A Slice of Saturday Night

[Photo]I've been dying to write about our preparations for this show! Unfortunately house problems have taken over!

Anyway, bit of background. While I'm on a career break to look after snuggles I somehow got myself involved in local shows!! I've danced on stage for years and then I stopped. Too ould!!

I'd never choreographed before but local panto needed me so I've choreographed that for last 5 years. Then last year a very dear friend from a long time ago (whom I also roped into directing the panto!) thought it would be a good idea to do something with the very talented teenagers we were working with.

And so St Annes Youth Theatre was born.

For our 1st production we did "Godspell" (see pic above) with a traditional small cast of 11 teenagers. They were absolutely amazing. People in Shankill still talk about it and ask us when the next show is!

Well...the next show is " A Slice of Saturday Night" http://www.philipcrammond.com/heatherbrothers/sliceofsaturdaynighthtm#and it takes place in the Mill Theatre, Dundrum in 3 WEEKS time!! Oh My God.... my tummy just did a somersault! We open on Sept 23rd and run for 4 nights (23rd, 24th, 26 the & 27th). We've chosen a professional venue as they deserve to perform on a proper stage. But it is SOOO expensive. If we don't get the sponsorship and SELL TICKETS then it's bread and water for chez snuggles for the next year!!

The show is set in a nightclub in the '60's. Any fashionistas out there think Mary Quant and Twiggy! There are 7 18 yr olds and an older guy who's the bouncer.... Eric De Vene. It's quite funny, nostalgic and a little bit naughty!

There are 31 songs in this show and we've only set just over half of them! Also, crucially, we don't have anyone to play Eric yet!! We really are up against it!! A Lot of work to be done and I don't have time to set routines due to the house problems. I barely have time to make rehearsals!!

We had a long rehearsal today and it was a mixture of bad and good TBH! There's one slow song, sung by the ensemble. It's called "Please Don't Tell Me" and it's a pivotal number in the show. We only set it today . They don't do much, just stand and sing. At one point they all move into a straight line across front of stage. When they did this, even though half of them still singing from script, it was stunning! I swear, myself, the Director and Stage Manager had tears in our eyes! Already we know it'll be a showstopper. And, us 3 will be crying every night they sing it. Just as we did for the finale of "Godspell" last year! People will leave the theatre singing this song. well, we'd rather that then they sing "Oh So Bad" (2 drunken guys being sick in the loo! ....very funny!)

I did intend writing about this as a kind of cyber diary when I started this blog. Kind of...."and now for something completely different" type of thing! Well.... Autism and shows, it don't get much different really!! I'll try to keep it up, be difficult with the move and me not having a laptop!

Anyway, must go and exchange my Choreographer's hat for my mammy hat and get snuggles' school stuff ready for tomorrow!

Until next time......

A Slice of Saturday Night

I've been dying to write about our preparations for this show! Unfortunately house problems have taken over!

Anyway, bit of background. While I'm on a career break to look after snuggles I somehow got myself involved in local shows!! I've danced on stage for years and then I stopped. Too ould!!

I'd never choreographed before but local panto needed me so I've choreographed that for last 5 years. Then last year a very dear friend from a long time ago (whom I also roped into directing the panto!) thought it would be a good idea to do something with the very talented teenagers we were working with.

And so St Annes Youth Theatre was born.

For our 1st production we did "Godspell" (see pic above) with a traditional small cast of 11 teenagers. They were absolutely amazing. People in Shankill still talk about it and ask us when the next show is!

well...the next show is " A Slice of Saturday Night"

My Slice of Heaven

Just back from 4 days in my favourite place in Ireland.

We discovered the Clonea Strand and Leisure Centre/Gold Coast Hotel about 7 years ago! The decor in the hotels are quite dated but the staff are very welcoming and look after us really well as we go there 2/3 times a year. They never charge us for our little boy and the food is delicious.

We have a beach outside our door, a swimming pool in our hotel (+ the "bubble pool" in the Gold Coast), the Play Loft and a small bowling Alley! hubby also joined the Gold Coast Golf Club....MUCH cheaper then the exorbitant Dublin and Wicklow prices! So there's lots to keep us amused without going anywhere else.

We got into the habit, over the years, of just keeping to the hotels and not touring around. This was mainly due to Snuggles......it was one thing to go "visiting" anywhere but quite another to fit any other visits in. Even now he hates if I go some place on our travels that I haven't told him about. Even if it's just 1 or 2 extra shops while out shopping. Also, when he was younger he really was very limited in what he ate. A lot better now and we even visit the Chinese restaurant while we're in Dungarvan!

