Monday, February 15, 2010

Sometimes Autism sucks!

Recently we decided that Button would not be making his First Communion this year (or any other year, in all probability). It wasn't exactly a tough decision, but it did open up a bit of a Pandora's Box of emotions that I had thought had been firmly laid to rest.

As I have mentioned before, I am not particularly religious. I believe in a higher power, but I'm not a huge fan of organised religion. I think if you're a good person and treat others with respect and dignity, well, that should be enough for anyone's God. But Communion is more than a religious event. it's what 8 year old boys like Button should be doing! A rite of passage, that was part of my vision for the future for him in the days, months and years before he came home. I have very happy memories of my communion day, and quite simply I wanted the same for him.

In the run up to a child's First Communion, there are 5 or 6 special masses arranged where the children all sit together and do the readings and prayers of the faithful. Two weeks ago we went off to mass, fully prepared with his favourite small toys, sweets and the promise of the iTouch for being quiet. It was a disaster. He was poking the lady beside us, shouting and trying to escape from his seat. After about 10 minutes (that felt like 10 hours) we decided enough was enough and made a hasty retreat to the car, with Button kicking and hitting various members of the congregation as he made his way up the aisle.

As I sat in the car waiting for Mr Taz and Belle, I just knew that Button was not ready for this. He simply cannot cope with crowds, and having to sit still for any length of time. And suddenly I was sobbing, as it hit me just how much his autism affects him and us as a family.

We go through our daily life thinking that Button is doing great (which he is), basking in the lovely comments that have been coming home in his Book recently and loving his funny, quirky nature. We live in a little autism bubble. This is our world and we know no different. As Belle grows up, we're getting glimpses of the "other world", but for the main part we potter along thinking everything is going to plan.

Then Wham! one day something hits you, and you realise that you're not as ahead of the game as you think you are. The difference between Button and his peers is remarkable. I watched those little boys and girls sitting quietly with just the odd giggle and murmur of chat. Their hands piously joined in complete innocence and joy, fully aware of the importance of the day they were preparing for, and my heart broke.

I'm generally a very optimistic, positive person. but that day I grieved for all the things Button will never enjoy. Birthday parties, trips to museums, pantomimes, playing football on the street with his mates, these things that you dream about and imagine your little boy doing. They are not part of his life, and in all probability never will be. It sucks.

He is the happiest, most innocent little soul I have ever known. He doesn't care one bit about those things. And 99% of the time, neither do I. I am not at all bothered about the actual communion, it's just a very stark reminder that life with Button is always going to be different from how we had pictured it to be.


  1. I hate those days tara. You always feel like you've been whacked back to the beginning.
    What keeps me happy is that hes happy and doesnt care about them things, so hes not missing out, im just missing out on seeing it. It would be a million times harder if he did understand and just couldnt physically take part.
    And never say never. Look at all the Autie daddies, I bet their parents thought the same and now theyre married with kids chatting to us online every night :-)
    Not much help now i know but still makes you smile. And nothing to say he wont be able for it next year. Some churches even do private communions for kids who arent able for the big one.

  2. I know where you are coming from and my heart is right there with you. Griffin has no interest in social events either and it does break my heart at times too. But then I gather myself up and move on and realize that there are other things that he does that makes him happy............oh what the hell, it just breaks my heart! Just as you said, it hurts to know that there are things that they will never take part in that other kids do. Or at least we think that they will never care about. It sure does seem so at this point in time though doesn't it?

    I am not a religious person either so that stuff isn't important to me either but Griffin doesn't have interest in even socializing at all on any level. There were a few times he shown slight glimpses of it but it didn't last very long. Gosh it hurts though, I just know what you mean!!!

  3. My eldest is making his communion this year and we have had several of those masses already. Like Button, HRH can't handle mass so hasn't been attending to see his big brother and we have made arrangements for someone to mind him on the big day. I understand where you are coming from and will probably face the same situation in a few years myself. We too have an autism bubble and sometimes it pops, more and more often these days as my daughter progresses and shows us exactly what problems HRH has. Its difficult. A big hug for all of you, wish I could say something more useful than 'I get it' but I do. Jen xxx

  4. Ah taz its awful when something comes to remind us that our child is different than everyone elses, it rips the heart out of your chest and throws it on the floor and stamps all over it and yes it sucks!! Just keep in mind what a fantastic job both you and he are doing and never say never on anything, they surprise you when you least expect them too:) Our little man lives in a happy bubble most of the time and doesn't see that he is different at all and thankgod for it.

