A question for our readers

October 14th, 2017

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If you consider yourself a church-going type of person, and you are the primary caregiver for your child(ren), spouse, parent(s), or siblings with extra needs, how often do you yourself, the caregiver, attend church?  If you’d like to add any explanatory life circumstances, such as what type of church you attend (whether it teaches that attending church is a religious duty with penalties for failure to comply, whether it offers support to families affected by disability, etc.), physical limitations you may have, how many children are in your home, how many are dependent, how many have disabilities and to what extent (such as requiring total care), whether or not you receive outside help and how much/often, or any other pertinent details, please feel free.

We’d be very grateful if you would please pass this blog post on to anyone you know who fits the following description:  Primary caregiver for child(ren), spouse, parent(s), or siblings with extra needs.

 

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Joe and I are hoping for two results from this blog post and the post titled “One day in seven.”

One) That we hear back from every reader who has personal experience living the caregiver lifestyle.  If we could, we would commission a detailed survey of every family caregiver.  That’s how much we want to hear from you!

If you prefer to remain anonymous, feel free to use a fictitious name or email susanna@theblessingofverity.com.  We’re all too aware that those who struggle to get to church regularly can fear being shamed if they admit that publicly.  It’s easy to talk about aspects of our lives that make us look good to others; it’s not so easy to talk about the parts that leave us vulnerable to criticism.

Two) Because there can be passionate beliefs attending this topic, we hope that any discussion will be carried out with calm respect, and that ultimately it will result in more light than heat.   Bitterness and hate will not find a resting place here.  You might already know that Joe and I hold some non-traditional views about church.  Joe and I do not subscribe to the beliefs that church is the only place people can meet with God, that we risk hell fire if we don’t attend regularly, or that attending church is a gift we are giving to God (as though He needs anything from us), and while we do believe that the church needs to be challenged where it’s wrong, it is our family; it gives us no joy to hear rancorous invective against our family’s failures.  We believe that the church is made up of people and is not a building.  We believe that we are part of a body of believers and need to meet with them regularly, but that we’re not given detailed instructions in the Bible about how that should look and therefore have some freedom in that regard.  We also believe that we human beings are designed, created and commanded by God to rest one day out of every seven.

PLEASE NOTE:  If you attend some other type of place of worship, we would love to hear from you as well!

 

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9 Responses to “A question for our readers”

  1. Ashley says:

    We are Greek Orthodox. I have a six year old with Down syndrome and arthritis and an 8 and 10 year old who do not have disabilities. I do attend church every week, and the church is very supportive of her noise and busyness. At this point, after much training, she mostly sits quietly and draws except to occasionally sing along or wave to someone she knows. She does sometimes try to demand the person behind her pets her hair, or hold her hand, etc. Mostly, they adore her. Orthodoxy is helpful in that it is extremely repetitious, which is the environment she does best in. However, after being here three and a half years, all care is still up to me. For two years I had to be with her in Sunday school because they wanted her to sit and participate or leave, so I’d stay until she wouldn’t sit (which was generally less than five minutes) and then take her out. Last year I sat outside the room and when she got to the point of getting up and going to the door I would take her out. Now she has a behaviot therapist Sunday school teacher. I sit outside still since there are ten kids and one teacher (usually there are at least 2-4) but only to take her to the bathroom or if she runs. So, it’s getting better. My husband and I take turns chasing her during coffee fellowship afterwards (in Orthodoxy you fast before communion, so there’s coffee and snacks as a breakfast). I guess I would say I feel like we are very well tolerated at church. Not assisted, but they are happy we’re there, even with some noise and movement. There are two others in the church with disabilities-a teenage girl whose disability I don’t know and a two year old with Down syndrome. The teenager is not highly involved in the life of the church, but the reason for that is more likely that she is Eritrean and they have their own church, but no priest, so they come for communion and leave. The two year old was born into the church and is pretty much adored by everyone. I do wonder how it will change as they get older and are less tiny and adorable and are more obviously delayed.

