Thursday, December 31, 2009
As we prepare to shut the door on 2009 and cautiously, hopefully open the new door to 2010, I am in the fortunate position to look back favourably on this past year.
The Jazzys have had a good year.
We started off the year with a successful Panto run..... "Sinbad" and we were very proud of WiiBoy's performance!
We had lots of trips in 2009!
We started off with a trip to Legoland (thanks Mam for treating us!) in May and we had a fantastic time.
We then had our cheapo family holiday in Spain a few weeks later....which also went very well. Apart from a tantrum or two!
And WiiBoy made this fab video on hols !!
Unfortunately the school holidays got off to a bad start when we lost our dog Scamp. There's been no sign of him for months now so I can only hope that a nice family have him now. Be happy Scampy!!
We enjoyed the Summer holidays with regular trips to our local beach ...... in between the regular, rather substantial rain showers that is! We also got to meet with my lovely Abu Dhabi friend and her lovely family after many years!
We ended the summer with a trip to our favourite hotel Clonea Strand for some nice wind-down time.
Our final trip was the Liverpool one which cost mad money and will never be repeated! But it was a one-off trip for Mr Jazzy's 50th. Sadly our trips will be non existent in 2010. We couldn't even make our annual Christmas dash to Clonea, which is sad because I always looked forward to that energy-booster trip to set me up for the months ahead!
September to Christmas has been very busy schoolwise with WiiBoy. We have struggled, particularly in the first term, with homework etc but over-all it's all going really well.
Christmas in the Jazzy house went very well and I even managed not to poison anyone! I am happy to report that Santa came with everything on the list so WiiBoy is very happy. XBox 360 has now replaced Wii as toy of choice! I wonder now if another name change is in order for WiiBoy?? XBoy maybe???!!We won't rush to it though.....probably just a novelty at the moment!! Oh..... I'm also happy to report that my mam made it to Christmas Dinner! It was a close call but she made it.....she made that choice to be better ;))
I consider us to be very lucky to look back over such a great year as I know that not everyone has been that lucky.
I think of all the people in Ireland who got flooded this year. It is the worst flooding in our little nation's history and will cost millions and millions of Euro to sort out. But those poor families have lost their homes. Some of these houses can, of course be fixed. However it will take a very long time, as we know only too well. As we've been through a similar experience we really empathise with them.
And now a big freeze has descended upon Ireland the last few weeks and some of the families flooded probably now find themselves snowbound!! Has to be said though.....this little nation of ours does not cope well with extreme weather conditions. Our councils are simply not prepared for it. Somehow, we seem to have avoided the snow here in Shankill-by-the-sea!
I think also of the people I know who have very ill relatives. My thoughts are with two friends in particular and I hope that 2010 brings them some hope.
I think of my facebook friends , some of whom have had a particularly rough year with their very special little children. May 2010 also bring you hope for your children's future. Personally, I feel very hopeful for you all ;)
To all my friends in real life........
To my friends and followers in Blogland ....in particular Nan P, Kathleen, and V as I don't have you on facebook!........
To all my friends on facebook (you are all truly amazing and awe-inspiring and I love reading your blogs!)......
May I thank you for your friendship in 2009 and wish you all a HAPPY and HEALTHY New Year.
May 2010 be a good year for you all......
From the Jazzys in the New Year's Eve Snow!!
YES!!!! It FINALLY snowed here in Shankill!!
Have a great New Year's Eve!
Wednesday, December 23, 2009
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......
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.
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!
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!
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.
PS. Apologies for long post....I had no idea I was going to write so much....once I started I simply could not stop.
Friday, December 18, 2009
As I grew older and became a working adult I still loved all things Christmassy. I loved Christmas shopping ( that was then...NOT now!!) going out for Christmas drinks and parties with friends. What I really loved on Christmas morning was when my dad, brother and I would set off on foot (we didn't always have a car in our house) to visit our nearby relatives. We'd call to both our Grannies and maybe 1 or 2 aunt's houses as they all lived fairly close by. I really loved meeting up with all our cousins, we've a large extended family, and this was usually the only time we'd get to meet up.
We'd then trot off home, where my mam (if she hadn't joined us on our visiting trek) would have our lovely Christmas dinner ready for us. Of course, what I didn't fully appreciate at the time was that my dad had an ulterior motive on these Christmas Day visits. Alcohol. He'd have at least two drinks at every house.
As I grew older still, I loved the new traditions added to the mix. In particular I LOVED going to my local pub on Christmas Eve. The place would be packed to the rafters and I'd get to catch up with friends I hadn't seen all year ....... particularly those who had emigrated to find work. A few of my friends would stop by our house on the way home and my wonderful mother would sacrifice some of the Christmas Day ham which she had just cooked. There is nothing like hot "real" ham sandwiches after a couple of drinkies!! Mmmmm...... I can taste them right now....seriously yummy!
It's only now, when I'm all "growed up", married and have a child of my own that I realise the stress my mam was under! I now realise why both my mam and my Granny always said they hated Christmas!
I now find myself saying the same thing every year! But that's a shame. And it isn't really technically true. I mean, I DO love Christmas. Honest, I do! I love the tree and the Christmas decorations. I love the presents wrapped under the tree..... I just don't like the shopping for and wrapping of them!! I love the Christmas dinner and I don't even mind cooking it, even though I'm not the best cook in the world!
