5 November 2017

Marvellous Monday - Talking without words: Communication and Autism




Kieran Rose Bio

A lifelong campaigner for Autistic rights, Kieran Rose has turned his passion for writing to good use, focusing on Advocacy and Acceptance for Autistic and Neurodiverse people, with his blog www.theautisticadvocate.com





The freedom for Autistic people to speak for themselves and be heard is paramount for Kieran, mostly due to the fact that he has spent his whole life immersed in Autistic life and culture with Autism diagnoses for himself, much of his family growing up and now two Autistic children of his own.  

Kieran lives in Durham, England, with his wife, Michelle, where they run their Marketing Consultancy: www.custardandbear.com (With a little help from their three children, Quinn, Albie and Olivia). The whole family all live in a happy bubble of routine, Sensory overwhelm and underwhelm.

When Jodie asked me to write an article on Communication and what, growing up, would have helped me, I kind of gulped. If you’ve read my Blog, you’ll notice I talk in the abstract often and include very little detail about myself. That, I think is related to the trauma and abuse I received as a child. Most of it was unintentional, some of it was done with love, but all of it is relatable to the experiences of Autistic kids all over the world and throughout history. We are not understood, so therefore Allistics (Non-Autistics), think it’s acceptable to try to mould us into what they would deem as ‘normal’ children and don’t realise that it’s unacceptable to do this and even harmful.

So writing about this stuff is an extremely difficult thing to do, which is why I’ve avoided it.

So, thanks a bunch Jodie! (Oopsie)

Seriously, thank you though, you’ve kind of unwittingly pushed me into writing stuff I need to write about and I think others need to read:

From the age of around 4 or 5, I remember dragging a chair from my bedroom, across the landing and standing on it, looking out the window onto the street below.

The house I lived in was on a row of houses called a crescent but it was more like a giant oval roundabout with houses on the inside and houses on the outside. It was a safe place to play, like a mini estate, with only the people who lived their driving round the one way system. So, as you can imagine, there were a lot of kids playing on it. There were bikes and skateboards strewn everywhere, cricket, tennis, football matches, giant games of tag, hopscotch, skipping ropes. A car entered the crescent and everything got picked up and dumped on the verge, then brought straight back into the road once the car had passed.

All weathers these kids were out there, jumping in the giant puddles in the Spring rains, running around in shorts when the sun blazed. And all weathers I watched them. Stood on my chair and studied the ebbs and flows of groups of children that ran and ran and that looked like flocks of birds, or a school of fish, the unspoken unanimous movement as they gathered their things out of the path of an oncoming car and then flooded back out in to the road when it rolled on.

I ached for them to knock for me, to lure me into this bedazzling world of movement and noise I watched unfolding before me every day and, they often did. I would watch them walk onto our drive and my heart would start to pound and hammer in my chest, my hands would involuntarily curl into tight fists, my fingertips, with nails bitten to the quick, pressed hard into my sweaty palms and I would sink onto the chair, knees up, as small as possible.  

I’d hear the knock on the door, the noise reverberating, echoing around inside my head. My thoughts frozen in that cavernous space so usually filled with rumbling gears and constant considerations and memory, allowing the knock to bounce around getting louder and louder until it matched the thumping of my heart and two became one, a physical BANG, BANG, BANG.

My Mum would answer the door, there’d be a muttering that I’d be unable to understand and make sense of over the noise, the constant drumming and then she’d appear at the foot of the stairs, looking up at me huddled tight on this chair, rocking ever so slightly.  

The same line every time, rote and repetition “Do you want to go out and play?”

Crying “YES, YES, YES!” with the roar of a crowd inside my skull, I’d give a barely perceptible shake of my head. She’d look disappointed and vanish. More mutterings and the door would close. The child would return to its dance through the streets and I would uncurl slowly, slide from the chair and disappear into my room. Shell-shocked, exhausted and broken hearted.

This was me at the age of 6, 7, 8, 9, onwards and onwards. I wanted to play with them. I was desperate to play with them, but doing so hurt. I tried to join in the games at school and got lost amidst unspoken rules or rules that made no sense, were illogical and mindless, that changed minute by minute and everyone seemed to know how and why and me? There was I, lost in a sea of explosive noise and blurring movement, my brain, usually charging a hundred miles an hour, slowed to a crawl, with no ability to react. 

