Guest post
Autism and the delayed effect
I am very proud and pleased to present the first of a series of guest blog posts, written by Mrs M, who writes ‘A Slice of Autism‘.
This will be a series of articles about being the mum of a child with autism. They are ‘warts and all’ accounts, often very personal and always very moving. They will make you laugh and make you cry.
I hope you will find it both interesting and supportive:
Tonight my son walked through the door from school and immediately I knew. He didn’t have to say or do anything….I just knew!
Call it mothers intuition, or call it years and years of practice, but I knew something was wrong. It was the delayed effect. My son has had a tricky day at school. He has held it together for nearly 7 hours. He walks through the front door…..And bam!!
He’s somewhere safe, familiar and he can’t contain the pressure anymore.
It creeps out of every fibre of his being. His face is tense and he has red cheeks. His body is stiff and awkward. His words are fast and loud, and he’s agitated. He’s hungry, he’s not hungry. He wants a snack but not what’s in the cupboard.
So he gets angry and swears as he’s not in control of his body anymore. He wants to say hello to the dogs but their over excitement is too much for him, so he’s too rough with them and he gets cross with himself. I try to ask him how he is feeling and it’s like there is a red fog surrounding him.
He can’t process what I am saying. His sisters walk in chatting and laughing. They sound like a crowd of people to him and he shouts to them both to be quiet. They snap back at him as only sisters do and wham….the volcano explodes. We have lift off.
Meltdown. There’s no turning back now. It has to all come out!
Then comes the exhaustion; for him, and for me. He can’t reflect on it because it’s all just too much. He just needs to recharge now, as do I.
It’s so hard being a mum on the receiving end of the delayed effect as it holds no prisoners, and doesn’t care who it hurts in the process. So I can’t even begin to imagine how it must feel for my son.
As his mum I know there would have been tell tale signs throughout the day. But small clues that can be easily missed, as he would have been largely compliant, therefore no one would have realised there was any problem. But I know that as they day progressed his complexion would have become paler as the energy sapped out of him with each passing hour.
He may have struggled to eat his lunch due to high anxiety.
A nervous giggle would have squeaked out when his teachers tried to speak to him. He would have put his head down on the table during lessons, or possibly rocked back and forward on his chair to calm himself down.
And as the pressure mounted there may have even been some finger picking, and sleeve chewing as the clock ticked towards home time. My son shows these signs of stress through his body language and gestures. He can’t always communicate his needs verbally, so they can get missed. And to be honest I don’t even think he is able to recognise this rising pressure himself until it’s too late most of the time.
The delayed effect is a very common challenge facing many children on the Autistic Spectrum. Some children are able to contain their feelings all day at school, with the teacher blissfully unaware that there is a problem.
However the stress hormones are slowly building and building inside these kids. This creates a Jekyll and Hyde sort of situation that can put incredible pressure on families. Especially if the teacher doesn’t understand or believes what the parents are telling them.
So let’s think about it this way for a minute…….
Imagine yourself as a bottle of pop. Your ingredients include; Autism, Sensory processing difficulties, ADHD, and a hidden speech and language delay. The worlds a confusing place and your difficulties are largely hidden to the wider world, not many people understand things from your perspective.
Your day……
Going to school is just one big worry for you… so give that bottle a shake!
You get to school and your teacher says “let’s start a new topic” …what does that mean? …give it a shake!
You don’t understand what you have to do…shake it up!
You make a mistake…shake, shake, shake!
The lights in class are buzzing, it’s annoying… shake it a little more!
It’s assembly. You have to sit still while your insides are wiggling and jiggling around….shake it up!
The timetable changes and it’s not maths like it should be, it’s now music… and again!
The taxi gets stuck in traffic, your late home, and the wrong radio station is on in the car… that’s a few more shakes!
You get home and the lid blows off with the pressure!! That’s the delayed effect! Its a real thing… trust me.
