Amy and the Iowa State Fair Queen

In yesterday’s post, guest blogger Amy Stout described her worst nightmare – being separated from her daughter Kylie in a crowded place. She also shared the seeds of the solution that could put her dream to rest forever. A fashionable safety harness. In this post, she explains the process of designing the halter and shows us pictures. Prepare to be impressed!

A Fashionable Safety Harness

I shared my thoughts about a fashionable harness with my mother-in-law who is a wonderful seamstress. While she was, at first, intimidated, she quickly embraced the idea and began to experiment with ways to help me create the ideas that had been forming in my mind.

This is what we came up with. We basically used a jumper pattern and created the harness to look like the top of a jumper – or basically a sleeveless shirt/tank. We used cute, breathable, fabric that could be worn with or without a shirt underneath (we didn’t want it to be uncomfortably hot or thick. We wanted it to be able to be worn underneath a jacket or coat of need be). We also used cute embellishments to enhance the design.

Front View

Back View

We decided to have it fasten up the back so Kylie could not easily undo it, and chose to have it snap so it was less noisy than Velcro would have been in public places.

We reinforced the side seems so they would not easily tear – even if Kylie were to pull against it in her eagerness to get somewhere or if she tried to make a run for it. We also had two connection points on each side so the force of the connection was distributed (again, protecting against tearing).

The Harness in Action

This worked fabulously! We found a tiny retractable cord with a pink handle that matched the harness. It was great to be able to give Kylie some run/breathing room while also having the capability of reeling her in/limiting the distance if the situation became crowded or dangerous.

We received so many positive comments about the harness and had many people stop us and ask us where we found it.

Milking the "cow" at the State Fair

How About You?

Have you ever adapted a product to help keep your child safe – or even come up with your own design? I’d love to hear about it!

What are your thoughts about a safety harness? Have you ever used one? Did anyone ever approach you in public or judge you for using one? I’d love to hear your experiences, how you responded and how they processed your response.

Amy

What’s your worst special needs parenting nightmare? Can you narrow it down to just one? Guest blogger Amy Stout can pinpoint hers in a thumping heartbeat. It’s the topic of today’s guest post. See if you can identify with her deepest fear…and with the seed of her idea about how to overcome it.

My Worst Nightmare

It is a glorious day.

I am clutching her precious baby hand tightly within my protective mommy hand. I love the feel of her soft skin and her little fingers spooning with mine. I often take a snapshot of these moments in my mind. I so treasure these seemingly insignificant little things.

We are at the Iowa State Fair and it is so crowded! People are jostling us and bumping into us. I squeeze my little girl’s hand tight. I know she doesn’t like crowds, or sound, or light, or noise… but it is the State Fair… there is so much to see! I don’t want her to miss out!

In one hand I am balancing all of our “fair loot” piled precariously high. In the other, I hold my greatest treasure: The baby girl that I waited and prayed for longer than I care to remember.

The Reoccurring Dream

The heat is stifling, people are cranky, babies are crying, papas are scolding. Someone bumps into me from the left and my pile shifts… it begins to tumble. I drop my girl’s hand to catch the mementos of our day. When I reach for her again – just a split second later- she is… gone.

I frantically turn around – my head is whipping back and forth as my eyes search the crowd… she is gone!! Where is she? I catch a glimpse of her several feet away – scared – really scared. My heart catches in my throat- I literally cannot breathe- I try to scream- nothing comes out. I push against the crowd, but I can’t get through fast enough. I see her turn in circles-disoriented- looking for me. I see her start to panic, jerk, the people are getting too close – she runs…

The people are so heavy! Why can’t I break through? When did I become so weak? Kylie! I am here! Why can’t you hear me? Baby, just stand still… I am coming! “Please!” I hear myself scream out loud. “Let me through!”

And then… it happens… one of two things.  It always happens… The things I dread the most… at this point, I see – literally see- a vehicle hit my baby or- even worse- I see someone grab her and take off with her!

It is always here that I wake up in a cold sweat, heart thumping, TERRIFIED of what I just lived through in my worst nightmare.

Anxious and Unreasonable Thoughts

I know these anxious thoughts are unreasonable and way overboard, but even so, they still come to me.  The other day I was reading aloud to my husband as he drove and I stopped mid sentence and said “Did you buckle her in?” He looked at me as though I had lost my mind and said “Yes”… the reason I asked is that as I was reading, I had this vision of her flying right by me in the front seat and going through the windshield.  (I KNOW!! so crazy!!  but this happens to me ALL the time!!  Talk about mommy fears on overload!!)

