Hi everyone, i first came on yesterday, just getting familiar with the forum/layout of the threats ect. Such a strange couple of days but wanted to reach out and properly introduce myself. Im kelly im 45 and i am a single parent to my son who is 9 years. He was diagnosed with autism at the age of 4 and has severe learning difficulties and has bowel problems. His needs are very complex he needs full support in all of his personal care needs and he has to have large amounts of support through professionals which involves alot of meetings with specialist teachers/nurses/ consultants/ therapy ect. I have brought his up on my own from the minute he was born, i did have a husband but he wanted a better life for himself, which has basically followed in all my relationships, i have looked after them and noone has looked after us. I am constantly told when i go to meetings " kelly you are doing a great job, keep up the good one" its great to hear, but you feel screaming that there is no choice no options no support! I have managed the best way i can and im abit embarrassed to say that over the last 18 months my mental health has been affected, ive taken part in CBT sessions which helped a little bit because when i was having therapy i was having panic attacks being on my own and i had to reach out to someone, sessions finished but still felt i was struggling been trialing medication for the last year, and i have done well with coping much better…but i still get weird days when i just dont feel right, i think i did mention on one of the threads yesterday that i broke down crying in a meeting, and the reason for that was because for a moment when i was sitting there i truly felt like i was isolated in the room on my own, i was uncomfortable, oh forgot to say i dont leave the house, only for appointments, i just exist anyway somehow got through the meeting and my son is doing so well with his achievements when none of us would think was possible he is a shining star and he keeps me going because i need him as much as he relies on me.
Really hope every one is well, i just wanted to share and i hope that this forum can provide me with some much needed adult chat and support.
@Kel23 Some big hugs. Thank you for sharing
sitting alongside you - with my Friday glass of rosé
BIG empathy hugs
No trite comments or cliches - but here are some we all shared that we’ve had hurled at us thought this might make you feel at home when you read these…esp given your ‘you’re doing so well comments etc’ The worst clichés people say
ooops got to go check on mum…back later
Welcome I don’t think I have welcomed you to the forum yet.
I care for S, he has autism and related LD. He suffers from constipation and IBS too. It took a long time to get support for this when he was younger and by the time we did it was severe. The pain triggered challenging behaviour. All much better managed now with a PRN meds. A major cause was that he didn’t drink in school for a whole year and only thought to tell me at his end of year annual review!! (He had to travel to school so no drinks for 8 1/2 hours.)
Is he in school now?
Hi melly1, really nice to meet you and thank you. Yes my son is in school and on laxido 3 times a day to keep things active, without this intervention daily he would suffer , i am lucky in that way as his school always makes sure that drinks are given to him through the school day then i take over.
S is now an adult and no longer in school. I do have to remind his college day service to give him more to drink sometimes. (He has introception and so doesn’t recognise when he is thirsty so wouldn’t think to get himself one nor ask for one.)
How do you cope in school holidays?
My son was like that when he was around 4-5 years old kept having to physical give him the drink infront of him. Luckily now abit older he does get a drink but on some occasions i still have to ask him if hes had a drink or could he drink abit more ect. How do i cope in the holidays…its incredibly tough! The big school holidays? Even tougher.
S can make a drink and cook etc
At home we use routine to ensure he has enough to drink.
Does your son go to any playschemes or clubs?
Hi Kelly. Is there a group in your area for parents caring for someone with autism, or a special needs group of some sort? Some groups support each other by going to meetings as a friend, just so the parent isn’t feeling alone in a sea of professionals. They can take notes, give you a friendly nudge (either to remind you to say something you wanted to say or to just offer support). But even if they don’t do that yet, they can offer ideas, tell you who’s helpful, and give other support. Believe me when I say you can feel a lot less alone.
Hi Kelly, my second son, now 44, was brain damaged at birth, only I didn’t know for years. Fit as a flea, so hyperactive, couldn’t sit still. For years I was blamed for his behaviour and had no help. Even offered parenting classes when my eldest son always exceeded all his developmental milestones! I used to run a Brownie Pack of 24 girls single handed in outback Australia, but still they blamed me for M’s behaviour and lack of speech!!! It’s time you stopped trying to be Superwoman and started yelling “Help!!!” Are you claiming DLA for him, Carers Allowance for you? Have the Family Fund helped you? Are you happy with his education provision? When did you last have a weekend off? Respite care?