Happy Birthday WiiBoy....10 years old today!!



Ten years ago today on the 22nd December 2009, after an interminable 9 months and a very long labour, my baby was born. He was ten days overdue and as he had no intention of ever showing himself to this world he had to be "encouraged" to make his appearance! In fact, I reckon he was holding on to be the first "aluminium" baby as the millenium was only 8 days away!!



I had spent the previous few months simply wondering what he/she would look like. I was fascinated by this so I couldn't wait to see him when he was born. I remember his little face as he was handed to me that very first time.....mouth in the shape of an "o"  as he wondrously took in his new surroundings. He was gorgeous and initially I thought he looked like my dad.

Myself and baby Snuggles/WiiBoy came home from hospital on Christmas morning. It snowed a little that morning I remember . I also remember that we new mothers got a lovely special Christmas morning fry-up in Holles Street Hospital. After 9 months of being so ill that I couldn't eat you can just imagine how good it tasted!

We came home to our own house that day, just the three of us and my wonderful Mother-in-law had  sent up our Christmas dinner the previous day. There was, turkey, ham, homemade croquette and roast potatoes. There was even a starter of melon balls....all laid out in 2 glasses with sugar on the rim....and homemade Christmas Pudding for desert. With cream of course! All we had to do was plate and reheat. I can honestly say, hand on heart  that that was the nicest Christmas dinner that I have ever had in my entire life! I will always be grateful to, and remember my wonderful mother-in-law for that very kind act. Thank you Nancy...... you were an absolute lady, a wonderful person and I hope that you are now resting in the peace that you deserve.

Mr Jazzy and I were the doting parents struggling to get a handle on this very active bundle of joy that was our WiiBoy!! Well, we were in our late 30's and this was truly a life-changing experience for us! He was great though and we were mad about him. It was difficult. Wiiboy cried a lot, like most babies and didn't sleep through the night until he was 4 and a half! Of course the "crying-a-lot" turned into tantrums, which got worse over the years.

While he said "mama", "dada" and "baba" at the expected time we noticed that he spoke his first real words at about 13 months when he said "there they are", as we played the "where are your socks" game we usually played getting dressed in the morning. He was to never repeat those words again, or to try to repeat anything else we said for a very long time.

Over time of course we began to realize that we had a problem Other family members didn't agree....you know the score. As we had no other children to compare with, I think we did lose some valuable time but eventually on 17th December 2003 (another December date indelibly stamped on my brain!) we were given a name to our "problem". Autistic Spectrum Disorder. Oh, how we struggled with that. And in telling others. It took us quite a while to share that info. We had to get used to it ourselves first, you see. It didn't help when having found the courage to share this diagnosis, that others didn't agree with it.

However, we battled on and then struggled to find the right placement(s) for our child whilst dealing with others balking at the thoughts of an Autism specific school. I honestly did not know what to do for the best. We were in turmoil. The decision was made for me one night though. Well, 4 o'clock in the morning to be precise. My turning point.

I remember being downstairs with a very distressed Wiiboy, you know I cannot to this day, accept that it is normal for a child to regularly wake up in full tantrum mode?? I was in the door-well of the dining room/kitchen, curled in a ball with WiiBoy beating me up with his fists .... at the tender age of 4. I was totally drained at this stage and at absolute breaking point. I started to sob silently to myself, as I didn't want to upset him. Just as I was about to completely break down, something wonderful happened. When WiiBoy wasn't getting whatever it was he needed from me, he turned his intense anger and frustration in on himself. He started to bite his arms. He had never self-harmed before. This was serious (I had just 2 days earlier seen a Prime Time programme on TV  with a teenage Autistic boy banging his head off the wall) Well....you have never seen a woman on the edge crawl back from that edge with such clarity! Tears were banished as if someone had flicked a light switch. I took WiiBoy in my arms as I quietly, calmly and tearlessly held him and said "mammy fix ..... mammy make better".

