God Help Ye' ?

Bratty is doing her First Communion next week. A Big Deal in this formerly purely catholic country where education is provided primarily by the church and the rituals of communion and confirmation are part of the curriculum.
In autism world it means that you are taking part in a "normal" ritual, important to some folk.
Some folk including me. We are a mixed marriage. Mr Hammie is your typical lapsed catholic atheist and I was raised Church of England. I actually insisted on having both babies baptized catholic as I wanted them to be like their irish cousins and able to take part in family rituals if we moved to Ireland. Little did I know at the time that they would be as different from most of their cousins in as they could get; but I am still glad I recruited the atheist catholics in the family to be godparents in order to qualify for baptism in the one holy catholic and apostolic church.

Religion to me is a matter of karma. I mean that if we can use it to teach people to do the right thing by one another, then we all get to live in a world where people look after each other.
If that means worshipping a guy with a white beard or a Elephant in a Sari, or a man/woman in the lotus pose (the 2 Buddahs); Then I don't mind. Each to his own.

All you need is a belief in a higher power that looks over you and makes you think about the balance of the universe; so you can do the right thing and things will be just swell.

So I feel fully happy that my little Bratty is going to be a bride of christ next week, hopefully she will manage a bit of the host (I have negotiated to share the communion wafer with her) and won't blow out all the mass candles. Apart from that she just needs to look beautiful ( a cinch for Bratty) and stay in the church for the service so all the other kids with autism can have their turn.

For me the communion is about celebrating who Bratty is, and what she has overcome to get there. For everyone who I have invited to say "she is fabulous" and for me to say "Of course she is!" and mean it. To feel proud for a day; instead of anxious and worried and demented. To feel that she is fully part of something, as opposed to on the edge; or worse; disrupting it for everyone else.

Because it is an Autism Communion she will most certainly not be the wildest child there. And I am fully looking forward to the craic of what the more verbal kids will come up with on the day. We will be in good company so I hope all the parents can have a laugh. Faith and religion can and should be about community. We will be in our community on the day and can enjoy the differences our kids will bring to the occasion, perhaps even a little bit more than parents of typical kids who might get a bit caught up in the solemnity of it.

But there is something else that this special event makes me think of.
When the kids were baptized, I remember one of the priests saying that we were now part of a community of god, and that we could look forward to being involved and contributing to that community over the years. Things changed a little in the intervening years. My community is shaped by my kids autism and I do not attempt to break out of that, preferring the comfort zone of the "non normals" as I have explained in previous posts.
But I do sometimes think of what the church could be doing for me; and the countless other parents of children with special needs.
I was fortunate as a kid to attend a church with one of those "Father Trendies" that you seem to deride in modern Ireland. Now don't panic; it wasn't one of those happy clappy type Churches with people swooning in the aisles and talking in tongues. This fellow just decided that the "modern" church needed to be inclusive and started inviting everyone, man woman and child, to the full Sunday service. Crying babies were a sign of god's love.
I don't remember anyone with special needs in the congregation (I was 8) but I do remember being the first female "Queen of the Orient" in the Christmas play, while my skinny dark haired older sister wore a paper beard and played Jesus on Palm Sunday. Hey it was the 70's man, J.C. was IN!

These days the church has been discredited in Ireland and other countries to the point where many previously faithful catholics no longer attend. Sunday mass has become yet another means to show off possessions, like the latest designer fashions or your new SUV. Catholic schools have been proven by surveys to be the most Exclusive, actively discouraging pupils from ethnic or disadvantaged backgrounds or those with special needs; and asking them to Look Elsewhere, in order to maintain their "reputation" with fee paying families.

So what is the role of the clergy in this modern world? What is their relevance beyond the missions and collecting for the "black babies" or ministering to the homeless and indigent?

What can they offer to modern society, so caught up with the chase for standards of living, the pursuit of wealth and consumer accoutrement. What can they offer to their local middle class working communities beyond the chance to show off their new Hilfiger or Karen Millen at 9.30 mass?

The parent of a child with special needs experiences a challenge of faith, that compares to the unfairly bereaved or indeed any compassionate person in the wake of a national tragedy. If there is a god, why did they let this happen? And why did it happen to me?

They may turn away from their faith, if they ever had it, because they feel it has failed them. Or, they may feel that their child's high needs excludes them. They may feel ashamed or embarassed about the whooping and hollering of an excited 4 year old with autism or ADHD during prayers.
In the early stages as they contend with their own isolation and judgement from family and friends in the absence of diagnosis and support; they may have no one to mind their child while they attend weekly worship; and so become more isolated from the community themselves.

