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!
I know we aren’t the only ones who have woke up first thing in the morning and thought S**t we forgot to plug the Kindle or Ipad in before we went to bed, hell is about to break out!!!
Having 3 children with roughly a 5 year age gap we have parented with & without technology.
Mobile phones had only just taken off when we had Harvey, the dark screen and the one game (snakes) was not appealing enough for me to hand the phone over to him when I needed him to be quiet, He did, however, like to use my brick of a phone as a teething soother!
Even years later Harvey never had any devices as a young child nor did Alfie when he came alone.
Harvey got his first console (ps2?) when he was about 8, think it was Gareths old one we certainly didn’t go out and buy him one at that age. We brought Harvey an iPod when he was about 10 as he broke his hand & arm just as we were about to fly out to Turkey (we still went)
We then brought Harvey an iPad for Christmas when he was 11, he never asked for one but all his friends had one & we knew the secretly wanted one.
Alfie got a kindle fire on his 8th birthday & got a PS4 on his last birthday, age 10.
Oh, how times have changed since the older two were young. Homework is now online, maths test are online everything is online now, mainly, as most households have internet access in their homes.
I got a kindle fire a few years ago for my birthday, Teddie was about 2. The minute I spotted a kids game with Mickey Mouse clubhouse in it I downloaded it and handed the kindle to Teddie, BIG MISTAKE!
Our house is now filled with stressed out kids & parents arguing over where the bloody charger is!
The kindle charger is the same as the PS4 chargers, we have 2 kindles, 2 PS4 but only 1 bloody charger. 4 iPhones, 1 iPod (still going strong) 1 iPad but only 2 chargers, got loads of plugs but no leads!!
As a rule, I don’t set a time limit on devices but what I do do is monitor the children’s behaviour when they are on it.
I wrote before about the effects screen time has on children but even if I haven’t studied it the evidence shows itself.
When the boys (Harvey & Alfie) have been on their consoles for a few hours all I hear is banging on the floor, moaning and crying. To say it wines me up would be an understatement, it boils my blood and all I wanna do is shout and screen at them. It’s a bloody game for Christ sake but, it’s important to them so I do a little (sometimes a massive) inside scream to myself and give them a warning about their anger and frustration forwards the GAME!
Just after Christmas, we stopped Teddie having any electronic devices in the morning. Teddie was getting so distressed when I was telling him to pack away his Kindle as he had school, Teddie would just say
As much as devices can be a lifesaver they can also be the devil!! Teddie becomes easily wound up, screams ‘it’s not working’ especially when we are out as I cannot find a bloody wifi source, the game is lagging or worse still the battery goes!!!
Every night at bedtime we remind Teddie ‘No Kindle, No laptop, No iPad. Teddie only ever has the Kindle or laptop but if we didn’t cover all devices he’ll think he can have it as we haven’t said no to it-he’s not stupid!
When Teddie has his Kindle he goes off into his own world, he completely loses sight of what is going on around him. He doesn’t interact with any of us which really makes me sad. Once the Kindle runs out of battery that’s it for the day, you generally know when that happens as he throws it in the other direction!
Since we have stopped him going on devices morning, noon & night he plays more with his bricks & certainly bangs more often!
For us this works, it may not for everyone else, we are not the perfect parents, our children will have their devices when we r at a restaurant, in the car or on a long flight but we no longer allow them to have them all day.
FYI, the 101 ideas on how to unplug your child are crap!
Haven’t blogged for a while as didn’t want to jinx anything.
A few months back Teddie was given a verbal diagnosis of autism by his lovely paediatrician- but like most things, we had hurdles in our way.
As many of you are aware Teddie has waited over a year to be seen by the child assessment unit due to Virgin Care taking over in our area.
Teddie’s paediatrician felt it was best for him to be referred back to her for a clinical diagnosis. We were told Gareth and I would need to attend a multidisciplinary hearing in a few months time.
Of course, this isn’t what happened…..
To cut a long story short Teddie’s paediatrician could no longer offer a clinical diagnosis due to changes in her department that were out of her hands (wanted to bang my head against the nearest brick wall!) we would have to wait for a child assessment appointment.
But, I can now say,
After a home visit just after Christmas, assessments in the unit & a multidisciplinary hearing yesterday we finally have the autism diagnosis in black and white.
It’s been a very long process, a process that should not take that long.
I have the up-most respect for the lovely ladies at CADU, they are trying their best for the children and their families but their hands are tied.
Although we had waited what has felt like a lifetime for this appointment, I sat in the waiting room just staring at this door.
The other side of this door represents so much to children & their families, how can Virgin care think this service is not needed?
For us, all the waiting is finally over. we knew & had accepted Teddie was autistic a long time ago. I made it clear to the doctor we would continue to support Teddie regardless of what the outcome was after his assessments. This is not the same for all families, they struggle to come to terms with their child’s diagnosis.
Teddie didn’t need a diagnosis of ASD he already had one for complex needs but for him and his future he needed it, he deserved it.
We want Teddie to embrace who he is he’s not ‘different’ he’s autistic and we could not be prouder of him.
The child assessment unit is under review again in April, I cannot stress enough the importance of these units, for the children and their parents. The ladies are doing a fantastic job but are bearing the weight of those who feel the unit isn’t needed.
