Tag Archives: advocate

Playing Bingo To Raise Money For The NAS

2 Oct

Playing bingo is not something I do often especially online. I used to go to our local bingo hall with my mum and as a result won some impressive amounts of money.

I was contacted by the guys at 888 Ladies (an online ladies only bingo site) They asked me if I wanted to play some bingo and win some money for my chosen charity.

How could I pass up the opportunity to raise some funds for the National Autistic Society (NAS). The guys at 888 Ladies loaded my account with £50 funds, (the account was easily set up and this didn’t take long at all). Then I had a month to win my charity some cash.

How it would work: I could play with the £50 funds and had the period of a month to do so. Anything I won could be reused to play more bingo. However every time I won the amount was logged and when the month was over all my prizes would be adding up and the full amount donated to the NAS.

Given I’m not really able to play during the day when I’m guessing its much busier I had no choice but to play quite late at night. I was either able to play the party bingo or the more traditional form of bingo.

I tried both forms of play but defiantly enjoyed the party bingo more. You can purchase anything from 1-90 cards and with each game you had to make a certain pattern to win. Obviously the more players the greater the prize. This also goes for the cost of each card.The greater the cost the greater the prize (dependent on the number of cards in play of course). I played everything from 5p to £1 per game play.

You may wonder how a person can possibly keep up when purchasing more than one card (90 especially). This is because the game is automatic so once you have purchased your cards the system knows when you are left with one number and if its called the game stops and your declared the game winner. The prize money is then automatically added to your account.

Of course there is the chance more than one person needs the same number and therefore you have a case of more than one winner. In such cases prize money is equally spilt between all winners.

For me online bingo isn’t really the same as the real life game. The excitement of it all is somewhat different. I love marking of my numbers with a dabber and even the danger of possibly missing your prize adds to the overall excitement. I quite missed this element of the game but still had fun all the same.

As I could only play at night I found there to be much less activity so I was therefore playing for smaller sums of money. However I did have quite a few wins and just knowing that each one was adding to my overall total for the NAS was really exciting.

The total I won was around £54 in total plus the initial £50 is donated so that’s £104. Yay… I’m glad the NAS will be able to make use of my donation.

Why I chose the NAS: A charity very close to my heart. My son has Aspergers and through some of our hardest battles from diagnosis to education they have been supportive. I’ve also volunteered for their TSS (tribunal support service) to help other parents get their children the special education they deserve. When it comes to advocating and advice the NAS do it best. They also run special schools and other services. Click here to visit their informative website

The day my boy got his smile back.

12 Oct

I sat in the school hall watching the school nativity all the children in each year combine to create one marvellous Christmas spectacle! So, why was I sat with a tear in my eye? My daughter looked so beautiful up there, and god I was proud, off course I was! Though this wasn’t a tear of joy, something was still missing and that something was my son! As I watched his sister and the rest of the schools over excited children take part in a glowing performance,my eldest child, ‘Little man’ was sat at home, restricted from all participation! Why? Well, he hadn’t injured himself, he wasn’t hit by a sudden dose of stage fright, he was told No! Why? Because his school thought of him as a liability not a child, not a child with feelings, not a child at all!

There were lots of why’s! Some coming from myself directed at a head teacher and a SENCO who quite honestly didn’t give a shit! The why’s from Little man directed at myself, a mother without the heart to be truthful! Yet deep down he knew, I know he did!

You may have the word why running through your mind right now as you read this! You maybe asking, “Why I’m even writing this?”

Yes, the above situation wasn’t yesterday, it was just one of many crawl blows thrown at my child at the end of last year. The example above took place in December 2010.

Now, I know I shouldn’t dwell on the past, and I’m not (well, not really). It’s hard to forget and I doubt we ever will, though the reason it was actually brought to the front of my mind was for reasons of happiness and excitement, not sadness.

Yes, now in 2011 and finally in a school that understands him, I finally got to see my little man take part in a whole school activity.

This time as I entered my son’s school there was no stares or whispers. I spoke with fellow parents unworried about their response when they would discover who my child was. This is a feeling I’ve waited and waited for, now I finally have it!

