Our funny Bear

 

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As I put Teddie to bed he made that pretend to cry noise as he wanted me to lay with him, something daddy does every other night but mummy doesn’t fall for the same tricks.
I close the bedroom door and return to the garden where my parent’s, Gareth & Alfie is still sitting, we could all hear Teddie calling out for me still pretending to cry so we ignore him.

Out the corner of our eye, we see a big brown bear appear at the upstairs window, Teddie.

“Mommy (he’s American lately) It’s Teddie, I’m crying”

We all look at each other and bust out laughing, to which Teddie thought was highly amusing so then started to sing Tommy Thumb.

 “Mommy finger, Daddy finger, brother finger from his window”.

He was about to go onto grandad finger but as I got up Teddie legged it back into bed like we hadn’t just seen him, the little shitbag

What made this situation so funny was this time last year Teddie could barely speak 2 words.  I generally had worry and fear behind my eyes not knowing how he’d cope with what the world had to offer.

Fast forward a year we can now have a conversation with Teddie, although at times it’s limited its still a conversation he’s engaging in.

It’s the littlest comments that make us laugh out loud like;

“Cheers” whenever he has a drink with someone.

“That’s not right”  when he sees something out of place.

“Fingers crossed mommy” when we are playing Mario on Ds

“Yes, I can” when we say no thank you.

“10 more minutes” for everything we tell him to stop doing.

“Good job” to almost everything you do.

This past year has taught me that even if you have an inability to do something it doesn’t have to change who you are. Teddie has always been confident, funny, loud & proud even when he didn’t say a word now put words into the mix he’s polite, kind, caring, loving and all the above.

Teddie receives limited speech therapy, once every few months at school his successes have come from a mixture of putting in lots of work at home & at school but it’s mainly come from Teddie wanting to learn.

Teddie has a photographic memory so 95% of his learning has to be learnt from visuals. Carpet time & speaking/learning in groups are areas Teddie struggles most with as he cannot process the information like he can if he was learning from visuals

Unfortunately, as Teddie goes through the years at school the learning is taught with a teacher at the front of the class and the children listening and taking notes, something Teddie may not be able to do.

Teddie has a revised curriculum ready for September, we are hoping he can spend more time in the classroom learning his way but also seeing how the other children learn. Teddie often likes to dip in & out of class learning if something takes his eye or if he knows whats being taught.

                                  


 

Teddie’s EHCP is now finalized ready for when he starts year one, although not much will change now the school will now receive a lot more money to help cover Teddie’s revised learning.

I read recently that schools are having their budgets cuts, a decision the government feel is a good move. The Guardian reported that 80% of schools are having to cut numbers of teaching assistants and support staff due to the new national funding formula for schools in England.

This is something that has affected our school resulting in only 1 teaching assistant per year rather than 1 per class. These changes open us up to comments such as;

“A teacher has 30 children to look after but special needs child has their own 1:1, how is that fair”

“My child needs help but he/she isn’t getting it but others are”

I completely agree there is not enough funding going into education, schools, especially our’s go above and beyond to make sure the children are not affected by these changes but the parents do not always see the bigger picture or help the situation by making comments although not always directed to us (Teddie)

What many parents do not always understand is for a child to receive a 1:1 procedures need to be met & put into place. Yes, Teddie has his own 1:1 that’s because I have fought tooth and nail for him to receive the funding he needs for him to attend school.

What many parents also do not understand is Teddie’s 1:1 will only be present in the classroom while Teddie is at the school, if Teddie leaves the school the funding leaves as well.

A special needs child does not start school and automatically have own LSA the parents needs to start the procedures months, years in advance, even then it’s down to the local authority to decide if a child warrants a 1:1. 

Our school has bent over backwards for us, for that, I cannot thank them enough but I think that due to us having the respect for each other. We could have sent Teddie into school and moaned about what should & shouldn’t be in place for him instead, we

worked together a year before Teddie even started school to get him what he has today.

Before you make judgemental comments on what one child has but your child hasn’t stop and think about the lengthy process we have been through just to get our son through the school doors every single morning. 

 

Desensitization program…..

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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

 

To my beautiful Bear.

 

 

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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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……..

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!

Unplugging your kids, good luck……..

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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!

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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

‘No school’

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!

 

Assessment & development……….

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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. 

26982471_10159878054880607_1913298177_oAlthough 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!

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