‘I’m scared of my own autistic child’ – BBC News

May 30, 2018 § 1 Comment

 

I am so glad to see this video.  On one hand, it is horrible – but it was our life for so long.   I find it so sad that the one mom who had placed her child in residential services didn’t want to be shown on screen.  It is hard – you don’t want to be the parent who gave up and even though you want to think that people will be understanding there are always those people who will say “I could never do that.”

Memory

December 2, 2009 § 2 Comments

My grandmother has been in the hospital for almost two weeks now.  She had and obstructed bowel that had to be surgically repaired, then the incision wasn’t healing properly and last night she had to have it operated on again to repair a small hole that was developing in her abdominal wall.   I have spent a good deal of time in the hospital  just hanging out with her.  She suffers from Alzheimer’s/dementia and is 86 years old.

Last month I was reading  A Child Called Noah and A Client Called Noah by Josh Greenfeld, which describes his family’s struggles dealing with their autistic son.  One of the lines that stick with me was Greenfeld’s description of his feelings with Noah.  He describes how, with a normal child when you do things together, there is the delicious feeling that one is storing up memories that will be pulled out in future years and enjoyed again and again.  With Noah there was not that feeling for Mr Greenfeld.  He felt that those things that happened with Noah were felting and vanished, there would be no echo of memory in the future of good times with a beloved father.  Not knowing Noah it is hard to say how accurate that view is, I know with Rachel, who is roughly at the same “place” on the autism scale as Noah, it is not that case that she doesn’t remember, it is just that time seems somehow less anchored for her.  Her lack of language doesn’t equal an inability to recall events, enjoy the moment or even anticipate something she desires, it just makes it more difficult for her to express those abstractions of memory, desire and hope.

It is very easy, since Rachel’s experience of time and events is somewhat “off” to say things like “Well, we will do Rachel’s birthday on Saturday because she doesn’t get that the 10th not the 14th is her birthday.”   And this is true.  Rachel is more than happy to celebrate a birthday or a holiday on an alternate day.  Her sense of anticipation doesn’t extend to checking the calendar and as long as cake is eaten, candles are lit and “Happy birthday” is sung the actual day doesn’t matter so much.  But her inability to anchor the memory or talk about it later doesn’t rob the event of significance.   It is still important.  A fact testified to by the way that Rachel is slave to routine, there must be cake eaten, candles lit and “Happy Birthday” sung in order for it to be a “Birthday.”  Rachel is very much a creature of the moment.  I hope that someday Rachel and I will meet in Heaven and share what all these things meant to us both.

My grandmother’s memories have lost their anchor.  She doesn’t know if it is 1958, 1985 or 2002.  She remembers people and relationships but there is no timeline.  For her it is perfectly sensible that she is staying with neighbors in the town she left in 1968 while talking to me about my daughter born in 2001. Her short term memory is most horribly effected.  She will not remember this evening that I was with her last night, she will be just as impressed with the sweater I am knitting for Hannah as she was the last 12 times she saw it and she will not remember what her surgery was for, how long she will need to recover or where she will go once she is discharged – we will talk about those things every 45 minutes or so.

If no one familiar is with her my grandmother not only loses her sense of time, but she seems to lose much more.  Paranoia and fear set in with the constant parade of the unfamiliar. The nurse has no place in her long term memory and with no short term memory granny has no way of placing the hospital staff into her current experience.  The staff is more than strangers, they are people who seem like they should be familiar, they call her by name and know details about her life, yet granny has no memory of having seen them before – this makes them seem threatening.  Especially in the evening when coupled with “sun-downing”  this lack of anything familiar aggravates the  “normal” emotional effects of Alzheimer’s and granny spirals down into a paranoid, depressed place where everyone loved and familiar has abandoned her and left her alone in a strange fog of unconnected experience. In the morning though the terror of the night before is gone, lost and unconnected to any memory.

