Thursday, June 3, 2010

Small steps, giant leaps

Noah simultaneously took a small step and a giant leap into the world today. How so you say? Well, today, Noah had his first afternoon in mainstream creche and despite some initial anxiety (on our part...), he got along great. Whilst this seemingly small exercise may not raise too many eyebrows in the rest of the world, to us it is a huge deal as it is the first time he is venturing out into the mainstream world on his own. To date, he has been attending his school regularly with his Mummy (and occasionally his Daddy) and working hard on his speech and language and his physical development. All this work has culminated in a walking; talking (in his inimitable style) almost two year old boy and as such he is ready to take those small steps into the giant world.

Are we proud of him? Absolutely bursting with the stuff. Were we nervous about doing this? Absolutely. We have found ourselves in this rather unique situation whereby the seemingly small things, sending your child into a creche/playgroup with other children for example, are manifested into giant deals which fuel our anxiety, nerve levels and general worry-ometers. Now I know that every parent will worry when dropping off their child for the first time into a new environment and I am in no way trying to garner sympathy or anything like that but we just find these things a bigger deal than perhaps we might have done in another lifetime. Maybe we wouldn't have but I suppose we will never know now. Our goals are quite simple for Noah, aim high and do everything in our power to give him the support he needs to get there. If he needs additional support along the way then so be it, it's no problem per se but personally speaking, is there any point in aiming for anything other than the top for him? Noah will dictate the path of his life himself, we'll just be there to give him all the tools he needs for the trip and today was one of those occasions.

As he took his first small step into the creche today, Noah was unaware of the giant leap he was actually taking. We hope there will be plenty of giant leaps in his life but even if there are just small steps, we'll be there right alongside because one small step for our little man, is one giant leap in our eyes.

Friday, April 9, 2010

Frank-ly Speaking

I first heard of this from Nick's blog (cheers Nick) and it has made the national press in the UK with the Guardian and the Daily Mail taking it by the horns. I commented on the Daily Mail website with the following:

"General theme for the Frankie supporters seems to be "you know what he's like so don't complain". I disagree completely. In my opinion the biggest gripe here and where it all stemmed from is not that he made jokes about people who have Down Syndrome, but rather he just rehashed tired old and outdated stereotypes in which to do so.

My baby son has Down Syndrome and I would have no issue if I saw a comedian making new original jokes about it as frankly would give me something to laugh about, I know others in my boat who would feel the same. What I would and do find offensive is, as the original blog states, lame jokes about people with DS having bad hair and talking funny, bad fashion etc. Frankly it's unoriginal and shows a lack of talent on behalf of the 'comic'. As some have stated here, it's just the playground bully mentality which has no place in the public adult arena. For such a 'risqué', 'intelligent' and 'edgy' comedian, you would think he could do better than this. no?"

At last look, I had an 'up' rating of 135, not too shabby I suppose but am frankly appalled by some of the attitudes of people. Whilst fully realising that the Daily Mail online message board is hardly a true reflection of our society as a whole, some people just really grind my gears with their blasé-ness. Incidentally, the above comment was my second attempt to get on the board, my first unpublished comment made criticism of the Daily Mail and its use of the terms "Vitcims" and "Sufferers" of Down Syndrome, I wonder why I wasn't published? Thankfully I have seen some people manage to force this issue through the moderators, they obviously know a way in that I don't.

I'd be interested to hear your take on the subject so let me know your thoughts...

Monday, January 11, 2010

Hello Again

We're back and with a great excuse for our absence. On the 18th October 2009, little Evan joined the family Muse and made Noah into a big brother all in the same day. Since then I've been suffering not so much from Writer's block but more a case of Writer's inability to find 5 spare minutes to get on the PC and write a blog. Well, this a whirlwind update as we have great news, Noah is up on his feet and taking his first steps unaided into the world with his 12 teeth (yes, 12!) firmly in tow. Whilst still waiting for his accreditation to be a fully fledged independent walker, he is making some really great progress for 18 months old and we couldn't be prouder of him. The below gives a quick example of his new found abilites, aptly backed by 'The Entertainer' music, ever twas it so...



I hope you're still all out there and I will be updating soon with hopefully longer walks, longer words and a longer blog on the last few months with my 2 wonderful little boys. Until then...

On a similar note, a big congratulations to Ava on becoming a big Sister to baby brother Dylan, well done Ciara and Dave too (mostly Ciara...).

Friday, September 18, 2009

Cruisin' and Chattin'...