There are some horror stories from our trips to Clonea...like the times we had to leave the restaurant. They brought our dinner to our room instead! And the awful bowling escapades! Now , he loves bowling but he HATES to lose. Constantly watches out for the pictures on screen when you get a strike or a spare. There were times when I had to pick him up and drag him away he was so upset. Once he wriggled out of my grasp and ran screaming through the hotel. And still they welcome us back!

This year was great though. He found the bowling hard but was able to contain himself so we all enjoyed. I've done social stories with him to help in this area. Because he's in mainstream, and getting invited to birthday parties, I want him to be able to go to bowling parties and cope with it. It seems to be working!

I have found over the years that perseverance pays off. The very 1st holiday we took to Spain when he was 3 was an absolute disaster. I don't know how we ever went anywhere ever again! But we did and bit by bit he's got used to it. We tend to stick to the same places though. But, guess what this year he asked to go somewhere different!! that was for Spain NOT Dungarvan...he loves Dungarvan!

Ahhh......sigh....... roll on Christmas when (please God) we'll be down again! Now, that's one of my favourite times to go there. Christmas is SOOO stressful. Nothing to do with snuggles...he's great. It's family and who's having dinner where etc, etc. My mam in nursing home nearby so we end up taking her each year, so hubby doesn't get to see his family Christmas Day. I really hate it. But, the last few years we've gone to Clonea from 27th - 29th Dec. It is absolute bliss!!! I can cope with it all once I get those few days!!

No pics as I can't find USB connection! Everything packed away in boxes due to flood. Downstairs gutted. We have a DeHumidifier and 2 powerful fans downstairs. 'Tis like living in a wind tunnel!!

The Day The Rains Came

Well, I thought my post on the rainy day in Dublin and our summer was bad. it has NOTHING on the rainfall we had last Saturday! OMG....it THUNDERED down. Unbelieveable. Monsoon-like. Seriously, I've never seen anything like it.

I'd gone shopping and to the gym in the morning and everyone was commenting on the rain. We had lunch when I got home and I noticed a little puddle building up in the back garden that I'd never seen happen before. Hmmm....must keep an eye on that sez I.

Went upstairs, did some ironing whilst checking on the ever growing puddle. Even showed it to snuggles who was getting quite excited about it. Then Hubby calls me and says "look at this". We're at a T junction and about 40/50 feet away 2 puddles had formed either side of road and were meeting in the middle. This had never, ever happened before. So we watched it build. And spread.

Good bit away from us so not too worried. We never thought to look down! So Hubby opened front door to watch puddles out front and Oh My God.... half garden was flooded and it was just at the front step! Couldn't believe it. This was in the space of 10 minutes! Car was in danger of being flooded so got the wellies on and moved it up the garden path. We eventually ended up with a lake out front and the only dry patch was the slight rise where car was parked.

All the neighbours only realised what was happening at the last minute, things happened so fast. We didn't know what to do . I was out helping put builders sand we found into plasic bags. Too late though....water came into house in minutes.

We were lucky though cos rain stopped (Thank God) and Fire Brigade came within 20 minutes. They were there for 3 hours pumping the contaminated water away...they used our side entrance. Needless to say the kids, including snuggles , had a ball! Best day of their lives, to be remembered forever. Our guy LOVES water, puddles, rain, showers etc. He pranced around in it. Hard to get him to stop. Firemen told the people with no wellies to disinfect themselves after so that'll tell you how bad it was.

Something like this brings out the good in people. The neighbours came from everywhere to help out. All the kids were fed in 1 house, we had dinner in another and snuggles got to have a sleepover (Yes...a sleepover!!) in a pal's house!! all unplanned, he was great that day, sure he was so excited. The neighbours were great. Even if it didn't affect them they wanted to help. And they'll contact the council to complain. Of course it was the council's fault for not maintaining the drains. Firemen said it. Council workers who came later agreed! Sure our houses are on a cliff for chrissakes!

Council came next day and found drains that were tarmacadamed over, manholes they didn't even know existed and they found a tree growing in one drain!! Despite news reports saying the 4 Dublin Councils were prepared for this (they had floods northside previous weekend) they were NOT prepared. The "emergency" helpline kept cutting me off so obviously wasn't sufficiently manned. We tried to get some of the "stockpile" of sandbags and 20 arrived (approx 20 houses flooded)! No-one was told they'd arrived..if you saw them you got a sandbag if not....tough.

