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…..

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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.

 

 

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……

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……..

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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