Noah got fitted for his first ever pair of proper shoes yesterday, a momentous moment in the house of the Muse. He is now a proud wearer of some particularly snazzy Bobo Elephant cruising shoes in an impressive [size] 5G. This need for shoes stemmed from a visit to the Physio department in his school to assess his need for any orthopedic shoes given that he is now officially a crawler and well and truly on the move and up on his feet! The good news was that his upright stance is perfectly 'normal', his heels are properly aligned as he hauls himself up and so he got to have a visit to Clarks yesterday morning to get fitted and kitted out. Despite some initial wriggly toes with the tickly measuring tape, he performed perfectly and took to his new shoes like a duck to water proudly showing them off to all and sundry in Dundrum shopping centre, he likes the limelight it would appear....

After months and months of daily physio, Noah finally got to his feet via the sofa and the coffee table. With the aid of some Happy Straps, he then proceeded to bullet around the house on all fours. Give him a rabbit to chase, ideally a camera strap or his slinky, and he is off. I managed to capture him on one of his ventures so check him out below...



What more incentive could a young man need to crawl than a kiss from his beautiful Mummy...



Beyond his crawling and cruising, Noah is now also starting to put some words and Lámh signs together. Wordswise he can muster "up", "down", "more", "nice" and "again" and signswise he has started the motions of "fall down" and "finish", these are skills he will continue to work on every day and it is truly amazing how much he seems to absorb. Most impressively lately has been his adoption of his own name, check out the below for an example....



The other exciting piece of news from these shores is that Noah is set to be a big brother in the next 5 weeks, his little chum is due to arrive on 24th October so keep an eye out for the updates, as they say in Noah's favourite programme.....isn't that a pip!

Monday, July 20, 2009

Suffering? Really?

I was thoroughly disappointed to read the below in the Sunday Times this past weekend whilst enjoying a bowl of shreddies. I sought out the article online and was heartened somewhat to read the comments at the bottom which agreed with what I was thinking at the time of reading.

Have a read and let me know what you think yourselves...

http://www.timesonline.co.uk/tol/life_and_style/health/article6715020.ece

As Mrs T rightly points out, why is the 'good' story tucked away at the bottom (bottom right corner on the printed copy)? It worries me that the Sunday Times would promote such an article so and I fear it is only going to pander to the negative stereotypes already out there, poor show from the Times.

Friday, May 29, 2009

My Adventures...by Noah, aged 11 months

Welcome to my adventures update. As you will see from the below, I have been keeping very busy with my Mummy and Daddy and learning all sorts of new things.

Tooths

My first tooths have now broken through which was really sore but now I have two really sharp spikes to bite (my food and Daddy's finger) with!


Moving

I am trying to crawl and have managed to go backwards a few times. Each time I try to go frontways, I seem to go in reverse but they tell me I'm nearly there. In the meantime, I stay happy by shuffling around circleyways which confuses my Daddy lots!

Speaking

I can now say "Dada" and "Mama" which seems to keep Mummy and Daddy smiley. There was one time when I said "more" and "bed" but it could have been a fluke, I'm not sure. My Mummy does lots of work with me every day and it is lots of fun, I even get to play splishy splashy with my ducks which makes a mess and I like it! I also did the Lámh sign for 'Fish' one day which my Granddad taught me to do, he is old but funny!

Some photopics of me...


I can now sit up on my own...


I have great fun with my silver foil cape...


I have been painting with my hands...


...and with my feet.


Check out my work...


I am very proud of this canvas...


I love story-time with Daddy...


I have been practicing on the swings...

And am getting really good at it!


I don't understand why Mummy and Daddy have those silly glasses on...

I like driving my new car...


I like it a lot...


I love standing up for a mummy cuddle...

This is my Formula 1 Debut, just call me Jenson "chocolate" Buttons...



















Me and my pals playing in the park, it was BLOOMin' great fun!
(Ava was there too but we missed her in this photosnap).

Thanks for reading about my adventures, lots of cuddly smiles to you and see you next time!

Noah x

Tuesday, May 12, 2009

All You Need Is Lámh

This article can be seen at the following link:

http://www.dad.ie/details.aspx?id=112

When we think of communication, almost always our first impulse is to relate communication to speech and speaking. Conversation, dialogue, monologue and soliloquy are all means in which we can convey our message by using words and articulating them in a way that can be understood by our audience. To the majority of us, speech is a skill or facet that develops quite naturally and as a matter of course in our development as individuals.

