Autism

Insights

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If there is one thing I struggle to get my head around is how autism can be seen as being “different” It’s so complex how can it not be seen as anything other than truly amazing.

For a 5-year-old to have a photographic memory, recognise complex shapes and love working with high digit numbers is nothing short of astonishing, If this is “different” then sign me the hell up as I would love to have these abilities! 

Autism comes in all shapes and sizes which is whats so amazing about it. The spectrum is so vast no two children are the same.

Autism normally presents itself by the age of 3, however, parents may notice signs as early as 12 months. For us, Teddie hit all his milestones when he was a baby, it wasn’t until he was over 1 we noticed a real change in how he saw the world. It honestly felt like one day he was ok then all of a sudden he wasn’t.

Teddie walked early, would high five his brothers, made eye contact with you, was so happy & even said a few words then it was like a switch had been flicked, he was a different boy.

Throughout my studies, I come across lots of theories on why children behave in certain ways (neurotypical and ASD children) Children all develop at different stages during pregnancy and after birth. As a parent of 3 boys, I’m still met with the need for my children to confirm but the fact is children will be who they want to be.

I’ve never felt the need to find out why Teddie has ASD. What we do know, however, is environmental factors & genetics strongly influence the risk for developing ASD. Do any of these apply to us? I’m not sure but I do ponder on a few questions.

One of the main issues Teddie faces now is recognising facial expressions and the emotions behind them. The question I always ask myself is what changed from when Teddie was a baby/toddler to now?

Studying and research have taught me infants regularly show facial expressions of sadness and happiness despite never being taught such emotions so this has to be something that is built into us.

A study I worked on a few years ago on how babies congenitally blind will smile when they are happy and cry when they are sad. These infants have never been taught or seen these facial expressions so it backs up the theory that these emotions are built into all of us. 

With this in mind, how is it possible for Teddie to be able to regulate all emotions at such a young age but find it all so hard now? Why does Teddie have empathy towards others but not towards himself?  

Did something happen for these changes to make such an impact on him? 

Even if my questions were answered it wouldn’t make a difference, in all honesty, I (we) would never want Teddie to be any different from the amazing kind-hearted boy we all love so much.

The mind works in mysterious ways & to complex for any of us to ever fully understand. No two people are the same which can only be a good thing. 

We love our Bear more than he could ever know.

 

 

 

Masking & triggers

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Teddie has this ability to appear to not be listening or paying attention but in fact, he is taking it all in without us even knowing.

Teddie lost one of his front teeth last week, I hadn’t even realised it was wobbly.
We were playing in the pool when my hand slipped away from Ted’s and managed to flick his tooth with one of my fingers. Out of the corner of my eye, I spotted a small white object fly past me, yep, I had flicked his front tooth out!

After many failed attempts to put the tooth back into his gums, Teddie seemed ok with what had happened.

Teddie has already lost his 2 bottom teeth so we knew how to approach the situation. We knew there would be 1 issue we needed to avoid- The tooth fairy.

Whenever anyone mentioned the tooth fairy Teddie would just scream

“No, No, No” loud!

We had never discussed what happens when the tooth fairy comes as Teddie never allows us to talk about it.

I’m not entirely sure as to why he has an issue with the Tooth fairy but when you break it down who would be excited about a strange person coming into your bedroom at night when your asleep and your parents aren’t there?

A few days later Alfie lost one of his teeth. Alfie showed Teddie his tooth and to our surprise, Teddie spoke as clear as day;

“Tooth under pillow, tooth fairy bring money”

Although Teddie cannot allow himself into certain situations he is more than happy to see others through it. Teddie was so happy at the thought the tooth fairy was coming for Alfie but couldn’t allow it for himself.

Teddie has an ability to mask a lot of his traits when he is in a good place but at times (of late) Teddie displays waves of different emotions (we call bubbling) which normally indicates something isn’t quite right for him. We can go from complete normality to back to square one where he needs to change his clothes every time the thinnest spec of water gets on him.

The last few days Teddie has come home from the school in a different T-shirt, although he is excepting of the change of T-shirt (progress) there’s a reason as to why he needs to constantly change his top. Although we may not find out whats bothering him we need to put things into place just in case the situation escalates.