Now, I had no idea how on earth "mammy" was gonna "fix", but I made a promise to WiiBoy, there in my door-well at 4 am that morning. He would not, EVER become that head banging teenager AND he WAS most definitely going to the Autism specific school. "Mammy" was sure as hell going to do her damnedest to "fix"....and to hell with the nay-sayers!!

That has turned out to be the single most important moment and decision made in the past 10 years. We began the second stage of our incredible journey that night. Although, soon after starting the said Autism specific school we were dealt another blow. Poor WiiBoy got another Kidney infection and was sent for a routine scan. This scan revealed that he had severe scarring on his left kidney, had hi-grade (Grade 4) reflux and kidney was only functioning at 18% capacity. This was despite having been sent for a similar scan at approx 2 years old and being told that everything was fine.We were now told that the condition was present from birth. His condition was monitored for 4 years and he now only has 15% function in that kidney. However last year, having changed consultants to the fabulous Professor Puri, WiiBoy finally had the hugely successful Sting procedure done last year .... he was my brave little soldier!. His right kidney is working fine....thank God!

Apart from all the above, it is important to note that WiiBoy has lots of other attributes....despite tantrumming etc! He is a very funny child. He says and does the funniest things, he likes to make people laugh you see! He tends to do a lot of laughing so along the way we've had some giggles and funny moments......


                                                 He still loves his cuddly toys!!


                              Loved playing with Scamp and still misses him :((


                                                     He LOVES to laugh!!

So, fast forward to 6 years later (not, of course forgetting our long meandering tour through Mainstream Integration!) and we find ourselves celebrating his 10th Birthday today, in wonderful style!

Oh my, it is with great pleasure that I share my observations on today's Bowling and Q-Zar Birthday. Yup...... you heard me right.....BOWLING AND Q-ZAR! I have previously mentioned our issues with Bowling (and ANY game with rules, turn-taking and winners/losers) so suffice it to say it's taken a long time to get here!

The party was a HUGE success. He has such fantastic classmates.


It was wonderful to see him pick his team for Q-Zar.


To see him playing great bowling and getting a strike!



To see his friends cheer him on.



To see him struggling with not getting the score he wanted and practise his self-regulation skills by removing himself slightly from the gang. (see....4 years of constantly repeating his mantra to help him cope.... "walk away" or "tell an adult" when it's hard, really does work!!).

Then to see his best friend, or one of the others follow him (after every turn) to see if he was ok. was just amazing.


                                     Of course, a cuddle from dad at the end helps too!



What truly made my day though, was seeing him sitting at his birthday meal, holding court and chatting with his friends. That was truly amazing.

I couldn't help but think that he just fitted in. There are a number of kids in his peer group with undiagnosed issues and WiiBoy now just looks like one of the gang.

I'm inclined to agree with his annual IEP held this morning...WiiBoy is a success story..... a success story that the Principal quotes every chance he gets!! With my permission of course. We are, it must be said, mindful to not become victims of that success so our battle for services does continue!




   So, WiiBoy.... a very, very happy 10th Birthday Sweetheart,  from your very proud parents!


Let me remind you now what I say to you every day............


We are the luckiest mum and dad in the whole world to have a little boy, just like you.

xx Jazzy-mum!


PS. Apologies for long post....I had no idea I was going to write so much....once I started I simply could not stop.



23 comments:

  1. Happy, happy birthday, Wiiboy! Jazzygal, you have me weeping happy tears. Biggest of hugs to you all.

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  2. Happy Birthday WiiBoy and what a wonderful story, with lots of great advice and a happy ending. Gives lot of hope to those of us just starting on this journey. Thanks so much for sharing it

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  3. Ah Jazzy, such a lovely day and great to see the social side in action. The decisions are hard (I guess, not had to make any yet) but the right ones pay off, that much I can see. Well done to both of you and Wiiboy. Happy Birthday:) Jen

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  4. Happy Birthday WiiBoy, Great post Jazzygal, gives me hope as my little boy was 5 on Sunday.

    I hope ye have a lovely Christmas.

    Mossy Mu

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  5. wow jazzy, such an insperational blog.... i loved reading it and know through your eyes that anything is possible..and pics tell more than words...