We learn as children from those around us, initially our parents and siblings and then from friends, peers and ultimately our teachers as we progress on our educational path. To some, speech and language become essential tools in professional life, to others it is merely a means to an end but what is certain is that to all, speech is a vital component to maintaining a standard of living in accordance with individual circumstances. To imagine ones-self without the powers of natural speech and communicative delivery is a concept quite alien to most of us. We can understand, perhaps even empathise, but we will never truly grasp the reality of such a situation.

So then, what of those to whom speech does not come naturally and is something that is a constant source of struggle, conflict and hardship? What of those with developmental and learning difficulties? What of those like my Son?

My Son Noah has Down Syndrome and can potentially expect delays in his speech and language development. Potentially at this stage because, at ten months old, it is too early to be able to say with any certainty how his development will progress, however this area of development in children and adults with Down Syndrome can traditionally be one of the more common attributes associated with this Syndrome. Of course, the variance between individuals is vast, whilst some will certainly struggle, others will experience little to no significant delays in speech and language development, whilst many others will fill the expanse in between. As in every area of life, everyone is different and nobody conforms to the textbook.

Communication itself is a far wider spectrum than merely speech and speaking. As we are discovering with and through Noah, the ability to communicate goes way beyond merely the formation of words. Noah currently attends a Speech and Language therapist who prescribes a healthy dose of fun games and activities for him to work on each day, so as to give him the best possible chance to hone his communication skills. As an example, through stacking cups upon his vocal command, he learns about cause and effect. Banging toys together enhances his bilateral hand function and selecting one favourite toy over another improves and develops his choice-making abilities. None of these activities are purely focused on speech, but all are intrinsically bound up in Communication and will ultimately aid his speech and language skills. One of the major communicative means that is used with children who have learning difficulties is visual sign language, more commonly referred to as 'baby-signing' , in Ireland this is known as Lámh and this is something we practice with Noah.

Lámh was developed in Ireland in 1982 by Speech and Language therapists, Psychologists and Teachers and has evolved since that time by incorporating the specific needs of parents and family members. Lámh comprises some 500 individual signs ranging across Object signs (e.g. book, ball, apple), Action signs (e.g. eat, drink, wash), People signs (e.g. Boy, Mummy, Daddy), Social signs (e.g. Hello, Yes, Thank-You) and Modifier signs (e.g. good, bold, more). Lámh is based on Irish Sign Language (ISL) and many signs will be the same however a number of Lámh signs are simplified versions of ISL signs and do not involve as complex hand shapes and/or movements. When using Lámh signs with a person, the spoken word is always used in conjunction with the visual sign. This allows the person to both see and hear the message being portrayed and in turn can help them to understand and learn the word more clearly.
As people with learning difficulties can have difficulties in communicating their message through delayed speech development, this can lead to frustration as words are often required to be repeated until they are clearly understood. A medium such as Lámh minimises the need for second guessing what a person is trying to say as the sign can be immediately recognised if the spoken word is not so, ultimately allowing the person to become more relaxed in their communication, which in itself can often help in producing and pronouncing words more clearly.

When using Lámh with Noah, we have started with a few simple signs. Noah and Daddy play with the 'ball' on the floor, Mummy gives Noah something to 'eat' and 'drink' and Noah is a 'good' boy when he takes a mouthful of said food or drink. There are many rules to follow when using Lámh and firstly would be to attend a course given by a qualified Lámh teacher, it is not something that should be picked up from merely looking at the picture cards provided. It is very important when signing that you are facing the child and they can clearly see and hear the sign being made. Not correcting mistakes in the early stages is important, whilst keeping the signs used consistent and correct, even if the child makes it incorrectly themselves, is another important factor.

Lámh signs can be incorporated into songs and nursery rhymes too as Itsy-Bitsy Spider will attest to in our house, making it a fun activity encouraging the child to join in with. Further to the songs, we also try to incorporate Lámh signs into Noah's story books where we can prior to bedtime. Naturally at this early stage with Noah, we are not expecting him to start signing back to us, however our hope is that the messages we are sending him are slowly but surely infiltrating his understanding, so that, in time, he is able to communicate clearly with us, either through speech and language or through Lámh signing.

In contrast to the title of this article, Lámh is not 'all' you need but it certainly provides a good set of tools to get you started on the road to communicating with your child and, hopefully, for them to start to communicate back to you.