I do not know how people go through the loss of a child. Having my daughter hit by a car would be a tragedy, but having her kidnapped- to me- is far worse. It would be everlasting torture wondering where she was, if she was alright, what was happening to her, Did she miss or want me? Were people hurting her? Did she think we abandoned her?

While having everyone – and I mean everyone – stop us and tell us how beautiful our daughter is (and we can take no credit – as she is adopted) is so much fun, it is also extremely scary as I know my girl is a target for predators. People are always watching her.

Seeking a Solution

It was after one of these horrifying dreams that I began to put my thinking cap on and explore ways of keeping my daughter more safe. The “easiest” way was to utilize a safety harness, but with so much controversy surrounding these, I really didn’t want to go that route.

I had even recently read an article that said that parents who used these were “lazy parents” – I wanted to jump through the pages of that magazine and throttle the author. They obviously have never parented a child who experiences special needs – let alone autism. “lazy parenting?” let me trade places with them for One single solitary day. They would change that description faster than they could sharpen their pencil.

I finally decided that I didn’t care what other people thought, a safety harness was the best option for keeping my daughter safe.  So, I began to dream up designs that would be more acceptable in public. Designs that would be more fashionable and less offensive to people who do not understand mental health issues or autism in general.

Can You Identify with Amy?

Are Amy’s emotions similar to yours? Can you identify with her struggles? Or do you struggle with different emotions? Leave a comment about the emotional battles you face as the parent of a child with special needs. And come back tomorrow to see the safety harness Amy designed for Kylie. It is amazing.

Until then,
Jolene

Raising kids with special needs isn’t easy when parents have a strong marriage. The difficulty increases when a family experiences divorce. The difficulties encompass day-to-day concerns and also legal issues related to kids with special needs.

The Financial Planning Association

An informative article at the Financial Planning Association (FPA) can help parents in that difficult situation. According to their website, the organization provides “personal financial planning experts in the U.S. and includes professionals from all backgrounds and business models. We help connect thousands of consumers to competent and ethical planners who uphold the FPA Standard of Care.”

Divorce and Your Special Needs Child

In their article about divorce and special needs kids, the author explains the importance of addressing these issues when faced with divorce:

• visitation schedules
• parenting plans
• child support
• special education
• transition planning
• public benefits planning
• spousal maintenance (alimony)
• estate planning

Neither the author or me believe the article is a substitute for the services of a good lawyer. But the article provides a good list of items to address when meeting with legal counsel. To read the complete article, click on this link.

Share Your Expertise

If you know of other issues parents of kids with special needs should be aware of, please leave a comment. Any resources you can share concerning this difficult subject would also be appreciated.

Thank you,
Jolene

A variety of special needs perspectives are welcome at DifferentDream.com. That’s one reason guest bloggers are encouraged to share their stories. (Excuse the bunny trail, but more blogging dads of kids with special needs would add a perspective presently in short supply.)

Okay, back to our regularly scheduled blogging topic.
What was the topic?
Ah, yes. Different perspectives.

Different perspectives make me think outside the box, which is what happened when I ran across a story on Huffington Post.

Enter Carla Lohr

The story was by Carla Lohr. She has the rare distinction of having grown up with a special need, Spina Bifida myelomeningocele, and having a son with Spina Bifida Occulta. (Rather than go down the bunny trail of explaining those birth anomalies, I’ll wait patiently until you’re done clicking on the links and come back vor the rest of this story.) That’s a pretty unusual perspective, don’t you think?

Sitting on Both Sides of the Fence

Interestingly, making the jump from patient to parent wasn’t as easy as Carla thought it would be. Here’s what she says,” I know that what I feel as a parent and what I know from growing up don’t always fit together. I have often found myself in a tug of war between my head and my heart.” That totally makes sense to me? How about you?

Read the Entire Article at Huffington Post

In the article, Carla is transparent about her misgivings when her son, now 13, went on a mountain hunting trip with his dad. If I tell you anything more, the impact of the article will be spoiled. So here’s the link to From Patient to Parent where you can read about how who won the tug of war between Carla’s head and heart.

What Do You Think?

When you’re done reading, come back and leave a comment about what you read. Or tell us about a time when your heart and head had a tug of war going. Your perspective is most welcome!