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  6. Only seeing this now, I too have happy tears, this has given me hope for the future for my children, I love your blog and I am so delighted he had such a great time at his birthday. He is blessed to have you both as his parents, what a fantastic job you have done so far, you should be very proud of yourself and Wii boy in how far you both have come. xxx

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  7. Looks like you all had a ball. It's great to hear about the successes! Thanks for putting a big smile on my face xxx

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  8. wow had to wipe away tears with this one hun

    amazing, your boy is the most happy wonderful child in that room

    loved it jazzy, and it brought a bit of hope my way

    xxxxxxxx

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  9. Happy birthday Wiiboy!! Loved all the pictures - great to see him enjoying himself and having such a wonderful time!

    He is very lucky to have you both as his parents - be very proud of yourselves and for him, he has come such a long way. xxx 3laine

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  10. Thank you all so much for your lovely comments and birthday wishes for Wiiboy.

    Thank you KWOMBLES....As you know, I loved your post to your 20yr old last week!

    Thanks also BLUE SKY....when I write these posts I really do hope that they give some hope.

    Thanks JEN. We can only hope that we choose the right path when the time comes to make choices. it's hard though and we might just take a wrong turn here or there...but we cannot beat ourselves up about it. Some of these choices are limited due to HSE and DOES short-sightedness and their limitations. we can only do our best.

    Thanks Mossy Mu....and birthday wishes to your little boy too!

    Thank you also AUTIMOM....I chose the happiest photos I could find;))


    Thanks ANDRA & COOLKID...... I had you both in mind as I wrote this;)) And I shed a little tear also! It was a very emotional and cathartic post for me.

    Thanks JEAN....I hope that smile takes up permanent residence very soon;))

    Thanks also 3LAINE...I really appreciate that.

    xx Jazzy

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  11. Happy (belated) birthday Wiiboy.

    And Happy (belated) Birth Day to you Jazzygal.

    Nice post,lovely insight into your world.

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  12. not gonna leave a long comment cause i have tears in my eyes reading this. but i just wanna say great blog firstly and a huge thank you cause you just gave me huge hope for AJs future
    xxxxx

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  13. Thank you NANP and CLAIREH.

    Claireh.... I hope too that you see huge progression with your AJ.

    I wish the same for ALL of you reading my blog, who are working constantly and tirelessly 24/7 to this end. It takes a very long time but if the interventions in place for your child are the right ones then hopefully, in time you will see huge improvements.

    As every child on the Spectrum is different, may I express my hope and wish that each and every one of your children will reach their full potential (indidvidual to each of them!)in time.

    You are all such fantastic parents and you do your children proud. xx Jazzy

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  14. Wishing Wiiboy a very happy birthday!

    That was a great post! Wonderful to see what progress he was made - congrats to you all.

    With best wishes for Christmas,
    Fiona and all the gang

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  15. What a fab post, it was lovely to learn a little bit about your journey. Mich x

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  16. I never saw this the first time round! Loving this idea of Jen's and really enjoyed reading this xx

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  17. Hehe! Looking for Blue Sky - you have a comment above!

    Thanks for sharing this again via Jen's gems page, Jazzy Girl. You have obviously made many good decisions for WiiBoy. Barbara

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  18. Oh Jazzy-how beautiful and wonderful and all kinds of great things..I've never seen this post..what a treat for me. :) Wiiboy is fabulous and amazing..as are his parents..xx

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  19. It warmed my heart to see his journey and how far he's come.

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  20. Okay so I'm commenting on this for a third time (@Barbara, yes middle aged lady problems last time) this is becoming a habit...but every time I get something new from it xx

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  21. Thanks for your comments! I know I've shared this a couple of times now but it does show haow far we've come. So glad you aren't totally bored with it Blue Sky.... I won't share for another while!

    xx jazzy

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  22. Beautiful blog entry, a joy to read!

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  23. @Emma L: thank you so much, so glad that you enjoyed :-)

    xx Jazzy

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