June 22, 2009 § 2 Comments
So, yesterday at mass was one of those minor disasters.
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. : -/
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.
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.
April 24, 2008 § 8 Comments
The answer is a qualified yes. From Guidelines for the Celebration of the Sacraments with Persons with Disabilities
19. The eucharist is the most august sacrament, in which Christ the Lord himself is contained, offered, and received, and by which the Church constantly lives and grows. It is the summit and the source of all Christian worship and life, signifying and effecting the unity of the people of God, providing spiritual nourishment for the recipient, and achieving the building up of the Body of Christ. The celebration of the eucharist is the center of the entire Christian life (Canon 897).
20. Parents, those who take the place of parents, and pastors are to see to it that children who have reached the use of reason are correctly prepared and are nourished by the eucharist as early as possible. Pastors are to be vigilant lest any children come to the Holy Banquet who have not reached the use of reason or whom they judge are not sufficiently disposed (Canon 914). It is important to note, however, that the criterion for reception of holy communion is the same for persons with developmental and mental disabilities as for all persons, namely, that the person be able to distinguish the Body of Christ from ordinary food, even if this recognition is evidenced through manner, gesture, or reverential silence rather than verbally. Pastors are encouraged to consult with parents, those who take the place of parents, diocesan personnel involved with disability issues, psychologists, religious educators, and other experts in making their judgment. If it is determined that a parishioner who is disabled is not ready to receive the sacrament, great care is to be taken in explaining the reasons for this decision. Cases of doubt should be resolved in favor of the right of the baptized person to receive the sacrament. The existence of a disability is not considered in and of itself as disqualifying a person from receiving the eucharist.
21. Eucharistic celebrations are often enhanced by the exercise of the diverse forms of ministry open to the laity. In choosing those who will be invited to use their gifts in service to the parish community, the parish pastoral staff should be mindful of extending Christ’s welcoming invitation to qualified parishioners with disabilities.
When we were looking into First Communion for Rachel we wanted two things. We wanted to follow the teaching of the Church as hard as it can be sometimes when your child is disable there are things that won’t work for them, if it was determined that Rachel lacked sufficient understanding or was unable to receive reverently we would have accepted that and trusted that God would bless her life in other ways. But we wanted our child to be able to participate as fully as possible in the life of the Church.
I was really sadded by the story of an eight-year-old girl who was intolerant of wheat and the way her mother decided to deal with the issue of her daughter receiving communion. The only valid medium for the Eucharistic bread is wheat. For those who can’t consume wheat they may receive the wine only and that is valid, every bit as much as the reception of bread alone. What bothered me so much about the above news story was how the mother acknowledged that she knew that her daughter could receive the wine, but in her opinion an eight-year-old shouldn’t ingest any alcohol and so the entire Church would have to change the dogma of two-thousand years because she didn’t want her daughter to have a miniscule taste of wine. “It’s not appropriate for children to drink alcohol,” she said. “Even a sip.” The last thing I wanted to do when looking at this sacrament for my own child was to become so caught up in what I wanted that I missed what was resonable and right. So the question of Rachel understanding that the host was not just a little snack weighed on me heavily.
There were some signs that Rachel did understand. She had always been very caught up with food. One cookie was never enough. It was always surprising to me that she had never reached for or grabbed a host when I went to receive Communion. But reason suggested that since she never had one she might not see them as food. I was somewhat comforted by the idea that in “Cases of doubt should be resolved in favor of the right of the baptized person to receive the sacrament”. I talked to my priest, to our Diocese director of the Office for People with Disabilities and to the Lord in prayer. But in the end it was God, through Rachel, who let us know that she understood enough to receive.
