Disability Concerns

Parent-To-Parent Support Area (Blog or Forum)

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My husband Ralph and I are parents to four beautiful little girls. We were both raised in the CR church, and we belong to a very caring CR community in the Niagara area.

Our daughters, Emily (9 yrs) and Sophia (7 yrs) are maturing and growing like most girls their age. Our daughters Rachel (4 yrs) and Janneke (23 months) are following a unique course of development and growth — often referred to as global developmental delay. There is no name for our two younger girls' condition, but they are similar to each other.

They are exclusively g-tube-fed, dependent on assistance with moving and transfers. They do not walk, talk, or roll over from front to back or back to front. They can sit unassisted for a short time, and they smile. Alot. They bring joy to others immediately.

We attend church when we can, but we often take turns going with the two older girls. Our church is ready to help us, but our girls are often ill, and our vehicle is getting tired of two wheelchair strollers, six people, and necessary equipment being crammed in however they might fit.

My email is regarding the development of parent support through the CRC Disability Concerns website. Has there ever been any discussion about forming an online parent group — either as a separate link or part of the blog? I would love to see this idea develop. It is more obvious than ever the importance of developing a virtual community for parents like us. In our immediate community, there is a children's treatment centre, and there is the promise of parent support from our church, friends, and family.

Yet, we would love to experience and share with other CRC parents of children with special needs in Canada/US. Maybe there's another family out there like us -with two kids that have no known diagnosis. We don't fit into the Autism or Down Syndrome groups; we are part of a misfits club. Certainly, we are connecting with and deeply appreciate our local community of many faiths and backgrounds, but we miss connecting with others who share a similar faith story.

Much of what we read with the DC material seems to focus on enhancing or developing ministry in church for adults or older children with special needs. I understand that focus. I have been involved with Friendship Ministry in the past — before my children were born — and the need remains for our corporate church to embrace all members (visible and invisible disabilities) beyond Friendship Club.

Yet, I am looking to develop a resource or virtual community for CRC parents to connect and share their concerns, joys, questions with raising special needs children —including but not solely focused on church/worship matters. How do you make it through your day? How do you respond when someone tells you that God will not give you more than you can handle?

What is your story?

spot - (aka Sara Pot)
thepotfamily.blogspot.com

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sara pot

Posted On

January 27, 2011

Updated On

July 5, 2018
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Bev Roozeboom on January 27, 2011

Hi Sara,

I appreciate your idea of an online support group for parents with special needs kids.  We have a 17 year old son with a diagnosis of bipolar disorder, anxiety disorder, adhd, and asperger traits.  He also struggles in school with learning disabilities.  He's really a mixed bag of lots of mental health challenges.  I'd say his biggest challenge (and therefore OURs) is his anxiety. 

He looks quite "normal" and often acts fairly age-appropriate in public, but this really masks the issues we deal with at home.  It's been quite a journey with him since we adopted him at age 2 months.  I honestly would do it all over again, though, for what God's taught us through this.

One thing I'm still learning is the benefit of reaching out to others.  That's one reason I was so drawn to your post.  We need each other!  And who better than fellow believers to support and encourage each other?  Thanks for raising the issue and suggesting an online support group.  I belong to an online support group for parents with children and teens w/ bipolar disorder, but it's usually pretty depressing.  Plus, you're not supposed to be too open about Christianity, faith issues, etc.

I can relate to the whole church attendance issue.  It's still very hard for our son to sit through a service.  We've pretty much settled into a routine of going to the later morning service and staying home at night.  He gets very anxious about the timing of his meds, and if we go at night he thinks we get home too late.  Also, we dropped making him go to Sunday School several years ago.  He just couldn't handle it...same thing with Youth Group.  It's hard, though, when you just want your child to be able to experience what the other kids do. It took me awhile, though, to realize it wasn't "bad" to not go to church at night or to not make Kyle go to SS.  We attend a fairly traditional CRC that I grew up in.  I'm finally understanding that the opinions of others are really not always so important!!  And in actuality, we've found our church to be supportive once we shared our issues more openly. 

I'd love to hear from more parents out there! 

Bev

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N. B. on January 28, 2011

Hi Ladies, This is Ken. I like your ideas and your stories. They are so familiar. I have MS in an advancing stage , I would love to participate on a P&P network. My family and I have lived in this realm for a long time. We have a lot of experience to offer for the issue's that (normal ) families do not understand fully. God bless you and all families whom He loves.