Organisation is the key for Teddie, it’s hard to remember everything he needs but if we want the happy loving Teddie it’s our responsibility to ensure he has everything he needs to get through the day otherwise I feel I have failed him.

Teddie hasn’t needed his octopus or 3 minions at school for a few weeks now but when things do escalate he will revert back to them in order to bring him back up from his cloud of anxieties so I ensure he has everything in his bag just in case.

Teddie continues to push the boundaries with sensory play, you can see he wants to join in but sometimes the fear of it is too much for him to handle. He is given the time to make whatever decision he feels is in his best interest. As long as there is a towel available to wash his hands he normally gives it a go.

Teddies determination amazes me every day. We love our Bear and honestly wouldn’t want him any other way.

 

 

 

Stress, are you coping

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The constant need of wanting to do it all and to please everyone sometimes gets the better of you.

I’ve been working so hard on a presentation that has taken me forever to do, the day of presenting it was finally upon me and I nosedived.
The night before I was super organised & had everything ready. I’d made all the lunches, made crepes for the boys for breakfast, the uniforms were all out ready all everyone had to do was literally get up and get dressed- of course, this didn’t happen!

Harvey didn’t know where any of his lunch was even though it was right in front of his eyes. He went to school without any breakfast as Gareth didn’t tell him I had already made it.
Alfie was up and dressed but was playing on his PS4 (which he isn’t allowed on before school) talking to his friend so I ended up shouting and screaming at him.
Gareth was flapping over everything and just being a man who had no idea of what was happening around him.

The only one who had his shit together was Teddie, he was no bother at all even when I told him he needed to go to school in his P.E kit he didn’t question it at all, he just did it.

I dropped Alfie and Teddie off at school only to realise I’d left my laptop at home so instead of heading to my presentation I turned around and went home.

My calm and chilled morning turned into a large cloud of stress so I did what all girls do, I called my mum and cried. I was a blubbing mess – I was doing that awful ugly cry when you cannot speak through the tears. My poor mum must have wondered what the hell was wrong.

I know we (I) do too much for the boys especially Harvey who is 15. Every morning Gareth and I set our alarms to get Harvey up for his paper round. We get up to put all his newspapers in his bag then go up and wake him. We could be having an extra half hour in bed but no we are up doing his job. 

I’m a pleaser and always try to please everyone, especially the boys but sometimes I feel I’m pleasing everyone but myself. 

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I haven’t been on my anxiety medication for 5 months now, I generally feel better about not being on them but I do however have moments like Tuesday creep up on me. The medication I was on had some nasty side effects which I couldn’t handle. I find solace in crocheting and writing, this is my form of medication but lately, I can’t even fit that in.

For the past 15 years, my main job role has been a mum, this will always be the most important role in my life even when the boys grow older and leave home this will always be my main job role but of late I feel I’m in a place in my life where I’m just not sure who I am & where I fit.

Since realising Teddie has additional needs my life and job role has become one. Writing and being an advocate is something I love and will never want it to end but I am still left feeling slightly lost as to what direction I want it to lead me too.

I am obsessed with helping Teddie be the best he can be, I’m obsessed with helping others with their journey, for me I don’t think I’m ready to be anything other than that right now.

 I have 583 emails on Life with a Bear (more then I have following me) I love nothing more than reading every single one of them & sending a reply.

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Mental health can affect every single one of us, I’ve always been very honest about my anxieties but not everyone can share how they feel.  Coping alone only makes matters worse, it makes you feel isolated from the rest of the world and clouds your vision on how you think people see you.

There is always a way out from the haze that you feel you are in, please never feel you are alone. 

Mental Health Awareness week

Desensitization program…..

/ lifewithabear / 2 Comments

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Doctors appointments are like buses, there isn’t any insight then 2 come along.

These past few weeks Teddie has seen a countenance specialist & has had an assessment at EWMHS (Emotion wellness mental health service) with the aim of being offered a desensitising programme for is anxieties.

Unfortunately, the countenances specialist could not offer this programme but gave us lots of helpful tips to work on while we wait for Teddie to receive a program.

I was very doubtful Teddie would be offered a program with EWMHS as during his assessment all that was mentioned was social stories. 