  5. @claire - how did someone so young get so wise? you're an inspiration to me hun xx
    @Lora - it's crap sometimes Lora, but so good to know i have friends like you guys who get it
    @Jen - xx

  6. Andra - i'm so grateful that Button doesn't care about being different, he's completely happy and that's the most important thing in the world xx

  7. hugs , it will get better xxxxx

    i know what you mean and i too will have these days and have had them, but we will have eachother to get us through it xxxxxxxxxx

  8. yep Autism sucks!!! understand the grieving process bit taz, same as when it was Luke`s turn & he didnt make it xxx

  9. We potter along in our blissful little bubble too, and I rarely have those moments anymore. But...just the other day I was visiting my brother and his little girl (aged 8 whole months)is pointing, playing with toys and interacting in a way that Bob never will.
    It didn't make me just made me wonder how I couldn't see Bob's red flags sooner.
    You need a big hug...and I find that a new lancome foundation or some mascara helps too lol XXX

  10. Ahh Taz...that's hard. I can understand what you're saying and I know you're happy for him but it's so hard when you get these little reminders. Claire's right though....there may be churches, or AUtism Units/ Special schools with smaller Groups making their Holy Communion. Could be an option for you next year if it's what you want?? Should be no problem to link up with them. A local Church of Ireland school sends some Holy Communion children over to our school for instruction each year.
    ((xx)) Hugs! Jazzy

  11. Hi Taz, you are so right, we get optimistic with the progress our children are making(which is great) and then are brought crashing back down to earth when we see how far behind their peers they are. It's not easy when this happens. Allow yourself a moment to reflect on this and then try and remember all the progress which has been made in the past month or year, and look forward to further progress in the future. Who knows, maybe this time next year........
    You have beautifully captured these feelings which I think we all have encountered, excellent blog.

  12. Taz..I hear ya.. Matthews older brother makes his communion this year and we attempted mass last weekend which was something of a disaster, although the old lady sitting next to me sweetly said (whilst no doubt meaning the opposite) I did well handling Matthew but its in the back of my mind that I cant see how Matthew will ever be able to take part like his siblings or peers and then that opens up some even bigger questions that mean, does it even matter?

    It probably wont matter to him, the people that will object if he doesnt make his communion will be family through their expectations but its Matthew thats important.

  13. It's perfectly natural to grieve at these times.
    But why should Button have to conform to the traditional aspects of Mass/Communion?
    Jesus was supposed to love all of us, equally (he was cool like that??) so why can't the tradition of mass/communion be adapted?

    In The Old School - which was 100% Autism, the school ran an adapted program and used the church next door. Father Eddie was brilliant with the kids and didn't blink an eye when "the host" was discreetly moved from one hand to the other.
    His blessing was enough for him.

    In the New School we have a consecrated chapel from the old convent which is a classroom for most of the year. Last year they had a communion conducted in LAMH - with a visiting priest. His words "there is god's work in this school" .

    So if you wanted to join up with the Abacas crowd and find a friendly church or chapel, could be possible to create an adaptive version of becoming one of god's children.
    I think they could use the new recruits! xx

  14. Thanks so much for all the lovely supportive comments. I'm sure there is a way around it, but to be honest, it's not that important to us. His school have been very supportive and understanding, but agree he's not ready. He'd probably never set foot in a church again. The good Lord that I believe in understands, and is up there saying "Feck it Taz, you're grand" xx

  15. But ... what happens at senior school level if they're supposed to have done communion / confirmation?

  16. he'll probably always be in an Autism Unit, Sara so shouldn't be a problem xx

  17. Very sad reading this - not had this exact experience, but I know what it's like when your life with your kids isn't the one you had planned. As you say, he is happy, and that is something so important to hang onto x

  18. Only catching up on the blogs now Taz. I think that Claires comment says it all really. Its never easy to get a whack moment though (((hugs))) xxx

  19. Getting to this discussion late I know but just an idea to share ... our NSLM did make his Communion in his old school - where they used a little chapel on site and the kids could behave or not behave as much as they liked. But that was three years ago when he was 8 and I now regret it as the whole thing totally went over his head and meant absolutely nothing to him. But we had felt pressurised into doing it as his sister had made her Communion the year before. We would and should have left it until he was older - coming up to 12 this summer he would have been much better able to cope with the whole thing.

    Even with his assistance dog now, he still doesn't like or cope well with Mass and crowded churches, so we have given up going to Sunday mass regularly. However religion is important to us and him in that he loves lighting candles and has some idea of heaven and saying prayers so we have got very friendly with our local priest who allows him into the church when no-one else is around, gets candles for us and always has time for a little chat or prayer with the NSLM. It works well for us as I feel he's getting a bit of religion and if I had of thought of it four years ago when we pushed him into making his Communion with his school pals - what we should have done with just asked the priest to do a little ceremony with us only.

    Anyway, just an idea but the most important thing as you said, is that your little man is happy so why push him into things he won't enjoy!

  20. I hear you. I have friends with kids about the same age and hate hearing about stuff they are doing that I know my son can't be a part of yet, like Soccer. He just would not get that.

  21. Interesting and useful information that you have provided here on your page.So great to find this page.

    autism dublin & HSE autism