30 October 2008

Is He Suffering??

According to TV3, he is. There I was, watching the news this evening, the headline report "The government does another u-turn on the budget"....horah! However, my joy was dampened slightly. During the course of the report, they showed a woman and photos of her daughter, and the report spoke over these images, " ....., who's daughter suffers from down syndrome...."

YES, that's right, every person who has down syndrome is suffering from some kind of dibilitating disease. I imediatly checked Cathal over, he has a cough and a sore throat. I've taken this to be a sign of his suffering, and I've quarintined him so that he can't infect anyone else with extra random chromosomes. I URGE YOU TO DO THE SAME!!!

Honestly, who let that one slip by? Surely someone who works in TV3 has a relative, friend or knows a friend of a friend who has a disability. Surley someone could have spotted this gross misuse of language. I don't know. It just throws the "ahh, god bless him" back in your face. So I've written to them, expressing my concerns....we'll see what comes of it.

On a lighter note, we had the DCA assesment yesterday. After waiting 6 months, we had a 10 minute appointment. We all met a lovely doctor for about 10 minutes, who then told us we that the DCA is automatic. Well, why on earth did we need to wait 6 months for a 10 minute appointment. There you go, another example of a waste of time and money by the HSE. Oh dear, well at least it will all be backdated, so I'm thinking of it like a savings account.

I have to ask, what next? Answers on the back of a postcard addressed to "the boy suffering from down syndrome" if you please.

25 October 2008

Happy Halloween


Thank you so so so much to South Dublin Dad, South Dublin Mam and Ava for finding the costume. He was a big hit at school yesterday

16 October 2008

Know Your Child's Rights

Last Friday, the Ombudsman for Children, Emily Logan, came to John of Gods in Islandbridge for a bit of a chat. Well, my eyes were opened. Not only do we have an Ombudsman for Children in this country, we have some one who is prepared to fight for the rights of our children, especially our special children (and yes, I know, all children are special). It was a wonderfull talk, and unfortunatly I can't recall it word for word, or even attempt to transcibe most of the content here, there is one underlying feeling I'd like to share with you all.

If you have hit a brick wall. If you feel that your childs right to education, medical treatment, housing, and anything else listed on the UN Convention on the Rights of the Child, has been comprimised in any way, go to Emily. If you have exausted all local options, the principal of the school, the GP, the consultant, the HSE, the councillor, the TD (and any one else who will listen).....go to Emily. That's what she is there for, to help you fight for that Special Needs Assistant, that vital operation and ICU bed, that home especaily adapted to your childs needs.

So check out their website, bookmark it, know that there is hope, there is some one out there who can compel others to do what is best for your child.

Know Your Child's Rights

07 October 2008

Feelin' the love

Now, I'm not into chain mails, or any of these if you don't send this on to 57 people your tomato plants will die and your apple tree shall be fruitless. When ever I get them, I tend to ignore them....delete......DELETE

But how can I resist.....Hammie, Maman (Nan P) you shouldn't have....

x 2

So here goes, I'm to nominate 7 others. I'm not going to dish out the rules (I'm such a rebel), but I am going to let those who I nominate to do what they will, and if they want to keep spreading the love, then go ahead. And these blogs are all ones that I check on a daily basis, ones that I really do love, and you can find them all on the left hand side.

Numbero Uno: Hammie, Hammie, Hammie. The first blog I read, and one of the two that inspired me to get all creative and start my own. Your honesty is refreshing, you tell it as it is. Your such an insperational person, and I only hope that I can be half the woman you are.

Second: Nick, you have a great way with words, and your blog also got me going to write. Most of all, you get this award for all the support in the early days, for all the advice and information, but especially for sharing Jacobs early days with me through your blog, and assuring both of us (the Dad and I) that we were not alone.

Three: Sesame, internet addicted, vomiting bug fighting super mammy of four, living in her house on the hill (sounds like a nursery rhyme). I love reading about your life and your kids adventures (do I sound like a stalker now?) All us special mammies need to sick together, support one another, make each other laugh from time to time, and that's what you do.

Quatrième: And now for a bit of nepetism, Nan P. Ahh, you know, sure I had to nominate you (I'll never here the end of it if I don't :-) ). No, honestly, your support in Cathal's life has been fantastic, as has all the famillies, both sides. And once he is old enough, you can babysit him for whole weekends if you like....in your place.....(see, booking her already)

5th & 6th: Noah and Ava Cathal's Thursday buddies, both have wonderful parents who have decided to blog about their babies to share the ups and downs of having children with downs. Noah's dad's musings pre baby I think are so ensightfull and touching, they made me shed a little tear, and before Noah was born and we had even met him, I was constantly checking back for news. Ava's parents have such a great sence of humour (check out the passport photo) her blog just gives you a lift when you need it. Loving the holiday picks.