It was the celebration of the harvest festival and parents were invited into school for a special assembly. Gosh I was excited, despite the fact I had literally had not a wink of sleep. With this in mind I headed off upstairs to chill for a bit. Little H was with his father so that left me a bit of mummy time. Running the hot water into the bath tube the air was filled with the scent of Radox relaxing bath salts, “This is the life” I thought as I slowly lowered a leg in the tub!

Ring… ring… ring… “Bloody typical” I shouted to myself aloud as I almost slipped and broke my neck as I frantically dashed for my mobile located on my bedside table.

“Hello” I spouted in a somewhat breathless tone (which couldn’t of sounded great) especially on discovering it was in-fact Little mans school who thankfully put me at ease instantly by stated “Don’t worry, there is nothing to worry about” Turns out the Little man has actually left his lunch at home, well, that or in his transport (the taxi he takes to school of a morning) His school don’t currently serve school dinners. This is mainly due to how new the school is and the fact there really is little point employing staff and serving food for under 20 kids (not like the little man will agree to eat it any how).

This only meant one thing! Mum would have to deliver that lunch asap! First I had to unearth it, I couldn’t actually recall seeing it since he left at 8.30 am that morning. I searched the house like a mad woman and at 11.50 and the school being some distance away (one train and a bus kind of distance) I began to worry when I still couldn’t find it! It wasn’t a case of just throw together another one, believe it or not I buy the stuff fresh each morning in some kind of hope he will eat it, so in-order to do so I’d need a shop!

As I darted out the door, on the mission for lunch something caught my eye! Surely not? Hang on…. No,… It only bloody is! There sat his Chelsea FC lunch box on top of the wheely bin. Well, I agree it’s not the most pleasant place to keep your lunch but with the clock ticking, I came to the conclusion, “It wasn’t actually in the bin! Would he actually need to know?” I guess not!

I finally made it to the school, red-faced and paranoid that I didn’t smell like the aroma of Radox bath salts, and more like a sweating scum-bag but given the fact no one smiled and moved away, I came to the conclusion it was my lack of sleep making me think this way (after all, it’s not like I hadn’t washed or something)!

The assembly wouldn’t start till 1.30 and it was half past midday and without a car and feeling like I was in the middle off nowhere I went outside sat on what was quite a pleasant little bench, indulged in my nasty but pleasurable habit of puffing a cigarette while scrolling trough my twitter timeline, engaging in far to many conversations to remain sane before going back inside to find my little man waiting for me in the reception-area.

“Mum, I’m not having a great day” he told me! Apparently no one was! The teacher described it as one of those days where the children all seem to be experiencing some kind of upset. Let’s not forget these children all have an autism spectrum condition, all face a range of difficulties and the smallest things can cause problems. Chatting with my little man it would seem he was excited yet a little nervous about his piece that he had offered to read in the assembly. My little man wanted to do the reading and was adamant. We read it together and he read it perfect! Confidence was the issue here something that had become smashed over the years.

As Little man went off to get ready I got to say hello to the very lovely Anna Kennedy. For those of you who don’t know who Ann is, I’ll enlighten you!

Anna isn’t only the founder of little mans independent special school for children with autism and aspergers, she’s also a parent of two children on the spectrum who felt her only option left to get her boys into a school was to open one herself. This wasn’t little man’s current school but another called ‘Hillingdon Manor’ in Middlesex and this all happened back in the nineties. Baston house (Little man’s school) is a school that Anna has open more recently. Anna has since established a bit of a name for herself as an inspirational advocate for autism and is also now a very successful business woman. I for one agree that Anna is inspirational, actually she’s a breath of fresh air to the autism community and I couldn’t be happier to have my child in a school that has been made possible by this very woman. My guess is many parents feel this gratefulness that I am currently feeling as I write this down.

Having spoken to Anna for some time (way before little man started school) on networks such as twitter and facebook (Little man also appeared on a news report on bullying that Anna organised) it was lovely to finally meet her in person.

As I sat In the hall waiting for the children’s performance I felt proud that my son was a part of it all. He ran around and his anxiety was a tad increased, plus the fact I was there meant he become a little bit of a terror, but so did a few of the children. What was magical was the fact no one made an issue about it, if the children ran from their chairs or dashed off behind the stage curtains they were encouraged to come back to their seats in a clam and unthreatening manner. Not one teacher raised their voice, not one!