And now the aftermath. We got 3/4 inches of water. Not too bad I hear you say. It was contaminated though so everything it touched has to go. Flooring, doors, furniture, walls have to be stripped back. Although hall carpet destroyed it only went 3/4 way up 1st stair, but hall, stairs and landing carpet must go. We need de-humidifiers (yes, more than 1!) for 2/3 weeks to dry it out. Loss Adjuster would prefer we don't stay while it's being done. So do I! I swear to God, the smell was so bad. It's toxic. Getting rid of the carpet has helped though.

Just heard today that there was ecoli in the water. A few of the neighbours have been sick. Yikes!! But, we're going away for a few days tomorrow so that'll help. We can think about what we'll do. Moving out for a bit is such a hassle. Snuggles back to school in a week. New classroom, new teacher (for 3 weeks then another new teacher), harder homework AND a new home??? The timing couldn't be worse.

On the positive side....I hate my house! Needs serious de-cluttering and I didn't know where to begin! Now I have no choice! We are going to build an extension so we might try and combine that. My 3 piece suite is falling apart. Bye bye suite...and Hellooo Land of Leather!! This could work out rather well actually!

I also got some cool photos! Not with my camera unfortunately so I'll have to figure a way to post them on here.

Can't wait to get to Dungarvan tomorrow!! Pool and jacuzzi here I come! Keep my bottle of Vino Sol chilled please Mr barman...I'm on my way!!

Trusting The professionals

Sometimes it's so hard being a parent! Especially when there's something wrong with your child and you're relying on the Professionals to correctly diagnose your child, give you the correct information and follow through with relevant treatment.

In our case it was a struggle to get the professionals to see that there was anything wrong with our little guy. Until I learned how to play the game. The most important thing, especially with Autism, is to make sure they get to see the behaviours that concern you. Sooo, if you want to induce a tantrum and feeding them coke or keeping them hungry is what triggers it then that's what you do. Not fall apart like I did at the 1st meeting and get offered parenting sessions! One year later I was back with a cantankerous child in tow, and minimal chastising from me! And, when they played THEIR game and asked what I thought was wrong with him I was straight in with "ADD, ADHD or Autism." Boy, did all their little heads raise from their little notepads! They were outa there in a shot and back in 10 mins offering a battery of Assessments!

Eventually they made their ASD diagnosis. There was no diagnostic scoring systems used, no ticking of boxes. They don't believe in them. I spoke to the psychologist recently to confirm this. she also said that they would have been in no doubt of their diagnosis.

Fast forward 4 years filled with interventions and a lot of hard work at home and we now have a different child. It's wonderful and a really great result. However, as we are about to be discharged from the clinical team attached to the special school, the current psychologist, and O.T., is re-evaluating him but this time using diagnostic scoring systems. Now, while I feel he should be re-evaluated (we need up-to-date reports going forward) I ain't so sure about all this ticking of boxes! I have to remember how he behaved/re-acted at age 5. I don't think we're ticking many boxes. I know that's good news and I feel like a bad mum "wanting" my child to have ASD. I don't, but he still has issues. I know that her plan is to get a statement of needs for him so that he can access services. Problem is I think she's determined to "find" that he's NOT on the Autistic Spectrum so that local community services will have to take him on. They have refused to take him on due to his current diagnosis. So...remove the label, get the services. Not neccessarily so as there's no onus on the HSE to honour the Statement of Needs for under 5's.

Over the last 4 years the current psychologist has said on numerous occasions: "I, don't think it's autism, I think it's.....1) ADHD and language disorder" (3 years ago)
2) PDDNOS ( 1 yr 4 months ago)
3) Aspergers.(recently)

As far as I'm concerned they're all on the Spectrum anyway!

While merrily ticking all the boxes (or not) she repeatedly says "that's normal" or "he'll grow out of that" to most stuff I raise. Then she comes out with the classic: " Do you tell people he has Aspergers?" So... what exactly does she think he has?? What is she at?? I told her no I don't say that cos no-one has officially diagnosed that ...yet. She doesn't think I should highlight his problems to people. I agree with her on that. But more importantly, what on earth am I supposed to tell him when he asks why he can't say things the way his friends do?? Or if he asks why he's different. I think you can see why I'm concerned about her findings.