Ken

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sara pot on February 8, 2011

Looking over my post, your comments, and reflecting on conversations I've had face-to-face recently, I think the idea of parent support is valid, but how it will take shape remains yet to be seen.  There are some great resources linked in and through this website; I hope that creating more awareness for families with young children will expand that list of resources.  (I wrote my original post in haste, so I wanted to review my intentions.)

I think back to those early days when we were adjusting to the reality of having a new baby with so many anomalies.  We prepared to leave the hospital halls, and go home to.... a new normal.  And our church was ready to help us, but this journey is new territory for them too.  It wasn't as if there was a small group ministry at church with families like ours. 

I am thankful for the network of families we have met through our children's treatment center, and I hope as part of the Body, we can create even more opportunities of support for families like ours.  When families take their special needs babies home from the hospital, it would be great for their local church to be able to say, "We are here for you.  And if there's something we can't help you with, there's a global network of believers walking a similar journey."

We'll wait to see what God has in store for this idea.  If it sits for a bit, that's okay.  Sometimes, people need time to stew. : )

Peace.

spot

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Bev Roozeboom on February 9, 2011

Our journey has been a bit different than yours, in that ours has evolved over time.  We didn't immediately know that Kyle struggled w/ mental illness.  That's one of the frustrations of childhood mental illness.  It's not as "visible" as a physical handicap.  At the outset (and still today) it often looks like really bad behavior.  It's not always easy to know what's manipulation and what's mental illness (in his case, huge anxieties and roller-coaster emotions). 

But, my heart is always drawn to any parent who has a child w/ special needs of any sort.  We (parents of spec needs kids) live in a different world.  It's not a "bad" world, but it does feel very different than the one we fantasied about when we were little girls, right?!  Ours isn't quite so happily-ever-after.  We have challenges to face and mountains to climb that we never thought possible.  But one amazing truth I've learned is that with Christ ALL things ARE possible! 

I've written a Bible study for moms with special needs kids.  A few years ago, God laid it on my heart to do this.  This was and is totally out of my comfort zone.  But God has walked me through the process in amazing ways.  The book is at the publisher now (working through the editorial process), and I have no idea when it'll be ready for print.   I just believe there's a world of hurt and disillusionment out there -- especially for the moms who struggle daily with understanding why their child has these challenges.  My prayer is that this Bible study will bring hope, encouragement, and healing for all who participate in it.

Take care, Sarah.  God has blessed you with a beautiful family.  He's using you to be His hands, feet, and heart for not only your girls, but for countless others, as well.  I've read parts of your blog.  You have a gift!!

I agree with you that we'll just have to see where this support-group idea leads.  We have a some young couples in our church who have children w/ special needs.  I think I'll direct them to this forum (if I can figure out how).  I just sort of stumbled across it!  (hmmmm, or did God have something to do w/ that?!)

Bev

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innotuv on July 27, 2011

I found this blog looking for a bible study, such as yours so I am excited to check it out. I have a 13 yr old daughter with essentially the same +/- diagnosis' as your son. She is also adopted. She is currently in RTC due to no school placement and aggressive behaviors brought on by that lovely stage called puberty. Look forward to finishing this blog of mutually challenged parents. I am going to find your Bible Study : ) Laura

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Mark Stephenson on February 14, 2011

Sara, I like your idea and hope that others do too; I agree that we need to wait on the Lord for this.

Practially speaking, this would be quite easy to do within the Network. It would be a simple matter either of having discussions in the Disability Concerns forum, or of creating a new Discussion Network. A new Discussion Network could even be "hosted" in the same way that the Church Order Discussion Network is hosted by Henry De Moor.

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Tena Verhoef on February 10, 2011

Hello all.  I just signed up to share my 2 cents (don't worry, they're always free)!  I am a busy stay home mommy to 5 beautiful children - my son Caden is 8 and has Rubinstein Taybi Syndrome (RTS), my daughter Avery is 6, son Declan is 3 and identical twin daughters Macey and Madelyn are 19 months.  To say that God has blessed our lives with children is an understatement; to say that we expected everything we got along with them is also an understatement. 