The times over the years I have felt so confused and isolated when teachers would say to me “well that is a surprise we don’t see any of that here at school.” Or I would hear “well he can behave for me, so maybe your being too soft on him”.
I spent many a sleepless night wondering if it was me. Was it my parenting?
But I am his mum and my gut instinct is always right. I knew there was something my child was struggling with and all I had to do was really understand what his behaviour was telling me.
My child explodes at home with me because I am his safe place. I am predictable and calm and he can really be himself at home. At home he is fully accepted.
So this tells me that there are many things that can be done in order to reduce this build up of stress hormones for children like my son, by making them feel more safe and accepted for who they are.
And that means really embracing their individual needs. Not just trying to fit a round peg into a square hole.
Mrs M x
If you want to read more about the delayed effect you will find really useful threads on my Facebook page
https://www.facebook.com/sliceofautism
Next Month’s Blog… 5 simple steps schools can take today to help Autistic children reduce the delayed effect
Mrs M.’s bio:
My name is Mrs M. and I a mother to three wonderful kids. My middle child was diagnosed with Autism in 2014 after a long and difficult wait for answers. He has also been diagnosed with Sensory Processing Disorder and co-morbid ADHD traits.
I have worked Childcare and Education in for many years in a variety of roles, including Nursery Manager/SENCO Assistant, and most recently as a Resourced Provision HLTA working with children with Autism.
After leaving my job last year to become my son’s full time carer I began to share my story and blog about our life through my Facebook page and website. I am always honest and doesn’t sugar coat our lives, I share the ups and downs of motherhood and Autism.
I have had several of my blogs published and my page has grown into a wonderful support network for many other parents to share their concerns and stories with people that understand.
But most of all through writing the blog I have discovered a previously hidden passion for writing.
So I will share my story with you; it will be like a little slice of my life, warts and all, as I live the rollercoaster ride that is being an special needs mum.
Kathy Brodie
https://www.kathybrodie.com/author/kathy-brodie/Kathy Brodie is an author, Early Years Professional and Trainer specialising in online training and courses. She is the founder and host of the Early Years Summit and Early Years TV, weekly Professional Development for Early Years practitioners and educators.
AUTHOR viviane
Posted on 11:03 pm March 21, 2017.
I’d like to thank you so much for sharing your story with us . I was feeling like if I’m a bad mom , or sometimes It feels like there’s something wrong here at my house because everyday when my daughter arrives from school, it”s very common she starts a meltdown just because she is hungry , or because her sister asks her to stop talking or something else. When I read your sory ,It really calms me down as a mother . I can realize that I ‘m not alone . It’s real!!! And there’s other children on the spectrum who experience the same thing.
Thank you, thank you, thank you!!!!!!
AUTHOR Lisa
Posted on 2:45 am February 4, 2017.
Hello Kathy,
This is so true. My son would be one of the best kids at school. He was well behaved. Did his best and aimed to please.
But often he would come home and the world fell apart. There was angry screaming, stomping, yelling, anger at his brothers, outbursts that would last for hours. it was awful.
I told one teacher who said to me, “well what are you doing about it, what are you doing to cause this? It must be you cause he isn’t doing it here!
I was so upset. My husband and I at the time were trying to work it out. Trying to make sense of it and make it easier for my other 2 kids.
One trigger was homework so I went to school and told them. They were not supportive of what we said. We ended up leaving that school. In some ways I found that sad cause we went there for him because it was a small school, and he ended up in a big school that had a Autism unit. He did ok. Now he is in Year 11 and had a melt down last night. I am hoping it is not going to be a regular thing. It is only week one but if it becomes to regular I am going to have to go to the school and talk to them.
I hear you loud and clear of what you said. I know what you are talking about. At one point we had our other boys in to counseling so they could talk about what is happening and how to deal with their older brothers out bursts/meltdowns.
This article is spot on. Thanks for sharing your world. :-)
AUTHOR Kathy
Posted on 10:32 am February 4, 2017.
