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