The only thing that got me through was my ability to run. I was fast. Tag mad sense, Tag I could deal with. You ran and ran and ran, you chased and caught or were caught. But then the one who didn’t want to be caught, who claimed repeatedly that you missed them, vehemently and adamantly. But you didn’t, you touched them! You tried to explain but they took his side. 

The unjustness. The unfairness.

Football made sense. You ran with the ball, kicked it and scored. But then the ball didn’t cross the line, or you were fouled because you were too fast to tackle but nobody else saw it. 

The unjustness. The unfairness.

So… Easier to stay apart, to watch and idle, to shut out the noise and focus on the patterns in the leaves as they move in the breeze, or find a ‘quiet’ corner and lose yourself in your own head, a world of softness and warmth, where It’s safe and you can do what you want. This was Primary school. Then there was Senior School.  

A huge hulking mass of a building with a thousand rooms and tight corridors where every 55 minutes two thousand pupils exploded out into them, in an eruption of screams and shouts and pushing and barging and touching.  
A place where if you weren’t part of one group, or another, if you didn’t quite fit, you were ostracised, called out, cornered and picked on.

A place where people talk at a thousand miles an hour, where you’re expected to keep up and learn and understanding, except there is nobody teaching you, nobody explains, so all you can do is watch and try to copy. You get it wrong, you pay for it, you go back and watch again. This is how you learn to be normal, this is how you learn to fit in.

“Observe. Mimic. Fail. Punishment. Repeat.”

A constant, unspoken, subconscious mantra in your mind, protecting itself at all costs and forcing this transition,
This act.
This mask…

That’s what it really is, you’re becoming an actor, you slip on a mask. Your stims, your movements become conscious things, you control them. Your intrusive constant thoughts and process, you compartmentalise them and focus on what is going on. You hold your script in your mind, of what to say and do, how to respond, what is acceptable and what is not and you force yourself to do this, 24 hours a day and, eventually, you aren’t you anymore. Instead, you’re this constantly exhausted shadow, hiding in the light, you to everyone else, but inwardly screaming and crying because the lights, the noise, the sensations, the touches, the movement; it’s too much, it’s all too much and then the mask slips, a little bit of you peeps through the crack and someone sees, someone notices a physical movement, or you say something inappropriate, or you start to withdraw and isolate yourself. People see who you are and don’t like it, because its different, its alien to them.

This communication stuff is a bitch. Far easier to just say what you mean, and talk about nothing if there is nothing to talk about. Far easier to hide from a society that isn’t for us and blatantly doesn’t want us. A society which expects us to be something or someone we are not. Far easier to hide from a world that doesn’t recognise our talents, but only sees our weakness. And calls it a weakness only because it’s different to what it is used to.

What would have helped me?  

Honestly, part of me wants to say to be left the hell alone. But that isn’t useful. What would have helped would have been someone sitting down with me, explaining things to me, giving me real working examples, stepping into games with me and modelling, allowing me to shadow. Explaining that other people communicate in a silent way through their bodies and that I just can’t see it, so it’s ok to say that and be honest about it and to expect understanding in return. Telling me that it’s ok to be overwhelmed, its ok to have to retreat into my shell, but also someone to tell the other kids that and the parents and society at large.  

I needed someone to say, it’s ok to be me. 

I read a quote the other day which went something like:

“The difference between Autism Awareness and Autism Acceptance is that: Awareness is acknowledging something’s existence and Acceptance is giving a shit about it.”

I’m sure, everyone reading this blog is one of those people. I’m sure all of you are people who don’t take on a mantle of how hard your life is because of your Autistic child, but think how hard life is FOR you Autistic child, because accepting your child’s differences put you in a position to make life easier for your child. This is when you become innovative and personalise the way you communicate with them so it meets their needs. Then this personalisation is absorbed and put back out by the child. You help them find their path by listening to them, their needs.

You don’t need to cure them or replace their behaviours, you need to accept that some things need to be done differently, then your child will give you what you need.

You’re already halfway there: You avoid the shops because they’re busy and loud. But your kid can’t go through life without ever going to the shops. So you visit them when they are shut and stand outside, so they know how they look. You walk past the shops when they are busy so your child gets used to the movement and can glance in to see the colours. You give them ear defenders or headphones to cut out the noise. You give them their favourite stim toys for comfort. You introduce them slowly. The same with everything you do with them.  