Hello Lisa,
Thank you so much for sharing your experiences with us. I’m really sorry you are having trouble with school. I guess from their perspective it must be difficult to imagine if you’ve not seen it for yourself.
I know several parents have printed Mrs M’s article and taken it into school, to try to aid understanding.
Very best of luck and do keep in contact,
Best regards
Kathy
AUTHOR Lisa Neyer
Posted on 7:36 am June 26, 2016.
I have found that a trained companion/service dog has helped calm down many children. Dramatic example: There was a teenager who had severe meltdowns and was embarrassed by them. She would not go many places. We taught her dog to calm her down, before a meltdown started, and, now, the teen drives to college and doesn’t even take the dog with her. NO MORE MELTDOWNS!
There are several organizations that will match you up to an already trained dog, or an individual like me, who has a Spec. Ed. and dog training background, who can help you select a dog that we can train together.
Get a properly trained dog!
AUTHOR Dana
Posted on 11:03 pm February 18, 2016.
Yes! To all of this…even down to the pale face. My child looks like death when she comes home from school. Any suggestions on things the school has done throughout the day to help keep the pressure cooker from blowing?! I would love to give my child’s school some ideas. She is only in a half day kindergarten program now so I worry it will only get worse. She doesn’t melt down all the time but will engage in stim behavior for two hours straight when she gets home. But does not stim at school at all!!
AUTHOR Chantale
Posted on 4:15 pm December 13, 2015.
Dear Kathy,
Thank-you for this article. I’m saving it and going to re-readnin about a week!!
I have a private question, please?
Where did go to create a website with just your name only?
AUTHOR Mrs K
Posted on 8:26 am November 28, 2015.
This is why the Internet is bril. Years ago I felt I was totally alone, like you said you knew you were going to have a rough evening, even the cat got wise to it. School used to say ‘ she’s no problem, such a lovely girl!’ I felt totally isolated and felt it was something I was doing wrong. This went on for years, then she got a Teacher who himself had a daughter with ASD, our life’s changed and a pattern appeared. He would write in her home school book, today C saw some one have an seizure, The door of my house used to fly open, I would get her book and acknowledge what she had seen, and straight away, she would calm down. We had a whole year with reduced meltdowns. Of course when she moved into. New class it started again, but quickly remedied! Life hasn’t changed and she’s a lot older, but it’s up to me to train the ‘professionals’.
AUTHOR Kathy
Posted on 11:18 pm November 29, 2015.
Hi,
Thank you so much for sharing your story. It can feel very isolating – but, as you so rightly say, the power of the internet, support groups and Facebook are marvellous inventions!
Very best of luck for the future, and do keep in touch.
Best regards
Kathy
AUTHOR Michelle Ayrton
Posted on 2:21 pm October 31, 2015.
Dear All,
I have read this blog and your comments with great interest as it resonates so loudly with the experience of one of my pupils at school. But here’s the million dollar question, for which I know this is no one, single answer as every child is different, but can you offer any guidance that I can suggest to his mother to help them both through his meltdown on his return home from school and also how we at school can help to try and deflect it from happening in the first place? Thank you all in anticipation.
AUTHOR Stacey
Posted on 1:51 pm October 29, 2015.
Thank you so much for writing and sharing this (I found it on Yahoo! Parenting). Every single part of your post resonates with what we go through with our son. I kept nodding my head while reading it and saying “Yes, yes, yes! This is our son all the way!” He is seven and was diagnosed with sensory processing disorder and severe speech delay at four (this two years after we knew something was off with his speech, or lack thereof, and was brushed off by a doctor who said our son was just lazy in his speech). He has always saved his meltdowns for home. I have often been told that it is because he feels safe here and he can let it out, but that isn’t very comforting when you yourself are about to have a meltdown when you cannot figure out how to help your child cope. :( Our sweet child is struggling so hard at school, his anxiety is worse than ever, and he has had enough changes in behavior that we have had a conference with various people who feel we should have our son re-tested for Autism, because they think that he most likely will fall on the spectrum now. In the meantime, we are working on ways (such as visual cues) to help our son and hopefully help him with at least his anxiety.