It is very tempting  to say it doesn’t matter if someone is there or not because she will not remember.  But is memory the judge of what is important or does the importance of our actions lie in the moment as experienced?  Duty, that sense that she is my grandmother and I must be there for her, gives me a firm kick and says,  “go sit with her tonight because being there is what is important”.   Being there gives me a sense of importance in a way, a feeling that I am doing something worthwhile and somewhat noble.  It allows me to work through the complicated issues with my mother – I can very clearly see that it isn’t “just me” that falls second or third on her priorities, but  all relationships fall somewhat lower than prime in her priority list — where career is number one — and I can comfort myself, polish my somewhat bent halo, and note well and again that I am not doing what mom does.    I can’t help but  remember reading in psychology the perverse theory that all good things we do are in fact, no matter how unpleasant they might seem, actually attempts to gratify some internal need.  The martyr  proves their faith and fulfills their hopes in God even to death;  death is in fact more palatable than forsaking a faith in which they have invested so much of their self-concept.   C.S. Lewis muses on the “mother” in “The Great Divorce” where he speaks of the danger of a “mother-love” that becomes its own idol, the mother who loves through a sense of possession – that the child she claims to want only the best for becomes an expression of her own desire to feel needed, wanted and loved.

So, being human my motives aren’t pure, they cant be.   How can I ever completely separate the corporal work of mercy, visiting the sick,  from wondering if sitting with my grandmother is as much about storing up “karma”, setting up an example and expectation in my children that this is what family does? Will they internalize what the see me doing so that, at some point in the future, they will feel duty kicking them to come spend time with their aged mother?  Part of me doesn’t want to disappoint my grandfather, who passed away in 1994  – does he worry about his “little-bride” all alone at night? Is he glad that I am there?   Do angels sit with me and wait in this strange place, not quite in the Valley of Death but approaching it?  Will she look back when she is on the other side and think well of me?  While I am definitely there for her, I am also there for me and the hope that what I do is pleasing to God, my grandfather, my children and to the person I am meant to be but am not quite yet.

In the end none of my internal wanderings and even struggles  really matters — what matters is the current moment and the experience that we all are going through right now.   It doesn’t matter if she remembers last night, or Sunday, or who her nurse is or even where or when she is.  Granny needs a familiar face, a hand to hold, someone to hunt down a cup of ice or the nurse or adjust a pillow — most of all she needs someone to anchor her to her own experience.   Experience is more important in this sense than memory, for granny right now they are unconnected. In a way the memories are really mine.  They are really her’s also, but for the moment they can’t be her’s,  they are just mine and I hold onto them for her and I both in the hope and expectation that at some point we can share them again.

A child called Noah

August 19, 2009 § Leave a comment

I am reading “A child called Noah” by Josh Greenfeld.   It has been an interesting experience.   The book is basically pulled from Mr Greendfeld’s journal describing his autistic son and how the family’s life is affected by Noah’s autism.  Some parts of it are personally hard.  They are almost perfect reflections of  my own experience; in fact some of the passages might have been ripped right out of my own essays about life with Rachel.

The book has been borrowed from the Multnomah County Library and I am sure it has been read many times but interestingly someone before me decided that all other readers could benefit by their personal additions.  Yes some yahoo went through the book and underlined various “important” passages.   Unfortunately the defacing former reader obviously has an axe to grind (or maybe more).  In the first chapter they wrote “God d*** them” next to an underlined passage about how little help the medical profession had to offer.  Now why in 1969, when doctors knew even less than they do now about learning disabilities in general and autism in particular, the medical profession as a whole was worthy of damnation for not being able to tell the parents of an autistic child how to “fix” their child is beyond me, but there it is.  Well, actually it isn’t anymore.  I have an eraser and have been contentedly removing the underlining and “comments” that bother me as I come across them.

So what is up and why do I hate warrior moms?

July 2, 2009 § 5 Comments

Nothing is particularly up.  I think I am having one of those weeks where many things are causing me to think about Rachel’s autism and all the things we have done, seen, tried, been through and what will happen next.  I also have seen, for the first time ever in the popular media, a book published on autism that was NOT the “my child is recovered from autism” story – which doesn’t mean there haven’t been others, but I haven’t seen them. I still need to grab “Boy Alone“, but I am looking forward to it from what I have read so far, because these voices need to be heard also.   My voice needs to be heard,  Ashley’s voice needs to be heard and Rachel’s voice needs to be heard too. Hopefully Karl Taro Greenfeld’s work will help there.