“Have you tried using social stories?

How I didn’t leap over the table for this woman I really do not know so I repeated what she had said in case I had misheard her. She then started to tell me what a social story was, I interrupted her mid-sentence and said, although I appreciated her professional opinion and a description of what a social story is Teddie was past the stage of using social stories. 

I completely appreciate people study or train for years to do the job there in but unless you live with an ASD child YOU HAVE NO IDEA. It’s bloody hard work & it’s a 24/7 job, not a 9-5 job where you can leave the stress of a hard day behind you. 

During our appointment, I made it clear I was not the type of parent that takes No very well. I had my professional head on and at times was as qualified as she was. So when she has the audacity to ask me if we have tried social stories I took that as an insult. Teddie will be getting on the program as he bloody needs it.

 However, I am overjoyed to say I received a letter this week from EWMHS offering Teddie a desensitization program.

I’ve come to the conclusion that the only people parents can rely on are ourselves, we have to fight at every corner to get what our children need. I know I’m to the extream but honestly, I don’t know where Teddie would be if I wasn’t.

What is a desensitising programme & how does it work?
A desensitising programme is a type of behavioural therapy that can be used to help children or adults with ASD & Asperger’s syndrome effectively overcome phobias and other anxiety disorders. 

There are many stages of a desensitising programme. 

  • COPING STRATEGIES– Assess the child’s sensitivities, to find out how severe they are.
  • PROGRESSIVE EXPOSURE– A gradual exposure to the feared object. 

PSYCHOLOGICAL PREPARATION:

  • Desensitization works best when the child feels comfortable and empowered
  • Find the thing that upsets the child.
  • Allow the child to experience the object in a non-threatening way.
  • Listen to any concerns they have, and reassure them as best as you can. 

For Teddie, his anxieties affect him more than his inability to communicate (although his speech has come on leaps & bounds) These fears hinder him daily especially using the toilet. This is our main focus however the programme will cover a wide spectrum of Teddies fears with the end result of helping Teddie to access toilets throughout his day.

We have no idea whether this program will help Teddie with his fears all we can do is try.

We will continue to be Teddie’s voice and will always fight for what we believe in.

We love our bear and wouldn’t have him any other way.

The National Autistic Society

 

After diagnosis.

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Yesterday Gareth and I were invited to an after diagnosis talk (forced selfie above) at the child assessment unit- CADU.

We were asked how Teddie was and if we had any questions- Of course, I had some questions.

  • Is a specialist school right for Teddie at this stage?
  • EHCP related issues
  • Anxiety related problems  

I would like to say our questions were answered but felt that we were slightly pushed towards other agencies rather than answering the questions herself.

In a nutshell, the meeting was to hand out leaflets and be told, Teddie is now getting discharged from the unit. It honestly felt like we’d waited for 17 months to be seen, get a diagnosis then handed some leaflet and wished good luck.

What we would have prefered was an honest talk where someone tells us they understand what we are going through. I wanted someone to say it’s bloody hard work and some days are going to be worse than others but we will get through it.

For us, we weren’t really after much help but it made me realise that other parents might need it so below is our honest parent ASD tips.

Parents top tips

The autism spectrum is a wide one, what works for one child may not work for another- in fact, what works for Teddie one day may be obsolete the next.

As autism parents, we needed to deal with Teddie diagnosis before we could help him, we needed to fully understand everything in order to make sure Teddie has everything the world has to offer.

Parenting an autistic child can be challenging at times but we honestly wouldn’t have our Bear any other way! 

To my beautiful Bear.

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To my beautiful Bear.
 

This morning wasn’t a good day for either of us, I hate to see the beautiful eyes of yours filled with tears.

You tell me you’re sad and you wanted to stay with mummy but I still took you to school, I took you because I know how much you love it.
 
You have no idea why you are feeling the way you feel, I can only imagine how that must feel, you just know something isn’t right.
 
I tell you mummy loves you every day because I really do. when I ask you if you love mummy sometimes you say No or like last night you said; 
 
“Eyebrows, nose, eye’s, mouth” while touching my face.
 
You tell me you love mummy in your own way- like when you put both your hands on my face and just look at me or when you hug me for no reason.
 
