Bev Roozeboom

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

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

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

Mark, you're right. I've never thought to ask this question before!  It's kind of an intriguing thought.  But honestly, my first reaction, was NO!  That's probably because the disability we live with in our home is mental illness, and all the challenges that come with that.  I can't wait until our son will be able to live and function in complete wholeness.  I look forward to the day he lives in happiness and true shalom. Even as I type these words I envision what the New Earth will be like for Kyle. No anxiety. No rages. No pain (real or imagined). No confused thinking. Peace, happiness, wholeness, joy.  Life as God originally created it.

One passage I love (about the New Earth) is Isaiah 65.  Along with the promise of "no more crying" (which we all seem to gravitate to) are listed several more beautiful promises.  God seemed to highight verse 23 for me one evening after an especially trying day with our son.  "They will not work in vain, and their children will not be doomed to misfortune. For they are people blessed by the Lord, and their children, too, will be blessed."

For me, it seemed as if God was giving me a big reassuring hug and said, "Bev, this is just for now. When I come back and establish the New Earth, I promise you that your son will be happy, healthy, and whole.  Just like I made him to be."

Just my two cents worth!

If I may, I'll add one more comment.  I was born with a birth defect.  My left hand never fully developed while in the womb, so I have only two "functional" fingers, my thumb and my pinky.  My index finger and my ring finger are just tiny pieces of cartiledge, and my middle finger (also just cartiledge) was removed when I was 16.

I HATED my hand when I was little and was very self-conscious about it.  But you know how kids are, they just want to fit in.  Oddly enough, though, I never thought of myself as "handicapped" ("different" yes, but not handicapped).  I wanted to take piano lessons (since my older sisters did), so my folks put me in piano lessons starting in first or second grade.  I thought it was weird that the teacher spent time looking at my hand (it made me uncomfortable, but I didn't know why she was holding it and looking at it).  I learned how to play the piano fairly well and did a lot of accompanying for groups as I got older.  It wasn't until I was in 6th grade, that the word "handicapped" was first used to describe me.  I played a piano solo for a school fine-arts program, and the judge complimented my playing.  "You play so well, in spite of your handicap."   That was honestly the first time I ever heard myself described as handicapped.  Satan used that opportunity to fill me with shame and feelings of unworthiness and insignificance. 

But as God is so fond of doing, He takes the very things we struggle against and with His healing power turns them into opportunities for His light to shine!  I believe He used my simple birth defect to mold and shape my heart into one that more closely resembles His.  He has given me a heart filled with compassion and love for the marginalized in our society. 

My hand is such a part of who I am -- who I've become.  I would be very happy to have this birth "defect" in heaven.  I don't think it would bother me at all!

Mark, thanks for sharing this on your blog today.  Wow.  Amazing stories, all.  My heart aches for so many.  But amidst the confusion, the pain, and the sadness are glimmers of hope.  Christ's light continues to shine in darkness.  Thank you for being a vessel of His light.