AUTHOR Debbie
Posted on 9:43 am October 23, 2015.
Hi So glad there is more than our family having to deal with this sort of situation as our eldest Grandson (who is 11) does nearly everything you have explained happens with your Son. Our Daughter has been saying for the past 8 years that there was something happening to him that others couldn’t see, usual answers, no he’s fine at school and when visiting any other family members/friends but always explodes at my Daughter (his Mum) usually at home. Our Daughter has been told by professionals everything from, she’s a bad parent to not knowing how to handle a child, well she does have three other children, two of which are showing other signs on the autistic spectrum, so Health professionals have now decided to start to take her seriously and listen to what she, as their Mother, is saying is happening between all three of them. Luckily at the moment the youngest child (a girl) isn’t showing any signs but time will tell. Hopefully now people are listening to her and she will get the help she has craved for over the past 8 years of struggle, ridicule, stranger stares (if he does explode in public) of her sons behaviour. Fingers and toes crossed and thanks for writing this article for us all to realise we are not alone in these situations as so many of us think we are, well done and good luck with yours
AUTHOR Debbie Pleasance
Posted on 9:40 am October 23, 2015.
Hi So glad there is more than our family having to deal with this sort of situation as our eldest Grandson (who is 11) does nearly everything you have explained happens with your Son. Our Daughter has been saying for the past 8 years that there was something happening to him that others couldn’t see, usual answers, no he’s fine at school and when visiting any other family members/friends but always explodes at my Daughter (his Mum) usually at home. Our Daughter has been told by professionals everything from, she’s a bad parent to not knowing how to handle a child, well she does have three other children, two of which are showing other signs on the autistic spectrum, so Health professionals have now decided to start to take her seriously and listen to what she, as their Mother, is saying is happening between all three of them. Luckily at the moment the youngest child (a girl) isn’t showing any signs but time will tell. Hopefully now people are listening to her and she will get the help she has craved for over the past 8 years of struggle, ridicule, stranger stares (if he does explode in public) of her sons behaviour. Finger and toes crossed and thanks for writing this article for us all to realise we are not alone in these situations as so many of us think we are, well done and good luck with yours!
AUTHOR Kate
Posted on 12:03 am October 23, 2015.
A friend shared this article on Facebook and I wanted to give my experience from the school side as a recent SEN primary teaching assistant. Your article could be describing a child I worked with. Luckily we did listen and together with advice from a wonderful couple of ladies from a nearby special school, devised a strategy for the child to understand their emotions. The child and I named the emotions they could be feeling and we gave them an army rank and name. We found pictures for them. I tried as often as possible to name the emotion the child may be feeling. Eg pride was easy when they did something well but when he had disagreements with friends I could suggest he maybe feeling jealous etc. It was great for the child to think about what he was feeling and then try and bring a more happy soldier out to help. I made sure we spent the last half an hour of school talking about the day. Most importantly, he knew he could ask to talk to me any time of the day if something upset him. His mum was so relieved the meltdowns stopped. The child recognised he maybe feeling emotions other than anger. To all of you in despair, do keep trying to communicate with the school, most of the staff I worked with really wanted to help. If your child has a teaching assistant, explain what is happening, show them this article! There has to be great communication between you. Get them to phone you if there has been a particularly unpleasant event at school so you can talk about it.
AUTHOR Valerie
Posted on 12:44 pm October 21, 2015.
Just wanted to thank you for reminding me we are not alone and I am so blessed to have found this article ..it totally sums up how my daughter is and reacts when she gets home she hasn’t got a ASD diagnosis yet but apraxia dyspraxia possible ADHD and sensory PD and what you have described are her as well to a T…
AUTHOR Mrs M
Posted on 9:55 pm October 21, 2015.
Hi Valerie, thank you so much for your comments and I’m glad you found the article too!
Mrs M
AUTHOR Sue
Posted on 8:37 am October 21, 2015.
