Caring for Parents Who Have a Child with a Disability

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A statement on welcome and justice for people with disabilities by U.S. Roman Catholic bishops affirms, “Often families are not prepared for the birth of a child with a disability or the development of impairments. Our pastoral response is to become informed about disabilities and to offer ongoing support to the family and welcome to the child.”

Often when a child with a disability comes into a family, whether by birth or by adoption, the parents are not ready for the emotional, spiritual, and practical changes they must make to care for their new child well. Amazingly, the bishops anticipate this need and challenge church leaders to be prepared for just this challenge so that the church is ready to help a family when the family itself feels so unprepared.

One good example of being prepared is to help parents through the stresses that occur on the marriage when they face parenting a child with a disability. A study conducted several years ago found that couples with a child with Down syndrome had a lower divorce rate than the general population, if, and this is critical, they stayed together for the first two years after the child is born. The highest proportion of divorces in couples with a child who has Down syndrome occurred in the first two years after the child was born.

In this study, we examined the nature, timing, and correlates of divorce in families of children with Down syndrome (647), other birth defects (10,283) and no identified disability (361,154). Divorce rates among families of children with Down syndrome were lower than in the other two groups. When divorce did occur in the Down syndrome group, however, a higher proportion occurred within the first 2 years after the child's birth. Mothers and fathers of children with Down syndrome were much more likely to divorce if they were younger, had not graduated from high school, and if fathers were less educated and lived in a rural area. Few effects on divorce were noted for a variety of family structure variables. (Richard C. Urbano, Robert M. Hodapp and Frank Floyd. "Divorce in Families of Children With Down Syndrome: A Population-Based Study." American Journal on Mental Retardation: July 2007, Vol. 112, No. 4, pp. 261-274.)

Here’s where the church can play a critical role in family life. Church leaders can surround that couple with love and encouragement as they grieve the child they had been hoping to have and grow to love the child in their arms.

Pastors and church leaders may rightly object, “We can’t possibly prepare for all eventualities that could happen with regard to caring for people.”

And that would be right. I served in parish ministry for 17 years before becoming the director of Disability Concerns. I experienced myself and had many colleagues say to me, “Well, we never learned about this in seminary.” Life throws all kinds of challenges at people, and pastors cannot prepare for them all. However, considering that about 20 percent of the population lives with disabilities, pastors and church leaders must expect that people with disabilities will be part of their congregations, and they must help their congregations come to expect the presence of people with disabilities among them.

Learning about care for couples face who have a child who has a disability would be a very good place to start.

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Mark,

The family support is so important, as my wife and I have daughter, now eleven with down syndrome. Not specifically mentioned but you alluded to, is the need for respite.  Maintaining a strong marriage requires time as a couple together and that is tough for many parents especially those with children that have disabilities.  Finding the time to send as husband and wife and finding a trusted person(s) that can watch your child for a weekend together is hard.

Guide

Thanks for your comment. You are so right. Many kind people made it possible for my wife and me to have time just with the two of us. I assume that single parents of kids with disabilities need respite help at least as much as couples. Some families could really use assistance during worship times on Sundays too.

Sometimes, government agencies will provide funding for or will provide places for respite care. Churches can come alongside families too. Among other ideas for caring, this page on the Disability Concerns website has suggestions for setting up respite care in a congregation.

I cannot imagine that kind of support. I drive around buying coffee so I can talk to the barista's. I can't find support from my church can I cannot attend. Out of sight, out of mind. Illness is so isolating. I wish you would notify the churches that when people can't come or when kids leave to start their lives to keep in contact. I have asked maybe 30 times for some friendship once in a while ( mainly for my family) . But everyone is so busy with other priorities. I am a strong believer but everyone needs community. Your probably questioning my objectivity but I am speaking the truth. I understand why people can't find time and was on the other side of the fence for 42yrs. My family (extended) have been in crc for over 100 yrs. And can't believe this happening. But then again this isn't the same church anymore. The people seem focus more on religion than personal relationship with Jesus. If that were to change I know beyond a shadow of a doubt, that you never read a post like this. To a sick person church order and creeds mean absolutly nothing. Its about walking and leaning on Jesus. That is my only support besides my wife and kids. It is enough for peace but God doesn't promise us healing until death. This issue is indicative of the state of our denomination. They dont even support my wife and kids who due go to church. I have to care for my wife's depression about my disease in addition to my own. I cried out so many times that its much easer to look the other way. Yes this is happening in churches all over and it goes mostly unnoticed. Its hard to tell people that this should not be happening because most don' t to be involved or they show up and run because disease can be ugly and uncomfortable to be around. Jesus always talked about how one struggling believer was more important than a month of Sunday's worship yet not a lot of people think that way. It is not a numbers game that determines if a church is florishing in God's will. Everyone of you will experience what im experiencing when you start to die. I thought maybe someone would be interested to see what its like in the real world that everyone avoids at all costs. Its not that bad just lonely and filled God moments. But without anyone to talk to this information sits in my heart ready to tell people that you can find Jesus so easily when your sick. You know I have a mission to help people when I can. I have testified to strangers on a regular basis and have seen what God can due through broken people like me. I'm not angry just sad that our eyes are closed to least of these. Those that are sick and have Jesus are full of incite because your humbled and broken.      