The vicar from the local church came to speak about the occassion in which the children were celebrating. The table was covered in food that the children had donated. I had to laugh when the vicar stated, “Look at all this lovely food you all brought” only for one young man to shout out, “Actually, I brought in most of it” What a classic!

The vicar told a story to symbolise what the true meaning was of the Harvest festival and the children did shout out some pretty random things (little man more than anyone else, I think) Any other school he would have been reprimanded for such behaviour! They all put up their hands but just could not retain the urge to state what it was they wanted to say, this however was fine!

When it came to the reading Little man and a few others gathered at the stage. All giggled and in turn each took the microphone and read aloud (beautifully I must add)! Little man was last and as he took the mic he said one word and then froze. He turned to his TA and stated “I can’t do it, please do it” I knew he could read it, after all I heard him not half an hour before when we practised. My son hadn’t ever been given such a chance till now and his confidence just wasn’t there! Then something beautiful happened! Two of the staff, including his teaching assistant (who he is most keen on) and the other boys who had previously read came together with little man and read the poem with him. There was no laughing at him, no nasty remarks and no huff from the teacher, just pure encouragement!

I didn’t only write this post to express my delight at the situation we are now in, and although I wanted to share such delight with you all, I have another more important reason!

“When life seems like it cannot get much worse and you’re in the height of your long fought out battle to get your child what they did! When you think there really is no light at the end of that very long tunnel, please don’t give up, just remember this post!”

Those of you that take your child to school everyday and collect them without a hiccup, you should never take such straightforwardness for granted… You really don’t know how lucky you are!

Thank you to everyone at Baston house for giving me hope and giving my child back his smile, the greatest gift of all.

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Are you really brave enough to put the word Aspergers down on your job application?

9 Jul

The power of the internet is truly amazing, for me it’s brought information, peace, opportunities, comfort, experiences, support, education, understanding and friends. (Those and so many more!) 

 Yesterday, I got to meet one those friends in the flesh, over a fabulously delicious skinny latte, with lashings of cinnamon generously sprinkled over a layer of froth. (No, that wasn’t a snip-it from the Marks & Sparks commercial, but me really appreciating a good mug of coffee!) Thanks Neil 🙂

 Star bucks was the ideal setting to chat to a new friend, one I had been wanting to meet for sometime but life being life just made it an impossible task… Well till now! 

 I suppose to classify Neil as a “New friend” isn’t quite right! You see, I’ve known Neil for sometime now, though conversations are only ever exchanged in the land of cyber-space. Neil, an adult on the autism spectrum who was given a late diagnosis of Aspergers syndrome, is a regular contributor in discussions and a massive supporter of the support page, ‘A boy with Asperger’s’ the Facebook page in which I created some few years back as an added addition to this very blog (hence the name of course). His opinions are always given in a frank and honest manner, his certainly given some great advice to many of our members, including that of myself. To be honest Neil has provided me with a sort of insight, highlighting how things could possibly be for my own child in adult life (an important issue to which I will elaborate on soon enough)! 

 Here I was, finally about to meet Neil who yes as mentioned has Aspergers. Just, after 1.30 lunch time I arrived to found Neil awaiting my arrival at the entrance. I knew it was Neil and his profile pic on Facebook had sod all to do with it! So… What gave him away? Only the fact he checked out my footwear as I entered through the door ensuring I had no sandals upon my feet (Yes, Neil hates sandals) There was no awkwardness having only previously met in cyberspace, well… this was the case for me and Neil seemed just fine too! Having got passed the shock that was caused by the similarities of my common London girl accent to that of someone you would likely find staring in the soap ‘Eastenders’ We chatted about life in general. Honestly, Neil is a genuine guy who is extremely interesting and speaks from his heart. He says exactly how it is (Which is an aspie trait you cannot fail to appreciate). 

 Everything Neil said was of interest, I found it a privilege to have him tell me about his life on the spectrum. He put the myths to bed and although I myself  always knew it possible, it was just so good to hear that the best part of his life has been a great success! How else can you describe a good education, (through it wasn’t always easy) a happy marriage and a beautiful son. However, there was something that had never been quite right! At no fault of his own Neil has never been able to hold down a job! Why because society wont allow him that right, the basic human right to make an honest living, to be the loving husband and father who provides and I should add ‘Wants’ to provide for his family… WHY? Its simple! Neil is not seen as a) a “Team-Player, b)  a big communicator  and c) one of them (you know part of the click) Yes, that’s right, those that will a least give him a chance assume his some kind of character from the film ‘Rain man’ sitting him in the corner alone, far away from his colleagues, drawing the conclusion that it’s for the best as this is what those with aspergers want and need to be social isolated from the ‘world… Well, isn’t It! 