This is my 3 yr old son completely, his teachers are shocked when I explain how he behaves with me and family at home , since he was 4-6 months old I knew there was something not quite right , he is under a paediatrician waiting to be assessed when they receive school reports but I know they won’t be a true report of him , I mentioned to his teacher about your article I stumbled across on fb last night and she would like to read it
Thankyou for writing this , I know I’m not alone but this has helped so much
AUTHOR Mrs M
Posted on 9:57 pm October 21, 2015.
Hi Sue I hope sharing the article with the teacher helps and thanks for taking the time to comment! Good luck with everything
Mrs M
AUTHOR Janine
Posted on 8:22 am October 19, 2015.
Reading your story has made me feel like im not on my own anymore, my 15 year old daughter was only diagnosed in July of this year with autism, ive been saying for the last 13yrs that i think she is on the autistic spectrum but no one would listen to me,and I always got blamed for bad parenting ive cried so many times thinking it maybe it was me. She also suffers with depression and anxieties and really don’t like who she is inside or out, it makes me so sad that we have had to suffer all theses years on our own.
School just didn’t understand her because we never had a diagnosis. She does exactly the same as your son hides it well at school but explodes when she gets home and then sleeps and eats. I will be following your story just knowing im not alone anymore has made me feel stronger thank you
AUTHOR Mrs M
Posted on 9:58 pm October 21, 2015.
Hi Janine, bless you, you sound like you’ve had a tough time of things! So glad you found the article and that its helped you know you’re not alone
Mrs M
AUTHOR toni
Posted on 1:12 pm October 12, 2015.
Tears are rolling down my cheeks as I recognise my son in every word you wrote. He is 10 now and confirmed Dyslexic but I now wonder if I need to look into getting him assessed for possible ASD. Thank you for sharing such a personal experience and letting us know we are not alone.
AUTHOR Mrs M
Posted on 1:32 pm October 12, 2015.
Hi Toni
Many thanks for reading my blog and I am so glad it helped you realise that you’re not alone!
Mrs M
AUTHOR HayleyD
Posted on 12:35 pm October 7, 2015.
Hi
I come across this on FB and so glad I read it, it actually sounds like I have written it. I am at a dead end at the moment my son who is now 6 has been under a paediatrician since he was two, they say he has traits of ASD but because he is fine in school they are unsure. I describe my son as Jekyll and Hyde one minute he is telling me how much he loves me the next he is beating me up and lashing out, he can turn at the drop of a penny. I am so frustrated that I have to wait 6 months between appointments for anything to be done, and was told over a year ago he had been referred to CAMHS but this week told that infact the paediatrician has not put in a referral. I hope you don’t mind but I am going to print this off to give to the school and the paediatrician as it describes my life to a T. I am not really bothered if he gets a diagnosis or not but need guidance on how to deal with him so that he has a happy life but the only way I can get on courses etc or have any guidance with CASS or any other agencies is if he has a diagnosis. x
AUTHOR Mrs M
Posted on 4:12 pm October 11, 2015.
I dont mind at all and I hope it helps!!
Mrs M
AUTHOR Debbie
Posted on 6:20 am October 3, 2015.
Hi Kathy, as I read your post there wasn’t one bit of it I couldn’t relate to. My son has left school now, but when he was there the teachers who would take the time to listen just couldn’t ‘get’ what we were telling them. It probably didn’t help as he was only diagnosed late after years of us feeling as though we were banging our heads against a brick wall.
Posts like this are important as sometimes it feels as if no one else knows what life can be like with a child with ASD.
xx
AUTHOR Mrs M
Posted on 8:54 pm October 5, 2015.
So glad you could relate to it Debbie
Mrs M
AUTHOR valerie pockett
Posted on 6:50 pm October 2, 2015.
This was so our house,i got the “we didn’t see any signs of stress,must be you,doesn’t happen here ” took a long time to realise it is actually them that don’t know my son & stressed him to the eyeballs.