So, our child's future depends on this professional making the correct decision. Whatever her report says will have a huge impact on his future.

On top of this our little man also has a kidney problem! He has high grade reflux in left kidney and this kidney is only functioning at 15% . Ther right kidney is perfect though. In this case the consultant dealing with us for the last 4 years doesn't agree with performing a sting operation to repair the damaged valve. He said there's not a big success level in high grade reflux cases and even if it did work the kidney is damaged beyond repair so what's the point. Meanwhile snuggles is on an antibiotic for 4 years and has to get unpleasant tests done every year.

We've now been moved to a new consultant, the highly regarded Prof Puri, who absolutely believes in performing this op! We just had a test done this week and radioligist says it's highly likely that he'll perform the op on snuggles. He says it's 90% succesful even in high Grade cases!! See what I mean?? Who are you supposed to put your trust in? How can they differ so much in their opinions? Again we have to trust the professional to make the right decision. Needless to say I'll be quizzing him at our consultation on the 28th!

Ireland is definitely not the country to be in if you're sick. Just think of all those poor women, (and their families,) who were incorrectly told they didn't have Breast Cancer. By the time they got correct results it was too late to save some of them. They were seriously let down by the professionals in charge of their care.

We have to right to quiz and double check with regard to the professional's advice and recommendations. It is terrible that we feel the need to do so though.

You Just Gotta Laugh!

As that old Bagatelle song from the 80's goes...." I remember that summer in Dublin, and the Liffey as it stank like hell...". The Liffey in the 80's stank from the heat. Remember that? Heat from that yellow ball in the sky ?? The sun, I think it's called!! Well, I'll remember this summer in Dublin, and the Liffey as it swelled...from the lashings of rain!!

Today though takes the biscuit. We, (myself, snuggles, cousin and her 8yr old boy) decided in our infinite wisdom that we'd have our annual summer get together in town. We'd do the Viking Splash tour. Yay, WooHoo said the boys. That'll be such fun! This tour involves getting on a 66 yr old World War 2 DUKW (amphibious truck) which does a mini tour on land then splashes into the River Liffey at Grand Canal Basin. We chose today to do this trip, one of the wettest of our "summer"! It LASHED rain. And when I say LASHED I mean it PISSED out of the Heavens since we left the house at 2pm and got back at 9.30!! It was funny though. Well, you gotta laugh!

Like I say we left the house at 2pm and got the Dart into town. Took about 1.5 hours to get to the tour bus/boat. Now, I don't often do the "trip to town" cos Snuggles is quite active and finds it very hard to stay beside me. This is one of the things I think people might notice, in that it's a little odd. He doesn't do walking...he hops, skips, jumps, throws a shape and flaps his hands. Intermittantly. I constantly call him back and grab his hand. He stays for about a minute then it's off again. This was our 30 min walk from Dart to bus stop so I was a bit frazzled when I got there! Well, you gotta laugh!

We saw the previous bus/boat take off and heard the Viking rep give his spiel. Then it was our turn. Our Viking rep was very good, she was quite funny...dry wit. she began to give the 3 steps to the Viking Roar (we had to do this every so often at unsuspecting tourists en route....very funny!) She gave the 1st step...hands up show the fists. And snuggles just started roaring!! Everyone laughed! Now I might add he is a very funny little guy, he loves to make people laugh. It's how he makes friends. So this was just right up his alley. So every time we had to do the roar he gave it loads!! He even added..."you wanna piece a me..ya suckers!" Direct quote from his fav cartoon! It was hilarious. Rep says.."but how do we stop him?" (joking). I just said I'll take his batteries out!! Well ya gotta laugh!

This bus has a roller shutter for a roof and no windows and like I say it was just lashing out. So we all got wet. Drops of rain were coming through the roof! When we went into the river they have to roll back the roof. So we got umbrellas to keep us dry! But the rain dripped off and soaked the people behind so we had to put down the brollies! I mean, picture it... A WW2 small boat in the Liffey and lots of umbrellas up!! I tell ya, it was hilarious! And we got soaked to the knickers!! We learnt a few things though .... The Grand Canal Basin is about 22 feet deep. We reckon it was 28feet deep today! Also the swimmers who take part in the annual Liffey swim (200 swam last year) Have to get 10 vaccinations!!! You only need about 3 for the rain Forest! Ya just gotta laugh!