Thursday, March 26, 2009

I Heart You

You may be aware that The Muse has been noticeably quiet lately, well there is good reason for this. I have recently been asked to write an article for a new Irish website for Dads (http://www.dad.ie/) and so you can find my first offering at http://www.dad.ie/details.aspx?id=59. On top of this, myself and Mrs T have spent three of the last four weeks at St. Michael's House attending a Lámh course, I shall be blogging about this in my next post (it's in progress) so won't spoil it for you just yet...Finally, we have last week taken Noah back to Crumlin children's hospital for his 8 month cardiology checkup to see once and for all if the three holes (VSD, ASD and PDA) that were loitering with intent in his heart, had closed up.

Well the excellent news is that his biggest hole, the VSD, has completely closed up and he has only one tiny hole remaining at the top of his heart. Noah is not due back to the clinic for two years and just for a brucey bonus, we have had it confirmed that he will not require any surgical intervention based on the current state of his heart. The sheer cathartic relief of this news was an exceptional feeling, an almighty sigh and thankful look towards the heavens was offered and it brought to a close one of the darker clouds that had been hanging around since Noah was born. Good times all round.

Some quick updates on Noah's world at the moment; Noah has recently been to swimming lessons in what can only be described a simply marvellous swimming suit, Noah has been on his first trip to the playground and is a fan of the swings but still remains sceptical of the slide, Noah has watched Ireland win their first Grand Slam in 217 years and was also delighted to see England pull off a remarkable second place (no, we're still not sure how that happened, still could be worse, could be French. Or Welsh...), Noah has been to his first Paddys Day Parade whilst suffering from a nasty bout of the snuffles and Noah has been on his second aeroplane trip to England and is easily the most comfortable flyer in the family. Enjoy the below pictures of the man in question and stay tuned for the Lámh post coming soon....




"they want me to weart this to the pool? will have to give this some thought, hmmm...."

"now I like this, mind me hat...!"

"oh my lord, I think that kick is going over..."


"ha ha! never in doubt, oo-er...."

"very nice Daddy, but those men are wearing skirts and we haven't been to the pub yet..."

Friday, February 13, 2009

Today's the Day

What does today mean to you? I don't mean 'today' as in a carpe diem 'oh captain my captain' style moment, but literally today, February 13th, what does it mean to you? In all likelihood, it probably doesn't have any particular resonance but today is a most explosive date in the most literal of senses. It was 64 years ago on this date that the Allied forces bombed Germany and in doing so, made a ghost town of Dresden, it was 44 years ago on this date that the American's bombed North Vietnam under the guise of Operation Rolling Thunder and in an unnerving series of coincidence, it was 18 years ago on this date that the Allies bombed Baghdad in the first installment of 'Bush goes abroad'. For me, this date usually instills the annual Valentines inspired panic, the one most men can relate to, that being when she said "we won't bother getting presents", did she mean it or do I still have to actually buy a present because despite what she said, she has gone off and bought me something regardless, beautiful lunacy at it's most pertinent. Beyond the commercially enforced romantic ideals, this date was much like any other to me, dutifully turning up once a year for 24 hours of regular daily life. Last year however, on this date, our own personal bomb was dropped into our lives and the aftershock that Down Syndrome was now a part of our lives rebounded through us again and again as we came to terms with the new life emerging forth as the chaos settled around us.

The first blog I composed spoke of the infamous phonecall, as I scribe here today it is hard to comprehend that that phonecall was precisely one year ago. It doesn't just feel like a different age ago, it feels like it happened to a different person. The bloke that took the call one year ago is not the same bloke that sits here today. This is not meant to be taken negatively, nor is it a despairing call for pity, it is just the stark reality of the situation. I am glad the last year has changed me so convincingly, I am glad for the new perspectives I have on life, for the new skills I have learnt through Noah and for the almost encyclopaedic banks of information I now have on Down Syndrome and Special Needs. I am almost embarrased when I think about the unerring ignorance I existed in prior to Noah and the multifarious talents he has brought to our table. I know I shouldn't be embarrased by this, but it does feel like that sometimes, it actually gives me a sly smile when I think about it to be honest. By no means am I asserting that I am now a 'complete' person or any other holistic related mumbo jumbo but it certainly feels like there is more of me now than perhaps there ever was before if you can make sense of that. Allow me to elaborate...