Jolene

Every now and then BLOOM (a blog created by Holland Bloorview Kids Rehabilitation Hospital in Toronto, Canada) pops up in a Google Alert. Every time I follow the link, it leads me to good stuff.

Three Ways to Strengthen Your Marriage

A recent vlog post with three tips to strengthen marriage impressed me for a number of reasons. First, the advice was from a parent with two kids who have significant special needs. Second, the advice was from the husband, not the wife. How often does that happen in special needs land? Third, parents don’t have be near a major metropolitan area with lots of services or earn a six figure income to implement these ideas.

Take a Look at the Vlog

Without further ado, here is an every day, ordinary dad giving every day, ordinary ideas for strengthening marriage:

See What You Think

If you’ve never visited the BLOOM website, take a look and see what you think. Then come back and share your thoughts in a comment. What do you like about the site? What was your favorite find? Be sure to leave links so we can go there, too.

Jolene

Last month, an interesting tidbit landed in my inbox, thanks to a Google alert. This one was about a new documentary in the works to encourage dads who have kids with autism.

NY1 Report about Charles Jones

The Google alert link led to a two-part story about film maker Charles Jones. He’s also the father of a son with autism. He wants to encourage dads to get more involved in the lives of their kids and to reach out for support. Click on the links to view Part 1 and Part 2 of the story.

Sounds Like the Parenthood Story Line

The report is similar to one of the story lines in one of my fave TV shows, Parenthood. When nine-year-old Max is diagnosed with Asperger’s, his father, Adam, has a hard time expressing or even acknowledging his emotions. Max’s mom, Christine, is much more open and practically has to drag Adam, who is a good husband and dad, to accept reality.

Autistic Like Me: A Father’s Perspective

The NY1 story didn’t say when the documentary is to be released. The Autistic Like Me website says the anticipated release date is Fall of 2011, but an internet search revealed no announcement of a release yet. So if any of you DifferentDream.com readers unearth any more information, please leave a comment.

Thanks and Happy New Year!
Jolene

Yesterday, guest blogger Nancy Flanders talked about two issues parents of kids with special needs should consider when thinking about expanding their families – level of support and finances. Today, she shares four more issues to help parents gain clarity about their family’s future.

On Having More Children, Part 2

#3 – How’s Your Faith?

How is your faith? Seriously, faith matters. For those with faith, special needs aren’t a curse, but part of a plan. God doesn’t wish for us, especially children, to suffer. It breaks His heart too. But He finds use for our suffering, as in John 9 when the disciples ask Jesus why the man was born blind. Jesus answers, “this happened so that the works of God might be displayed in him.“  We know that we as parents aren’t choosing to have a child with a special need. We are choosing to have a child. This is a gift, no matter what the future holds. We must have faith in order to survive. And your level of faith will make a difference in whether or not you could handle having another child with a special need.

#4 – How Does Your Spouse Feel?

How does your spouse feel? This is obviously important and should not be overlooked. Planning another baby on purpose when your spouse isn’t ready or is uncertain is a bad idea. You should talk to each other and listen to each other openly and honestly before making the decision.

#5 – Are You Afraid?

Are you afraid? We are all anxious at times when wondering how our decisions will affect the rest of our lives and the lives of others. But you shouldn’t let fear be the reason you make a decision. Logic and reason, trust and love should play a part. Fear should never win.

#6 – What About Adoption?

What about adoption? You don’t just have to add to your family biologically. There are thousands of children waiting for a home, and more are born every day. But this is just as big a step as having a baby and all of the above considerations must be taken into account.

Only Time Will Tell

There are plenty of other considerations when deciding if you should have another child who might have a special health need including your living arrangements and your ability to give attention to each child. But for each setback, there is a solution. You just need to be willing to find it. It all comes down to what is best for you and your family. As for mine, only time will tell.

What Would You Add to the List?

What do you think of Nancy’s list? Does one of the items speak to you? Do you have more considerations to add to the list? Leave a comment to share your wisdom. Nancy and I would love to hear from you.

Thanks for sharing your wisdom, Nancy!
Jolene

Trust guest blogger Nancy Flanders to face tough special needs parenting issues without flinching. Today, she begins a two part series near and dear to parents of kids whose special needs have a genetic component. Nancy tackles the issue with a list of six item that give her (and hopefully you) more clarity. In Part 1, you’ll read #1 and #2 on the list.