All of this, what most Neurotypicals do not realise, is communication, just in a different language. You’re talking to your child without moving your lips, modelling the fact that you are looking for a way to make them comfortable and give them a little control. This is communication an Autistic child understands. It is simple and clear:  

You are safe. They are safe. This is safe.

That is a fantastic base upon which to build.

From youth to adult we are given mixed messages by society. We are told that differences are something to be celebrated and then we go to war over religion. That different is good and then we are sat in identical classrooms in identical clothing, taught identical things and punished when we don’t fit inside that box. That everybody should be different because the world would be a boring place otherwise. Then we mock people who dress strangely to us, or dye their hair or stick rings through their noses.

Society doesn’t want us to be different. Society is built to progress and someone who doesn’t fit into a narrow range of what provides progress is unproductive, therefore defective, therefore wrong. Autism is unproductive, Autism inhibits progression. Autism forces society to stop and think and communicate in a different way, which slows things down. Autism is defective. Autism is wrong.

Except it isn’t.  



Different isn’t wrong, different is what society fears and what society fears drives it and us forward. Different has raised us from picking at berries while hanging in a tree to a race of creatures taking their first steps into space. Different is what makes Humanity so amazing.

Communication is the driver behind that success and a difference in communication is one of the major barriers between the Autistic and Neurotypical worlds.  

It’s about time that the bridge between those worlds isn’t built on forcing one to be like the other, but accepting the differences and working on how to connect the two.

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9 October 2017

Marvellous Monday - An Interview With Kate* & Little Miss E - PDA



Welcome to my new series - Marvellous Monday's. I will be interviewing people who have a direct connection to someone who is autistic, or is autistic themselves. I am excited to showcase some positive experiences of carers and parents. There are many difficulties and challenges that we face when someone in the family is autistic, and those little achievements of success are often overlooked because of the extensive caring duties and severe anxiety that some families face. My aim is to  publish as many interviews as i can, each week on a Monday morning so that after the busy weekend of caring and the daunting week looming ahead has a positive beginning. Something for you to read, whilst you take you first breather and have your first hot cup of tea or coffer in days. I want to share the happiness and joyful moments of many families, children and adults  with the hope that it can help you as a family hold onto that thought that 'It can only get better'
 
Good Morning, thank you so much for taking the time to take part in my regular Monday Morning series, hopefully we can help everyone start the week with some positivity and an uplift. We all know how challenging and exhausting the mornings are especially if the children are suffering with back to school anxiety.

I for one, would like something joyful to read, as we struggle on a regular basis here. If you have followed our journey, you will know that Lola really doesn’t cope well in the mornings and Connie –Mai is finding it increasingly difficult to become accustomed to leaving me at the school gates. 



What a great way to start the week, by sharing all those positives, some tips for the difficult times and telling us a bit about your family and those massive milestones you’ve reached that you didn’t think possible?


So can you tell me a little about yourself and you family and the connection that you have to Autism?

We have one amazing daughter who is 6yrs old. We took her for a private assessment early this year and she was diagnosed as we believed she would be, with ASD (Autistic Spectrum Disorder) with a PDA (Pathological Demand Avoidance) profile.

She shows many classic 'Aspie' Girl traits and also a very high level of demand avoidance as you'd expect with PDA.

We are lucky to have a very supportive family. I have family members who are Autistic but we didn't know anything about PDA until researching Autistic traits combined with a passion for role-play, and PDA showed up.
 

Its so different isn't it? I had the "Light-bulb Moment" commonly described by parents of children who fit the PDA profile.

So,  tell me a little about how you manage this positively?


Our daughter has helped us look at everything through a different lens. We live differently totally on purpose and take things very slowly to make life as inclusive for her as possible.

Dealing with demand avoidance daily benefits from extreme flexibility, acceptance, and patience from everyone. When Miss E gets overwhelmed she needs time to rest and reset - a lot of time sometimes! We follow her lead as she is an only child which is a very different dynamic to managing with siblings and their needs.

We know she is always doing her best and if things are challenging for her at times we just hope we can help her stay full of confidence in who she is which is awesome, funny, self assured, tuned in to her needs, focused, interested, full of beautiful smiles and cuddles, and so much more!