When Noah arrived into our lives, something was triggered within me. I don't know and cannot articulate exactly what this was, but I do know that for the first time I felt that I was exactly where I supposed to be, both physically and spiritually. Was I always destined to be a Daddy? Is it that factor that will define my life? Was I purposefully sent down the fatherhood track without realising it or is there more still undiscovered within me that will require another monumental shift in my appreciations? I hope so, but one thing I have come to appreciate over this past year is that the unexpected is the only stable aspect of my life. We cannot rely on that which we already know as we are merely constrained by these knowledge boundaries, in order to fully perceive our existence we must embrace the unknown and realise that it is the instantaneous that defines us and emboldens our future. I never knew I would be a Daddy, I hope I would be but I never knew for sure. I certainly never knew that I would be a 'Special Needs Daddy' but this is who I am today. The old, childless version of me is gone and in his place I now stand looking to the future and waiting for the unknowns to define my next chapter.

Today's the day the bombs went off, today's the day the smoke cleared and today's the day it all started to make some semblance of sense. I hope you find your today as I have found mine, it is a great way to spend the day once you finally get there.

Happy Valentines to you all, I hope your love is chocolately and heart-shaped.


*** EYE EYE CAPTAIN UPDATE ***

Noah visited Crumlin Children's hospital on Monday for his detailed eye exams. I am delighted to be able to say that he passed with flying colours, shapes and sounds on all counts. We shared the exam with Bob The Builder (can we see it? yes we can!) and Barney the dinosaur (still annoying as an inanimate plastic toy) and Noah was on top form following all the stimuli around the room. Our doctor requested to see Noah again in a year and a halfs time for a status update but was confident that he wouldn't discover any change (turns, squints etc) in Noah's eyes based on this weeks review. Great news all round and well done to Noah's peepers, now I know he can definitely see me and is actively choosing to ignore me most of the time....the little rascal.

Monday, January 26, 2009

Eye Eye Captain

Erasmus once said, "In the land of the blind, the one eyed man is king", well, I am as blind as a doorpost and so was holding out much hope at Noah's recent eye test at St.Michael's House that he would at least be one-eyed and as such, the King of all around me. Noah is due in Crumlin Children's hospital in the next two weeks for a more detailed eye exam so this preliminary check-up would serve as an hors d'oeuvre for us to establish whether there were any major problems with Noah's eyes and as such, his sight.

The first task was for the doctor to apply some magic drops into each of Noah's peepers. They may have looked like ordinary eye drops, but the magic of this particular potion was that within a matter of minutes, they turned Noah's headlamps into something resembling the below...



After fifteen or so minutes and a rapidly expanding waiting room of overly wide-eyed children, we were taken back in for the assesment. Seeing the handheld light that the doctor was wielding and directing in his eyes, Noah clearly mistook this for a Vogue fashion shoot (or other such popular magazine, I'm not entirely down with what the kids are reading these days...) and duly posed over each shoulder much to the amusement of the doctor and particularly his Mummy and Daddy. To say he was a little charmer in the doctor's office would be to understate the sheer astonishing levels of flirting he managed to reach, Daddy was proud... ;o)

The doctor was pleased with how his eyes looked which was good news, she noted that there was the possibility of a slight turn in his right eye but only to come back in (earlier than his next appoinment in six months time) if we deemed it to be significantly noticeable. Having never noticed it in the first place, we were not overly concerned by this but will dutifully keep an eye on it so to speak. We both fully anticipate Noah having to wear glasses when he is older as the pair of us have to scrabble around for our specs first thing in the morning and so Noah will be doing considerably well to escape the clutches of our short-sightedness. Having Down Syndrome merely increases his already likely chances of having problems with his sight but in this instance, I personally think that he will be facing the same challenges as an extremely high majority of the population. Look around you at your peers, friends, family, colleagues etc and see who amongst them has perfect vision? Yes, some people are blessed with a perfect set of mince pies and all power to them but in a world where plain glass glasses (i.e. non-prescription glasses) are worn as fashion accessories, I don't think that poor eyesight carries the same social stigma that it perhaps once did. Maybe I'm wrong and just justifiying it for myself I don't know, but assuming that Noah has nothing more than short/long sightednesses to worry about I think we'll be ok on this one. On that note, I have included below a few links to some further information on the potential issues that persons with Down Syndrome may have with their vision, I would encourage you to take a few minutes out to browse through to see that there's potentially a lot more to it than reading letters off a chart on the wall...

http://www.dsmig.org.uk/library/articles/dsa-medical-series-6.pdf

http://www.cdadc.com/ds/eyesight-problems-treatment-and-down-syndrome.html

http://www.intellectualdisability.info/mental_phys_health/opthal_ds.htm

Stay tuned for the update from the Crumlin check-up and as they say round these parts, "I'll be talkin' to ya..."