Snow days aren’t always fun days……

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!

Unplugging your kids, good luck……..

27535821_10159942152960607_1456732179_o

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!

13774_10155269833005607_1499861285633200969_n

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!

 

Just another day……

IMG_6781

We have a poorly boy!

Yesterday and this morning were particularly hard as I had to try to explain to Teddie he has to stay at home as his cough had got the better of him! 

I’ve used his Pecs cards again this morning to show him he’s staying at home as he has what he likes to say a

“poorly sore”

Teddie seemed to understand what I was getting at- or he could have just run out of patience & just tolerated my rabbiting on about “poorly sores”

Monday Gareth and I had a meeting with the school senco & Teddie’s class teacher. Between us, we completed Teddies one plan. (One Planning is based on the principle that planning should start with the person and must have regard to the views, wishes and feelings of the child, child’s parents or young person, their aspirations, the outcomes they wish to seek and the support they need to achieve them, SEND Code of Practice: 0-25 years, 2014, Section 9.21).

At the end of every One plan, we were asked what our goals and aspirations are for Teddie’s future. Of course, we would naturally say just say for Teddie to be able to talk but there certainly is a bigger picture that even us as parents miss at times. Between us, we set some end for years & future goals.

Every parent wishes their child could experience everything the world has to offer including us but I find it really hard to express how I see Teddie when he is older- can he not stay our baby forever?

Whenever Gareth voices his views on Teddie he would tell you the only issue is Teddie’s lack of communication.

Gareth’s would tell you:

“If Teddie could speak he would tell us his worries and fears & it would be easier for us to help him”. 

I completely appreciate Gareth’s opinion, however, Teddie’s worries and fears along with his lack of communication has to be seen as a whole and not separate issues.
If Teddie could verbally communicate would he still have the same worries, anxieties, obsessions & rigid thinking? I feel he would, but he would use words to express himself better about his fears.

Since my last blog, (It’s just not good enough) I had been asked to speak on the Dave Monks BBC Essex show. He very kindly raised our concerns over the waiting time to see CADU (Child assessment development unit) and the dispute over the funding. 

Essex County Council has since been in talks with the North East Essex Clinical Commissioning Group & found a solution- the unit has been reinstated until the next financial year.

We are not quite jumping for joy, I’m still not confident Teddie will be seen by April, he turns 5 in May and CADU only see children under 5- there is a chance they won’t see Teddie at all.

Our local paper also covered our concerns with waiting times & the problems we are facing resulting in the lack of support we are receiving. (see link below)

Teddie has an appointment with his paediatrician on Monday, I am hopeful she will be able to offer us another pathfinder so he can get the help and support our Bear is entitled too.

Colchester Gazette

It’s just not good enough!!

image1

As the whole house was fast asleep last night (dogs included) I was wide awake annoyed about this letter we received!

Just short of a year ago Teddie was referred to CADU (child assessment & development unit) 11 months later we are still no further forward with no appointment in sight as the commissioning of the child Assessment & Development unit has temporarily been put on hold. 

How the hell can that be possible, how can children be made to wait that long only to be told the service has been put on hold because they want to make cuts, for a child to wait that long surely that shows a need for the unit??

I understand there is a process children have to go through in order to receive a diagnosis but why can’t the child’s paediatrician just be able to give a diagnosis, after all the referral has to come from them, surely they are more than qualified?

The level of special needs care in our area is nothing short of diabolical!
2.5 years ago a referral was made for Teddie to see speech and language, in all that time Teddie has only ever received one group course covering a 6 week period (once a week)

I introduced Pec off my own back having covered it while studying. Teddie see’s a therapist once in a blue moon but only to see what level of PECs he is working towards. We are very lucky Teddie’s school are on the ball with PECS, they are enjoying using it and have witnessed Teddie’s confidence grown since he started in September. 

Teddie’s paediatrician called this week and has asked to see him again this month. I wonder if she’s aware we are still no further along then the last time we saw her a year ago.
With no appointment in sight and Teddie getting closer to being 5 we will need a new referral as CADU only see children under 5, I can only guess how long the wait is for that!!

It goes without saying Teddie has a label of special needs as he is unable to Communicate but at times I feel Teddies been handed the shit stick, he has slipped through every net there is, I feel the system has completely let Teddie down!

In my opinion, I don’t think Teddie is aware he’s any different- he’s so confident & never hides from life- for that, I am in awe of him! 

Having a label does not define you, you are who you so embrace it, I know Teddie does!

 

3 weeks in…..

IMG_6326 (1).JPG

We have IPEA funding people!!
Individual Pupil Resourcing Agreement provides additional resources to schools to support an individual pupil’s needs, the funding ensures schools have sufficient resources to meet the needs of a pupil with High Needs. We applied for IPEA in July, finally, it has been awarded!

