26 June 2008

Chapter 7: Dealing with Downs

Finally, the heart is behind us for a while. He will still be going to see his cardiologist (still can't spell that word) every few months, ("Nope, still not magically healed up yet") and we still need to watch his breathing and make sure he doesn't go blue. Surgery is planned for about next March, when he is one, so we have a breather to get on with our lives. Let the games and fun begin.

Just before Cathal went back into hospital for the second time, we had started to get our thoughts together about this whole extra chromosome thing. We got the "Starter/ Beginners guide" pack from Down Syndrome Ireland, read everything we could get our hands on, ticked off the physical traits that Cathal has (folded tops of ears?check. Wibbly wobbly neck? check. Small mouth? check. Squishy up flattened cute as a button facial features? check, check and check). We started to come to terms with the very likely possibility of low IQ, permanent help from us or others, delayed learning, risk of ear infections, poor eyesight (although that one he will get from his Mammy, and poor hearing too), dead straight hair (bohoooo.....he dosen't have mammys curls) and all the other things that come with having 3 number 21 chromosomes. We got our act together in terms of all the tax stuff and the other entitlements.

Lets pause here to analyis the forms that you need to fill out. The DCA (Domicillary Care Alowance) has to be the most ridiculouse form I have ever seen in my life. I read it, the Dad read it, then we looked at each other....what??? How do we fill this out. We thought about it for a couple of weeks, then asked our social worker, from the hospital, her advice on it and finally got it done. Sent it in with two letters, one from Crumlin and one from the Coombe, both confriming Genetic Testings on Cathal stating that he has Trisomy 21. A few weeks later, I got a letter in the post to say, oops....you forgot to send in his birth cert. Now I don't remember any mention of a birth cert, but when I sent it in, Cathal was in hospital, so the ol' head was all over the place. The letter told me that I could POST the birth cert into my local health office, and they would copy it and then POST it back. I do not think so. I have heard too many horrer stories of things going missing. So, I bundled Cathal into the car seat, and off we zoomed down to the health office. Hand over certificate to appropriate person, and wait for it to be handed back. The girl was lovely, and there was lots of ohhhing and ahhing at Cathals lovliness.
"So, it will probably be a few months before you get a doctors appointment for Cathal to be assesed for the allowance"
What now??? It's genetic. Do they do another genetic test then and there? Do they examin him with a check list for down syndrome.
"Ah now wait, he's missing a feature, he has two folds in the palms of his hands like everyone else, not one!!!! I believe Cathal's Mammy, that you are trying to trick us!"
I mean honestly, if they have the paper work and letters, what is a HSE doctor's report going to add in our case. At least it will be back dated to his birth (che ching).

A work collegue of mine also has a son with downs, and was a huge help and gave us great advice. He sent us on loads of information (thank you Fin!). The thing is you don't know what to expect and you don't know what the next step will be. The Coombe had mentioned early intervension to us. We did not have a clue what this meant. When Cathal went for his second check in the Coombe, I asked about the early intervention, and found out that we had been referred to St John of Gods about four or five weeks prior. I rang them up to see what was happening and what we should do to get things rolling. I was put through to another lovely social worker, who will be Cathal's social worker from now on, and she explained the situation. They had actually discussed him a few days previously, and she was hoping to come out and see me at home. Sure, no problem, just need to hoover first.

So social worker M popped out, took a brief family history, where Mammy and the Dad work, how long we are together (8 long years...and no Aunty Deutschland M, no wedding in the near or distant future). Next step was that social worker M would report back, and we could all go in to visit the head of the Menni services.

Two weeks ago we had that meeting. All we wanted was for Cathal to get started in early intervention as soon as possible. And that's what we got. He started last Friday, it was like going to school. There were two other children in the early starters (0-3yrs) group last week. We sat in a circle and sang songs (I even remeber one, and some of the lámh signs). We listened to music and shook rattles. Then there was snacks and painting time for the two older children while Cathal got a bit of booby time and Mammy got to speak to the other Mammies with a lovely cup of tea. They are also downs mammies, and one heart condition mammy, so lots to talk about. I don't think Cathal understood what was going on, but the important thing is that he is in, and now he should be getting the best care and best start in life possible. I think that this group will probably become very important for me too, I'll be meeting other special needs parents, it's that support and 'I am not alone in this' feeing that will keep me sane over the next few years. School again tomorrow, can't wait.

Cathal is the youngest child they have had at 3 months of age. Maybe we are the exception, maybe a lot of other famillies wait to proccess the information and diagnosis. But we have always felt that he is our boy, no matter what, and we want the best. If that means he starts early intervention very early, so be it, the better his start in life. We think forward, not back. Nothing we can do now can change who he is.

Cathal would not be Cathal without that extra chromosme. He would not be the beautifull baby he is today.

2 comments:

Hammie said...

I'm so glad to hear you are getting some guidance and support in the early stages. And getting the chance to meet other parents too, very important.
The DCA will cause you much merriment in the coming years; that's the best way to look at it but as you say, it will be worth waiting for. Be sure to buy yourself something yummy when you get it; I reccommend Eve Lom cleanser with the muslin cleansing cloth and massage routine.
Spend 5 minutes every evening massaging it in and thinking about what a great Mum you are to have your shit together so early; to be so positive and to be inspiring every one else.
Good woman yerself. (Cathal aint half bad either)
xx

Anonymous said...

hi cathal's mammy, i've been overwhelmed while reading Cathal's big adventure. Not just for the way in which it has been written (excellent) but for the detail and emotion throughout. For someone who may one day soon embark on 'being in the family way' (fingers crossed) it has been a real eye opener. No one knows what's around the next corner in life. I do plan to go to Italy but I may end up in Holland etc etc!!
I think you've been incredibly brave and selfless throughout your journey and i admire you and the daddy for this. I think it's great that you realise it's ok to have time to yourself, get your sleep, pamper yourself because without you, cathal won't progress as well as he has been doing so far. It's obvious he is a little fighter, the apple didn't fall far from the tree in that respect!
i wish you tonnes of health and luck for the years ahead, i've no doubt cathal will continue to go from strenth to strenth and he'll contradict all doctors 'negative' opinions.

best wishes,
from a colleague of Nan P (the frenchie !!)