Caden's diagnosis came when he was only 6 weeks old, though we suspected something from the get-go.  RTS is very rare, but is similar to Down Syndrome in terms of mental retardation levels.  Caden loves everyone - if only we who are "normal" could be more like him who is "not"!

Writing helps me process.  I've been writing in my own personal blog for several years, found at www.thisisournormal.blogspot.com - I wanted to encourage people also getting an RTS diagnosis that it isn't the end of the world, it's merely the beginning of a new normal. 

I would love to be able to share with other members of the CRC.  I would love feedback and love to hear that I am not the only one who questions, who worries, who wonders and who doubts.  Sometimes I think we fall into that pat answer of, "You'll make it with God's help" - while we know it's true, it sometimes feels like a finger-tip band-aid on a big ol broken heart.  I long for realness within the community of Christ.  I long for people willing to stand up and say, "THIS SUCKS!"

Let me know how I can help.

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Katrina Bosch on February 15, 2011

Hi everyone :)  Just popping in to introduce myself and say that I would also be onboard with an online discussion group for parents of children with special needs.  Our son is 7 years old and has Down syndrome as well as a repaired spinal anomaly and celiac disease (allergy to gluten - wheat/rye/barley).  We are in Chilliwack BC, we also have a 9 year old daughter and a 4 year old son and I work fulltime while my husband is retraining for a career in computers after a work-related injury.  Great to "meet" you all!

Katrina

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Nelly Sinclair on March 12, 2011

Hi! I am also a parent of a child with special needs...although she is almost not a child anymore. A while back I was really struck by a conversation I had with a friend. Her child had developmental difficulties. My child has mental health issues. I thought we would have very little common ground but I was surprised to realize that while the day to day issues of how to include our children in life and church were very different, the pain and disappointment of our experiences was very similar. I think this discussion is a great idea, and keeping it open to learn from each other, with all our differences is great too.

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Melissa DeVries on July 24, 2011

Hello everyone!  I find it encouraging to hear that my husband and I aren't the only ones going through these special challenges.  We have a beautiful 11 month old daughter that was diagnosed with a very rare chromosome disorder at 2 weeks of age.  We were told to expect physcomotor delays, mental delays, sleep and behavior problems.  At around 5 months she was also diagnosed with West's syndrome.  With the appearance of her seizures she lost her learned skills of smiling and cooing.  Currently she is still at a 1 month old level development wise and the doctors have not been very hopeful that she will develop any further or even gain back the skills of smling and cooing because of how poorly she has responded to her medication.  We have been told to expect severe delays and handicapps, both mental and physical at this time. We live in a a very rural community and have very little access to any type of support groups.  I would love to be able to hear other family's stories, advice, challenges and triumphs of raising a child who has special needs.  Because our daughter is so young my husband and I have been taking turns going to church and staying home with her.  When she is having a really calm morning we have tried to take her into the service but I'm always worried if she might disrupt other's worship.

 

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Mark Stephenson on July 25, 2011

Melissa,

Thanks so much for sharing.

Before I say anything about support groups, may I give you and your husband a little advice as the parent of an adult child with disabilities and as a pastor? One of the most common emotions that parents can feel in a situation like yours is grief, because you have to grieve the loss of the child you thought of and dreamed about before your daughter was born. This can be very disorienting for parents because you may wonder why you are feeling grief when you should be feeling joy for the gift God has given. That disorientation can lead to a lot of guilt - both guilt for the feeling that maybe you could have done something different to protect your child from the challenges she is now facing and guilt for feeling grief as you consider the little image of God resting in your lap. So I don't have much advice, because I've learned that mostly there is mystery in the kinds of things you describe and not much in the way of answers. My only advice is to allow yourself to grieve the dream child that has died, and learn about the stages of grief so that you won't be so surprised as you have to deal with them. As you work through the grief of the loss of your dream child, you will be in a better position to love the child that God has given you.

Concerning support groups, it will take someone to decide to get an online group going. I'd be happy to give some advice to you or anyone else about how to get something like that started. It will take some work, but not a huge amount.

I also want to highly recommend the fine new book by Bev Roozeboom, who posted above, Unlocking the Treasure: A Bible Study for Moms Entrusted with Special-Needs Children I suppose one could use this book for individual study, but it's intent is to be used in group setting. I could even imagine that it could be done online, live, via chat.