I just hate all the stress involved .... and the running around, doing everyones Christmas shopping etc ..... all the madness for just one day!
But, I can cope with all that really. What I think I find most stressful is the "where are you spending Christmas Day?" question. Over the last few years that's been a major problem and at this stage I just say "Dunno". Or ignore it completely. Or, better still get Mr Jazzy to deal with it!
Of course most families experience this and I know most of you definitely have, as it's not easy spending Christmas Day in someone else's house when you have an Autistic child (that's if your child can tolerate the Christmas celebrations in the first place.) We had the visiting problem when WiiBoy was younger. The main problem was that he wouldn't eat which would make the tantrums even worse.
However, the main problem now is actually my mam! That sounds truly awful, I know. She's given us wonderful Christmas memories and I want to do the same for WiiBoy.
Let me explain though, before you think that I am truly the most awful person ever!
My mother has Bi Polar Disorder and Dementia. This condition hits her ( and us ) regularly and hits like the Roller coaster ride I talked about here. In that post I described how she can (on occasion) chose to be unwell, I also referred to previous horrendous situations and dealing with the HSE. One of these situations occurred about 5 years ago.
We decided to have Christmas Day with my mam, my brother and his then girlfriend in my mam's house. My mam had been temporarily released from St Ita's Psychiatric Hospital for Christmas. Unfortunately it soon became apparent that this was a very ill-advised decision. Christmas Day was spent running up the stairs trying to get her to come down and eat and to stop tearing things into little pieces (a lot of old family photos were ruined that day.) I would then come back down ( while my brother took over upstairs) and deal with WiiBoy who was having his own Autistic moments. The funny thing was I was actually saying similar things to both of them!! To cut a long story short we tried to get her back to hospital that evening, but as she wouldn't get into the car we called an ambulance. She refused to go so the Ambulance guy said "sorry missus...nuthin' we can do as she's refusing to come with us" and they left!!. Seriously... that's what happened!! If you break your leg .... or are lying unconscious in the gutter they'll get you to hospital. But, mental illness?? Pfft .... you are on your own. My brother eventually got her back 3/4 days later (seriously dehydrated) by slipping a Valium into her tea.
Anyway, as you can see that was a very difficult Christmas and I swore I'd never put her, or us through that again. My mam is in a nursing home since then and I only take her home on the day if she's well enough. For all our sakes. That decision can only be made on the day though so we have to stick around. That's why I hate other family members putting us under pressure to decide where we're spending Christmas!
But here's the thing ......... why is it wrong to want to spend Christmas Day in your own house???
Why the pressure to go somewhere else???
I mean, once you have a child (or children) have you not got your own family? Do you not then begin to create your own family traditions and memories for when your children are older??
None of my childhood memories are of eating in any house other than my own so I want WiiBoys to be the same. I don't want his memories to be of being dragged from pillar to post on Christmas Day. Let's face it, like most children he prefers to be home with his Santa toys and like most Autistic children, he eats and behaves better when he's at home.We can visit Christmas Eve or St Stephens' Day . Why does everyone have to be visited on Christmas Day??
We have very few Santa years left, if any, with WiiBoy as he's already questioning his existence. Well, he questions it one minute and then the next minute he asks how Santa will find the Christmas tree as we have it in the new extension this year and the chimney is in the sitting room! However, he has solved the problem. He's going to make signs ..... "Tree this way Santa" and put them up!! Ahh.....bless!
So, we're making our own family traditions starting with our first real Christmas tree in years!!
You have no idea how much I love this tree!
........This picture of last year in our unfinished house might give you some idea though!
Of course the best thing about this year's tree is that it was chosen and purchased by Mr Jazzy and WiiBoy! The only Christmas job I have not done. Now, that's a tradition I'm definitely going to retain!
We are having Christmas dinner at home and WiiBoy has even asked to try turkey this year!! My brother and his wife are coming (they've no children) and my mam too. If she's well enough. The rollercoaster named The Bi Polar Express commenced it's ride yesterday so who knows whether or not she'll be well enough by next week. The trigger this time, unfortunately, was the Nursing Home's annual Christmas party for patients and their families. It was held, as usual at 2pm! WiiBoy finishes school at 2.30pm so I can never go (no family nearby to help out). Have to say, even though I explained to her AND the staff, why I couldn't go I was put on a bit of a guilt trip by their comments. What can I do?? I can only make so many bits of myself.
Maybe it's not the stress of Christmas that I dislike. Maybe it's the guilt trips.
Or maybe it's both.
I have finally come to realise that the answer lies in acceptance.
Accept the decision we make to have Christmas at home and advise others politely of our decision and leave it at that.
Accept that mam will come if she's well enough.
Accept that I have no control over her mental well-being.
Whatever happens, I am creating a nice Christmas Day and nice family traditions for us .... come what may!! Then we will nice and calmly, visit Mr Jazzys' family in the Wicklow hills on St Stephens' Day where WiiBoy can get to meet with his cousins, aunts and uncles!
Whatever way you and your family do (or do not) celebrate Christmas Day, I hope that December 25th is all that YOU want it to be for YOUR family.
P.S. Oh, by the way, WiiBoy wants to post the above Christmas tree photo and say a few words over on his blog. I've no idea what he wants to say, so ..... stay tuned!