It’s definitely exhausting having to remember all of these strategies and positive communication to keep anxiety and those shutdowns at bay. You sound like you really have it worked out, like you say though, its a very different dynamic when you have multiple children and one is trying to cope with having such extreme demand avoidance. But equally its still very very challenging. 

We are really mindful of her triggers including sensory stimulus, demand avoidance plus social & communication challenges and support her the best we can in making her environment and life circumstances the best we know how.

I believe the best thing I can do often is take care of me and deal with the things that trigger me so I can can hold a calm space for Miss E when she needs it.

What are your three top tips for someone struggling to deal with the morning routine and keeping everyone happy? – I for sure could do with some extra ‘Go to’s’ up my sleeve for the mornings.

We don't really have a morning routine as we home educate and always have chosen that. Our beautiful girl wakes around the same time each day but according to her natural rhythms. She isn't often very hungry and usually wants to play a while before she's ready to eat.  I'm always starving, so I prepare something the night before ready for me to grab when I get up. She chooses her own clothes and gets dressed when she wakes up out of choice. We brush her teeth anytime during the morning and sometimes in the afternoon when she feels able. We have very few demands.
 
That just sounds absolutely perfect for a child diagnosed with PDA, I really think Lola would benefit from much the same. She is so much more relaxed at the weekend when she wakes up.
So its Monday morning and hopefully the readers have grabbed a cuppa, or a coffee if that’s your thing, and are chilling out for a while, de-stressing, re-grouping and reading this wonderful interview about family life with Little Miss E and as shes one of our anonymous interviewees - Here is her mascot!




Little Miss E is clearly really benefiting from your awesome parenting techniques, tell us those bits about E that make your heart smile, or your stomach flip with joy? The things that on a “normal” level are overlooked into everyday life, but for families like yours and mine are amazing achievements?


I love seeing how much her self awareness grows each year.  

What do you find most Joyful about E?

  • Hearing her sing and seeing her dance makes me grin from ear to ear every time. 
  • She puts her arm around my shoulders and cuddles me.  
  • she chats away with such ease and confidence to people in shops and other venues.

What an amazing little family that you have, I feel so honored that you are sharing all of this with my readers and I.


Its really important for carers of autistic children to take some time to re charge batteries, and look after themselves, the reality of this makes it quite difficult though so can you share some tips of when and how you recuperate?

I'm a holistic practitioner so I use relaxation tools like EFT, Reiki, and meditation for myself everyday & I love a good soak in a bath with Epsom Salts!

I get so much from connecting with other parents walking a similar path through the amazing Facebook groups run with so much love out there. We feel so lucky to be raising our daughter at a time where there is so much information and support for parents on PDA and such an astounding PDA online community building all the time.


Similarly its important for the child to be able to take some time and reflect, process their day and relieve all of their pent up anxiety and sensory overloads, so does E have any successful techniques or aids that they use that you can share? Lola Loves to colour so when she is struggling we always offer her books and pens as a first distraction.

Because Miss E is at home she chooses what she wants to do when. She has a favourite sofa and a blanket she loves to get cosy in for a rest.
She loves using the iPad when she wants to just chill out. If we are out and about she will use ear defenders and her buggy to escape the sensory overwhelm.


I find that its so important to share these ideas with other parents because although most of us are aware of them, some of them can be forgotten, and just that little reminder can change a period of negativity to one of positive outcomes for both parent and child, so thanks so much for sharing you wealth of knowledge with us, I am sure that many parents are going to really benefit from it.


Finally we all want to know about the biggest milestone that you or E has accomplished in recent months.

We just love see her growing in self awareness all the time!


And on that note, I hope you have a Marvellous week and that this interview has helped benefit you and family, with techniques and ideas, or even just given your Monday morning a bit of a cheery start.


Thank you to Kate* for answering my questions and thank you to those of you who have taken the time to read and share this to help many families start that all important week off in high spirits.