On Having More Children, Part 1

I always wanted a big family. And by big, I don’t mean “Duggar big”. I figured 5 kids would be good because (A) I come from a family of 4 kids and (B) I like odd numbers. But by the time I got married (at age 28) and waited for my husband to be ready (age 30), I felt like 3 would be a good number. But then our first child was born with cystic fibrosis. And when you have a child born with an incurable, life-threatening, horrible genetic condition like CF, there is an immediate sense that having more children would be wrong.

Surprise, Surprise!

Fast forward one year and three months and I was pregnant with baby #2. I still was unsure if we should have more children, but God answered back with this great surprise. And now we have two little girls, one with CF and one who is a carrier of CF like me and my husband.  I should be thankful for what I have, and I am. But I still want that one more. I still feel like there is one more person that is suppose to join the family. I can’t shake it. I’ve heard plenty from the peanut gallery. The most common is, “What if that baby had CF and then you’d really have your hands full.” Plus, “Your non-CF child would be lost in the shuffle.” And there’s the, “People with CF aren’t suppose to be around each other so how could two with CF live together?”  Lots of questions.

Make a List

So, how does a person like me make a decision like this? With a list.

1. Do you have a support team? There needs to be people in your life who support you in more ways than the occasional phone call vent. There should be people who understand your rules and needs when it comes to your child with special health issues, and who understand the needs of that child and any other children you have.  They should be well-versed in treatments and schedules and medications. They should be able to do everything that you do for your child just as well as you do. This not only offers protection for your child should something happen to you, but allows you a much needed, worry-free break from time to time.
2. How are your finances? You should definitely consider your finances, and I don’t mean income. I always say that it doesn’t matter how much you make, but how you spend it. If you are strapped down with medical bills, having another child who might also have an expensive medical condition might not be a great idea. But, if you figure out ways to get rid of medical expenses and so-called “latte” purchases than you might be able to swing it. For example, my state offers great coverage for children with special needs and also for children living within certain household income ranges.  If you and your spouse are both working and still falling behind because of medical expenses, you should look into the options that are available if you stay home with your child with special needs. We were advised not to put our daughter in daycare. So I stay home with them. Therefore our co-pay with our Children with Special Health Needs insurance is lower than it would be if I were working. Someday I will go back to work, but for right now it is best for our daughter’s health and for our expenses for me to stay home. To find out about the services in your state, just Google “Children with Special Health Needs” and your state name. If pride is all you have to lose, than what are  you waiting for?

Come Back for More Tomorrow

The first two items on Nancy’s list are plenty to think about for now. Tomorrow, she’ll be back with four more questions. In the meantime, if you have thoughts to share about what you’re read so far, please leave a comment in the box!

Thanks,
Jolene

Guest blogger April Brownlee is back with another serious-but-funny look at life as the parent of a child with special needs. Today, she’s obsessed by the questions that constantly run through her head. See if what she has sounds familiar.

Confessions of an Obsessed Parent

I think a lot about how rationally I do or don’t handle my daughter’s medical situation. I try to be proactive with her care, but in turn, am I constantly picking her over looking for something to be wrong? Sometimes I assume she can’t do certain things and then she does them and I wonder do I underestimate her too often? Or do I take it easy on her when she really doesn’t need me to cut her a break?

Finding the Right Balance

It’s so hard to find the right balance, but I feel especially challenged because my child falls into this “”gray” area. She has a syndrome and, from what I can tell, she’s somewhat mildly affected. For the most part, her symptoms can’t be seen. No one sees her spaghetti muscles. No one knows that sometimes she can’t muster the strength to walk another step and I end up lugging 40-pounds of five-year-old and curly hair around. No one sees something discombobulated in her stomach, resulting in all sorts of bizarre GI difficulties. No one sees these things but those of us who care for her. And in so many ways, I think that makes our job harder. No one is cognizant of the challenges Catie faces each day. And if I bring it up, I’m often met with confusion, because

(a) no one knows what Noonan Syndrome is and
(b) is she really that bad when she looks so good?

And since most people don’t see Catie’s issues, if I complain or cry or worry, will people think I’m begging for attention? Will they think I’m exaggerating the situation. Or worse, will those whose children are more affected think I’m pathetic and wimpy?

