I'm a single parent of a 6 1/2 year old boy with ASD and suspected PDA to boot. When he was diagnosed, we managed well. We were then discharged from the service and then from OT. Maybe about 10 months later and I was at the end of my tether and felt as if I no longer could cope. I phoned and self referred back to the sleep clinic (who were useless), and referred us back to the psychologist. It took another 11 months to get an appointment, at this point I am beyond exhausted. I am isolated. I am done.
DS constantly pushes boundaries, refuses to do anything he's asked, has frequent meltdowns where he screams in my face and hits me while i have to sit there and try my best to remain calm. He actively seeks a negative reaction, which I try to ignore as much as is reasonable but he will persist until I have to intervene. He is messy, ungrateful, speaks to me like dirt - like demands I clean up his urine/faeces he has "accidentally" gotten on the carpet or w/e. This is one of the more extreme examples of course but it happens fairly often.
I follow a strict bedtime routine: dinner, bath, toilet and teeth, story and bed. I start all this around 5.30/6pm and finished around 7ish. His behaviour at bedtime is pretty bad. He will run through the house, refuse to cooperate, pee all over the bathroom, anything to get a rise while laughing his head off. Eventually when the bedtime routine is finished I have to sit in my room until he is asleep, if i go down the stairs then he follows, runs through the house, starts it up all over again. When he stays in his room he jumps off his furniture, the window(!) and will make excuses why he cant be in bed, laughing at me if I get stressed. It typically takes till around 10/11pm before he falls asleep, when he wakes in the morning for school he is exhausted, irritable and usually has a meltdown over something or another.
I can't have friends over to my house, DS dominates the conversation, will not let me speak to my guests and if hes ignored then he will have a meltdown. My partner of 5 years moved in with us last summer and has just left me because he cannot cope in this house with my sons behaviour. I don't even blame him. It is completely miserable here. Regardless, my heart is completely broken and I am conflicted between feeling let down and missing him.
I am a student working towards qualifying in my dream career. Now, however, I don't think theres any point in me even trying. The childcare facilities in my area are basically non existent bar an after school club, there are no autism experienced or qualified childminders in my area either. The way things are right now, I can't see how I am going to manage 40 hours a week placement hours so what is the point? I don't want to spend my life devoted as just my sons carer and never achieving any of my own goals.
I have my own mental health problems too. I am experiencing a severe depression and I suffer from anxiety. I feel like I have no control over my life, I have no respite, my partners left me and I have to deal with all this alone now. I havent seen another adult since I went to college last wednesday. I have no friends anymore and I feel so trapped in this house as everytime we go out there is a meltdown and a drama no matter how much prep I put in.
We don't have any support currently, we dont have a social worker although we are due to see the psychologist again after the summer.
I don't know how I can keep this up. I don't want to be here anymore, I just want to die, I can't cope and I can't see how things will change. In a kind of cruel way, I know I can't commit suicide as my son completely relies on me and there is no one else. This adds to the feeling that I have no control over my life, every aspect is dictated by my son.
I need help, advice, tips, kind words, anything. I'm desperate.
You are not alone.
Have you tried speaking to gp/peads about melatonin? My daughter has severe sleep problems (3 hours a night) and has been like that for 5 years! When she does sleep it's in my bed. Lack of sleep and depression are not a good combination, it will be making you feel worse which has a knock on effect with him.
Are there any local support groups you could attend to at least have someone to talk to?
Have you looked into family support workers I was adamant I didn't want or need one but she has been so helpful even just having someone who wanted to help and listened was a relief.
Nas also has a parent to parent service that can be helpful or the main helpline could possibly offer some practical solutions
Keep talking to people here and please if you feel suicidal call the samaritans or check out minds website
I've asked and asked for melatonin and they refuse because once he goes to sleep he stays asleep. They think the reason is behavioural, hence why hes passed on to the psychologist. I've spent the last few weeks using all the techniques the psychologist told me about e.g. removing the demand from my language, etc. It doesn't work. He doesn't care about discipline, consequences, I'm at the end of my tether.
There is a support group on a day when i'm at college unfortunately, hoping it will still be running when I finish my course.
The problem with helplines is that I can't be on the phone without him in my face, shouting, eventually escalating to dangerous feats to get my attention.
Exhausted and lost.
I'm so sorry you're having such a tough time. I know it can feel SOOooo lonely coping with autism / additional needs but there are people who "get it" & want to support even if it's just calling a support line or the Samaritans to off load sometimes. Can you take some time from work / college & have a coffee with someone or visit someone just to get a supportive ear, if nothing else.
You're juggling SO much at the mo,(your relationship issue, work, study, lack of sleep, health) it's understandable you feel hurt, tired etc. Please be kind to yourself. You need to care for yourself to be well enough to care for your son & please do visit your GP or take the help, medication, support YOU need for your health xxx
Do you have family link in your area, they are a social service body who can offer 1 weekend a month respite to parents whose child has a statement / EHCP or The Take a break service or anything similar ?
Try to take one day at a time, the future (- jobs, college etc) can seem overwhelming but look for any small thing each day that you can give yourself a big pat on the back for - even if it's just getting through another day!.
Please hang on in there. I really hope it will feel better for you very soon xxxx
Thank you. I have no idea what respite there is in my area tbh, we literally got a diagnosis and a good luck pat on the back then sent on our way. I'm going to phone sw tomorrow and see if i can urgently refer myself because quite honestly I'm close to admitting myself to hospital.
Hi a little about me. I moved 100s of miles from my family to be with my husband (not that my family are supportive even by phone but still) my husband worked offshore and when home didnt understand our boys autism so would be wrapped up in his own life. Husbands family are a nightmare (think Jeremy Kyle type people). I had pnd, our son had heart issues, severe allergies, epilepsy and autism. I struggled so much.
Only after years of struggling alone with him I've come to realise were alot alike and I think I have aspergers as it presents differently in women apparently. So not only did I struggle with his out bursts etc I'd shut myself in a room to distress by twirling or waving my arms where no one could see. It does get easier, its bloody hard, you will cry and want a way out but it gets better. Our boys now 13 and I still get stressed but its alot easier and you eventually adapt to cope.
All the best xx
I'm really sorry to hear how difficult things are for you at the moment and how much pressure you are under. I think all the comments you have already received are helpful and the community in general is a very supportive place to find advice and support but I wanted to add a link to the NAS's Autism Helpline team (number below) if you can tell them which area of the country you are in they might be able to help you find services that will give a little support in your situation. I know you said it is hard to make phone calls, so I don't know if you have any opportunity when your son is not there or you use their webform to email a request and they'll get back to you:
NAS Helpline: You can contact the team via telephone 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.
I hope you find something that makes it a little easier.
Heather - Mod
I totally hear you, from one parent to another pls don't give up on your dream career. That is what will give you head space, confidence and ability to lose yourself in something outside of the situation your currently in. Easy said than done but have you rang your local authority and asked for a needs assessment which they must do? They will assess what support you need eg respite and provide or signpost. My son is 15 now and wow it's been a rollercoaster and urge you to take any and all support you can. Keep pushing for any help you can from family, friends or agencies. Some will be dead ends but some will be a life line. When you are feeling strong and confident everything is easier so you must put your health first to help your ds. Understand you are doing an amazing job in difficult circumstances and you feel the way you do because you love and care for your ds unconditionally. Now's the time to give yourself that same self care, snatch those minutes when you can to recharge and do something you enjoy. Forget tomorrow or the day after, what are you going to do today to help you?