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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