You may never say the words “I love you” you may not even fully understand the concept of love but I know you do love me, I see it in your eyes every day.
 
You didn’t want to take your favourite PJ’s off this morning, mummy knows how much they mean to you. 
I know how much you love being at home if you had your way you would never leave the house but you have to baby.
 
I heard you screaming out my name as I left when you went out the room, I didn’t want to leave you, I left you because you work better when mummy isn’t with you.
 
Mummy would never leave you unless I knew you would be ok, you just needed to break the cycle of the last few days.
 
Mummy will always be your voice, I will always stand up for you and I will always love you.
Know that we all love our Bear and wouldn’t have you any other way!
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Snow days aren’t always fun days……

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Well, we weren’t expecting snow in March that’s for certain!

It honestly feels like half term but without the added expensive, other than the boys eating us out of house & home.

Having snow is very much like the hottest day of the year (other then it being the coldest) everyone heads over the county park for hours of fun, but for us we haven’t been able to join.

It’s taken Teddie 4 days to go out in the snow, even when Gareth & I had a snowball fight in the garden with Harvey & Alfie Teddie wasn’t bothered in the slightest. Teddie’s fear of getting wet overrides the enjoyment of having fun in the snow.

Walking to school on Monday brought a challenge in itself. Teddie had new school shoes but wouldn’t allow them to get wet so we walked in his wellies- which is fine I hear you cry, however Teddie will not allow you to change his shoes once he’s at school, new or old ones.

We have spent the week segmenting phonics using alphablock pec cards, drawing, crying, and eating half a ton of bread!

This morning Teddie saw I was getting his pants and socks out, he came up close to me and said;

“Teddie stay with bubby (mummy)”

Having even a few days off school I fear we will be back to square one with his transition. The first day back to school after half term is normally fine but Tuesday onwards he’s normally very unsettled, this could possibly be the same next week.

Cabin fever has certain set in, I haven’t been able to get anything done as Teddie likes the laptop on, only Godsend is he never wants the Tv on!

I am well and truly over the snow, I’d like to be able to leave the village without fear of not getting back in but most of all I need the routine back for Teddie.

Leaving the house has always been a battle for Teddie if he had his way he’d stay at home in his rocket PJ’s all day every day!

We love our Bear and wouldn’t have him any other way!

What if……..

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The first week back to school has been a rocky road, to say the least. I’ve struggled to get Teddie out the front door in the morning’s- when I do he wants to enter the school through the office rather than the playground/classroom door ( other than today)

As Teddie seemed to settle one day the next something props up which sets him back. Just when we thought he had overcome the worse of Teddies anxieties towards his school uniform (mainly his jumper) he gets his sleeve wet which sends him into a meltdown.

Yesterday was Teddie’s school disco, the children were very excited at the idea of a boogie straight from school; I heard the laughter from the children who were changing into their party gear. For Teddie this wasn’t the case, instead of laughter, all I could hear was crying & fear.

As I entered the school, I found Teddie hunched in the middle of the corridor not knowing what was happening. Teddie first thought the children were changing into their P.E kit but soon realised they weren’t- didn’t help matters. 

Teddie was so overwhelmed by the change of routine I sat hugging him in the middle of the corridor till he settled, once he did we headed home.

There’s bound to be certain events when we feel sad Teddie isn’t joining in or experiencing like his peers are. 
The school disco, non-uniform, dress up day, and even school trips are all events the children get excited about

but what if you aren’t………?

  • What if you don’t care there’s a school disco
  • What if the fear of breaking your routine overrides dressing up like everyone else?
  • What if you don’t fully understand what is happening?

I’ve been so worried Teddie is missing out of all these events I failed to see if Teddie even wants to do any of it. We know when Teddie is gonna be okay and when he’s not he, so why are putting him through all of this unneeded stress?

 

Next week is world book day, the children are allowed to come as a character from their favourite book-or the easiest costume a parent can buy or make. 

World book day has always been a MASSIVE event in our house, I love nothing more than staying up late making the boys their costumes but this year will be different.

I would like to think Teddie will partake in the dressing up as he loves a dress up but as it’s a school day I’m not so sure he will.