This alone screams out loud how little those in the work place, especially that of senior staff really know about AS!

 Neil isn’t under-qualified in-fact he proves that yes, people with AS have great minds and given they put everything into it just as one would who isn’t on the spectrum, they can go on to obtain good qualifications, even having excelled in many areas of  their learning. Is it right that many people on the autism specturm or those with learning disabilities, mental health problems, especially those who’s condition is characterised but that of a difficulty with social communication, are taught by society at large that it is at there utter best interest to go to collage and then university, for god knows how many years, to obtain a degree only to face to total disappointment on the discovery that they are completely unemployable? Even when they do get their foot in the door ready for the challenge of the world of work, a large number of employees with a disability are treated just like my friend Neil (Though you haven’t yet heard the half of it)! Note: I’m not stating those with autism or any other form of disability shouldn’t go to university, obtain a degree! Maybe one day that of my own son will, through that’s his choice and his alone! Nor am I stating that all employers treat employees who have autism/aspergers or other, in this same manner… That would mean I was writing this in a discriminating way! I acknowledge that there are many that do not discriminate and actually do take the time to get autism aware and inflict that awareness on all of its employers! But sadly the number that do not are still far to high, just ask Neil or better still,  just go back a few months when MP Philip Davis outrageously called for all disabled to work for less then the minimum wage… Something he must have unquestionably considered fair in his discriminating little brain! 

 Neil’s last job ( in IT) saw him and around approximately fifteen other employees, employed on a fixed term contract! Neil once again was sat in a corner, left to his own devices. Where was the structure? Of course there wasn’t any. As a woman who isn’t on the spectrum, though I often like to be left to my own devices, I like to know exactly what it is I’m supposed to be doing, how, when and how long for in order for me to do it and do it well, who don’t? For someone like Neil this is imperative! This didn’t happen, like many people with a social communication difficulty he didn’t feel to ask, he didn’t want to, this wasn’t the comfortable thing to do. Failing to see that In-fact Neil was human and would kind of appreciate come social interaction… No one took notice! The results… Neil’s work wasn’t at its finest (but still good I must add). 

 The very end result…

You guessed it, (If, u didn’t after such a long rant then you’re clearly not following.)  Neil’s contract came to an end as planned and just as it did for those fifteen others! Well, fair game then, a contract ending is just that, a contract ending! Where is the problem? Here’s the problem… The other fifteen, all except Neil that is, found themselves happily celebrating the fact they immediately had their contracts renewed for a much longer period of time by their once more praising boss. What a sack of crap!!! Seriously can you imagine how that must have felt? Maybe It felt something like how my own son felt when he was taught in isolation, away from others, left to his own devices, maybe it kinda resembled that same feeling like when my son was told he wouldn’t be allowed to attend educational trips or participate in activities alongside that of his peers! My point… From class room, to office, child to adult discrimination due to others inability to except the person you are, that of disability discriminate still delivers that same devastating blow! Was it Ok, after all the contract had come to a timely end? Crap! This was wrong and Neil for one knows it. Lets not forget its not his first job and likely wont be that of his last! He was told, Sorry you are not much of a team player and yes your work wasn’t always up to scratch. The fact is, having they had made the work place that bit more accessible, made adaptions allowing for his Aspergers from the word go, with the added courtesy of  some instructions, which would have been much appreciated, Neil would have produced the work expected and would likely have been a great deal happier in his working environment!

 My very last point… Promise!

 Not only did I learn from Neil that my son could possible get married, have children, ride a motorbike and hate sandals as much as him! I also learnt he could possible found himself unemployable and yet again the target of discrimination. Yes, my child may have got in to our desired school but like Neil showed me… To get into his desired job is something his yet to face! 