When I see someone out on the talk show circuit: “For $29.95 buy my book, or better yet all five, and I will show you how to spend thousands of dollars on treatments that have — at best– anecdotal  support so that your child will be recovered too.  That is if they are in the 3-20 percent that can recover in the first place. ”  I find it annoying.  Yes, yes  I know I shouldn’t.  Those wonderful talk-show circuit celebrities in the spot light are just trying to give a voice to all those moms and dads out there struggling to recover their children from autism and they have really special insight into this because the did the right stuff.   I find it annoying because they don’t talk enough about the 80% of children that don’t get “recovered”  — in fact they don’t talk about them at all, other than in passing, as the standard disclaimer that one or another treatment won’t work for everyone.  They sell hope, they sell a lot of hope and I will give you that hope is needed, but hope doesn’t compensate for the 80% reality, especially not for those on the severe and profound ends of the autism spectrum.  If your child is on the severe end of the spectrum, yes, you need hope, but you need reality too.  You need to know that as your child ages things will change – sometimes changes might be good and others will be challenging. You will need support, you will need to have a plan for what to do as your child enters adulthood.  You don’t need to be physically exhausting and financially bankrupting  yourself trying every single cure d’jour out there and you do not need to feel guilty about not being super mom (or dad).

So if that is what is up, why do I hate warrior moms?  Short answer is I don’t.   I don’t hate warrior moms at all, in fact it has at times been a word I  would use to describe myself.   I really have nothing against moms (or dads for that matter) who want to describe themselves as warrior parents – as long as their spears aren’t pointed at me.    And, amazingly, some parents of autistic children do just that.  Crazy I know, but please stick with me for a moment.

I think for some parents of younger autistic children parents of  autistic children who are older, teens or adults,  can be very frightening.   Because our children are living proof that not everyone gets recovered/cured.   Occasionally this manifests itself in the assumption that there must be something we did or didn’t do.  Did we not try “X” diet?  Did we start early intervention soon enough?  Did we do enough hours a week? What about heavy metals?   I have seen it, the mom with the younger autistic child, she is sure – absolutely certain – that there must have been something we didn’t do.  And she is right, there are a lot of things we didn’t do.   We never tried aversion therapy,  we only gave Secretain two rounds,  we tried wheat/glutton free for a couple hellish months,  we never pulled out the carpet, or re-paneled the walls.   No one can do it all  and there is a fine line between trying “everything” and driving yourself and your child beyond with is good.

But Rachel wasn’t one of those “normally” developing children that suddenly became autistic.  She was different right from the start.  At three weeks I remember my mother noting the intensity with which she would stare at her jumpsuits striped cuff.   There was always something a little off – she would get so upset with the least variation in her routine.  We thought she might even be deaf at one point.   Further she has no less than three cousins that are on the spectrum on her father’s side.  So yeah, I think it is probably genetic too.  But even with the knowledge that Rachel has probably always been autistic, and even knowing that she was never in the high probability to recover group, it is difficult to keep an even countenance when the questions (all well meaning of course) come from someone who has heard the latest celebrity explain how to cure autism.   THAT is what I mean when I equate the current  “Warrior Mom” mentality with the “Refrigerator Mom” mentality of the 50s and 60s.  It isn’t that I don’t think warrior moms are wonderful people advocating very hard for their children.  But the reality is that  there is a cultural assumption perpetuated by the media that if moms and dads do enough or try enough then they too can cure autism.  This is not exactly a positive thing for parents of children who are teens and adults and still firmly on the spectrum.  It is almost mind boggling that parents of autistic children want to jump on that band wagon, but some are more than happy to do it.