  2. Elicia says:

    We are Roman Catholic and have a 5 year old son with Down syndrome. We have special needs religious education at our church, so we drop our son and older daughter off at their religious education classes and my husband and I go sit in church together. We get to hear the readings and the homily without the kiddos, and then they join us right before the time of the offertory. It works out well. He behaves well in church, but this way he only has 30 mins to have to behave instead of over an hour. Less stressful for everyone, especially him! It was harder when he was younger, but then my husband and I took turns going to church. Our church has five masses on Sunday. I imagine it would be harder in smaller churches where there is only one Sunday service.

  3. Jeannie says:

    Our church is absolutely wonderful with our daughter, who is 11, wheelchair-bound, and nonverbal. They were delighted when we adopted her, many individuals gave significant financial gifts to help bring her home, and she’s enthusiastically greeted by many, many friends every time we are able to go. The church has a special needs ministry called Can Do Kids, with an amazing room full of sensory toys and equipment, trained staff who are comfortable watching her for seizures and such, and Bible lessons tailored to the children’s needs. Children who can handle the regular Sunday school class but need extra help get a shadow. On top of all that, church members frequently bring us meals, watch our other kids while we take our daughter to appointments, etc. We’re so thankful. That said, this year, her health challenges have increased, and I’ve probably only been to church, on average, once every 6 weeks. (We usually go 2-3 times a week.) Her last surgery was very successful, and we are optimistic that we’ll be enjoying our church family more often from now on. :)

  4. Sonja says:

    We are Roman Catholic and have 4 7 year old children (quadruplets, two of whom are identical twins with autism). We go each Sunday as a family to Mass and everyone is pretty familiar with our kiddos *grin* It took us a lot of work to get to this point. We used to split as we slowly worked up our time with each of our children with autism. We just did our best, and we felt fully supported by everyone. For church education, our two with special needs attended a Montessori program (Catechesis of the Good Shepherd) at a different parish because it was run by an autistic support teacher, so we felt she would be a better fit. Now they attend a special needs CCD program once per week in preparation for Communion, but one of them is able to go to the mainstream Montessori program at our parish with a 1:1 support person. All in all, it’s been a really positive experience. I can hear my one son singing the Alleluia as he falls asleep right now as I’m typing. :)

  5. Marah says:

    My situation is a little different. I am retired and my husband has some physical disabilities that have recently gotten worse, to the point that he needs my help to get out of bed and for dressing and personal care. We are in the process of trying to set up help here in our home, but the process can take quite a while. I do have to leave him for things like grocery shopping, but am trying to limit the time I am away. Normally I am very consistent about going to church, but recently have been staying home in order to limit the time I leave him. I don’t feel guilty about this and I think people understand the need. At the same time, I know I need to be careful to get the spiritual food and the fellowship that I need. I am also finding that it can be hard to ask for help, and that sometimes it is hard to find the help that really fits my circumstances.

    I have followed this page for a long time, Susanna, and I pray that you find just what you need for this season of life.