Questions I Obsess Over

I obsess about these questions from time to time. Not all the time. But sometimes. Like recently, when I decided Catie needs a new stroller. A bigger stroller. A special needs stroller to accommodate her as she grows. Not some ginormous contraption. Just an umbrella-type stroller that will allow us to always have a seat for her. She can walk just fine, but she fatigues easily and has chronic leg pain that often leaves her screaming in the middle of the night. I felt sheepish asking our physical therapist for a letter of medical necessity so insurance will help cover the cost of the stroller, even though I knew she would understand. I felt very ridiculous asking our pediatrician to write a prescription for a stroller.  Yet, I felt empowered when I picked up the script with the words “Maclaren Major” written on it. And then, I felt deflated when other parents cautioned me about what people will say when they see a big kid in a stroller. I can read their disaproving glares now.

Good grief. Make that kid walk. I swear, parents today…

And worse, will they think I’m completely malfunctioning when they see Catie in a stroller and her little brother is walking? Probably, considering most people take one look at Catie and have no idea about her condition.

A Profound Tex-versation

Not long ago, around the same time I was contemplating having a pity party for Catie (and for me), I had a profound conversation with my husband’s cousin Leslie. By text. Because, it seems, we mom’s can’t manage to find time for actual conversations anymore. God bless Steve Jobs because I am convinced that without my iPhone I would be out-of-control-unorganized and completely devoid of friends.

Anyway, back to the text-versation. I thanked Leslie for a book she bought for me, which happens to be the original Different Dream book.(Maybe you’ve heard of it?) Leslie’s 18-month old is diabetic. I worry about them. And it was nice to know she thinks of me, too.

ME: Thanks for thinking of me! We moms of kids with issues have to stick together!”

LELSIE: I hate to put myself in the same boat as you because I don’t feel like my struggels compare to yours. I don’t know if I’m in denial about the seriousness of it or if it’s really not that bad. Maybe our struggles are just different. But equally “bad” so to speak.

ME: Oh my gosh! Diabetes is awfu!. I can’t imagine! I think you have it worse than me! But, I’ve learned that no one has the right to make you feel like your trials are trivial. Unless someone has been in your shoes, it’s unfair to judge. And I agree, our situations are different, but bad enough to change our lives forever and make it all so much harder.

LESLIE: It’s funny to me that neither of us would want to swap even though we don’t necessarily enjoy our struggles. That’s why I say each person has to deal with their own situation and can’t compare to other people. Your struggle is yours and mine is mine AND they all SUCK!

Realizations in Hindsight

Looking back on that conversation I’ve realized two things:

1. I abuse exclamation points, and
2. Leslie and I both shared great words of wisdom with each other, but apparently, we haven’t managed to sell it to ourselves.

That conversation was full of things I should repeat over and over and over to myself:

• No one has the right to make you feel like your trials are trivial. Especially if they haven’t walked in your shoes.
• Our struggles are different, but they’re still struggles that changed our lives forever.
• And they all suck.

But in the end, I’m still so grateful for what I’m constantly learning from all of this. For as much worrying and contemplating as I feel I do, I’ve also come to the realization that it all has made me me so much more grateful for every single minute of life.

Confession Time for You

I won’t ask if you can you identify with April’s propensity to obsessively question her performance as the parent of a child with special needs. Instead I’ll cut to the chase and ask what questions obsessively run through your mind? This is a place where you can share them, knowing others will understand. So comment…obsessively if you like.

Jolene

One of the fridge benefits of blogging about special needs is meeting many talented people. Some of them are readers who leave comments, some of them provide resources featured in posts, and some of them are fellow writers. The woman you will meet today is both a DifferentDream.com reader and a writer.

Meet Jo Ashline

Jo Ashline came to my attention via a google alert that referred to the column she writes about special needs for the Orange County Recorder. The column, This Modified Life, led to her personal blog at www.joashline.com. In both forums, she tells the truth about life as the parent of Andrew, her son who experiences autism.

Transparency 101

If you want a lesson about how to be transparent and real about your struggles, Jo is the teacher for you. A column she wrote in early October still has me thinking, almost two months after she wrote it. In the post, she admits her struggle with panic attacks. More than that, she shares how those panic attacks give her a better understanding of her son. How they make her more compassionate. More caring.

Read the Column and Leave a Comment

You can read the whole article by clicking here. After you think about it a while, I hope you come back and leave a comment about what you read. And since Jo checks in on DifferentDream.com posts now and then, maybe she’ll leave respond to your comment, too.

Thanks for the lesson in transparency, Jo!

Jolene