Teddie’s transition into reception could not have gone any smoother, we had a few issues with lunch cover the 2nd week but they were ironed out soon as they arose.
Teddie is eager as ever to get into school, it’s so refreshing to see how happy and engaged he is.
Teddie’s teacher and LSA’s are angels sent from heaven, the time and support they have given Teddie is astonishing. I tell everyone who works with Teddie the approach is everything for him & first impression certainly go along way in Teddie’s book.
I honestly feel at ease and relaxed knowing Teddie is in safe hands while he is at school.

Pecs is working really well in the school setting, Teddie has even got changed for PE, something I never thought he would do! With the added support from his teachers and watching the other children, he did it, he actually did it!!!IMG_6349 (1)

I’m kinda feeling slightly redundant the last few days I’ve tried hard not focusing all my time on Teddies needs while he’s at school and more on my own, it’s surprising how much organising & time Teddie requires just so he can communicate!

Teddie is very particular (obsessed), although he is not adverse to change he likes to keep to routine as much as possible. At school, Teddie looks out for me at the end of the day, I wonder how he would be if one day someone else picked him up. Gareth collected him from preschool once- he cried and cried!
I want to try and take a few steps back from Teddie, allow him to make his own choices and not rely solely on me! A few weeks ago I would have never allowed myself to think about easing off but dealing with my anxiety issues I feel more relaxed about certain situations.

I am my own worst enemy, I’m sure I’m not the only parent (mum) who rants about having to do it all, kids, house, jobs, dogs and now add studying into the mix, I have so many offers for help but I never take anyone up on their offer as although I want the help I don’t- make’s no sense I know!
Trying to write when Teddie is around is so hard, like now for an example All I am currently hearing is the ‘I’m a gummy bear’ song blaring out of Teddies kindle, instead of the normal head-butting version we have what sounds like a cassette tape (showing my age) being played in slow motion!!!! Will add the link below for you all to appreciate or to block it from your devices before your child stumbles across it! 

Have a good day, people……

The gummy bear song 

Teddie’s mind-numbing video

IMG_6348 - Edited (1)

He loved it…….

21319275_344262132664613_4761224654052954960_o.jpg

The day I had been dreading has been and gone. Teddie loved his first day (morning) he, of course, had his moment at school but they are moments we were completely expecting!

Teddie needed to arrive at school at 8.45, We left the house at 8.40 (literally live around the corner) I didn’t want to hang around as Teddie isn’t always good with waiting. As soon as we got into the playground off came the coat and he wanted to play on the play ground but unfortunately, he didn’t have enough time.

Teddie had a bit of a melt down as he couldn’t play outside, I ended up leaving him crying which I really did not want to do.

I got a call from the school at 10.30 to say all was ok! Was very pleased to hear Teddie had handed over a PECS toilet card & went without any anxiety!

Teddie will be a learning curve for us all, even me, take today as an example- I was under the impression Teddie would want to go straight into class like he did at preschool but he had other ideas.

After chatting with his one to one & teacher this afternoon they mentioned the children will start their day with a phonics lesson & there will be no out door play first thing. Being informed with this I will get to the school earlier tomorrow so Teddie can play in the play ground before school.

All we can do is take one day as it comes!

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

 

Dear parents….

IMG_5891 (1).PNG

I’ve stood in your shoes on more than one occasion, this may be your first experience with school or like me, you may have already been through the process.

Our Teddie (Bear) is due to start school on Tuesday, He is extremely clued on, Caring, loving & kind hearted boy but unfortunately, he cannot communicate with words as Teddie is non-verbal.
Teddie uses a complex form of communication known as PECS (picture exchange communications System) It requires Teddie to exchange a series of pictures which will correspond to what he wants or needs.

Some might say Teddie is hard work (I do sometimes) We have good days and bad days just like every family does. We have days when I question is Teddie any different than the next 4 – year -old then the minute I think it somethings happens and I’m literally pulling my hair out.

We all think the same when we see a child acting out or a parent who isn’t conforming but really we should be standing together as even if you hate to admit it you probably have been in the shoes of someone who is struggling with a strong minded child.

As your son or daughter embarks on their new journey at school I’m asking you a massive favour! On your walk or drive into school next week please would you support your child in educating them with basic knowledge of a special needs child. Tell them they kind, caring and friendly just like your child but they just need more time to adapt to their surroundings or situations.

Tell them, A special needs child can differ from each induvial.

  • They can struggle with their behaviour or ability to socialise, for example, they struggle to make friends
  • Reading and writing can be an issue but this could be because they have dyslexia
  • Their ability to understand things and their concentration levels may not be the same as your child
  • They may be a physical disability
  • Communication may play a vital role in their disability.

I have no concerns with Teddie trying to make friends at school, my main concern is the other children not making friends with him!
You and your child could make the difference of Teddie experiencing everything and more the infant school has to offer- the alternative is him having to leave the school as it’s made to hard for him.

We have everything in place for what Teddie will need for when he is at school but unfortunately, we cannot control who likes who. The thought of Teddie on his own at break and lunch time keeps me awake most nights.

Even without any additional needs is scary stuff starting school at any age, trying to fuse them friendship groups can cause stress to an adult let alone a 4- year- old.