  6. Lisa says:

    We attend church weekly. It’s a family-integrated church (in the CREC denomination) so our children are with us through the whole service. We meet at 11 so even though we are not early birds, we can get there on time. When we visited our church for the first time and it came time for communion, the minister invited “all baptized persons, regardless of age or mental capacity,” to partake. Right then I knew we were in the right place. :) We believe God’s covenant promises are for us and our children so we baptize our babies and teach them that they are a part of the church. Every week I remind my Magdalena (age 8 with Ds) that she is a member of our church. There are often times during the service where she will start a fit over something, or refuse to obey, so I lead her outside and remind her that she is part of this body so she is expected to participate as much as she is able. She can stand and kneel and sit and sing the familiar songs and recite the familiar parts of the liturgy. The training side of this is taxing and has been going on for years, but it is worth it for her sake and the sake of the church. She runs through the door to greet everyone when we arrive and when it is time for passing of the peace, she does not sit back down until she has shaken everyone’s hand. She brings much joy to everyone and I am blessed and refreshed to see that. Fellowship time is difficult because she does like to wander off on her own. Once we were visiting friends and went to their church with them. A nice older lady was talking to me after the service and I didn’t want to be rude. After all, it was possible that Maggie just wandered into the nursery. Nope. She had run off with my purse. When I asked her where it was she led me to the men’s bathroom and said, “it’s prisoner.” She had locked it in there! And just then the pastor said, “Let’s gather around for the meal!” Now I can laugh about it, but it was embarrassing at the time. It is hard to relax in social settings because I feel like I’m always on alert, but our church is a close group so they are very understanding and helpful. Our kids like to watch a movie on Sunday afternoons so that is when I find a little time to read and recharge for the week ahead.

  7. Robin Osteen says:

    We have six kids, two with Asperger’s and one with FAS/ADHD. We didn’t attend fellowship for the last 4 years. We began to study the IDEA of keeping the Sabbath/7th day on Saturday and studying the biblical feast around the same time that Miah was placed with us through Foster Care. He was born addicted to Cocaine and with high levels of alcohol exposure so I spent the first month or two sleeping in 30-45 minute intervals and trying to homeschool 5 other children under the age of 12 (didn’t really happen, lol). First our inlaws and then our fellowship began to confront us about missing Sunday morning services. No matter how many times we told them about life with Miah and our family’s survival existence, they couldn’t see past the fact that we were studying the OT feast and Sabbath commands. We told them again and again that our absence was due to sleep deprivation and Miah’s intolerance for loud voices and noises (he was extremely hypertonic and was put into fight-or-flight reaction by any sharp sound or sudden movement). Any time something set him off, he would stiffen like a board from head to toe, his eyes looked like an owl, and his breathing would get really shallow. He wouldn’t snuggle and screamed/hyperventilated if you tried. Many times he wouldn’t eat for hours afterward. So we stayed home. If he was happy, we didn’t rock the boat. Coming from parenting 5 kids similar to the “To Train Up a Child” mentality… it was a shift to say the least. But it was survival and it really was what he needed. It was all we had available to give.
    Eventually (4 months-ish) our leadership took my husband out for breakfast and told him that they were removing us from membership.
    We had not spoken to a single person in our church about our questioning of the Sabbath or Feasts except our inlaws. But they had informed leadership of our “doubts”. Anyway.
    It’s been four years. We shared a small home fellowship with a few other families (that have become like family to us) about once a month during that time.
    We just started back to regular fellowship (in a building with a name, lol) with a different community. We are really enjoying it. Their dress code requirements are very minimal (modesty, but not fancy/dressy). They let us bring our double camping chair (it’s very low to the ground and seats two with no middle separation) and set it up in the back of the room so that Miah can play with quiet toys on the floor and lay in the chair when he gets tired. Service is usually about 5 hours (group reading, study and discussion, prayer and announcements, snack/fellowship time, worship, then teaching). Miah usually plays for the first hour or two, then lays in my lap and I play with his hair or rub his back (he has a super high need for consistent sensory input or he gets increasingly anxious and sensory seeking) until he falls asleep. Then he will sleep in the chair for 2 to 3 hours. Then he’s up and quiet for the last hour or so.
    It works beautifully for the moment. Kind of taking it one day at a time. I love that no one there stresses about it if the girls hair didn’t get put up, or brought a bag of chips for the snack table instead of homemade cookies, or I fell asleep with Miah halfway through. ;)
    It’s a small fellowship consisting of all age groups and a hand full of other large families. The conversation and study is real. We regularly have discussion with varying view points on passages and it’s okay that they don’t all agree. They all love and respect each other and share opinions with humility and openness. Almost every week there will be a couple of people who disagree passionately on ideas like modesty, end times timelines, interpretations of Paul’s words, etc during the study/discussion time and then they get up, grab a plate of food during “Oneg” (eating together), sit at the same tables and visit about life for half an hour, share (and meet) needs, tell stories of their week with humility and thankfulness, and encourage each other. It’s the most beautiful thing. I keep sort of waiting for it to hit the fan… but I’m pretty sure that’s just my insecurity. ;)