Seacht: And last but not least, Eadaoin. I went to college with Eadaoin (my second stint), and she actually worked where I work for a while too, before embarking on her travels. I love reading about what she is up to, the work she is doing, the amazing places she is visiting. She is doing such wonderfull work, looking after and helping lots of children with special needs who would otherwise be lost and forgotten. This is something I don't think I would have the courage to do (says the mammy of a baby with special needs!), to leave the comfort of home, and travel to a strange country, only to be attacked by giant flying coakroaches.

So these are my seven, do what you will with it my pretties!!!

05 October 2008

Can He Hear?

Last Wednesday, we had a busy day, Cathal was pulled and proded and made to show off all his skills and fire eating skills. The day before, we got a call from our public health nurse (who we've met only once), to be told that Cathal was due his 7 month hearing test. So even though we were due the same day at the Coombe for the usual check ups, we walked down to the clinic, in the freezing wind. Cathal was all wrapped up in a hat, a blanket and his big cousins beautiful winter coat, you couldn't even see him in the buggy!!!!
Anyway, we got in to see a different public health nurse to the one who called the day before. She proceded to do the regular checks for a 7 month old:

  • Asking if he reached for toys. Yes he does that, she then put a clear boring plastic rattle on the table in front of him to see if he would grab it. He just looked at it...."Well, what am I supposed to do with that?"
  • She then sat him up, not very well, to see if he can sit up. Yes he can do that, if you position him well and let him find his centre. He of course started to tilt a bit...
  • He was attentive to her, watched her. "Oh, you must play with him all the time, you can really see that in him". I do, I do!
  • His weight, length and head circumference was checked, (7.59kg, 68cm, 44cm....hmmmmm, are you sure?)
Then she informed me she needed to get another nurse to help with the hearing test. After about 3-4 minutes, back she came with another nurse in tow. I'll pause here to tell you what I think happened outside the room. By the way, I hadn't mentioned any of Cathal's little extras.

Nurse A: "I've got a woman in there with a little baby, and I think he has down syndrome."
Nurse B: "Really?"
Nurse A: "Yes, and I don't think she knows, she didn't say anything about it."
Nurse B: "Oh my goodness, bless her!"
Nurse A: "What will we do?"
Nurse B: "I'll take a look when we go in, and I'll chat to her."
Nurse A: "Right so, god bless the little fella"

So in they both came, nurse B takes a good look at him, "Isn't he lovely, he's gorgeous". Glowing mammy holding him, beaming with pride.
Nurse B: "You know, there used to be an activity group up in such and such a place, run by such and such a person, and you know, it was for all babies, not just for...."
No. 1 Mammy with a slightly dropped jaw: "He already attends John of Gods, and he's in early intervention, there's a whole rake of people supporting him thanks."
Nurse B: "That's wonderful"
Nurse A, slight look of relief on her face: "Wonderful"
Nurse B: "He's great though, really great, you must play with him and talk to him all the time!!"

Well, what else would I do all day with him. They must see a lot of babies who are just left in a corner for the day with no stimulation.

Anyway, finally the test started. I was sitting in the middle of the room with Cathal in front of me on the edge of my lap. Nurse B stood in front of him while nurse A hid behind me. Nurse B made a funny noise and went:
while making a funny face, then she stopped suddenly, crossed her arms and tilted her head to the side. He's looking at her going,
"What the hell just happened?"
Nurse A in the meantime leaned over my right shoulder and started to whisper at Cathal,
"Pshwshwsh...pshwshwsh...Cathal Cathal Cathal"
And he turned to face her,
Nurse B, made her funny nosies again infront of him....
"Ohhh, she did it again"
Nurse A repeated the whispering on his left. By this stage though, he'd cop'd on and he knows that the woman infront of him is far more entertaining, so he didn't pay a blind notice to the other one.

So they swithed places and started again. This time he just ignored them completly.
"Bored now!"

Then there was the, "Well, I'm sure he is fine, he can hear on the right anyway". I went on to explain that I already know he can hear, due to the magical test they did in Crumlin. "Oh, that's wonderfull, we'll repeat this test anyway in a couple of months". "He's great". "Bless him".

To say I had to try and contain the laughter is an understatment. Can't wait for the next one!

Just a note on the weight, length and head measurments, in the Coombe that same afternoon, they were all taken, and there may be a few discrepancies. Lets study them shall we?

Public Health Nurse Coombe
Weight: 7.59kg
Height: 68cm
Head: 44cm

Weight: 7.4kg
Height: 70cm
Head: 41.5cm

I am more inclind to believe the Coombe to be honest. So to all those breastfeeding mammies who are told that their baby is too light and needs to be topped up, or even put on formula, because just look at that weight, don't do it. All scales are different, different times of the day appear to produce different results, judge your baby, not the numbers.

Regarding the Coombe visit, he's doing very well, growing perfectly according to the down syndrome growth chart, but I knew that anyway.