Cathal's Big Adventure

26 February 2010

10 February 2010

Even though Cathal may not be doing that well on the gross motor side of things, his speech and communication in general are coming on leaps and bounds. We could not be happier with him. He is babbling away, he has lots of conversations that we can't understand and he tries to talk to other children (not to adults.....what he has to say is a big secret and is on a needs to know basis, grown ups don't need to know). The reason that we can't understand half of what he is saying, is because we are pretty sure he is babbling in Russian. The variety of sounds he is able to produce is incrediable.

Apart from babbling, he is imitating a huge amount. He can say "READY, STEADY, GO!", although, when it comes out of his mouth it usually sounds like "eeeddy, deeeddd, OUOUOUOU!". But he has the intonation and an approximation of the words, and that is the first step. He dosen't have any clear words yet, but we are getting close.
Over the last three months, using a check list that Downs Ed have published (Vocabulary Checklists and Record Sheets: Checklist 1- First 120 words), I have realised that Cathal understands about 120 words (not all of them published on the checklist, but extra ones I've had to add), he can understand and sign 70 words, he immitates 30 words and he can spontaneously say 28 words (we are usually the only ones that understand). He still cannot say any words clearly enough for others to understand. But according to Downs Ed, on average, a child with downs syndrome will be able to learn to understand and sign or say 100 words. I think we are doing pretty well here, and I have to say, when I first ran through the check list and totted up the numbers three months ago, I was very surprised as to how much Cathal actually understood. I'm very proud of my little boy.

A few things have focused us in his speech. The first was something I read very early on in his life, from various sources. Talk, Talk, Talk.....talk about everything to your baby, describe what you are doing, what they are doing, what is around them....keep chatting. Not an easy task for me, I have to say, I tend to be more direct in my language, I get to the point quickly, and once it's said, that's it. I would be "quiet" in nature. I have learned to keep talking to Cathal though, and I hope it shows.

Speech and Language therapy is also hugely important, if only to give the parent ideas and focus. Unfortunatly, there is a huge lack of S&L therapists in this country, and not every child gets what they need. We've been lucky to be able to avail of it through Cathal's services and therapy has paid off for us.

Reading a lot! We keep a stack of books by the side of the bed, and usually while I am getting ready to get up, the Dad is reading books to Cathal in our bed. We read him a bed time story every night as part of his bed time routine (at the moment, the favourites are Where the Wild Things Are, The Very Hungry Caterpillar and Aliens Love Underpants). We label pictures, ask him to point to different characters and objects. We animate the story by screaming along with the Wild Things, or dancing around excited when the Aliens find underpants. This all helps to build understanding and it makes talking and reading a lot of fun.

Recently, we both also completed the Hanen "It takes Two to Talk" course. I cannot recommend it highly enough. It above all gives the parent the tools in facilitating the child's language development by using a few simple strategies. The one thing that really stuck out for me through the 8 week course, was how I don't give Cathal enough time to respond. Now, I count to 10, and it works. We both saw a huge leap in his communication very soon after we started the course, maybe because we knew what to look for in him.

Lamh has been another invaluable tool. He is signing more and more all the time. Especially now that we have the Lamh a song DVD. He watches it about 3-4 times a week, he knows all the songs by heart, he signs his own version of the words, and for weeks I end up staring blankly at him while he pats his tummy. I had to sit down with him to watch the entire DVD to figure out that he was signing "animal" completely incorrectly!!! When he pats his tummy now, I know he wants to sing Old Mac Donald...

So he might not be able to stand up, but he can chat till the cows come home!

A little taste of Cathal signing and singing along to his favourite DVD

31 January 2010

Time For Some Updates, First Stop, Physio

Physio, physio, physio.....ahhhhh...it's hard work for a little boy, especially when he is absolutely, positively, not one tiniest little bit interested in standing.

Sure, who needs standing, he can bum shuffle with lighting speed (if you don't believe me, check this out, second video down). He can get everywhere he needs to, to cause complete and utter destruction to his surroundings. Please consider the following photographic evidence as proof:

"Time for a tea break I think!"

"The cat likes to scavenge, doesn't he?"

Rolling is not a bad method for chasing a balloon or his own version of commando crawling (I really mean dragging himself along on his belly), is very useful when your fool of a mammy puts a biscuit 6 feet away from you in an attempt to make you crawl.

For months we have been trying to get him to stand:

in front of the TV, watching High Five, and getting him to dance -He is sooooo over that now, and after an episode of this, mammy's patience wears very very thin......
in front of the full length mirror, singing a song- bored with that now too
against the sofa with the cat just out of reach- he'd much prefer to sit and try and lure the cat instead

So now our physiotherapist has given us a new technique, which involves both parents, a special song to sing only when he is standing (not choosen yet, anyone have an idea for a good standing song?). I hope this one works!! We also have to get him to "crawl" up the top step of the stairs, and I discovered this morning, that leaving the basket of washing just out of his reach is his motivator to do it.

He's getting too heavy, and I have this sinking feeling of dread that I will be carrying him until he goes to school....arghhhhhhh

And it's not that he can't bear weight, he just won't. His knees stay together, his hips don't splay out, he's just a big lazy bum. The laziest child ever to grace the face of the planet.

He's always been a bit behind in terms of physio, I firmly believe that his surgery and subsequent recovery played a big role in this. Only on Friday did he sit up on his own, with no help or support, from his belly. He hasn't done it since. But now I know he can do it!!!...

Actually, now that I think about it, maybe he can stand, maybe he CAN walk....he's fooling us all, he just wants to be carried everywhere, FOREVER....

I'm on to you mister, from now on, it's going to be hard work in physio all the way

31 October 2009

I Heart You?

