30 August 2008

A Bit of a Ramble....Forgive me

When our little bundles of joys are born, they don't come with instructions. There is no Beginners Guide to Babies

Cry A= Hungry
Cry B= Thirsty
Cry C= I am so bored I am just going to keep shouting at you until you do something to entertain me

You are given the minimum training in the manic days after the birth.

  • Here is how to bath your baby without making him swallow half the contents of the bath.
  • Here is how you change a nappy without getting pee'd on.
  • Here is how to feed your baby (well in the case of breast feeding, the teaching is few and far between, but that's a whole different post).

So when you are handed your baby, and suddenly you are told that something is not quiet right, no one seems to want to explain to you the true meaning of your child's specialness. Fair enough, Cathal was sent up to Crumlin fairly soon after he was born, and we were not going to hang around for informtion. In Crumlin they were concerned about his heart, not his down syndrome, so no info there. Because half the babies on the heart ward had down syndrome, there are lots of Introduction to Down Syndrome "Welcome" Packs, supplied by DSI. This is how we got our introduction to exactly what down syndrome was. That and the wonderfull world wide web (where would we be without it!!). No one ever explained that he might have problems hearing, seeing, speaking, walking, crawling, ear infections, chest problems, more colds, thyroid problems, and so on and on and on and on........
We have found these things out over time, speaking to other parents, reading the books, the internet, anything we can get our hands on. There is no leaflet "What to expect for the next 10 years". I know that we can never predict what can happen, but maybe there should be a little something, like a person in each childrens hospital and maternity hospital who can sit down with the terrifed parents and explain things, what this syndrome is all about. It's taken so long to gleam all the information we've learned, and still I can't shake the feeling that we've been left in the dark. Maybe this is down to the way all the medical tests have been organised. Mystery appointments come through the letter box. As it happens, I have only recently found out that Cathal's original pedeatrician in the Coombe refered him to have his eyes and ears checked. Bloods are taken every time he goes to the baby clinic to check his thyroid, and again it took a couple of visits to find out why.

Should anything else be done for him? I really don't know.

The referal system for early intervention was never explained, or even where he was being refered to, again, left in the dark about my son. This could be down to poor comunication, lack of Mammy being able to think on her feet and ask the appropriate questions. It's still a little hazy as to what will happen when Cathal is a year and the Coombe will not look after his general health. We should be refered to someone else to take over the job, but this process is also a litlle unclear.

That's just the medical side, what about all those benifits and state aids that could help ease the medical finances? You are certainly not given a list of those. Should the Department of Health and Children or the Department of Social and Family Affairs not direct you to what help there is available. All it would take is a leaflet outlining all the benifits available to you, distributed in the childrens hospitals, in the maternity hospital, the socail workers. There are so many people who don't know what they are entitled to, for example, did you know that if your special child is not potty trained by age 3, you are entitled to free nappies....that one slipped you by did it? I'm not surprised. It's like drawing blood from a stone.

So you apply for all your bits and pieces to help make ends meet while you drive your precious cargo from physio to the cardieologist to early starters to anything else you can think of that might help in any way to make sure your baby reaches his full potential. And you agonise over whether you should go public or private and hope you can pay for it all, because you know that your baby will probably get better medical treatment if you go private. At the moment, we are private for Cathal's heart, we have helath insurance, but we go public for everyhting else, in the hope that nothing else crops up. If something does, by god we will go private with that too. We'll scrimp and save if we have to, but in the meantime I've applied for all we can apply for (I hope).

Recently, I sent in the medical card application form, however I foolishly filled it in Cathal's name and "modified" the form to include all Mammy and the Dad's financial details. Letter number one arrived:
"Dear Mr. Cathal,
Please forward you most recent payslip, travel to work expenses, loan payment details."

Well obviously because Cathal is 5 months old, he dosen't work, but they seem to have failed to look at his date of birth, and the 101 documents I attached with the form. So I walked down to the office with Cahal in tow.
"Hello, this is Cathal in the buggy, but all our info is with the form."
"Oh, well look at that, so it is. But you know you can add x and y if you like."
"I don't think I need it, Cathal should get this card because HE is entitled to it, due to his genetic and medical conditions you see."
"Oh no, it's all based on the finances"

Sigh. I could have told them we won't qualify under that. So I brought down documents x and y a week later, only to get in the post another letter, a few days later, asking for my most recent payslip, even though I had explained twice, in person, that my most recent payslip is dated January because I am on maternity leave. I rang them, and expalined this again. Now I am psyching myself up for the refusal letter that I know will arrive any day.

Why do they make it so hard? Why when I am already fighting they make me fight even more? His conditions are there in black and white, all typed out and signed off in triplicate from two hospitals, and yet they insist I take the long, round about way to get what Cathal is entiteled too.

The sad thing is, this is only the begining, there are a lot more fights to come, and already I feel tired.

Luckily, there are some people very willing and able to help. When Cathal came home after his operation in April, he was put on two very expensive drugs. The local chemist would not take payment for these drugs until we were all signed up on the same drugs payment card. Again, I sent in the application, but heard nothing back. I kept going back, trying to pay, but they would have none of it. Last week, I had to order another bottle of one of the drugs, and again, they would not take payment. Instead, they made me fill in an emergency form, and I payed for everything, including some tablets for the Dad under the same month, so in total, three bottles of Cathal's medicine and the Dads medicine cost €90, when in reality, I think it would have cost €300. Thank goodness for the good people out there.

The moral of this story is support your local chemist, none of those big chain ones. The family run chemist on the corner is the one that will look after you.


Nick McGivney said...

times the rambling posts are the ones that do the good stuff. This one is great. I echo everything you say, and I expect to have to fight tooth and nail for everything. I don't ever expect any single altruistic resource out there to magically materialise to help us, and I thank God for bloggers, because what would we have done in 1976? Government is imperfect, state bodies are imperfect, all the faceless bureaucracy you have to square up to is imperfect... Having said that, you will find good people there too, if you can manage to connect at a human level. I've been heartened with a lot of my HSE dealings, I have to say, because I managed to connect at a first-name level. It's just too damn easy to fall between the cracks. We have to be ever-vigilant and share as much info as we can. You're doing a good job at that already, Mammy, so keep going. Great point about the chemist. Get them a box of chocs.

Lisamaree said...

I wrote a huge big comment at 6am (another bad night)and zapped it as it was too epic. Yes, the citizen sector is way more effective than the public sector in informing of rights. There's a macro for you and Nick to put together when you are ready.
Don't be afraid to contact Jack and Jill foundation for help with information on your rights. They fought many a battle that has helped all of us with DCA etc.
keep applying for EVERTHING, regardless of what begrudgers tell you. I have a roof over my head thanks to a parent at a support group who told me to apply for carers, when everyone else said "don't bother"
The backdating got us our deposit and loans>
Stay in there.
ps. my pharmacist is a honey too!

Sesame said...

I am nodding in agreement with everything you are saying..If there's one thing I learned from Hammie & the RC's it's to apply for everything going..at worst it will be refused..at best backdated.
I was lucky enough in that regard that the support group I joined had a talk on entitlements the first night I went and an advocacy worker helped me fill out DCA. In my opinion there should be an advocacy worker in every county fighting the battles for the parents of these special little kids and informing parents of their entitlements..it's hard enough keeping up with hosp appts without having to fights with dept heads. I knew pretty much all about my entitlements before early intervention social worker told me and even some of the entitlements she hid from me. But then you've learned your lesson well..I note you have all the necessary links on your blogroll..good post Cathal's ma