topic Autism parenting is hard. in Supporting family and friends

Autism parenting is hard.

Miss_Hysteria — Mon, 07 Dec 2015 05:32:19 GMT

I can't quite believe I'm posting here but I really don't know where to go.

I'm married, three kids, one of those has autism. I'm burnt out. I'm crying all the time, I'm snappy. I can't feel happy or any kind of joy. We have no support from our families and I feel like I'm drowning. I don't even feel like myself. There's no fun or spontaneity. All I am is the woman who is stuck home because her child screams all the time. I'm just so tired.

Autism parenting is hard.

Zeal — Mon, 07 Dec 2015 05:46:39 GMT

Hi Miss Hysteria,

Welcome to the forum! It's good to have you here 🙂

You must be very busy. I don't have kids myself, but I have babysat a lot, and come home tired after just half a day. I can't imagine how tiring being a mother to three kids must be, especially when one child has Autism.

Perhaps try to find a parenting group or organisation to join for parents of kids with Autism. If you have already done this, that's great! Support groups for parents of kids with ASD can be really beneficial, as you can make friends yourself, as well as allowing your child to be with other children who they might be better able to relate to.

Looking into training sessions run by ASD groups or the government could be really helpful. In my state, there are these options, and it is likely each state has their own education options for parents/carers.

I hope you can get some advice from mothers, and even mothers of kids with ASD 🙂

Best wishes,

Autism parenting is hard.

mauricethesecond — Mon, 07 Dec 2015 13:28:40 GMT

Hi Miss Hysteria,

I don't have any advice, I'm afraid, but I just wanted to send a word of support and encouragement.

You're 100% right: parenting an autistic child is hard.

I used to work in after school care, and there was an autistic boy at the school. I found it really hard to manage him. My own brother, two years younger than me, has autistic spectrum disorder. But he's very high functioning--Mum was lucky. On the other hand, she did not access the support resources available to parents. I wish she had: I think it would have helped them both.

Anyway my point is you have my utmost respect, but I can imagine that there would be times when it is hard to cope--and I'm really impressed you're reaching out here.

All the best!

Maurice

Autism parenting is hard.

Nessie1602 — Mon, 07 Dec 2015 14:32:04 GMT

Hello Miss Hysteria

i have a son with autism, he is 19 years old and yes it is very hard. I find it hard to juggle his needs with those of my other children and I always feel torn into pieces because of how much they all need me. And yes it's so difficult to go out that, many years ago we stopped. The loss of routine for my son was too much for him to cope with.

im not sure what state your in but with the NDIS up and almost fully functioning there is more support for children with special needs now. Support for my family is financial, we get funding from a support service each year, and we also have support hours so that we have assistance with respite. My son can spend time away from us with a carer that will do fun things with him so that my husband and I have time with our other children.

im also wondering if you have an LAC (local area coordinator) they assist families with all of these things and let you know what other help you can obtain.

but first what about YOU???

do you need to see your Dr to talk about all the things going on in your life at the moment?? You seem to be really struggling and your GP may have some suggestions, I'm not sure if medication is an option (I'm on heaps lol) or if councelling would help you to work out some strategies for dealing with things.

SM had the right advise, an autism support group where you can get information and support from parents and carers in similar positions.

im not sure if I've been of any help, I just know that there are things out there but you have to be in a place yourself where you can ask for them.

my thoughts are with you, don't quit, things will be ok.

AND YES IT IS HARD!!!

Nessie1602

Autism parenting is hard.

Elizabeth CP — Mon, 07 Dec 2015 21:58:32 GMT

Hi my sister has a son with autism so I understand how difficult it is to look after a child with autism. One of the hardest things she found was other peoples reaction to his behaviour. Because it is not obvious that a person has autism people often assume the behaviour is a reflection of bad parenting rather than the disability. I agree with the replies suggesting you look for support for yourself. It is important to recognise you are the expert in your son so if you think of something that may help him or you don't be afraid to give it a go and stop it if it doesn't work. Keep reminding yourself that you are human and doing the best you can in difficult circumstances. Don't compare yourself with others as they are walking a different path to you.

Autism parenting is hard.

Miss_Hysteria — Mon, 07 Dec 2015 22:14:09 GMT

Thank you all for replying. Its helped me start my day off a lot better than yesterday.

We are in the process of moving so we can be closer to services for our son but unfortunately we are on the wait list for the NDIS, it will be July before we get an interview at minimum. I think knowing that has made things harder. At the moment he is only entitled to speech and OT. I'm looking forward to getting more support, hopefully sooner rather than later. I think the hardest part of all this for me is feeling guilty that I find it so hard at times. A lot of the time he's a wonderful and loving little boy but he needs so much help with basic things and he's 9. He isn't high functioning and while he can talk he doesn't converse, only repeats phrases and asks for things. I know how hard his life is going to be as he grows and it worries me. Just another thing to be anxious about!

I am going to see my GP and hopefully she can give me some ideas of where to start. I was in such a state yesterday that the only thing I could think of was to sign up here.

Once again, thank you all. This has helped so much xo

Autism parenting is hard.

mauricethesecond — Mon, 07 Dec 2015 23:50:05 GMT

It sounds to me like you really are doing as much as you can in your current situation. Don't feel guilty for finding it hard. It IS hard, and it is important that you acknowledge that. But I think you should also give yourself a pat on the back. You deserve recognition.