I know (slap on the wrist), it's been far too long.

I promise to be a better blogger
I promise to be a better blogger...
I promise to be a better blogger...... is that enough? Do I have to write it out 100 times?

Did you know, that there are currently over 100 children in Ireland on a waiting list for cardiac surgery. Did you know that 25 of those children URGENTLY need surgery. So what's the hold up? The surgeons are there, the surgical staff are waiting, even the theatre is open for business.

ICU beds.....they are at a premium in Crumlin hospital. There are only 8 ICU beds for those 100 children.

Eight

Now, the HSE are promising to make FOUR more ICU beds available in 18 months. We all know that those 25 children who need urgent surgeries can't wait 18 months, and I doubt the other 75 can either.
Crumlin is the only hospital where cardiac children can attend. They can't be transferred somewhere else, they can't decided to go to a private hospital for care. We claim that we care for and cherish our children in this country. I don't see any of that care, do you?

Meet Jake, his surgery was cancelled, 2 hours before he was due to be operated on.
"This is Jake he is 14 months old and has Down Syndrome. He also has a minor hole in his heart that he needs to have repaired by open heart surgery. Jake was due to have his surgery on October 5th 2009 in Crumlin Childrens Hospital, Dublin, Ireland. Jake did not have his surgery as there was no ICU bed available for his surgery because of the cut backs and sever shortage of funding. The HSE and the government don't seem to care about Jake or the other 150 children who are awaiting heart surgery at this very minute. These children are ticking time bombs who's hearts could give up at any minute and they will DIE before their time.
I know this because I am Jake's mother and i'm begging you to print off the pioster available on this website and send it to Mary Harney, Minister for Health and beg for the lives or our children. Imagine, in this day and age I am begging for my sons life and that all the other children made to suffer because of our so called leaders who seem to want to line there own pockets before worrying about the country's Health Service. My son needs to have his operation by the time he is 18 months old so he can have the full potential from it. We have 4 months left. We as parents are running out of time and fast. This is happening everyday and we are not alone."
Copied from Jake's website

Meet Joy who is fast running out of time.
"Our daughter Joy is awaiting open heart surgery and is on an indefinite waiting list. Her health is deteriorating daily and we are fighting for her and all the other children in her predicament. Funding needs to be made available for existing ICU departmen and for at least another theatre day. We are asking the governement and each person who cares, to push this situation to be fixed, and fixed it can be."
Copied from Joy's website.

Just two of the twenty five children who need help now.

You can see more of their stories here, here, here and here

The Frontline on RTE1 discussed this issue, which you can see here. Do you believe what the HSE are telling us, I don't... I don't have any faith in them any more.

30 August 2009

Hello Kitty

Last Tuesday, we adopted the newest member of the family. Can you guess which one it is?

The fluffy white one by the way!

I like having a pet, always had one. We had cats growing up, the Dad had dogs. There where also gerbils, a hamster called Spartacus, and now there is Marvin the cat. And what a good cat he is. He still needs to learn some of the ground rules of the house, like no cats aloud on counter-tops and tables, but he has been great with Cathal. Cathal loves him, one of the reasons we decided to get a pet was so that it might encourage Cathal to get moving across the floor, other than rolling. The first day Marvin was home, he was on the couch, Cathal was on the floor, and Cathal tried to pull himself up against the coffee table to get a look at the cat. There was about a centimetre of space between the floor and his bum for 20 seconds.....the Dad and I were floored.....that's the first time he has attempted any kind of pulling himself up. I think we made the right decision. Cathal is also very good at rubbing him, although he does get a little over excited and tends to then hit or grab the cat's skin and pull. And the cat just takes it.

Pheeeewww!

And where did we find such a fine cat I hear you ask?

From the DSPCA. Marvin was abandoned. His right front leg got broken some how, his family brought him to the vet, the vet fixed him up, and then the family would not collect him and refused to answer the phone. He was there 4 weeks before the vet brought him to the DSPCA. In these tough times, people just can't afford their pets, and it is happening more and more. Although I sympathise with his previous owners, I still don't understand how some one can do this. At least they brought him to get treatment, but still.

When Cathal was born, we should have just sent him back too, "Sorry, this ones got a messed up heart, he's gonna cost too much to fix, take him back".

When you take on a pet, you take them on for life....Marvin is only 2, not a very long life so far.

So, to recap, we have a son who has CHDs and downs syndrome, and a cat with a dodgy leg (he has a big limp) which will probably develop arthritis in his old age which won't be covered by pet insurance!!! What are we like?

But, Marvin is the right pet for us, his personality and temperment fits us and Cathal perfectly, it's what's inside that counts :-)

09 August 2009

A Very Interesting Talk Coming Up

I am very excited to tell you all about a very generous offer. Victor J Bishop, dad to Emmanuel aged 12, has offered to give a talk on "How to teach your toddler with DS to sight-read". Victor is visiting Ireland to attend the World Down Syndrome Congress with his son, who has been invited to play the violin and give a presentation. Victor taught his son to read from an early age, and has offered to impart his experience and advice to our little Baby/ Toddler and Parent group.
This talk will take place at 11am on Monday the 17th of August at the Carmelite Centre. It will take place during the regular group, so babies, toddlers, siblings, parents, early intervention staff.....EVERYONE....is more than welcome to join in.
I am going to take as many notes as I can in my scrawling handwriting and then copy them up here for anyone who can't make it. There will be tea and coffee and biscuits. Keep an eye on the left hand side for updates on the group and the next meeting date.

Now, on to more important stuff. We are just back from our holidays, Costa del Cork and Costa del Clare. Here are some of our favourite holiday snaps!