Well folks, I am here to tell you that you should not accept this. Religion has become a buyer's market and if the church wants to get the bums on seats then it is their turn to adapt and change to suit you!

Whatever your faith, religion should be about support and inclusion. In order to maintain relevance the ministry should be prepared to re-train and adapt to provide counselling and support to their congregation, whatever their circumstances; including a diagnosis of special needs. We are well aware of many church based organisations dedicated to the relief of poverty and social problems in the outer reaches of our community. This is worthy work and I congratulate them.
However, a diagnosis of special needs can strike anyone; rich or poor. And the aspect of personal mental health and well being is not being addressed by the state social and health services. When a nice middle class family that is trotting nicely with the right house in the right neighbourhood finds out that one of their 2.4 children is not going to follow the planned trajectory of school and social life that their parents planned?
Suddenly a soccer/g.a.a./rugger mom in her SUV has to become a "searching for speech or occupational therapy at any price mom" or an "ABA mom" looking for an appropriate intervention.
If they could afford Prada handbags and Jimmy Choos then they can forgo them and pay someone privately to work with their kids. But they cannot source the intervention for the soul that they and their family may need.
When we think of social workers we think of Teenage Mothers, or people on parole or probation who need the community supports to achieve normality in their lives.
When we think of those living above the line of "normal" we do not conceive of a connection with social or psychological support. Because there isn't one.
When these families hit a hump in the road, there is no natural safety net. The yummy mummies at the school gate will not be able to refer or advise on advanced toileting issues or learning disabilities, nor will the fellows on the golf course. When these families have a diagnosis; things can go to hell.
The parents can look for solace in drink or prescriptive drugs. They can go into denial. Dads may bury themselves in work excusing themselves from all issues to do with the disability with a 16 hour day. Mammies are even more isolated as a result. Some turn to anti depressants, some turn to wine and worse. Some just go to bed and some go into automatic mode. Going through the motions of dropping their kids off at each activity and then picking them up but never really engaging. And very few look for the help they really need. They grieve and cope in middle class respectable silence.
The services for these parents simply do not exist.

So what can the church or indeed mosque or temple do?
Organised religion can play a role here by learning to recognise the "fallen" and "missing" in their congregation; and by re-training to offer grief and family counselling to those who need. An active community preacher should be accessible enough to know when a child who came into the world with ten toes and ten fingers, isn't achieving the previous expectations. The ministry should be able to understand the grief and loss of potential that these parents are undergoing, and to support them in their journey into the world of stress and worry that follows. To allow them to grieve. We are many years on from the levels of child mortality that blighted the first half of last century. We can expect our pregnancies to progress, our children to be born alive and well. What we are not prepared for is the extras that come with some of those births. The extraordinary challenges faced by parents of children with developmental and chromosomal issues, and the stress of medical and behavioural interventions.
The true community preacher will reach out to these families and allow them to greive firstly, then to talk through their fears and dashed expectations, and finally be able to offer pro-active encouragement and practical help. A preacher who represents his community should know of the lonely grandmother who lives too far from her commuter belt or ex-pat grandkids; who would love the opportunity to support a young mother of a 3 year old autistic boy. Or the childless couple "still trying" with love to spare for a family of typically developing kids who miss out on normal life, when their disabled sibling has to go to hospital for yet another operation. An aunt in need of a neice to take shopping or an uncle with time to spare for a kick around.
There is no alternative figure in our communities to pull together the needy and the needed. Why can't we look to the clergy for this?
Like all good social enterprises it is a win win. The shunned and discredited dwindling church gets to become relavent; the disconnected and disabled get a connection, a support, a way to cope until they catch up.

Just a thought.



debbie said…
Hammie, i have an absolutely off topic question. i have been watching the series ballykissangel on netflix. is that a real village and is ireland really like that. that show makes me want to move there tomorrow!
Lisamaree said…
Yes, Totally 100% And your question is totally on topic.

The village is called Avoca and it is less than an hour from where I live.
But if you really want to understand Ireland you should watch an even better factually based series called "Father Ted". Google it, you will find it on Youtube for certain.
Careful Now.
Anonymous said…

I have been reading and enjoying your blog for a while and just wanted to say that I thought your comments about the Church and community and what could be done to offer more support for families of people with learning disabilities was marvellous and so spot-on. I work in a group home with five people, two of whom have autism and enjoy going to mass, although at times, sitting still for the length of time can be a problem. As you suggest, why can't things become more adaptable for people with difficulties, than the other way around and in turn, more inclusive. Some people can become so isolated; I have seen that too..when there are communities out there that could pull together, understand and support, thereby offering so many more opportunities for all types of families.
I hope your daughter has a wonderful Communion day:)

Lisamaree said…
Thankyou Lucie. And thanks for your feedback!
Ohhhh said…
As you know I live in the sticks and the congregation is full of tut tutting old biddies, no room for asd kids. This does not bother me asreligion is not my strong point. As a matter of fact it boggles me by times.