AUTHOR Mrs M
Posted on 8:53 pm October 5, 2015.
Thanks for your comments Valerie
Mrs M
AUTHOR Clare Hollingsworth
Posted on 11:50 pm October 1, 2015.
There is an alternative to sending them to school if it stresses them out so much.
AUTHOR Mrs M
Posted on 1:14 pm October 2, 2015.
Hi Clare, yeah I home schooled my son for nearly 6 months and he sort of ‘reset’ himself with lots of walking, being outdoors and less pressure. He is now in a specialist school where his needs can be met fully , Thanks for reading. Mrs M
AUTHOR Sarah
Posted on 10:49 pm October 1, 2015.
Hi thank you so much for sharing this you have described my daughter to a ‘T’! I have thought she was on the spectrum from a young age but was told at 5 that she just had sensory processing difficulties, given a brush to brush over her arms and legs if she got stressed and that was it! Now she is 8 and things are so much worse, school are starting to pay more attention but only because she’s also developed a phobia of going outside, before that they just seemed to think I was a neurotic mother. And I’ve lost count of the number of people, including relatives, that I’ve tried to talk to about her who have just said that they wouldn’t put up with that and basically it’s because I’m too soft!!! Aargh!! Luckily because of the outdoor phobia I managed to get a referral to see a primary mental health nurse who now seems to agree with my ASD conclusions and is going to refer her again for proper assessment! Thank you for your blog and reading others comments is so helpful too xx
AUTHOR Mrs M
Posted on 1:16 pm October 2, 2015.
Hi Sarah, it can be very isolating when no one else except you really ‘gets’ your child, but remember you know your child best no matter what anyone says….thanks for reading and taking the time to comment. Mrs M
AUTHOR Dani
Posted on 6:21 am October 1, 2015.
Hi Mrs M. This is so well explained. I working in this industry supporting a variety of children on the spectrum and working with their families and settings. Would you mind if I used your way of explaining things. It’s brilliant. Thank you for sharing your experience. You sound like a remarkable woman who understands her child’s needs. Thanks again, Dani
AUTHOR Mrs M
Posted on 1:19 pm October 2, 2015.
Hi Dani, I wouldn’t mind in the slightest I would be delighted if you shared it with others that may benefit from hearing they aren’t alone! And thanks so much for taking the time to read and comment.Mrs M
AUTHOR Doubtfulmum
Posted on 10:36 pm September 30, 2015.
Christ. This is my son absolutely to a T. Even down to the finger picking and jumper chewing. They are exactly his channels of relief, although he moves to his ears and nose if he gets too much attention from the fingers and the school told him off for jumper chewing. I am currently fighting an uphill battle for assessment because school think I am a bad parent and don’t see any signs of him struggling at school, but some days I see him come home wound up like a coiled spring. He is jerky, can’t tolerate the slightest touch and is waiting to explode at my first word.
Thank you for publicising this, I just wish I could get the school to see what is staring me in the face.
AUTHOR Mrs M
Posted on 1:24 pm October 2, 2015.
Hi Doubtful mum. Sadly this seems to be an ongoing theme from what lots of mums are telling me. I think the key to this is all about raising awareness and understanding .of Autism as its such a wide spectrum and not a one size fits all. And open communication between home and school….. and I hope in a small way that’s what this blog is helping to do by giving a voice to families who feel they aren’t being listened to Keep strong!
Mrs M
AUTHOR Sarah
Posted on 8:48 pm September 30, 2015.
Oh my goodness. I feel this popped up on my fb for a reason today. School Finally have admitted my daughter is on the spectrum due to a social and communication disorder and anxiety amoungst other things. This really does describe my daughters behaviour and my feelings that I was a bad mother but my git saying their is more to it?? Thankyou for your honesty. X
AUTHOR Mrs M
Posted on 9:25 pm September 30, 2015.