My small bits of advice gleaned from what I have read and my own experience:
- As your child approaches the age typical in your parish for First Communion speak with your priest and/or the person responsible for religious instruction in your parish. Go in with an open mind and heart and explain your child’s situation as fully and objectively as you can. Listen to what they say and consider it thoughtfully.The vast majority of priests want to serve their parishioner and they want to serve the Church and to do both faithfully. In my experience it has actually been the more liberal priests who are the ones most likely to say that your child shouldn’t participate in the Sacraments at all. I have heard several mothers say that they went to Fr. and he said their child didn’t need the Eucharist (or reconcilliation). Sometimes going back with Guidelines for the Celebration of the Sacraments with Persons with Disabilities in hand is helpful. Generally their reason for refusing is some idiotic banality about how “your child is so close to God already because their are disabled they don’t need to receive Communion.” Don’t buy this, we all need grace. It is one thing if your child really doesn’t understand that this is a special thing, a holy thing, and would not approach the sacrament with reverence, but not some fluffiness about not needing it.
- If you can not come to some agreement at the parish level don’t be afraid to go to the diocese. I wouldn’t say just go straight to the Bishop, but if you need to you need to.
- When it is decided that your child is capable of receiving the Eucharist there are some wonderful resources for helping your child prepare. Meyer Johnson has communion symbols available for their products. We used these to help create a social story for Rachel. There are also some good books available for First Communion with colorful pictures and simple explanations.
- Test drive with an unconsecrated host if you think there is ANY chance that your child will spit it out or not eat it. Reverence for the Body of Christ has to come above all else. I know there are a few people who might think that sounds harsh, but if we don’t believe in the Eucharistic miracle what is the point? I know personally the hurt that pulls at your heart when you realise that your child can do something because of their disability and how much worse it is with those lovely rites of passage like First Communion, but we are talking about the actual presence of Christ and the reverence that demands must trump parental sentiment. When we were preparing Rachel for her first communion we brought home a half a dozen unconsecrated hosts and she was happy to eat it and seems to like the flat, tasteless breads. I know that for some people with autism the texture is off-putting. Be sure to let your priest know if a smaller bit is better. For the rite to be valid only the smallest bit is needed so be sure to explore that option before the day if that seems appropriate.
- You can also validly receive the wine alone. The same caveat applies. Be sure that your child won’t just spit it out, but if the bread is not working for you that could be an option to explore. Your priest will most likely be happy to work with you on this. Most parishes that I have been in have allowed the children to try a tiny sip of the unconsecrated wine before they experienced it in mass. Some children really don’t like the taste and no priest wants to risk desecrating the host.
- If a packed First Communion mass would spell disaster for you First Communicant talk to your priest about about your child either receiving their First Communion as part of a regular mass or communion service. Sometimes a small weekday mass works better. Or see if your Diocese has masses for people with disabilities that might serve your families needs.
Finally, the Church wants to serve your family and your child, each individual member of the Body of Christ. At the same time She is also trusted with safeguarding the sacraments and traditions of the Church. Most priests, the US Bishops and Rome all echo that every being, no matter their state in life or their disability is of infinite worth, a full person of dignity and worthy of the utmost respect and they want each soul to participate in the sacramental life as much as they able to within the limits of their understanding and capabilities.
March 5, 2008 § 8 Comments
Being Catholic and the parent of an Autistic child has led to many questions that are unique to the parents of children with disabilities. “Should my child receive communion?”, “Does my child need Confession?”, “Is it a sin for us to miss Mass because of my child’s possible behavior?”, “Does the Church have any direction, programs, help for us?”. In order to help anyone out there also searching for answers I am sharing what we have learned over the years.
Going to Mass
It is not uncommon to hear: “I feel uncomfortable bringing my son to Mass. I know he is going to make sounds, he might get upset, it would be one thing if he was a baby, but at seven people stare. The stares are unbearable.” Parents all too often stop coming to Mass with their child with an emotional/behavioral disability out of concern that they will be disruptive. In some cases I think this can be warranted. But in general, most parishes will be very welcoming to a family if they know what is going on.
