I have never really come across Autism till I started my mums group – now it seems Autism is something we come across daily. Coping with autism is something mothers do day in and day out and is it any wonder so many tell me they become frustrated when people stare at their children.
Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them.
Most children do not like change, children like a set routine as they feel safe and secure, but a child without autism can readily accept change, despite a few tantrums along the way. I like routine, it means I know what we are doing and when, but when something suddenly just crops up I know after a bit of whining the kids will be just fine.
How does a mum with an Autistic child cope with this day in day out? It is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways.
Some people with autism are able to live relatively independent lives but others may have accompanying learning disabilities and need a lifetime of specialist support. People with autism may also experience over- or under-sensitivity to sounds, touch, tastes, smells, light or colours.
As a mum with not much idea of Autism, the above scares me. How would I cope if one of my own children did have this? I know I would have to but I can’t help but think this must turn your everyday life upside down.
A simple day out?
A simple meal?
A simple night out with friends, can you leave your child with others?
I cannot imagine living with this and as said have no personal experience when dealing with Autism, so I hand this post over to the parents out there who do understand this.
What is it really like to live with Autism?
How does Autism affect your daily life?
About The Real Supermum
I worked with autistic children for 4 years I must say they were a pleasure to work
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with they are such strong characters.my best friends son has severe autism which wasn’t identified until aged 4 it was only after my friend argued with her sons health visitor and went for 2nd opinion.I urge anyone who has concerns to visit their gp my friends lo now has speech therapy twice a week and has come on leaps and bounds
Also my friends lo likes to stay in a routine and will only do things when he’s ready.loud noises also scare him and he needs plenty of reassurance x
As a mum of 3,2 of my sons are relatively healthy my 1st was a preemie but this hasn’t really affected him, my 2nd was born with pyloricstenosis and duflux (he had a op and has meds for the duflux) and then i had my last since about 6 months old I knew he was different he was diagnosed with Autism,PICA and other learning difficulties. The other 2 really don’t care to much for routine and don’t mind if something crops however my youngest has to have a set routine,if something different happens he really can’t deal with it for example we had a dentist appointment my others were fine with this but when it came to getting my youngest in the car it was a total nightmare he screamed he kept pointing to the house,grabbing and scratching me it was horrendous and horrible to see him in such a state,and he has verbal ways to communicate his distress in the end I got him in and strapped safely but that was then a 30minute drive of screaming from the back and when we got in the dentists it carried on my elder 2 went and played happily with the small box of toys but LO clung to me like the world was ending screaming and bulling,and then the looks of disgust from other patients and even being told to control my child and discipline him, when it was finally our turn well it carried on Thankfully the dentist and nurse know him very well and use quite a few good distraction tecniques, But then he bit them and well to make matters worse he has an orthodontic bite so when he bites he doesn’t let go after a good few minutes of gentle prising of his mouth he finally gave in and was in fits of giggles WT was my first thought, he was certainly happy to be back home and back to normal but this happens so regulary becaues of his appointments,we are talking about arranging set days and times to try and ease his distress. But any how it may be hard work,there are times when I feel like pulling my hair out and times i wish we could just jump in the car and not worry about the screaming but this is my little boy this is how he is and I wouldn’t change him for the world xx
PS For any mums struggling with Autism please contact your local surestart centre they will point you in the direction of support groups and will offer other advise if needed.
no verbal ways to communicate
How do I deal the day-to-day type stuff? Honestly, I do it by staying at home. Don’t get me wrong, we do go places & he does play with other kids; but I turn down things a lot. It’s easier on him and me this way. Then when we do go out, you get the looks or the questions. I’m tired of explaining what autism is and I don’t want the sad looks given to me afterwards. I only trust my in-laws to babysit him. Other people don’t get he doesn’t want to be touched and will try to comfort him during a tantrum then making it worse. You’ll even tell them of this & it’s their natural reaction to still go and do it. I can’t get through to him when to be quiet or that he has to sit down during things. It’s just not happening. He’s non-verbal too. He can’t explain or tell you what’s wrong or what he wants. It frustrates him and starts the crying. He’s on a special diet. I will pack food and everything and come back to find out he had cheetos or oreos. I try not to think of the past or the future, but to think of the present. The right now.
I also recommend speech therapy as early as possible. It has completely opened up Sammy’s world in a new way. He still doesn’t talk enough to be considered not non-verbal, but he can sign “more” to me now. He told me love you, mom (in his mumble language only I understand it sounds like dub u, mehm) for only the 2nd time ever last Thursday.