When we got off, our first stop was to the nearest Dunnes Stores in Stephens Green to buy new (cheap!) clothes for the boys as they were soaked through. We put the old damp clothes in the Dunnes paper bag. Then we went for tea and a well earned glass of wine. Then we headed home. And to put the icing on the cake, the cherry on my Sundae, Snuggles gets a nose bleed on the Dart!! His first nose bleed ..... EVER!! Of course he decorated his new clothes....and mine!! I had no tissues, so guess what I used?? His wet knickers from the paper bag that was now falling apart from the rain!! He even laughed at this! Luckily someone saw my dilemma and gave me tissues.

What a day! And do you know what?? I'm still laughing!

That's My Boy!

Ok, Jazzygal's FINALLY stepping out! I can't think of a better place to start than with my little man...the sole reason I ended up in Blogspace in the first place!

Our Snugglepuss was born in December 1999 and has taken centrestage in our lives, naturally enough. We love him dearly, but the early years were not easy. He cried a lot as a baby, didn't sleep through the night til he was nearly 5, was an EXTREMELY active baby/toddler/child ( I could never walk anywhere with him in my arms he was so active) and the "Terrible Twos" arrived very early! Oh, lots of screaming and tantrums. He could tantrum for 45mins to an hour and a half, most days. And I NEVER knew why. Or I rarely knew. Because his speech was very delayed. In fact his tantrums and screaming pretty much summed up his communication skills ! The first proper conversation, you know where he says something and he waits for your reply and then he replies ( conversational turntaking that we take for granted) happened when he was 4 years and 5 months old and lasted for about 3 mins! What a turning point that was!

After much soul searching, discussing him with anyone ( and I mean ANYONE!) who'd listen and making all sorts of appointments with all sorts of professionals we were finally told, on Dec 17th 2003 that he had Autistic Spectrum Disorder(s). That was 5 days before his 4th birthday and 8 days before Christmas. Around the same time our childminder expressed her difficulties in caring for him (he'd recently been "discharged" from the local montessori)...she'd continue to do it though for more money! Christmas... Bah HumBug! Or, as Gaeilge: Christmas me arse!

It was hard to accept, I thought it was ADD or ADHD. Hubby couldn't get it at all. So I read up on autism and slowly began to tick the boxes. Accepting the diagnosis was difficult enough but getting others (especially family) to accept it was even more difficult. Now we could tell them why he behaved as he did, we could explain it. But he was no rainman....he (like most ASD kids ) did not fit the impression most people have of autism. They meant well though and were as supportive as they could be. Also, difficult decisions had to be made. First year at school was coming up but the traditional First Day was not to be for us. No meeting other mums at the school gate or playdates or after school activities.

We had to decide whether or not to send him to a special school for autistic kids ( an horrific thought at the time...he's not that bad, is he?) or fight for local mainstream school. We chose the special school, preceeeded by 3 months in a special needs language school. That choice changed the course of our son's life and our family life. We are very lucky cos not everyone can say that.

He thrived, but a lot of hard work had to be done at home to continue the interventions. That's so important as it's life skills he's been taught and life doesn't end at the school gates!

Anyway, after 4 long years of this, which included his slow and controlled integration to a local mainstream school, we've now been discharged from the special school! It's a great result. He has some problems of course and has a Special Needs Assistant to help him through his school day. However, he also has developed friendships, can play games and now does after school activities. I also get to meet the other mums at the school gate and we have playdates! My son and his pals...not me and the other mums I might add!!! I have to add that his inclusion in the school, and my interaction with other parents has been greatly helped by the fact that I've been involved with the school panto for the last 5 years! And I will definitely write more about that in the future! Oh yes I will!!

So, things are looking good for us I'm happy, and proud , to say! But it ain't over yet. Autism is a lifelong condition so "it hasn't gone away you know"! I suppose the ultimate hope for an ASD child is that they reach their full potential, learn to cope with their difficulties so that they blend in and function to the extent that no-one even knows they have the condition. That said, snuggles place on the spectrum is now being re evaluated. I suspect, with good reason, because the current service provider can no longer provide him with the support he needs ( no longer in special school) and he needs to lose the label in order to get it in the community. With no guarantee that the community even provides the same support. So, I know I should be delighted. I am, but I'm also worried. He HAS to continue to get what he needs. I fear the label being removed yet I want him to function so no-one need know. I guess it's a bit like accepting the initial diagnosis.

well, that's my 1st blog done.....more ramblings from the world of autism, pantos and musicals to follow! Well they do say the eclectic model is best!