So if you are a warrior mom and you think I have totally lost it, don’t understand, am really mean to Ms McCarthy (because I mention her name once in passing as someone who claims to have “recovered” her child from autism)  or whatever that is FINE.   I really and honestly hope that you find that thing or a combination of things that reduces your child’s autistic symptoms and I totally applaud your efforts to do so… BUT (you knew that was coming right?)  Do not make the same mistake I did.  You may find that your child at 14 is every bit as autistic as they were at 4 and it will be ok.  It won’t be normal, but it will be ok.  You don’t have to beat yourself up, or let anyone else beat you up over it either.  And once you get to that point you will likely find it every bit as annoying as I do to have to listen to the person at the grocery store, or your aunt, or the new neighbor ask the same questions about Diet X and Music therapy and you will smile and sigh and go on, and if you are like me you will rant to your blog because, well, sometimes you just need to rant.  Because you need to say it.  I am Darcee, my daughter Rachel is 15 year old and is severely autistic.  She will always be autistic.  I love her and she is a happy girl most the time.  Her life is not normal, but it is hers and it is good and autism is just a part of that.  I didn’t fail her, though I sometimes have felt like I have, but she is and will always be autistic and my daughter and someone who is loved.

Yesterday at mass

June 22, 2009 § 2 Comments

So, yesterday at mass was one of those minor disasters.

Rachel is happy to get to mass

Rachel is happy to get to mass

We had Rachel with us overnight and everything was going well.

She was a little agitated when Mass started.  I am not sure why exactly.  But right as Father stepped to the ambo to read the Word Rachel lost it.  Completely.  So badly that I had to take her out.  I couldn’t even control her by myself and Kyle had to help.  Ashley stayed in mass with the younger children and we drove Rachel back to her group home, and came back.    This is the first time Rachel hasn’t stayed through mass since we started attending Holy Rosary and for at least a year before that.

Once we got Rachel out of the church we sat with her on the steps to give her a chance to calm down.  She would alternate between being just sad (which is fine) and being out of control (which means mom or dad get pinched) and then we just gave up on the idea of getting her to come back to mass and decided to drive her back to her house.   We got Rachel to the car and she was really, really not happy to be leaving.  We decided that it would be safer for everyone if we both went in the car with Rachel.  She has “lost it” in the car before and attacked the driver.   So having one of us to help control Rachel if she got out of control was important.

I went inside to tell Ashley that we would be gone for a little bit and to just hang out with the little ones at coffee and donuts if we didn’t get back before the end of mass.   I am so thankful to have such wonderful children.  Josh whispered to me that he would be good and to remember the movie in Rachel’s bag.  Rachel had put a movie that we had checked out from the library in her bag on the way out of the house and we had asked the children to help us remember that it was there so she wouldn’t get it back to her house without us noticing.    Sarah and Hannah took the whole thing in stride.   Ashley reported later that Josh and Sarah were a little rambunctious right after we left, but once she sat between them they were fine.

Rachel was ok in the car.  She started saying “Bad… bad! bad!” and crying.  Real tears were running down her cheeks.  She knows when she has crossed the line, but she doesn’t know how to stop herself before she gets there.  Total lack of impulse control in action.    When we got to her house she rang the doorbell and asked for a kiss.  She wasn’t happy with herself at that point.  We weren’t particularly happy with her either  – a few more bruises,  a scratch and a couple bites later –  but Rachel is Rachel and we love her.  She got her kisses and hugs and then ran to her room.  At least everyone was safe.

We got back just as mass was ending – just in time to join the children for coffee and donuts.   Everyone at mass pretty much saw the whole event.   I got several hugs and sympathetic inquiries, which makes me all the more thankful for our parish and our friends.  Our priest came up and let us know that he had seen everything and had been praying for us.   This means a lot.  I know that Father Anthony values a reverent mass and for him to come to us and express his understanding was touching.   I really hate when Rachel’s behavior affects the mass experience of others.  It doesn’t happen very often, but when it does it is distressing.  I know how much having a “good mass” can mean to me if I am struggling with something and how comforting a peaceful mass can be.  I would hope that Rachel’s behavior wouldn’t ever intrude on that for others, but I know that it would be impossible when she  creates such a disturbance for it to not.  Which makes me all the more thankful for the prayers and understanding of others who were there.