 Neil is looking to make a stand! His words to me, “I want to change things so children like your son don’t have to grow up and be treated in the same way!” My opinion… That was spoken with passion! Please help. I don’t often plea for your help (Ok, Ok excluding that of the Mad blog awards) but this is so very important and its life changing for him and so many others. Neil is searching for other adults both young and old who have autism or other related conditions to get in touch. He wants to collect your stories and get them heard… I guarantee that this will be a campaign he will fight to the bitter end but to do it alone just makes it harder! Neil is looking for people who feel they were discriminated against at work due to their disability, who wants change and wants it with a passion. 

Contact me here by leaving a comment here on the blog

To visit Neil’s Blog: Click HERE

Contact me on twitter: @Clairelouise82

 

How could they be so heartless?

25 Sep

Hello all..

As most will already know (Some more than others!) This week hasn’t been a good one. Yes,It’s been a complete nightmare in fact.

It seems like it’s been a long time since I’ve posted anything positive. What can I say? Life isn’t always kind (More so the people in it!) I feel I’ve been pretty decent when choosing what to and what not to write in a post. There is a great deal of stuff I hold back, for a number of reasons. Yet those who read the blog often comment to express their outrage in the treatment little man has faced, and the hurdles we as a family have had to climb.

Yes, we have faced some trying times (More this year, then ever) but… this week just took the biscuit.

I’ve stated more than once my upset towards my sons exclusions. No mother wants this for their child! I touched upon my child’s battle to attend educational trips and activities, how his self-esteem is becoming crushed every time his considered to be a “liability” by those that don’t truly understand (Or chose not to.) As stated above! I’ve held back on the finer details on all these issues. I’ve done this for many reasons, one being the reaction and treatment I received from my child’s school in relation to past post. Now I’m pretty feed up with people making me feel crap for expressing myself, after all isn’t it my human right to speak? This blog is my place to let some tension out. I wont be made to feel wrong for doing so..

I love my son! He, like his brother and sister are my world. Their isn’t a thing in the world I wouldn’t do for them.. not one! Little man didn’t ask to be born with AS. He didn’t wake up one morning thinking, “I’m gonna act like a complete brat today” Yes he can be naughty, he is a nine-year old boy. But.. there are times that behaviour are results of his AS, you just need to know when! Little bad wasn’t always “challenging” at school, far from it in fact! Little man was more quite, and when he was there (Sometimes he would just refuse to go, no matter what I tried) he would often cope, letting it all out once home. This seems to be a common problem for many parents of children on the spectrum! Their child displays “odd” or “challenging” behaviour in one setting, but not the other. Sometimes I wished that was still the case. This proves that once little man had a good routine in terms of attending school, he became more challenging in the educational setting due to an array of things. Sensory, environmental, anxiety e.g. These are a few challenges little man and other children on the spectrum encounter daily. Little man has trouble dealing with these pressures. Little things become massive, voice tones become confusing and somewhat sarcastic or aggressive. There are triggers EVERYWHERE!

Little man was given Six fixed period exclusions from March to July last (school) year. This school year he has already bagged himself another two. Shocking seeming we are only just in September, the very first month of the current school year. I mentioned before that I consider some of his exclusions to be unjustified. The trips well yes, I feel he has been excluded from these in a way that can only be described as discriminating. No more is my child told he cannot take part in educational trips and activities, he is now just excluded on the days they take place! I feel totally powerless watching my son be rejected from one trip to another. I am outraged at the way the school have dealt with exclusion and how they have no regard for our privacy. The current situation is a total mess! I am appalled at a number of their recent actions. These actions are completely unacceptable! They highlight a great lack of respect for me, Little man and the family. I feel we are disliked! My child for the way he is and me for the way I advocate for him. I feel we are treated this way from those I should trust. There is no longer a part of me that trust them. This totally saddens me. I’ve tried working with everyone. It goes no where. It’s one big disappointment in every way.

Last week Little man was given a fixed period exclusion. He missed swimming due to this exclusion. He had been having a terrible week, to the point I had to keep him home one afternoon, and contact the education welfare officer. This was so I could express my concerns over a current problem he was having involving his sensory processing, and how others were not able to understand his genuine upset. I was advised to return him, but expressed my fear that in doing so may result in him getting into trouble due to his anxiety. I would rather he stayed home through a decision made by me then have yet another exclusion on our hands (One brought on my anxiety and frustration.) The next day Little man returned! Did I have a sick sense? Maybe! Yes, little man was excluded by the head teacher at 6pm via the telephone.