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2 October 2017

Marvellous Monday - An Interview With Lynne


Welcome to my new series - Marvellous Monday's. I will be interviewing people who have a direct connection to someone who is autistic, or is autistic themselves. I am excited to showcase some positive experiences of carers and parents. There are many difficulties and challenges that we face when someone in the family is autistic, and those little achievements of success are often overlooked because of the extensive caring duties and severe anxiety that some families face. My aim is to  publish as many interviews as i can, each week on a Monday morning so that after the busy weekend of caring and the daunting week looming ahead has a positive beginning. Something for you to read, whilst you take you first breather and have your first hot cup of tea or coffer in days. I want to share the happiness and joyful moments of many families, children and adults  with the hope that it can help you as a family hold onto that thought that 'It can only get better'



Good Morning, thank you so much for taking the time to take part in my regular Monday Morning series. Hopefully we can help everyone start the week with some positivity and an uplift. We all know how awful and exhausting the mornings are especially if the children are suffering with back to school anxiety.

I for one, would like something joyful to read, as we struggle on a regular basis here. If you have followed our journey, you will know that Lola really doesn’t cope well in the mornings and Connie –Mai is finding it increasingly difficult to become accustomed to leaving me at the school gates.

What a great way to start the week, by sharing all those positives, some tips for the difficult times and telling us a bit about your family and those massive milestones you’ve reached that you didn’t think possible?


So can you tell me a little about yourself and you family and the connection that you have to Autism?

My husband and I have 4 children. Dylan (18), Sarah (6), Marcus (4) and Lawrence (2). Marcus was diagnosed with autism 3 days after his second birthday while I was pregnant with his younger brother. My husband and I recently did a role swap. I got a relatively stressless clerical job and he gave up his very stressful, management job in Telecommunications. Our teenager (who still lives at home) is a full time student.

Wow – It sounds like you have your hands full, I imagine it can be pretty difficult at times, Can you tell us a little more about how you manage things at home positively?

I suppose we do things to suit Marcus. We found ourselves saying “No, no, no” so we removed everything that was negative. For example, He is an exceptional climber. So we got rid of the dinner table and chairs. We put our sofa against the wall and placed a very strong side table at the side. This created a safe climbing area and we encouraged it. We made our living room a YES room. This made our day-to-day living more durable - Especially during the toddler stage.

We are definitely pro-active parents and are constantly thinking ahead. We are constantly risk assessing and tend to stick to places/times we know to make any venture out the house enjoyable for parent and child.

Sticking to our strict routine is key to a peaceful day. We have tweaked our routine to suit the whole family. Each change to routine now has a natural flow to it. They are subtle and don't have a huge impact now. Our son is non-verbal but he has signs, gestures and squeals that tip us off when he is starting to struggle.

We have found our own stresses come from fighting against him. Trying to get him to do something he clearly doesn’t want to do. It's good for his development to have his boundaries pushed a little in order for him to progress. This is only manageable if both parent and child are calm. We evaluate things afterwards to see what went wrong and discuss ways to push further if it went right. Every negative can be turned into a positive learning curve.

My husband and I both agree it's gutting when we can't all go to an event (family wedding, school function), but one of us has to wander around with Marcus or simply stay at home with him. But once you accept those limitations life gets easier.

It’s definitely exhausting having to remember all of these strategies and positive communication to keep anxiety and those shutdowns at bay. Your YES parenting seems simple yet so effective. Its great that you and the whole family are working on the same page that really helps.

What are your three top tips for someone struggling to deal with the morning routine and keeping everyone happy? – I for sure could do with some extra ‘Go to’s’ up my sleeve for the mornings.

Routine, routine, routine! Our lot can wake up any time between 5.30am and 6.30am
7am Coco pops for cereal. Only cbeebies on TV. (we arrange the routine in line with programs)
7.30am Kids get dressed at the same time every day. But no socks or shoes until it's time to leave. He will just take them off!
8.00am Toast (usually stolen from parents)
8.30am Coat, socks, shoes and restraint straps on.
We have a visual time table which helps too.

I also have a very strict routine, they fight against it continually but it definitely benefits them, as if they deviate from the routine it all ends up in chaos.  

Thank you so much for sharing. So its Monday morning and hopefully the readers have grabbed a cuppa, or a coffee if that’s your thing, and are chilling out for a while, de-stressing, re-grouping and reading this wonderful interview about family life with Lynne and her beautiful family. Isnt Marcus gorgeous. 



Marcus is clearly really benefitting from your awesome parenting techniques, tell us those bits about Marcus that make your heart smile, or your stomach flip with joy? The things that on a “normal” level are overlooked into everyday life, but for families like yours and mine are amazing achievements?