Hi Sarah, so glad it popped up on your Facebook and helped you know that you’re not a bad mother! You sound like a wonderful mother to me. Thanks for taking the time to comment Sarah and good luck with it all, sounds like school are on board now so hopefully things can get better for you all
Mrs M
AUTHOR callie
Posted on 7:28 pm September 30, 2015.
It’s good to know i’m not alone in my frustrations! Your blog describes our day completely & other’s comments about the difference between school & home describes our life completely. My 5 yr old son (who has a statement due to hearing impairment, global delay, speech & language issues, behavioural issues etc etc) had an asd assessment a few months ago after lots of pushing for it not only by myself but by professionals dealing with our situation as well. Unbelievably they completely dismissed asd & preferred ‘proprioception’ instead even though he doesn’t fit the profile. So….appointment in a year’s time & ‘deal with it’ in the meantime! Sadly this seems too familiar but hopefully your blog will enable families to feel they are not alone & give some emotional support to many. Thank you!
AUTHOR Mrs M
Posted on 8:34 pm September 30, 2015.
Hi Callie
Its sounds like you are having a bit of a rough time of it, and sadly that’s the case for many families like ours.
Thank you for your comments it means so much to know that people can really relate to our story and I will keep sharing .
Mrs M
AUTHOR Eleanor
Posted on 4:15 pm September 30, 2015.
Hello Mrs M, Oh how I identify with what you have written, my 12 year old son has just started secondary school,he has a 50 minute bus journey twice a day to get to and fro from school. We have finally got a diagnosis of ASD two weeks ago, having previously been diagnosed with adhd, twice in scotland, We moved as I felt that there was no support in the remote area that we were living in. We were then told my son didn’t have adhd and thrown on the scrap heap, oh give him a star chart, its bad parenting…. absolutely furious and now on a mission, I pursued a different avenue of diagnosis, and finally now with almost white hair we are moving forward. My son cannot cope at all when he gets hope from school, yes he is an explosive chemical, ready for meltdown, he shuts himself away in my bedroom plays computer games, can’t face the mountains of homework expected of him, more meltdowns… I could go on, you have probably experienced all of this , patience is my virtue, stability dinner on time… clothes put in neat piles and so on… I do love him so, but somehow I feel deep down the school environment is detrimental to my sons wellbeing
AUTHOR Mrs M
Posted on 5:09 pm September 30, 2015.
Hi Eleanor
I completely understand how you feel it can be so frustrating getting the right access to support. But hopefully now your son has a recent diagnosis it may open some more doors to you. I agree about school, I often feel like we are trying to fit as round peg into a square hole with our current education system. Thanks for taking the time to comment it means a lot so much! Mrs M
AUTHOR Stephs Two Girls
Posted on 4:13 pm September 30, 2015.
Great post; as mum to a girl with autism (and also a blogger!) I can relate to all of this, although my girl doesn’t necessarily mask everything at school all the time. Interesting you used the phrase Jekyll and Hyde though – that is one commonly associated with PDA (Pathological Demand Avoidance). Have you looked at the PDA Society’s webpage at all? Happy to have found another new blog to follow :)
AUTHOR Mrs M
Posted on 5:12 pm September 30, 2015.
Hi Steph many thanks, yeah I have worked with several kids that had PDA and I have had several discussions with professionals about how many traits of PDA my son exhibits . Lots of the strategies I use for him with mixed success. Whats your blog I would love to read?…..
Mrs M
AUTHOR Rachel Wickett
Posted on 3:04 pm September 30, 2015.
That explains me to a T throughout primary, and secondary too. Of course none of it was picked up. Mum and Dad thought I was just mis-behaving and awkward, plus that I was being bullied at school. Mum (I know now) blamed herself.
I know that school said I was very shy and quiet, and very much 2 different people.
AUTHOR Mrs M
Posted on 5:17 pm September 30, 2015.
Hi Rachel, I am really interested to hear you can relate to this through first hand experience. I hope I did it justice…. as I can only imagine how it must feel for my son. Thanks so much for taking the time to comment, it means a lot to me! Mrs M
AUTHOR Abigail Tyrrell
Posted on 2:21 pm September 30, 2015.