Alfie has chosen to go as Where’s Wally- something he went as a few years previous. This year I have brought off the rack as I’m hoping Teddie will go as Where’s Wally as Alf is so the outfits NEED to the same!!

If Teddie decides on the day he cannot dress up, it’s completely fine he can go to school it whatever he feels comfortable in- Will be his uniform.

All we ever want is for Teddie to feel safe and happy where ever he is if that means him not conforming then so be it.

Considering the addition needs, Teddie has to contend with he always has a beautiful smile on his face, he’s ALWAYS polite & is the “kindest giant in town” (Still obsessed with the book) what more can we ask for.

We love our Bear and wouldn’t have him any other way!

 

School diners & emotions…..

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A few weeks ago Teddie tried school dinners for the first time, the pictures above make my heart melt.

Something so insignificant to others is a massive achievement for Teddie, us & the school. Teddies teacher very kindly videoed his first attempt at lining up with his tray. The reaction from the other children, teachers, kitchen staff and midday assistances was honestly like they had all won the lottery. They were all so pleased Teddie managed it all, & he even ate it!

Teddie is still insisting on taking his lunch box to school on the days he has school dinners as its part of his morning & lunchtime routine. 

This week we have had snow again, as much as Teddie enjoys the snow he doesn’t like it around his school shoes. He became very distressed when walking to school he’s trying to avoid the snow as much as possible- which is impossible at times.

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Teddie’s obsession with Doc McStuffin has returned with a bang, we are subjected to Doc Christmas, Doc nightingale & Doc gulping gator on constant repeat!

Along-side Doc McStuffins Teddie is OBSESSED with Julia Donalson’s book

“The smartest giant in town”

We all know it word-for-word even the teachers as he loves to read it at school. Teddie copies the giant throughout the story especially when he loses his trousers!

The last few months we have also been reading Anna Llenas’s book;

“The colour monster”

Throughout the book, it has different colours represent a feeling, which encourages children to open up and discuss how they feel. I have been reading it aloud even when Teddie isn’t paying attention and it’s obviously been going in.

While watching Doc McStuffins Gulpy Gulpy Gators, Doc fixes Gustave, the green gator as he’s broken. Teddie came up to me and said;

“Gator sad”

This is the first time I have witnessed Teddie associating a feeling & emotion with what he’s seeing, he was completely right Gustave was sad!  Teddies school have also said he has been using happy & sad to learn things he likes and dislikes! I would highly recommend this book!!

When Teddie has a better understanding of his emotions it will help with no end. His communication is increasing daily, hopefully, we can understand his worries and fears better once he hs the ability to share his emotions with us!

We love our bear and would never have him any other way.

 

 

 

 

Fight for what you believe in……..

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Since I can remember I’ve always been outspoken and always stood up for something or someone I believe in. If I think something isn’t right God help you as I’ll do my utmost to make the situation right!

Since having the boys I’ve had a fire in my belly when they are palmed off or someone tries passing the buck.
I hold grudges like you wouldn’t believe and if something isn’t resolved I’ll make it my life’s worth to make sure it is!

A few weeks ago I referred Teddie to the emotional wellbeing and mental health service for his extreme anxiety issue! Yesterday I got this response. (See letter)

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Are you f*****g taking the piss was my response to the poor lady on the other end of the phone! Seek out support and advice from Teddie’s health visitor!! I’m not getting Teddie weighed or need help with minor things, he’s ASD and has extreme anxieties that affect his daily life.
Do you honestly not think we have exhausted all other avenues before seeking out your help.

Don’t insult mine or other professional intelligence by telling me to seek help from an unqualified (in this area) health visitor!

Had they worded it, seek out help from a specialist health visitor I wouldn’t have lost it as much as I did but still, we have just seen 2 specialist health visitors who both suggested this referral!

After losing my shit with the very helpful lady Teddie has now been taking on as a patient -unless I hear otherwise but she’s very confidant Teddie will definitely be seen.

It shouldn’t take a parent having a fit over the phone to get our children appointment’s they really need! Children are being turned away before they are even assessed, this is wrong and needs to stop!
Not every parent is like me, they receive their letter and just leave it at that.

I will always fight for what I believe in especially when it comes to my children & I’ll be Teddie’s voice until he can be heard!

Don’t mess with a Mumma Bear!