  8. Cassandra says:

    Hi,

    I left a post today on another post of yours but do not see it. Maybe i never sent it or maybe you didn’t care for it. If it’s the later, please forgive me. My content was different from the majority of other posts.

    So this is a timely question. About five months ago we left the church we have attended for 21 years. At first and for the next three months it broke my heart. Couldn’t sleep, couln’t eat, couldn’t reconcile the betrayal. This place was a pretty huge part of our life, to say the least.

    I don’t even know where to begin but let me say this: If they had accused me of pretending I was michael jackson’s sister, I would have been less surprised! We were accused of the most outrageous, hideous, unthinkable, unimaginable thing and authorities were called “just to be safe.” We have been attacked and surrounded by grief. The “godly” leadership started it all.

    How it relates to our special needs child is that she was manipultated, misunderstood , prompted to say things she didn’t even know a thing about. She had no idea of how to stop the narrative. Just doesn’t have it in her to (yet) to turn a conversation around. Lacks the verbal proficiency. Let me tell you, while racism is on everybody’s radar as it should be, there was a huge dose of “otherness” in this church action. Because they never, not once, would ever in a million years consider doing this to our bio children. No way. I realized after all these years that they don’t see her, our adopted child, as a legitimate member of our family. Shame. On. Them.

    We are done – out of there and blown away by how little these supposed friends actually cared. Dare I say we were used?

    These people have seen my child several times a week for years. Evidently, they never really saw her or took five minutes to really get to know her. Because if you spend 10 minutes with her you realize she has expressive and receptive deficits. Only an evil person would exploit her so as to advantage themselves.

    Over the years I’ve been humbled again and again times 100 thousand, at church. The way we are raising this child required a complete paradigm shift. It’s good. We feel good knowing that we are doing everything we can to (try) and raise her up in the way the Lord would want her to go. We are forever devoted to her as she is to us.

    I thought I’d be burried at this church – that we all would. We loved it through thick and thin and were committed to the end. But that was before they exploited my daughter’s weakness. Their actions have destabilized her and nearly extinguished all what she once held dear. So I forgive them but will never forget and there will be no reconciliation unless they admit they are repentant. They won’t.

    Good news, though! We were forced to explore – now at a church that not only accepts and accomadates special needs but embraces them as equally important members of the community. Not hubris. I knew it was was a concept but didn’t believe it was happening anywhere in reality. Wow. Wow. We were dumb to waste decades – to be so principled about our commiitment to our church when it was way more work for us than it was beneficial (due to child’s needs).

    In a million years I never imagined how God could use the pain they’ve inflicted on our family, for good. But He has. I’m here to share that church can actually be a highlight, a blessing for the entire family not just those artifically placed on the top of the pecking order.

    So FWIW, Susanna, sometimes it is the most loving thing a mom can do – to dedicate time to refresh and renew oneself. I wouldn’t spend ten minutes on deliberating other people’s truths. Because that’s all it is – theirs. Not yours. I can hear that this has been eating away at your for too many years. I’m so glad to hear that you are owning it – remember there are no do over’s in life. Staying home at this point is a valid way to worship. People who only have typical children have absolutely no idea of what 12 continuous hours of your life is like. No idea. Together (as in with the grace of God) you can do hard things. Using Sunday to renew and refresh yourself is good and right.

  9. Susanna says:

    Cassandra, no other comment of yours has come through; maybe try again? I’m always interested to read what you have to say!

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