When we moved parishes after purchasing a new house we were very nervous about how Rachel would be perceived, what other people would think as she started hooting at the ceiling fan, what if she had one of her melt-downs? When we took our pew we were delighted to see another large family with a child who had those tell-tale signs. Instantly there was a bond, we became friends. The small parish was very open to its two little angles with the odd behavior quirks. The priest was accommodating and loving to the girls and we were relieved and happy to find an accepting place. You never know when you will be the family that gives hope of acceptance to someone else.
Don’t be afraid to call your local parish and schedule an appointment with the priest to talk about your disabled child. While there are always the few priests who give horrendous advice most priests are open and caring people who want the best for your child and your family. You may find there is one or another mass that is shorter, or the music more to your child’s liking, or even one where a family with a disabled child is already in attendance.
In some dioceses there are special programs for disabled people and their families. In Oregon there is The Office for People with Disabilities. They sponsor “adapted liturgy” which accommodates those who need something other than the usual mass. Pretty much anything is accepted there because everyone is in a similar situation.
If mass is simply too over-whelming for your disabled child you might have to miss mass. It is a valid exception to the weekly obligation to be caring for a child who can not attend mass. Most priests will be understanding of this, some will let you receive communion for the home-bound especially if you are a single parent. You also might get creative with your mass attendance: consider alternating parents staying home with one child while the other attends mass with the rest of the children, one parent attending a different mass, attending mass during the week while the disabled child is in school, or scheduling respite care so that the rest of the family can attend mass together.
note: I am not a cannon lawyer, I am sharing what I have read and been told as a starting point. Please talk to your local priest and diocese about the exact procedures in your community. You also might read Welcome and Justice
for Persons with Disabilities from the USCCB and “Guidelines for the Celebration of the Sacraments with Persons with Disabilities“. I have pulled some quotes from “Guidelines” and added my comments below.
Baptism: Every child, no matter their disability is entitled to baptism.
Communion: This is the one that was very difficult for us. “It is important to note, however, that the criterion for reception of holy communion is the same for persons with developmental and mental disabilities as for all persons, namely, that the person be able to distinguish the Body of Christ from ordinary food, even if this recognition is evidenced through manner, gesture, or reverential silence rather than verbally.” For Rachel this was a hard thing to tell, she is almost non-verbal and finally it took a small miracle for us to see that she did have some understanding of the sacrament.
I have added two posts that more fully explain some of what we have done for First communion:
Confirmation: “To receive confirmation a Persons who because of developmental or mental disabilities may never attain the use of reason are to be encouraged either directly or, if necessary, through their parents or guardian, to receive the sacrament of confirmation at the appropriate time.”
Confession: “Only those who have the use of reason are capable of committing serious sin. Nevertheless, even young children and persons with mental disabilities often are conscious of committing acts that are sinful to some degree and may experience a sense of guilt and sorrow. As long as the individual is capable of having a sense of contrition for having committed sin, even if he or she cannot describe the sin precisely in words, the person may receive sacramental absolution. Those with profound mental disabilities, who cannot experience even minimal contrition, may be invited to participate in penitential services with the rest of the community to the extent of their ability.”
Anointing of the Sick: “Since disability does not necessarily indicate an illness, Catholics with disabilities should receive the sacrament of anointing on the same basis and under the same circumstances as any other member of the Christian faithful”
Community and Parish Resources: Don’t be afraid to ask. You might discover there are many resources in your community for your family. Even ask at your child’s school or pediatrician and don’t be afraid to share with them what you are doing for your child’s faith life. We found that our daughter’s teachers have often been very helpful in finding resources for helping Rachel in mass (social stories, board maker pictures, sharing what they know other families are doing).
Your Dioceses website should have links to any special ministries they offer, and as more families request these things more of them are developed. You may find your parish or a neighboring parish has a support group or would like to form one.
Last thoughts:Having a child with a disability can be a blessing and a cross. Keeping your own faith-life alive, finding time for prayer, time for mass, time for anything can be a struggle but the grace and peace of God can be that one thing that keeps you going. I hope that anyone who has read this will keep us in your prayers as I will prayer for those who read it.