Autism parenting How can I stay calmer?

darkcloud · ‎02-12-2020

Hello everyone, I just thought I should be finding a way to vent my frustration with life right now. I current have a 3 year old with Autism and a 6 month old. my 3 year old also has albinism (I do as well) but that is the least of his problems.

I have just recently lost both my parents to cancer in the space of 11 months of each other so I struggle to talk to anyone about the good things in life and the bad things in life. When ever I try to talk to anyone else about it, most people I just hear about how they have life problems as well or some people 'have it worse' advice like that is the worst to hear and doesn't help any situation at all. My biggest issue right now is I have become so snappy with anything. I have a few hours to myself at night to play a video game or watch a movie or tv show. but everything is in such a rush to get to that stage and I find myself sacrificing sleep just so I can have my time alone at night for a few hours.

My 3 year old is non verbal. doesn't even know his name or answer to it. his only communication is to really make a lot of noise. he won't play with toys correctly and just wants to throw them around. So he will get bored easy and not play correctly he has 2 shows he watches on TV but will refuse to watcher newer epidotes because they are 'different' and go into meltdown so we have to watch and hear the same shows over and over again.

with Xmas around the corner this makes my anxiety levels go up even more when we have family events coming up. he has issues going to other peoples homes and will just scream and carry on and really can't go outside in the heat. when he really goes into a meltdown. it sends me crazy and all I do is yell back and get snappy, and my brain and heart knows it's not his fault.

We went Winter of him not sleeping. with a new born baby. and luckily is now on Meds to get to sleep. and will get to sleep by 8:30pm in the past we would be up till midnight and I would have no time to myself. all this was going on during the time of my parents passing.

He still has bottles of formula as he never really has eat anything. eating is also a problem, he may go through one day of joy of trying something but it never is consistent.

Nobody in the world really understands what it is like until you actually live it. and some family members just don't get it and will blame it on parenting. does anyone have any tips to stay calm at all? especially with xmas events coming up I am just fearing it so much

Matchy69 · ‎02-12-2020

Hi darkcloud and welcome to the forums it great non judgemental place to express yourself.
I to have Autism children as well as my self.My 8 y.o son has ADHD as well as Autism and my 16y.o daughter with Autism has selective mutism so I know something about a child not being able to communicate and how frustrating that can be.I know about watching the same shows over my son just wants to watch the same DVD over and over again and expects me to watch it with him.I seem to spend a lot of time on my phone looking up anything to relieve the boredom.One thing that has to been good is some support funding we get through NDIS.We get help from physios and speech pathologist.It can be hard and tricky getting NDIS.I had to try a couple of times.I can understand about people not understanding about Autism I have found that a lot until you live with someone with it you really don't know what it is like.
Do you have any professional supports in place?Their is even respite you can use so you can have a break.
Take care,
Mark.

demonblaster · ‎02-12-2020

Hi Darkcloud Matchy and readers 🖐

Welcome Darkcloud you've come to a very good community thanks to bb keeping us safe and lovely people understanding pain.

I don't have kids but have a good understanding of what a mammoth job it is to teach guide and look after.
Autism takes that to another level. Hard work for everyone concerned.

A niece has 4 boys all Autistic/ADHD.
I've learnt a lot also have with Bipolar hards been able fully to relate to some severe Autism traits.

I feel for you so much because you have high stress in your daily life.
On top the deep so hard pain of losing your parents and within such a short period of time. How terribly sad I'm so sorry for your pain.

It's time that helps us through that pain of grieving and other pain too really. A slither of light is time keeps going so situations often change for the better.

I agree it's poor unsupportive advice that others have it harder. Kinda rejection in a way I feel. I wouldn't worry about talking to them they clearly are clueless to how it's be or lacking compassion.

As you know stress affects our sleep severely which also seems to heighten it.
Our bodies tense adrenalin runs high we're pumped and anxious.

Deep breathing can help relax the body and importantly focus only on that. If when you breathe out be physically aware of your tight neck muscles relaxing helps a lot. Breathe a lot too.. we tense up severely.

You have every reason to be highly stressed you poor person. 🤗 virtual hug if you like. Ok if not ... sort of 😉

You may have already been to see your GP if not I wonder do you feel some meds may be of help if they think the best way to go, if not they might help you with sleeping that'd make a good difference in time.

Here's the number for here if you feel like talking to people that care and listen 1300224636
They or GP might be able to put you onto some places for support.

A support group could be very comforting talking to people like Mark here that are in the same situation.
There's online as well. Face book or other sites.

I'm so glad you get some game/video time out. It's so needed esp when our minds are in turmoil.

Wishing some peace for you Darkcloud.