I know she love mass, and I could see how sad it made her that she had to leave.  Hopefully Rachel will be able to participate in the mass next time.  She will just be the young lady with the golden curls who makes the occasional non sequitor noise.   Thank you to anyone who was there and prayed for Rachel and us.  Thank you for your understanding and support.

Of course writing this I realize I never really  fulfilled my Sunday obligation.  : -/

Good news.

March 18, 2009 § 5 Comments

Last fall I was called and interviewed by U.S. Catholic for on an article they were working on about autism.  It was really a fun experience.  I also wrote a small companion piece for the article.  Both the article and my little piece are up at U.S. Catholic’s website.

We have also gotten to the official “announcement stage” of our newest little one.  We will be having a baby in late October.  As you can imagine the children are all overjoyed.  I am still feeling that slightly dreamy ‘overwhelmed’, but am I overwhelmed by how wonderful it is to be adding a new life to our home and all the little things that bringing a new baby into the world mean.

I think my brother-in-law said it best yesterday.  “I know your kids mean everything to you guys”.  And they do.  There is nothing we give up, nothing we “miss out on” that could possibly matter more than our houseful of laughing, crying, dancing, playing, occasionally fighting and always loving and beloved brood.

First communion Social Story

February 10, 2009 § 9 Comments

When Rachel was preparing for her First Communion I created a couple tools to help her prepare.  The first tool we created was “Rachel’s Jesus Book” and the second was a social story about attending mass and receiving Communion.

Since Rachel was born she has attended religious services.  First in the LDS Church and then when she was about three we started attending Catholic Mass.  By the time Rachel was 9 we had been attending weekly mass in the same parish for about three years.  Mass wasn’t something new to Rachel.  The Jesus book was created to help her more fully understand the imagery in mass.

The social story was more a practical guild to receiving the Eucharist.   The order of the mass, how we receive and what it means.   I want to think that having the two separate books helped Rachel pin-point the Eucharist as the pinnacle of the mass.   Attending worship services as a community, the prayer of the mass, the divine liturgy are all very important, but they are nothing without the Body and Blood of Christ. « Read the rest of this entry »

As God made me

January 8, 2009 § Leave a comment

 

 Rachel flashes us a grin

Rachel flashes us a grin

God made us each as an expression of His perfect and wonderful love.  How do we reconcile that to the fact that all of us are born faulted.  Particularly, how do we reconcile that to idea that some people face incredible challenges because of birth defects, disability or genetic disease?  This has been highlighted today while I was reading about Autism Speaks video Autism Every Day and some of the reactions to the video.

I will probably write about the film when I have more time.   A good amount of the controversy surrounding the film had to do with its creators who “We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.”  A good number of people, myself included, worry about the “biomedical research into causes and prevention” bit.  If by prevention you mean prevention in the Down’s Syndrom sense of prevention  — no thanks.   Aborting children for the sole reason that they might be born autistic is not morally acceptable.  Rachel is as much deserving and entitled to her life as any person and has been since the moment she came to be. 

But, does that mean that I wouldn’t provide her with just about any opportunity to lead a more normal life?  Don’t I want there to be a cure for her? Or is Rachel’s autism something about her that altering it would mean making her someone else? 

Even setting aside the reality that at fifteen, even if you could somehow totally remove autism and have Rachel be completly normal today she would still have a devil of a time catching up with the years of schooling and language that she would have to deal with learning. (note that she can not read) But let’s just say we could magically catch Rachel up with this miracle cure too.  Would we want to do it?   Would we want to do it knowing that in way autism defines some of what and who Rachel is?  I think we can only answer yes to this.