I hate that we are never notified of exclusions earlier, or better still on collection from school. Getting Little man into an evening/night time routine has been difficult and having them excluded him at these unreasonable hours is just not on. I feel that having to always inform him of his exclusion is unfair. It’s not great being the one to inform your child that they have been excluded, will not attend a trip or another educational activity. It’s never been an easy task, but never as hard as his current exclusion, the one he is currently serving.

I’m not referring to the above exclusion but the exclusion we were given on Wednesday evening at 6.20 pm. This was not a simple exclusion but an extremely hurtful one for little man. I knew it was coming due to something little man was told not five minutes before the call. (This is a whole other shocking incident, that I will not yet comment on) Shock and disbelieve hit me when I was told he would face yet another two-day exclusion. He had been back two full bloody days! Teachers training day was this Friday meaning day two of the exclusion would be Monday. This was the day Little man was to attend his trip (The big trip) the trip he had looked forward to. Why? Because he would be going on a coach! A few weeks back Little man had a massive meltdown in the supermarket. He didn’t sleep and was displaying challenging behaviour the entire night. There was no possible way both the children could attend school that next day. However I went to speak to Little mans class teacher. It was discovered that the teacher had left the class that afternoon telling the children to display good behaviour while he was away, or No Trip! They had no idea where they were going as of that time, yet little man was incredible excited. I was told by another Teacher (TA) that little man was becoming very upset as a peer was not doing the right thing! Little man thought this meant the whole class would miss the trip! I spoke to little man that evening and he explained that his class peer was not being very good and the whole class would miss the trip. I had to explain this wasn’t the case. Little man was pleased saying.. “No one will ruin this trip for me” He was double as excited on discovering the type of transport we would take (Yes I did say WE, and we means Mum! I would be their to.) He repetitively  asked each day how many more days were left to go. Now this has happened! I was expected to tell him. I was the one who had to hurt him. Maybe he knew deep down this would happen, maybe this is the reason he acted the way he did when his friend misbehaved.

Angry I was fuming..  1) This was even happening. 2) The way the exclusion was decided and when. 3) The fact I had to tell him. 4) Yet another trip missed. 5) This is a double punishment!

Little man cried till his eyes were sore. He spoke between catching his breath. He was broken. There was nothing I could say nor do to make it better! The whys kept coming, followed by “Please mum go and speak to them and ask them, Please) Its Saturday early morning and I am being completely honest when I say his still hurting.

How can they be so mean! I do not agree with this exclusion, it was done for reasons I don’t need to spell out. It was another knock to his self-esteem. This treatment is nothing other than horrid. Exclusions on trip days are a double blow. Not only will he feel he doesn’t fit in he feels he wasn’t wanted on the trip. Can you blame him? It’s not just the out of school activity he missed Thursday, Mondays trip, or last Fridays swimming! It’s all the other activities his been excluded from last year. It’s far to many. Please correct me but exclusion isn’t working so why use it? I wouldn’t mind but some weeks I find out his done something that to me is considered more serious. Then there are times like these! He is excluded for something far less serious resulting in him missing out on trips and activities. How does this system work? Forgive me I’m lost.

Lastly I want to say that yesterday my blog was given a good going over! Sadly for the wrong reasons. Maybe an update on exclusion number eight was sought after, or print outs were needed, who knows. I want to say that this blog is not written about anything other than my life with a boy with Aspergers. Sadly this is our life right now. This blog is aimed at others like me (Parents, carers or families parenting an AS child) It’s also their for those on the spectrum and anyone else wanting to learn more about how life can be with a child with AS. Some days are good and others not so great! But this is it.. Right now our life is a battle. I can’t stop it, no matter how hard  I’ve tried! Therefore whoever wishes to read this blog, then do so for what ever reasons. But those who do should understand that this is what is happening right now in our life. My son is already low in confidence and the above is not helping fix this. No aggressiveness or treats will be expressed within in this post, just pure tiredness and great upset at this horrible mess. The fact Little man now awaits an appointment with a specialist because he makes himself say sorry to god repetitively in his head or aloud, every time he acts a certain way, to avoid bad things happening is a worry and only highlights how bad things are becoming.

I hope the school have a fantastic trip without the disruptive little aspie, known as my son.  It wasn’t just a “Trip” for little man it was his chance for him to feel valued and build his self-esteem!

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