Published on 12, July, 2020
Hi everyone
I dont really know why im writing this. I guess another perspective maybe. My son is 10 and recently diagnosed with aspergers. He has not been in school since sept. He has an older brother who has anxiety issues due to school transition (long story) and a younger brother. Since august really he just "broke...stopped working" apparantly hes been masking all these years. To cut all this shorter i now cant leave him unless my mum is here...even with his dad. I cant go shopping go out anything. He takes melatonin for bed but i still have to stay up with him then read him to sleep. I have no life ...i feel like everything has crashed. My husband and i get no time with each other at all. We are broke paying for private consultations etc. Maybe im just being over dramatic but i just dont feel like i can deal with all this anymore. The thought of just running away keeps poppin in my head. I want to just disappear. I no its daft...and i would never do anything to upset my boys but im so stressed out that i feel iv completly lost control. With the aspergers and pda its so hard to get him to do things and id just love a normal life. The things people take for granted like having the kids in bed so u can watch a movie together. Poppin out to the shops without a meltdown about how long you will be. Meeting up with friends for a night without having to arrange what time u can go...who will be at home that son agrees to...dictating a time to be home...checking your fone every 5 mins to make sure alls ok...im sorry if this sounds selfish. Since this all started iv lost myself. I was a good mum i had control i had a life. My sons where all happy content and outgoing. But we have hit this brick wall and im so confused. Will everything get better? Will he be happy again ? I guess being at the start of all this process im in the dark. Thanks for reading x
Omg, I could have written your post. I have 2 autistic children and one neuro typical child bi am at my wits end no feel like a servant who never gets thanks for anything bi don’t even need thanks Bundt to be treated with a modicum up frespect. I am completely isolated because my kids needs constant care and idk how much more of this I can take bi joined this group to try and find some like minded people who share my struggles bi am so depressed and even angry. All my life I wanted to be a mother and now I feel I chose wrong. Any words of wisdom. I don’t know how to keep doing this bum just so angry and depressed. mother people have these lively Co is 19 schedules they are working on and I can’t get my kids to even pick up their socks without a four alarm fire bin so beaten down.
Ggood luck to all of you.
Dear NAS35627: You're writing cause you've hit the wall & hope somebody, anybody understands even a bit of it. Some people do you know & I suspect many of them are right here. I've been in the same place, including the housebound bit & Blue Ray is right - you're in no way being selfish. You do feel out of control. Simplistically the answer is always to find a way to have some control. Easier said than done I know. I have a late-diagnosed spouse with AS & a talent for obstruction, a teen daughter w/AS & a talent for chaos, a teen daughter w/profound, complex developmental & medical needs, no money & my own serious medical issues. I always feel better when I can grasp the tail of something & make it work. If you're up to trying today, maybe try to come up with one thing you can try to get a handle on & make better. Bedtime is a big one but it might work. Make a goal & write down all the little pieces that might help him reach it. Say - 15 minutes for book to lights out is the goal. Maybe trying the melatonin earlier, using a timer to go off every 10 minutes for 30 minutes giving your boy a heads up that bed time is coming, making a clear list for your boy of the times & steps to bedtime & help him follow it, choose the book to be read well before bedtime, provide warm milk w/a cinnamon stick as you read, set a timer in his room for 5 minute increments & let him know it's that much closer to lights out & you leaving - whatever you think might help with this one issue. Even writing ideas down is success at this point. No, it won't make things normal or as they were & significant positive changes in everybody may be a ways down the road, but it will give you a bit of control to make you feel less hopeless & helpless. I hope you can make that step & it helps. I think you'll find out just how strong & terrific a mum you are if you do. Best of luck.
Hi NAS35627,
I'm sorry to hear about the situation that you and your son are currently going through. You may like to contact our Autism Helpline team to discuss your current situation, as they can provide you with information and advice. You can call them on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm). Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor.
Please see the following link for further information:
http://www.autism.org.uk/services/helplines/main.aspx
Best wishes,
Nellie-Mod
You are so not being selfish, quite the opposite. This is so hard. I’m not in too good of a place to comment right now as I’ve gone from being elated this morning, after finally getting some help after 50 years of trying, to being completely wrung out and overwhelmed.
There is help out there although often we have to fight for it. I don’t know what to say. I totally feel for you. I don’t know what’s happening in the world. It feels like we’re goung back in time, to when we were hidden away and ignored.
Your son will be happy again and you will get control back, you’re such an incredible extraordinarily loving and compassionate person, you just need a rest. I feel like going into the hospital for a month, getting drugged up to the point I just sleep, but I know I’ll have to wake up sometime and it will all be there waiting for me so I’ve realised that’s not the answer, even though it feels like that’s what I need.
I’m reverting back to being a child. I want my mum to tuck me in to bed at night and read me a story until I fall to sleep, but that’s not gonna happen. Ive been isolated in my house for over a year, with nobody even knowing, even though my son and Mum did send someone round to see if I was still alive.
You're not alone and there’s strength to be had from this group. It’s good that you’ve opened up on here. My heart and soul is with you. Things will get better, they always do. I’ve realised I have to be kind to me and allow myself to really come to terms with it all, we can’t be hard on ourselves. There’s a lot of grieving to do and then creating a life that meets our needs, which is different to what we thought life would be.
I was only diagnosed at the end of October and I’m just realising the significance. Give it time and in the meantime, be as gentle, loving, kind and considerate to you as you are with your boys. They’re lucky to have you and with a Mum like you, you’ll all come through this. You definitely will. My friend has two children on the spectrum, one non verbal with many additional needs and a husband on the spectrum as well and even though her life is totally regimented etc, she now says she wouldn’t change it for the world. She did a ton of research, went on courses, learned all she could and joined a support group with other parents which is her lifeline. It took her a while and of course the daily challenges continue, but she’s got a handle on it now so yes, it definitely gets better and her boy is doing incredibly well. He’s in his own little world but he’s happy. Her little girl at mainstream school has many challenges but since finding her singing voice, life is also getting better for her. She’s gonna be on the teli in the new year and she’s less affected by the lack of friendships than she was. You’re going to get through this. You’re not alone. If I could stop the world for a little while to give you all some breathing space, I would, i most definitely would. X