The staff at CADU are the ones receiving the frustrated phones calls from parents (normally from myself) when appointments are changed or cancelled. The situation really is out of their hands.
From a parent who has waited 15 months for an appointment that should have been within 4 months, my advice to Virgin care would be not to cancel any assessment units or services until you have a replacement service in its place. You are failing the children, their parents, their schools and their community!
For us, we want Teddie to have access to the appropriate support & resources for him to further his education in whatever setting (ideally a specialist school).
We have a referral in place for Emotional and wellbeing mental health service in the hope they can help Teddie with his severe anxieties. We also have a private referral for an SPD (Sensory Processing Disorder) diagnosis.
Although this chapter has finally closed Teddie has a long road ahead of him and more hurdles to jump.
I thank Teddie’s school every day for their help and support, we truly have the most amazing support system who are all on team Teddie!
We are extremely proud of Teddie, he brought tears to my eyes during his assessment, he really is such a kind warm hearted bear!
We love our Bear and wouldn’t have him any other way!
How has 2017 come to an end already, where has this year gone?
The support we have had from family, friends and strangers who now we class as friends have been overwhelming.
I started writing Life with a Bear mainly because I felt like I was going insane with the behaviours I was experiencing from Teddie, I needed to vent my frustrations through writing. I never expected to get such a good response just from being honest with how I was feeling with Teddie’s journey.
This year has brought ups & downs from having appointments cancelled left, right and centre, Overcoming one hurdle only to be faced with another, leaving preschool and starting school.
The kindness and support Teddie has received from the staff at preschool and now at school are truly amazing. Teaching is a job but caring the amount these lovely ladies do about Teddie’s well-being goes above and beyond their job role.
In the beginning of our, journey I don’t actually think autism was something I even considered, I just thought what Teddie was experiencing was a speech delay.
It wasn’t until I started researching speech delays in children I stumbled across an article on non-verbal autism, as I read through the article it was like someone was reading about Teddie, I knew in that moment Teddie was autistic.
I’m often asked how I feel about Teddie’s disabilities, I understand why people would ask that question, I would probably ask the same thing. For me, it’s never been an issue, would I prefer Teddie not to have autism? I’m really not sure.
Don’t get me wrong at times (most of the time lately) I HATE autism;
- I hate the waves of distress it brings Teddie.
- I hate the anxieties that haunt’s Teddie daily.
- I hate the fear & sadness it brings him.
- I hate that Teddie cannot express love or emotion like we do.
- Most of all, I hate there’s no cure!.
As much as I have hate for autism, autism has made Teddie who he is. The love we have for our Bear takes over and will always outweigh the hate.
From the minute Teddie was born I knew in my heart he was gonna be our special Bear. I couldn’t take my eye’s off him and haven’t really since.
Teddies personality is infectious, he is so confident (considering) he lights up a room when he enters it we honestly couldn’t be prouder of him.
Parents often count down the years till their children grow up and are off their hands, I know we certainly have with Harvey (I’ve got my eye on his room). As much as I wanna push Teddie into the wide world we have to realise that maybe something that doesn’t or cannot happen.
For now, my everything is solely learning, researching and help educate people on what life can be like for families affected by autism.
We wish everyone who follows us a very Happy New year!
For months we have been trying to find a way to help with Teddie’s anxieties. While we have been looking for ways to help we have overlooked the emotions that come with these issues. Unlocking his emotions may well be the key to supporting him with his current anxieties.
There are a trillion different techniques for learning and discovering feelings online & in books but implementing them is no way as easy as its mentioned.
Emotions are traditionally fractionated into six ‘basic’ emotions;
Helping Teddie express his emotions when needing to use unfamiliar toilets we may have a better understanding of how he’s feeling.
We do not understand why using certain toilets affect him the way they do, he has the fear on his face whenever I even whisper the word toilet. We want Teddie to be in control of his feelings & have the ability to tell us when he’s scared, sad or happy!
We are aiming to focus on the main 4 emotions first, Happy, sad, angry & afraid I have also added “poorly”. Teddie knows when someone else is unwell but are very reluctant to brand himself whenever he is poorly.
Visual has always been everything for Teddie, we have made PECS cards for all six emotions, the school are focusing purely on the main 4 while we will cover the 6 at home. I have made cartoon PEC’s cards & family PEC’s cards showing the different emotions.
If we make learning the emotion fun enough Teddie will know them by the end of the week, Teddie learns things at a ridiculous rate.
I will start with a word bingo game followed by saying an emotion and get Teddie to pick the corresponding card. These learning techniques have proven well in the past. Teddie loves to play word & number bingo, I’m confident he’ll love this game just as much.
Once Teddie understands his emotions we will create the Emotions Wall, Teddie can use it when he is experiencing an emotion that he is struggling to express.
Last week we met with Teddie’s teacher, senco, specialist teacher and his EP (educational psychologist) to complete another one plan.
The specialist teacher will be in discussion with the class teacher and see him every term, the EP will use puppets to help communicate Teddie worries and fears. With these professionals helping we may have enough to apply for an EHCP next term, fingers crossed.
We love our Bear and wouldn’t have him any other way