to get better and the truth it doesn't. 

    Anti depressants or anti psychotic have never worked on me, i have autism and ADHD and seem to become really tolerant to any medication given for mental health. The only thing they did was increase the ADHD related Behaviour which caused me to meltdown a lot.   

  • in reply to moon

    Thanks, he did shave it short at the start of lockdown but he wanted to grow it so its shaved at sides n long thru the middle now when its washed n done he loves it when it gets greasy he wants to pull it out.

    we are weaning him off fluoxetine dr suggested next we wud try sertraline but alex doesnt want to start another one wants to see what he is like without the anti depressants 

  • in reply to Hippopotomonstrosesquippedaliophobia

    We have tried the likes of dry shampoo thats just worse for him the texture it turns his hair he likes to keep his hair longer shaved at sides long thru the middle so long n greasy not a good combination.

    he is the same if told he has to leave the house he will panic and/or meltdown

    he is fine with gluten he gets checked regularly for Coeliac due to him having diabetes diet is restricted enough due to his sensory issues with food.

    Also its not expensive its nhs its just a long time waiting to get to see the right people.

  • Sounds tough. Go ahead and vent.

    My wife has been on anti-depressants for decades - we find they lose effectiveness for her after a year or three, so they get changed. She does like Mirtazapine though as it really helps her sleep.

    I do find if she eats late - especially high sugar things - she stays awake till all hours. Sleep is also more likely if we manage to go for a a walk during the day.

    RE: Washing/greasy hair - in the distant past when I couldn't wash I shaved off all my hair and used lots of talcum powder (although I could manage the odd clean with a damp cloth). I've not tried any of the "dry-shower" products you can get nowadays.