And there comes the trick.  We love Rachel as she is, but we can also see the dreadful issues that autism causes for her.   While she is mostly happy with her life there are undeniable struggles for her because of her disability.  One of the things I find most offensively obnoxious when reading on autism forums and boards is those who are diversity/disability activist in the sense that they focus not on the disability of autism as being a profound issue limiting their social interactions, chance to form meaningful relationships or even care for themselves as adults, but on the diversity that autism is.  They view autism as something which sets them apart, but also a critical aspect of who they are.   Which is true.  But when you are reading and posting on a forum and berating parents like myself who are here hoping to find something which will allow their children to do things like learn to read and write and communicate their feelings then something seems off.   We aren’t trying to “fix” individuals on the autism spectrum who are functioning in life — supported or independently, we want our children to have that same chance.   That is, I suppose, what offends me.  The idea that I don’t love my child as she is if I want her to have the opportunity to function on a reasonably independent level, in short, if I didn’t wish that she wasn’t autistic, or at least not as severely autistic.

God created Rachel as she is and that is autistic.   There is something about that that is His plan.  Vainly I can look at myself and say, Yes, being Rachel’s mother has changed my outlook considerably.   Or I could look at my children and see that they are more compassionate and tolerant people than I could have hoped they would be otherwise.   But I can also see Rachel in her struggles and her happiness which are different from her typical peers in many ways, but still similar.   But I can not, as her mother, wish that she wasn’t so profoundly affected by autism.  Some of this is selfishness on my part, but great deal of it is completely focused on Rachel.    It is even more true as she enters into adulthood and I am faced with the inevitable concerns that she can not adequately communicate her wants and needs in a way that others can help her achieve them.   Is it wrong to wish that Rachel could be other than how she was born? To wish that she wasn’t autistic.

I have to think not.   I think there is often a confusion about between the soul and the mind.  We judge too much on a persons mental capacity and most specifically on their ability to communicate,  even sadly with regards to spiritual things.  I was far more guilty of this before I had Rachel than I am now, but I still find myself occasionally slipping into this mindset.  But that begs the question, “Is someone’s worth based on their intelligence?”  We have to say no to this.   There is more to the person than the way their brain functions.  A tragic accident or disease which damaged someone’s mind doesn’t make them a different soul, it would only alter the function of that particular organ.   Which is why I don’t think Rachel would elementally be a different person if the autism-cure-fairy showed up and made her “normal”.  What I love about Rachel is no more her autism than my love for any of my children is based on their strengths or weaknesses.  I love her for who she is with autism or without.  For her own ease of life I wish she didn’t have to deal with autism but we all deal with what we are given both our blessing and our challenges.

Fun with user’s questions.

August 22, 2008 § Leave a comment

Every so often I like to go through the searches that bring people to my little corner of the web and see just what people were looking for when the stumble in here.  Which inevitably yields a fine selection of “Questions people weren’t afraid to ask but probably didn’t find an answer for.”  at least not here.  So, being me, I will attempt to fill in the gaps.

How do you teach autistic children about the Sacrament of Communion?   I think a lot depends on the level of the child.  Some autistic individuals are more capable of abstract thinking than others.  But that can be said about normal children at that age as well.  Here is the real kicker, I honestly don’t think the Eucharist as it is, that being the blood and flesh of God, can actually be explained to anyone.  It is something that the Holy Spirit testifies to, it is a matter of miraculousfaith, it isn’t something teachable by human means.

So, I would say if you are trying to teach the truthfulness of the Sacrament, don’t,  just pray for the Spirit of God to teach that thing that defies all human understanding.  Your example of faithful life probably teaches best.  When you attend mass be sure that you are focusing on the sacrament, receive reverently, pray afterward in thanksgiving, talk about how much it means to you personally.  You can use picture stories or social stories, you can use picture books, you can use words and lessons depending on the mental and verbal understanding of the communicant but for the them to understand the miracle that is the Eucharist is going to take and act of God (but it does for all of us, so trust Him in this).

If you are interested in reading more of my thoughts on autism and the sacrament of communion you can read them here.  There I have some more nitty-gritty, how to make it actually work, sorts of advice.

Where do you find (inexpensive) white dishes?  I really like white dishes.  My new favorite place to shop is Ikea.  They have white dishes in their catalogue.  I think these are beautiful and plan on giving them a try very soon. 