We will be here! Even if, as in my case, I can only offer words of comfort...

I hope that the GP will have some helpful and practical tips for you, too.

Stay strong! There is help out there! 🙂

Autism parenting is hard.

Simona — Tue, 08 Dec 2015 12:04:37 GMT

your post has really struck a chord with me. my son is not autistic but he has been diagnosed with O.D.D and i know what it's like to feel burnt out and emotionally bankrupt. we don't go on family holidays because we just can't manage his aggressive/ provocative behaviour or how he can't stop moving because he just jumps and leaps everywhere with total disregard to people/furniture or even traffic

I'm cruising on auto-pilot these days in order to ride out his mood swings. he has not been medicated yet and is waiting to be re-assessed by his new psychologist.

i try not to think much about it or 'go' there' after lights out. the waiting game/paper shuffling is a real killer that i know

All the best to you : )

Autism parenting is hard.

Miss_Hysteria — Fri, 11 Dec 2015 00:51:59 GMT

Hi Simona,

Holidays are hard aren't they? We've found that camping is good for our son but only now that we've found a medication that stops him from running away. Before that it was impossible.

I wish there was something I could say or do to help, but know that I understand you. It's super hard and tiring to the bone. I hope the waiting game ends for us both soon.

Autism parenting is hard.

PennyAngela88 — Sat, 19 Dec 2015 01:15:05 GMT

You are not alone! I have four kid. My oldest two (6,4) have been diagnosed with ASD amd my oldest also has ADHD and ODD. My youngest two (3,18months) have been assessed and are on the waiting list to see the developmental pediatrician because they are delayed in several core areas as well as having semsort issues. Coping is not easy. I got on this page to find support for my bipolar husband but your post definitely hits home with me. I love my kids and they are so incredibly unique and intelligent. I just wish theu could get through a day wothoit melting down amd having anxiety attacks. OT has been a lifesaver for us. As well as parenting courses designed to teach different parenting strategies because as all of autism parents know "normal" parenting techniques are useless. Making sure my kids get their sensory needs met has really made life easier. We are in the process of building our own in home therapy room. If you ever need aomeone to listen or talk to I am here. I understand. x

Penny

Autism parenting is hard.

Simona — Sat, 19 Dec 2015 03:45:32 GMT

For the first time I actually feel like amongst people who understand and it's like being able to exhale.

I love my 10 year old son very much also but I have switched myself off emotionally about 2 years ago. It's not that I am cold hearted. I just can't afford to feel anything partly because 1. I'm scared of losing control and hurting him and 2. He behaves in such a way that I'm left confused/reeling/gutted. He can be so loving and then speak to me in such a way that I feel my heart is being carved out with an apple corer.

I have great difficulty feeling anything - even empathy. My uncle died recently and I cried some then when back to feeling nothing which scares me. Because there are good days/happy times when I want to feel but I can't.

He wakes me up at 3am for the nail clippers but I'm up and down every 2 hrs or so anyway. It's not like I can take sleeping tablets because I feel I'm still on duty.

I have two other children - a girl 8, a boy 16. It's so difficult catering to all their different personalities. Taking them out together is often a hit and miss. Partner plays a backseat role and is not involved because it's too stressful for him which makes me feel like I'm losing my mind. I have nothing to look forward to except surviving another week.

Autism parenting is hard.

Simona — Sat, 19 Dec 2015 11:29:56 GMT

The holidays are more like boot camp for me. I try my best to wear him out - he's a total live wire and climbs roof tops if bored or goes around breaking things into as many pieces as he can. Today we were at the pool - like yesterday. Water fun always wears him out and he sleeps really solid.

He has an appointment in early January with his new psychologist and his 1st psychiatrist appoint is in Feb. Gosh it feels so far away. I have asked but there are no support groups in my town for parents like me. That saddens me no end because I feel so acutely alone in my small town.

Everyone is great at telling me how naughty my child's been, how he said this/done that (he has pulled a very scary stunt with a knife). I have no women friendships. I get glared at and these people don't even know who I am and what it's really like to be me.

I hope to God that one-day my son will be a stable law abiding person who treats others with respect and I hope that I may survive these testing years with my sanity intact because it's so damn hard

He was on camp this year and do you think I could muster a smile? I was distraught and lost. The house was too quiet. I cried for him and partner said to go out and give myself a break. But I just crumpled up and couldn't eat. I'm lost unto myself - that is the truth

Autism parenting is hard.

Perfectly Scattered — Sun, 27 Dec 2015 12:26:45 GMT

You are certainly not alone. It is hard to deal with special needs day in- day out. My 9yr old has severe OCD, Anxiety, Sensory Processing Disorder, ADHD-Inattentive type and we are about to get results for ASD. This year has been my hardest year to deal with. Most of those diagnosis are from this year because he emotionally broke down at the beginning of the year when he moved to the primary end of his school and I went back to work- too many changes in a short period of time. The advice to find a support group is what saved me- I was heading towards needing medication and had began seeing my sons psychologist because I felt like I was loosing grip on my life. The psychologist helped but the support group was what made me feel I was truely not alone. I hope you are in a better headspace now- I realise you posted on the 7th of December- I just joined up to this tonight. Sending hugs your way and thinking of you tonight x