Care and support ☺

🦋

darkcloud · ‎03-12-2020

We do have NDIS funding. but as you know 2020 really screwed things up there. in March it was all approved and ready to go. then when the pandemic hit. delays were made. we still can only have 1 parent going in with certain things and stuff like that. I also live in the country so we don't have many services out here like the cities. so Zoom meeting have really been no help at all to be quite honest. There really is no magic wand. because of the resections that have happened most of this year has just made it even more difficult with this to get help. zoom meeting just don't work for this kind of thing. it's just not face to face and some people just don't understand that.

darkcloud · ‎03-12-2020

Thank you so much for that reply. I did see my GP a few weeks ago. he didn't believe that I was 'depressed' but that I had some elements of anxiety.

I was put on Melatonin (like my 3 year old son it helps with him) but sadly it really did not help at with sleeping, in fact it might have had a opposite effect on me. I am currently on no meds not but I have slept better (broken sleep) then when I was on those meds. I will take your advice with the breathing over the coming week and let you know how that goes!

Matchy69 · ‎03-12-2020

Hi darkcloud it is great to hear back from you .I understand how hard the year as been with the covid19.I to live in the country and over 40 minutes drive into the big town that has services so I do a lot of kms.The NDIS does help a lot with funding.We got a trampoline and iPad for me son as well as pull-ups laundry detergent and soaker.Their is things you can get if needed.Dosnt hurt to ask. I agree with Zoom meetings are really not good and I won't do anything meetings on the phone or internet but some times you don't have much choice these days. Is their anything think that you really need help with that NDIS might be able to help you with?I am allways here to talk to and can completely understand your difficulties .
Take care,
Mark.

sunnyl20 · ‎03-12-2020

Hi darkcloud,

I am really sorry to hear about what you are going through. I cannot imagine how draining and overwhelming it must be, raising a non verbal child with autism as well as a small infant. Especially as it sounds like you do not have a lot of support from those around you. I am really sorry you have not been able to find anyone very understanding of your experience. It is understandable that you become snappy out of frustration especially when you have not been sleeping well, trying not to feel stressed and helpless when your son is struggling must be exhausting. I'm glad that you are able to find some time for yourself - this is so important for your own mental health to look after you.

Apologies if you know them already, but the Autism Advisory and Support Service (AASS) has a 24 hour support phone line (1300 222 777) that may be of some help when you feel that you have no one to talk to or that no one understands. They also have carer support resources on their website that you may find helpful. There is also the Carer Gateway phoneline where you can talk to a counsellor if you feel that things are getting out of your control (https://www.carergateway.gov.au/). In terms of staying calmer, it is so much easier said than done - I'm sure you know this! - but as was mentioned above, breathing exercises can be really useful in slowing down and bringing you out of your mind and back to your breath. The Smiling Mind app is a helpful one if you feel that a guided exercise might work for you. I would really encourage you to also look up "grounding exercises" - they can be helpful in reducing stress in the heat of the moment.

I really feel for you, what you are going through is tough. I hope that you are able to find some more stability and support soon. Take care.

demonblaster · ‎07-12-2020

Hi darkcloud and everyone ☺

Thanks for returning and you're very welcome. I hope your days are easier but maybe not if the sleeps not happening.

Just thinking hun although I know you don't feel excercise can help, being out has a calming affect on body and mind with sunlight being very good for us as well as mentally.

I heard recently from a lovely member here that it can help with sleep. Not too much that is of the sun as you'd probs be aware.

It might stimulate your dear non verbal having a walk to calm him in the great outdoors. Poor love not being able to communicate verbally would be a major frustration for an adult let alone a kid. I hope in the not to distant time when he learns writing or whichever ways chosen to help him communicate it'll be easier for you all.

Potentially be some stress release for you too if bubbas in the pram and your oldest close by. If you walk somewhere pretty like a park or nature around theres birdies to listen to, flowers to look at quick hi or smile with people esp if they have kids & there's trees if you like them etc. All this is a break from home fresh air and some stimulation. By looking touching smelling etc it not only grounds us also it's being aware while in the moment. Mindfulness is a great tool for healing as is grounding.

If you're having trouble still with sleep which although broken is great you're managing some more. Such a relief isn't it but usually being so tired/exhausted it takes time to catch up but can ease the stress levels which you definately need.

So you can either do a search for "Sleep" there might be something that gels with you or worth a try hoping or paste this link to the adress bar up top.

https://www.beyondblue.org.au/get-support/online-forums/permalink/qsM77HHzvGGEbv8AAOnT_A

Did the GP which I'm guessing not offer any form of help with managing your stress at all?

Good on you, hoping the deep breathings helping. It's hard to focus and remember I found initially but with practice it's better.

Hope there's some lovely calming memories you can pull up and think about when you can that also can be a sanity saver. Especially things that have made you laugh wbether a memory with a friend family or a TV show.

Go easy darl but it's not that easy is it ☺