I know normally sane folks who bring their kids to Lourdes for the "cure". How mad is that! I mean faith is grand and all but lets not loose the run of ourselves here.

We didn't opt for the communion route with ds. At least I didn't feel like a hyprocate this time round. Why do it when he doesn't know what its all about.
Lisamaree said…
MY reasons are very selfish. We spend all our time talking about Bratty in terms of deficits. What therapy she isn't getting, what she cannot do, what milestones will not be reached and which doors are now closed. Her communion is a day to celebrate her and all the people who helped us get to this point. No tan or nails or white hummer. Just a walk up to the altar, a bit of the host and then home for a magnum of Moet with all the carers who Bratty has loved over the last 6 years and some onion bhajis hand made by my best friend who happens to be moslem. (I am still deciding whether to wear a tiara)
I don't think I am exploiting the church or being a hypocrite. I do believe in a higher power, or karma and the do unto others creed. And in our community, this ritual is a rite of passage which allows us to celebrate our child and enjoy the love. It also helps that Bratty is looking fabulous and has had some wins lately.
Now, back to that Tiara......

Thanks for the comments Ohhh.
Anonymous said…
HI Hammie,

I read your blog with great interest, I read all your posts on RC also! your's my inspriation, my dh dosnt use rc but every day ask what did hammie say!!!

anyhow, I'm born and bread Irish, but not Catholic, I belong to the Church of Jesus Christ of Latter Day Saints, some people might know us as Mormons but thats just a nicname we've been given over the years,you might know of 2 young men in your area in suits with a name badge on, they're our missionaries. I'm very active in my religion.

anyhow we are a christian religion also, and its a great tight nit community, when leaders in our church, (bishops, elders, and so forth) found out about our ds's CP diagnosis, we recieven endless phone calls house calls and interviews in which we we're offered councelling (free) financial help for therapies and equipment, practical help from sisters in our ward (parish) to help with physio and cooking and even cleaning.

We declined the help offered as we could see far worse off needing the resourses but are still offered regularly, they have heard we're taking our ds to brainwave abd have offered to pay, (we explained about dca and that there was no need)even when ds was in ICU for 4 months there wasnt a week went by that a sister (femal over 18) didnt bring us a meal or flowers or just send a text.

From reading your blog now I realise we are so so lucky to be members of such a great community.
Nick McGivney said…
Suffer the little children to come unto me. That phrase always got me, ever since my altar boy days in the 70s. No angst there btw, just a lot of good memories. But it took me afew decades to realise that 'suffer' actually meant 'Let' in good ole King James bible-speak. So Jesus (the archetypal surfer dude in my book. Ok, kinda desert-based, but surfer at heart.) actually was saying 'Quit yer whinging, let the kids be kids, and stop superimposing your need to perform like a middle-class seal for some misguided notion of equality with the neighbours onto your children, for My sake!'

That's my take on it anyhow. Jesus laughed a whole lot more than the pen pushers at Bibles 'r' Us let on, and every mass was kid-friendly. I absolutely ADORE the concept of Autism First HC, if only for the sheer fact that the parents can go 'Eff it, we al know what's what here, let's just RELAX!!!' I hope Bratty has/had an enormous whale of a time, and the rest of you too.

God bless

Lisamaree said…
Edelmax, I obviously chose the wrong religion for having a child with special needs. That is incredible the support you are offered. What isnt incredible is your reticence to accept the help believing there are others worse off. Please remember that is can be just as pleasureable to give as to recieve and by accepting you are rewarding the giver. I would hate to hear you were under extra stress and I am sure your church would feel the same.
When accepting help please remember that you will one day be totally on your feet and will be able to offer very qualified help and assistance to the next family that comes along. And understanding.
take Care. xx

Nick, thanks for that. How appropriate that you quote a peice of scripture that was "reinterpreted". We make such fools of ourselves by taking things the wrong way; and I am sure Jesus would be morto if he heard what people had made of his teachings.
I have always believed in Jesus Christ Superstar; here was a guy who was talking sense, gathering up too many fans and annoying the authorities. And his teachings then were completely reinterpreted too.
Surfer dude? More of an Eco warrior in my imagination, definitely wore hemp.
Thanks for the good wishes for the communion. Sure will be alright on the day!
Anonymous said…
Best of luck on Saturday to Bratty & all the Hammies. Kick your feet up, and may God bless Bratty on her special day.