Teddie will be eager as ever to get into class come Tuesday, he’ll be ready to make new friends and knows he has to be kind to everyone.

Please send your child to school no matter what age telling them to ‘Just be kind’!

 

IMG_5883

 

Love everyone the same!

Teddie ball (1).jpg

I love that Teddie is never afraid to approach children who are happily playing, he runs towards them with a spring in his step, I can see his determination in his face to make the boys who are playing together his friends. As he gets to the boys, who are playing with their nerf guns, he just stops by their feet with a massive smile on his face and just stands there. I can see both boys just staring at each other then back to Teddie, knowing what they are thinking but hoping to hell they don’t say it out loud, would hate for Teddie to witness nasty behaviour when he seems so happy. But within a second of standing there, he joyfully runs back to us as if he has achieved the task he was given. 😍😍💙

Had one of them thoughtful days yesterday, as we drove around seeing all the lovely faces the sunshine has to offer I noticed how different we are actually are.
Made me question what is being different ‘normal’

  • It is a girl with blonde hair, a girl with red hair, A girl with black skin or white skin.
  • Is it a boy with brown hair, a boy with black hair, a boy who is mixed race?.
  • Is it a lady who’s a lesbian? or a man who’s gay?
  • Is it a teenager with special needs?

As we grow our babies inside us all we ever want is for them to be healthy. As soon as we reach one milestone we worry and threat about the next but in all honesty, if I was told there was a problem, health wise with any of my boys I would still love them as much as I did the previous day.

There really is no such thing a being different, we are all different without having any additional needs but unfortunately, society has led some people down a road that is filled with hatred.

The only thing that’s wrong with being ‘different’ is if you allow the judgement of others to bother you so be pragmatic, Walk tall and walk your path with a humble heart and be proud of being you! Would you really want to be all the same- I know I wouldn’t.

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

Dear Teddie…..

45584_10151763610166797_48402727_n-COLLAGE

Dear Teddie

The day I found out I was pregnant with you, I knew then you would be our special boy. You came as a complete surprise but we loved you the second we knew you were coming.

We had your name picked before we even knew you were a boy- of course, you were going to be a boy. It came to no surprise when we were told yes, in fact, you were a boy (it has always been Rach and her boys, we couldn’t change it now after all this time)

You were the perfect baby, fat and chubby like babies are meant to be. We slept in a feeding chair for the first few months. Daddy used to tuck my legs into our duvet so I got a sense of what our bed felt like. I could have fed you and put you in your crib but I never wanted to put you down.

I used to catch Daddy staring at me when I used to smell & kiss you while we snuggled, I honestly loved you so much (still do) I just couldn’t leave you alone.

You were the easiest baby, from an early age you insisted on being in bed by 5.30, It took us years (age 3) to drag out your bedtime too later. We never did anything in the evenings as our Bear needed his bed, we couldn’t even whisper the word ‘bed’ as you would want to go up.

You have always been confident & strong minded (you take after me for that) even now you never let your differences stop you, you are who you are for that there are a few things I want you to know:

  • 1: Never stop being you, even on bad days when you see me falling apart (or rocking in the corner) these days don’t define you or meant to hurt you. As you grow up you will see everyone copes with issues in different ways- it is by no means your fault when you see me fall.
  • 2: Your passion to succeed will not only become you, it will set you up for life. Every hurdle you face or new topic you have to learn you have always carried it out with perfection. 
  • 3: It’s never as bad as you think, The longer you procrastinate or avoid doing something, the harder it becomes. If you fail at least you tried!

Today we will face a battle like we did yesterday and will probably tomorrow but battles are there to be won.

You have a long road ahead but Daddy, Harvey, Alfie and I will forever be by your side!

IMG_5058-COLLAGE.jpg

 

Is it bedtime yet, for me!

IMG_5003

I’ve escaped upstairs to have a very early bath! It’s been one of them days!

Broadband has been playing up again so I called BT to have a rant and went through all the mind numbing questions and task. Any parent will understand the words “can you turn your broadband off” even without having a child with complex needs it’s basically like saying world war 3 is about to begin! As I did what I was told I waited for it………WHAT!!! Harvey came running down the stairs moaning as he was in the middle of some stupid Fifa game, Teddies screaming as he was watching some crap about opening a kinder egg, Alf was the only one not moaning!

We got through it all by Teddie throwing my birthing ball (FYI I never used it) up the stairs and letting it roll back down while the other two had Gareth’s boxing gloves out and punching each other in the hall way upstairs!! Dinner was late going in the oven as the very lovely lady from BT was telling me all about her holidaying in the UK (thanks for that). I did lots of different variations for dinner, Chicken and bacon Kievs for Harvey while Gareth and Alfie had chicken wrapped in puff pastry, chips for Gareth, couscous for Alfie!! Teddie wouldn’t eat any of that so he had just Chips! He, of course, wasn’t happy with that and got every PECS card he could find of chicken nuggets and gave it to me- we don’t have any chicken nuggets (kill me now!)

Tomorrow BT are coming out, again so the afternoon will end the Same way today has, cheers for that!!