It’s called situated behaviour. The person will behave in one way at school and another at home, another at work, another with friends. The person conforms to the social rules of the situation. In school this will mean to stay quite, do not complain and do not make any kind of fuss on pain of severe consequences (often involving informal, and thereby illegal, exclusion). So the behaviour gets transferred to a situation where it is “acceptable”. The person can appear “normal” in a social situation, but when they leave it – all the frustrations come rushing in. Also goes to explain difficulty at bed time. Solution is to create a social situation where frustrations can be “talked” through and followed by relaxing techniques to lower stress. Create a pattern where they know they can let go in a calm way and be rewarded for it. It then becomes a life long skill. Abi Tyrrell, mother of two now adult Autisics and Psychologhy BscHons
AUTHOR Mrs M
Posted on 5:31 pm September 30, 2015.
Hi Abigail. Its great to hear the theory behind the reality. It completely makes sense when you understand the cognitive processing that causes this behaviour….. It can be very confusing and isolating for parents who don’t know this theory, some even with no diagnosis yet. And they face a child coming home from school that has been ‘OK ‘all day but then falls to pieces the minute he arrives through the door. I strongly believe better communication with schools, and increased awareness of the child as a whole by listening to the parents is the key to helping families that face this battle daily. If parents don’t feel that professionals believe them and talk down to them, it creates hostility and mistrust which helps no one ……especially the child.
So I aim to bridge that gap and have the discussion across all sectors as parents know their kids best, we don’t need an masters to do that. Thank you so much for your comments, its so good to raise awareness and I appreciate the opportunity to do this via this blog.
Mrs M
AUTHOR Mrs W
Posted on 2:16 pm September 30, 2015.
Thanks so much for sharing Mrs M, we are currently going through the ASD diagnostic process with our eldest son. His behaviour is very similar to that described and we are also facing the same incredulity from others that he could possibly behave this way when he is ‘fine’ at school, with others etc. There is very little understanding of the stress created by acting ‘fine’ all day for our son and as a parent the implication is then that the issue lies with us. High functioning autism is very much a hidden disability and we have to keep working together to help others to see that acting ‘fine’ comes at a detrimental cost for some children.
AUTHOR Mrs M
Posted on 5:34 pm September 30, 2015.
Hi Mrs W, thank you so much for taking the time to comment and I am so glad to hear you can relate to my blog. I like to think in a small way we are helping to raise awareness through these discussions and blogs like this. And hopefully the diagnostic process will give you some answers and open some doors for you all! Mrs M
AUTHOR Jax
Posted on 1:06 pm September 30, 2015.
This is absolutely spot on. Could we get it sent to every school and every teacher training college everywhere?
AUTHOR Mrs M
Posted on 8:30 pm September 30, 2015.
Hi Jax, I wish …shall we start a petition ha ha !?
AUTHOR Kelly Evans
Posted on 8:19 am September 30, 2015.
Wow, I’m still crying and it’s a mixture of sadness and joy. I have been beating myself up wondering what I’m doing wrong. My five year old son (also diagnosed with Autism and adhd) acts in the very same way as your son. Even my partner says he’s like it cause I’m too soft. I just wanted to say Thank You. I always find it hard to explain to people just how autism effects James and us as a family. You really described my daily life. We are just starting our journey and it’s great to find advice from people who are on the same road.
AUTHOR MRS M
Posted on 9:53 am September 30, 2015.
Hi Kelly, thank you so much for your comments. I am so glad you could relate to it, its something so many families struggle with and know that you’re not alone. It means so much to me that I can help in a small way to reach out through social media to help people understand what it is like to live in our shoes, as it can be a very confusing and isolating journey. Hopefully we can help to open up the communication links between home and school as we should to be looking at each child as a whole not as two separate children; one at home and one at school…… as the two areas of a child’s life are so interlinked. Keep strong
Mrs M x