When does Advent 2008 start?   This year the first Sunday of Advent is November 30.   I am hopeful that I will have most of my Holiday preparations done before the beginning of Advent this year so that I can focus more clearly on the family, spiritual and faith aspects of the Advent and Christmas season without the clutter of culture, consumerism and materialism clogging up my life.

What is Catholic Homemaking?  Homemaking when a Catholic chick is the one doing it?   Ok, for another not quite so tonguein check answer: There are some things that  mark Catholic homes.  No, I am not talking about plastic statues of Mary or St Francis in the yard, though that can be part of it.  What marks all that Catholic homes I am blessed to be surrounded with is a sense of the flow of the liturgical year.  There is also a sense of being just a tad counter cultural.   I know when I am looking to see if I am in the right place for an activity with my homeschool group all I need to lookfor is the club vans with the pro-life stickers on the bumpers.  We are a group of mostly big families, five or six being average.  It is the sort of group where, when the woman with seven kids announces that number eight is on the way everyone is honestly happy and no one makes snide comments or asks “how will the older kids feel about ANOTHER one?” because the older kids are all bragging about having another one to their friends.  We tend to be somewhat kids centric, rather eccentric and just a touch touched in the head compared to the rest of the world. 

Who is Carol Race?  Carol is a mom in Bertha, Minn.  Her son Adam is autistic and the parish of St Joeseph took a restraining order out to keep the family from bringing Adam to mass.  In response to that Carol started a website called Project: Adam’s Pew.  I like Carol.  I have spoken to her several times and she is really a delightful person to talk to.   I don’t completely agree with everything she has said or done in this situation, but I do like her and I understand that she is trying to be the best mom and advocate for her son that she can be.  This is one of those cases where what is read in the media is just a tiny slice of the whole story.  The Oregonian ran a piece on this on August 14th and the comments that the paper ran a few days later displayed the predicatable gross bigotry to the Catholic Church that these kinds of stories bring out.  Bad, bad evil priest, poor innocent little boy being kicked out, WWJD and not so vague hopes that the priest rot in hell.    If you want to read my previous thoughts on this story you can check them out on the sidebar under autism

What are the lyrics to “Things you don’t say to your wife”?  A lot of people seem to be looking for the lyrics to this funny song so I went ahead and transcribed them:

 Hey honey have you gained some weight in your rear end?
The dress you wear reminds me of my old girl friend
And where’d you get those shoes I think they’re pretty lame?
Would you stop talking ’cause I’m trying to watch the game?

If you’re a man who wants to live
a long and happy life
these are the things you don’t say to your wife.

I planned a hunting trip next week on your birthday;
I didn’t ask you but I knew it’d be ok.
Go make some dinner while I watch this fishing show.
I taped it over our old wedding video.

If you’re a man who wants to live
a long and happy life
these are the things you don’t say to your wife.

Your cooking is ok but not like mother makes.
The diamond in the ring I bought you is a fake.
Your eyes look puffy, dear, are you feeling ill?
Happy anniversary I bought you a treadmill.

If you’re a man who wants to live
a long and happy life
these are the things you don’t say to your wife.

If you’re a man who doesn’t want
to get killed with a knife
these are the things you don’t say to your wife.

So, that is it for this round of answering those pressing questions that readers ask on their way to Simply Catholic.

An update for Carol Race

August 13, 2008 § Leave a comment

The charges for violating the restraining order have been dropped against Carol Race. You can read the news article here.

I spoke to Carol last week and told her that I would publish a link to her latest endeavour. There is a petition on the website “Project: Adam’s Pew” I have read it and I am still considering it. In reality I think I need more feedback from those beyond myself. The petition is asking for the Bishops to consider forming a task force to look into how their former recommendations are being carried out. Which I can’t imagine being a harmful thing.

At the point where we are looking to send a petition off to the Bishops to address the “issue” of inclusion of people with disabilites into the communal celebration of the mass the story stops being about Adam or Rachel or any other particular child or adult and becomes about the best practices for all involved. To decide what is best we need to look at the needs of the community, the needs of individuals within the community, and the teachings of the Church.

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