Marcus has recently starting ‘giving Five’! He never clapped his hands until last year so these are huge milestones for us.
The biggest achievement he has done is POTTY TRAINING! After going to the bathroom with dad for weeks and being fascinated by the ‘flowing water’ and then the excitement of the toilet flushing. He decided that that’s where it goes. The nappy was off! It was truly amazing at the age of 4. He will wait until a nappy is on to do a number 2 and wears a nappy in bed and on car journeys.


What do you find most Joyful about Marcus?

1 - Marcus notices tiny details; he can be stimming back and forth and all of a sudden STOP! Fixated on something. - A knot in the wood on the fence, a gap in the curtain, a cobweb on the ceiling. I find this fascinating.

2 – His additional needs support worker told me, that he is more intelligent than his peers in Nursery. He knew numbers 1-10 at age 2 and now at 4 he knows his alphabet backwards. He figured out the passcode on his tablet by himself.

3 - He loves our cat. The cat can be quite grumpy but with Marcus he remains so placid. Their relationship is lovely to see, both communicating without words. Marcus can get the cat to follow him like playing a game of chase. When Marcus is ill, he lies on the cat like a pillow using his soft fur for comfort (must be a sensory thing).

That’s amazing, animals have a true sense of loyalty to our little people. Our cat is the same apart from with my boy, absolutely idolises him.

Its really important for carers of autistic children to take some time to re charge batteries, and look after their self, the reality of this makes it quite difficult though so can you share some tips of when and how you recuperate?

Before I returned to work I would definitely find my self, sitting at the bottom of the stairs with a cuppa in one hand and a mobile device (facebook) in the other. This was my alone time. I could see the kids in the living room playing separated by the high stair gate. My cuppa was drunk while it was still hot, my phone was not swiped in order to watch trains on you tube. It’s Bliss!

Thank the stars for our wonderful teenager. He doesn’t mind sitting with his siblings or taking them out into the garden just so I can have a shower, wash the dishes or just have 5 minutes in silence. On an evening, once the little ones are tucked up, he babysits. My husband and I drive to the local McDonalds, get a drive-thru coffee and sit in an empty car park. We chat, laugh, cry and discuss the issues from the day. We are so lucky to have our teenager for this.

Similarly its important for the child to be able to take some time and reflect, process their day and relieve all of their pent up anxiety and sensory overloads, so does Marcus have any successful techniques or aids that he uses that you can share? Lola Loves to colour so when she is struggling we always offer her books and pens as a first distraction.

Food – as soon as he comes into the house after being out, Marcus heads straight for the biscuit tin. He uses his juice cup as a comfort too. He clamps the spout between his teeth and runs around with it – hands free.

When he is struggling he vocalises mmmmm sounds. Our speech therapist said as he is very movement orientated this movement of muscles helps him. And also Stimming, running back and forth, the more he moves the better he copes.
When we are out and about he does really well as long you keep walking, he can’t stand still or wait.

Finally we all want to know about the biggest milestone that you or Marcus has accomplished in recent months?

Honestly, his biggest milestone is settling into Nursery and passing his targets set in his Individual Learning Plan (IEP). This was our biggest fear as parents with an autistic child. His first year we argued his case with our Local Authority and was given his own Additional Needs Worker for 8 hours. So he only went to nursery for 8 hours each week. His IEPs track his progression and OMG what a hug impact those 8 hours have made, he had hit every target set for him.

This year we have just won a huge battle and not only for our son but 2 other special needs children that will benefit. Marcus was the only one of 4 children that got the right support last year. Now all of the special needs children will be in a secondary nursery room with a ratio of 4 adults to 20 children. With one adult being an Additional Needs Worker dedicated to the Special Needs children. This means that when therapists come in they will have an extra adult to help with hand over hand activities and help support their progression.

I cannot wait to see what achievements my darling little boy will make this academic year.

Wow what an amazing achievement you should be very proud of yourself indeed. And on that note, I hope you have a Marvellous week and that this interview has helped benefit you and family, with techniques and ideas, or even just given your Monday morning a bit of a cheery start.

Thank you to Lynne for answering my questions and thank you to those of you who have taken the time to read and share this to help many families start that all important week off in high spirits.

  
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