Blessing and grace to you and your husband,

Mark

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sara pot on July 25, 2011

Thanks for responding with your words, Mark.  Your experience contains wisdom to be shared.

To everyone who is leaving a comment, thank you.  I believe there is something gleaned in even the smallest stream of responses.  Over time, this may lead to more response and more support. 

 

Melissa, thank you for taking time to write.  My heart aches for you as I read your words as it appears you are just beginning this journey.  The challenges you explained with living in a rural community and having multiple issues with your little one make the "solution" that much more complicated.

Like Mark said, there is a grieving process that you never anticipated.  Trying to figure out how you are supposed to manage the day-to-day is challenging because there is no specific manual for your child. 

I have found it helpful to journal and write out - the things I miss, the things I grieve, the things I wish for, and the questions I have.  Our local children's treatment centre has helped us create a timeline of goals (very simplistic) that I have used to formulate some kind of daily routine.  The routine is as simple as writing out when we are feeding our girls, when we try play therapy, play music, go for a walk....  These are tasks that I took for granted with my older "normal" girls, but when I created a routine for my younger girls, it helped me balance the time throughout the day - so I wasn't lost in my worry or overwhelmedness.

I hope your church can find ways to connect with your family where you are right now -tolerating your daughter's sounds and behaviour during church, learning to help you care for her during the week, so you can step away and get a break.  Is there someone in your church already expressing an interest, or would it help to connect one of your elders/ministry leaders with someone in another church?  Our church is learning along with us, and we are blessed with a woman who advocates for families like us in a very compassionate and meaningful way that our congregation repsonds to and respects.  I am sure she would love to connect with someone from your church.

I say all of this, knowing full well that when you read it, it might be too much wording.  Maybe today is a crappy day, and you are struggling to make sense of something.  Or... maybe today is a great day, and you are trying to figure out your new normal. 
 

I hope we can begin making a connection.  The more we share and communicate, the easier we can anticipate what to say and how to respond - and we can meet each other where we are at in the moment. 

Peace to you.

If you are curious, I also blog:  thepotfamily.blogspot.com

Sara Pot

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Bev Roozeboom on July 25, 2011

Hi Melissa, thanks for your honest post. As I read it my heart ached for you and your husband.  I'm sorry you've been given this awesome challenge and I will be praying for you.  I'm sure this is not a road you ever anticipated traveling down.  Like the others, I don't have much advice.  I like the way Mark put it -- there is often more mystery than answers -- on this journey of special needs.  Every situation is different.  You'll find that as you go through life with your daughter, you will often encounter new challenges.  Some will make you want to throw your hands up in the air and yell, "I QUIT!" and with others you'll just quietly sigh and acquiesce to.  whatever :)

You will also encounter unexpected joys and triumphs.  Things that other parents overlook will be as precious treasures to you.  God will give you eyes to see Him in the little things of life.  If you are open to it, He will delight you in ways you never imagined.  The simplest and smallest milestones will be reasons to rejoice and celebrate!

Re-reading your post, I would offer the same advice as Sara.  Allow others to help you.  Check to see if there is someone in your church who would be willing to be grandpa or grandma to your precious little one.  Maybe there's someone just dying to be a special auntie to your daughter.  I hope someone has already asked how they can help.  If not, I would advise you to take the risk and ask for help.  We're put in community for a reason!

I, too, would love to see this online thing take off.  I'd be willing to help make a go of it, but I'm not sure how.  I know there are lots of hurting, confused, isolated moms and dads out there.  And we're all just a click away from each other.  So Mark, how does this work?  Would this 51 year old be able to tackle something like this?  (although if it's any indication, I totally lost my first response to this post!  I have no idea where it went.  I hope it's not on some other forum!) 

BTW, I blog once in awhile, too.  You can read it at bevroozeboom.blogspot.com. 

Blessings~

Bev

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Jonathan Wilson on August 8, 2011

Thanks to everone who has contributed to this forum topic.

Based on your comments we are happy to announce that a Parent to Parent Support forum has been created on the Network.  The Parent to Parent Support forum is for Christian parents of children (including adult children) who have disabilities. Check out this post on the Disability Concerns blog to learn more about the latest "place" on The Network.

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