Participant

Dear Mr. Invisible,  I would love to meet you (and your family) for coffee and talk about our mutual faith in Jesus...  you live in the Lynden area, right?   tell me when and where, and I (and maybe some of my family as well) will be there  =)... been praying for you, bro!

Sure that would be great. thx      961-5835

Participant

looking forward to meeting you... will give you a call Saturday some time  =)

Mr. Invisable, I hope and pray that you will get some company, some visitors.   Are you also the same mr. "nobody"?   It is difficult to be lonely, but perhaps you can find a way to help others somehow, and also perhaps a hobby that you might be able to share with others.   I hope   that you will find some soul-mates soon.    

Mr Zylstra,

 I sure feel like a "noboby" . Thanks for the kind words. It is nice to know that people are praying for you. I believe prayer can change everything. That is why I never pray for my heeling because I am a much better tool as sick and broken man with a wonderful wife but hurt wife and amazing Christain but hurt children. We as a family have entrusted ourselves to the Lords protection and have recieved it many ways with the exception my friends, family,christain school and church.  The great thing is we  still love them all enough to keep trying and to keep loving them so we can all be in glorious communion. We have so much to share and would love to be included in some way. My other comments are probably the result of frustration at trying many ways and times at mutiple church levels to get some help. Having a brother whose a pastor, 3  are or were elders. My wife lead praise groups and we help sponser a small group. I use to lead evening services before the pastor and actually preached sermons under pastoral guidience. taught sunday school, cadets and lead support groups in our church. I help start a startup coffee ministery with a local missonary couple including the, witnessing, start up costs and connvincing them to due it localy. I use to help run a street ministry at our church as the only unpaid leader. I telling you this so you can get a little picture of easily this can happen without malice or intent.

Hi.  You talk about not praying for healing....   But you seem to think that you are a better tool as a sick and broken man, a better tool for Christ.   However, if you are a tool, you should leave it to God to decide whether a broken tool is better than a 'fixed" tool.  Of course, we are all sick and broken, in the sense that we all need God's forgiveness and sustaining power of the spirit.  But our brokenness or illness cannot be a full blessing, I think, if we revel in it, or if we lack the ability to desire ultimately for the completeness and complete healing that God eventually gives us, if not in this life, then in the next.  

It would be sad if you were afraid to pray for healing....   Of course, God may decide to answer no.   But maybe the real healing is not a physical or even a mental healing, but a spiritual healing.  A healing of the spirit by the Spirit.   Where your illness becomes secondary, and does not provide the focus of your life, even though you may have to deal with it everyday.   Where hurts are forgiven, where repentance is real, where you are truly renewed.   Where the illness is seen as part of the sin of this world, and yet where God may turn evil for good in some way that you and all of us can be thankful for. 

I am glad to hear of your willingness to participate in so many ways to help proclaim the good news of the gospel of Christ!

Sorry, I understand what you are saying. Its a good wisdom spoken from experience and good intent. Thank You

I agree with you on what you said. I am trying to reach out for "my" people that I know love me and would help if we could have some honest dialogue. I understand why this happens better than most of the people because I have been on the other side difunction. I am the one who is being honest and laying myself open. I know the spiritual aspects of this. My spirit is hurt but fully engaged with a passion for healing for everyone. The people I refer to are my church and extended families are good people with good intent. I love them.

  As far as the my heeling is concerned, I probably gave the wrong signal to you. Of course everyone would like to be whole but I see the benifits that broken people recieve and provide to the Lord. Blessed are the poor spirit is very comforting to know. Thanks for your interest and advice. I listen or observe  all people I fill are acting out of good intent. I also have the assurance that ultimatly the battle is won. I still have to pursue a path to everyone's healing because that is the Lords command and make the only lodical sense.