I have two boys with Autism – my 6 year old has Aspergers and my 12 yr old is much more complex he has Aspergers and a mood disorder. It is impossible to explain how one copes with it on a daily basis – there is no special formula and no two children with autism are alike so I just take it one day at a time a well…just deal with whatever that day has to bring. Of course there are certain things that we cannot do like a typical family – for example my son’s have such anxiety that a simple trip to the park can become a nightmare, so I have my hubby (if he is home which is next to never) or my neighbor take the other chilkdren to the park and i stay home with the two. I try to instal a routine that is consistant but the one thing I do not do is allow the Autism to run our lives, otherwise it would be so unfair to their 6 other siblings.
How do we cope? A lot of routine and patients!! I’ve got 4 children, Harry being my eldest and diagnosed with Autism at 2years 6months old. I did expect it as he was just so different too how I’d seen other children grow up. He’s now 4, has no speach but communicates using picture exchange communication system (PECS), he attends a local special needs school which only take children with Autism. At school he has speach therapy 4days aweek at 2hrs aday, he also has soft play sessions which benefit him a lot! There are 8 children in a class too 4 teachers and I must admit since harry has been there he has come on really well. I then went on too have John (2) and he’s not autistic then a year later mally (18m) he’s just been diagnosed with autism but not as server as Harrys but still hard work, there’s also Summer she’s only 2weeks so far too young!! Harry recently been diagnosed with OCD,PICA,GDD amongst other learning difficulties but they are the most rewarding children ever, even tho Harry has no speach he knows how too be affectionate (hugs and kisses) he’s only recently learned how they should be used, too say hello, goodbye ect, he can’t wave so he will blow a kiss or kiss on lips. Our day too day routine insists of 5am wake up, have brekki, have a bath together then get ready, we need to go out everyday as monday-friday he is at school and likes the routine on a weekend, so we will visit nanny, or go to the park be home in time for lunch then he will go in to the garden and play (throw stones, eat mud and stones etc) so he NEEDs too be watched at all times, we then have dinner at 5pm exactly! Food isn’t an easy subject to talk about as he refuses normal foods and lives on peadisure food drinks, tuna sandwiches, banannas and cereal, his food intake is becoming less and less and I’ve been told by the time he is 6 he will more than likley need a tubie (tube fed) this brakes my heart! Mally is not as bad and will eat mashed / puree food. After dinner we then go up stairs to set out everyones pjs, run a bath and watch thomas, same episode everyday from the same dvd!! After our hour of thomas we go down stairs, do some hot chocolate and go back up stairs for a bath, he has a bath with his 2 brothers, lasting 19 minutes then he’s out!! John goes down stairs too dad too be wiped n dressed while I wipe and dress mally, harry enjoys this part of the day as he likes the talc!! After mally is in bed (at 6.30) harry then takes my hand and takes me too his room where I wipe and dry him and end up using half a bottle of talc wether its on harry or on the bedding!! I then give him meds for sleeping and leave him in his room too watch more thomas (diffrent dvd but same 1 every night) I check on his every half an hour and he’s asleep at 9.30, without meds it would be 12-1am!! We have a monitor in his room to watch him and we have saftey devices on the sinks and baths incase he gets out his room !! Normally he heads straight to the toilet for intense flushing time lasting ages!! Anything too do with water and harry there!! X that’s our day really but I personally cope just fine and enjoy the challange!!
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Remember our children have autism, autism doesn’t have our children
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@Emma – Your Harry remonds me of my older son with the DVD only he was into Barney and we couldn’t turn off the DVD until ALL the credits had ended and the music had finally stopped leaving a black screen. If we dared tried to end it earlier – all hell would break loose!
Ive worked with children with Autism and they are a pleasure to work with to see them doing well is soo good
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Alot need to stick to routine and thats how they go about tehre everyday life to ssee this going on is amazing
My son suffers with asd and ADHD It’s. Sometimes difficult to go out with his cos if he c something He wants and can’t have he will kiCk off shouting screaming etc and people stare at u as if ur child is a spoilet brat I feel like saying he has autism what’s ur problem it can be very hard I just wish there was more support for mums like me who do find it difficult x
I’ve worked with children with austium and its hard when they 1st get diagnosed or untill you know them well, but once you know them, there likes and dislikes and stick to their routine it becomes easier, but to live everyday with your own child your always going to have challenging days, you can’t keep to their routine exactly the same 24/7, but after time you learn how to try and deal with the changes, afterall no one knows your own child better then you!
i know very little about autism but thanks to this blog i am becoming more informed about it … thank you