If you’ve never heard of Duchenne, also known as DMD, you’re not alone.

Duchenne is a rare and fatal genetic disorder that affects 1 in 5000 boys. One of those boys is our youngest son, Danny Boy. You can learn more about DMD by visiting the Parent Project.

Every boy with Duchenne is unique and progresses differently. For Danny Boy, he’s progressed quickly. I could list the surgeries, the many doctor appts, treatments, and machines he depends upon, but the bottom line is that he needs a cure.

Danny and all the other boys with DMD need a cure.

Danny and all the other boys don’t need more treatment; they need a cure.

We aren’t trying to be ungrateful.

We’re thankful for the treatments and the advancements in care.

We’re grateful for the resources invested, and the time you’ve spent so far.

We just ask, please don’t give up. Keep going, because we need a cure!

This disease isn’t waiting for anyone to figure out the costs. It’s not discriminating on the next boy who’s lost.

The progression of this disease is happening right before our eyes.

As parents, advocating for our sons, we plead with you to hurry because we can’t fathom the thought of our sons losing this fight.

With a heart of gratitude

To the countless people in the trenches fighting for a cure, from the researchers, physicians, therapists, advocates, and many others, thank you.

I know you must get tired, frustrated, exhausted, and even mad.

I understand.

Please keep fighting, and know you’re not fighting alone.

I may not be on the steps of the Capital advocating by your side. I may not be in the lab working on the latest gene therapy with you, but believe me, when I say, I’m fighting right alongside you!

I’m fighting insurance companies, feeding machines, breathing machines, and medical equipment galore.

I’m fighting the fear of “what if” and to be honest, some days I’m just fighting to keep it all together.

Duchenne Dreams

Wouldn’t it be nice if someday we could say, “Back in the old days’ boys born with DMD died without a cure- not anymore!”

Wouldn’t it be nice to see these boys grow into men who took their place in society as leaders, influencers, and the world-changers they are?

Duchenne awareness isn’t just about dreaming of what could be.

No, it’s more of a plea, don’t forget these boys.

We can all fight to find a cure.

Join the Fight. End Duchenne.

You can learn more about Duchenne (DMD) by clicking on any of the links in this post. Parent Project is leading the fight to end Duchenne.

Will you join us and help find a cure?

You don’t have to be a scientist, researcher, physician, or philanthropists.

We need all hands on deck!

What do you say? Will you help us find a cure?

Until our next chat,

Mrs. Joseph Wood

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When a crisis or abrupt change of life occurs, it can be difficult to express our needs. It’s no different for parents with special needs children. Depending on the needs of our child, we may get better at navigating the changes of routine, Dr. appts, surgeries, and special education, but we never get to a point where we don’t need help. Asking for help can be difficult for many reasons. Many times we’re not sure what we need. Other times, we don’t know how to ask, and other times we feel guilty for the asking. Today, I will share 7 ways to help parents of special needs children. If you have an idea to add to my list, please post in the comments. I love the participation of all our readers.

Take the time to get to know their individual needs

Parents with special needs children need to navigate the world differently than you might expect. When I am invited to an event, my brain starts racing. I start evaluating if we should accept the invitation or not. Will my child have access in his wheelchair, will the lights be too bright, or the sounds too loud, will there be too much stimulation or games he can’t participate in or won’t enjoy. If I say yes to this event will he feel included or excluded?  I don’t expect others to know what our needs are, but you can bet your bottom dollar I know the people who have taken the time to understand our needs and consider them before planning an event. They didn’t ask me 100 questions; they are friends who spent time with us and asked questions in a nonjudgmental, conversational style.

Be careful what you say

Whoever said, “Sticks and stones may break my bones, but words will never hurt me” was dead wrong. Words do hurt. If you notice something that is out of order, think before you speak. Some people speak out of nervousness. It’s okay, I get it, but my son doesn’t understand. After Danny had his G-tube surgery, I remember telling the surgeon one of the best benefits of the G-tube over the NG tube is that no one can see it. I can go grocery shopping and not have anyone stop me to ask, “What’s wrong with you son?”

Don’t get me wrong, this is a question I don’t mind answering, but in front of my son, in the middle of the chip isle well, that’s just a little weird.

Pray for them

Having friends you know you can send a text to that says, “pray” is huge! I can’t tell you the times we’ve been in the hospital, and I have needed prayers. I didn’t have the time or the emotional energy to explain why but I had friends and family I could text and knew they wouldn’t drill me for details but they would faithfully pray! Be that friend who can say, “I don’t need to understand what’s happening. Write when you can. In the meantime, know I will be faithful to pray” and then do it!

Help with Errands

There has to be a level of trust built in the relationship for someone to let you come in and clean their toilets, at least in my house there does. When people help me with errands around town or projects around the house, it has been an incredible blessing. It’s easy to feel like you’re always behind in something. If you’re on top of doctor appts, then you’re drowning under the laundry pile. If you’re on top of house cleaning you’re behind in making dinner. It’s a vicious cycle at times, so make yourself available to help with any errands you can do.

Bring a meal

Bringing a meal is especially helpful when there are surgeries or extra stresses on the family. You don’t have to be the next Paula Dean to be appreciated. I know it can be challenging to take a meal when there are multiple dietary needs in the home. It’s not unusual for parents with special needs children to make different dishes for different family members at every meal time. It can be overwhelming. To have a “night off” because a friend took time to bring a meal is a huge blessing.

Send a Card (maybe even include a gift card)

In our digital age sometimes we forget the value of a card received in the mail. It’s nice to go to the mailbox and see a handwritten note from a friend. You don’t have to write something profound. Just saying, “I was thinking of you and wishing you a beautiful day” would be a blessing. Those random notes of encouragement, even when they have been digital, have always meant a great deal to me.

Send a Gift Card

If you send a card like suggested above you might want to include a gift certificate. It doesn’t have to be a gift card for an expensive dinner it can be a gift card to Amazon, iTunes, or even a simple five dollar coffee card would be a gift so they can treat themselves to a coffee.

Other Ideas

This list is not exhaustive, and I’m not speaking on behalf of everyone. So please, take a moment to comment and share your ideas on how to help. Together, we can make a list that can be a help to others.

Until our next chat,

Mr.s. Joseph Wood

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How to be a friend when your friend doesn’t have a child with special needs.

First, let’s review a few essential elements from last week’s post.

• Friendship etiquette is necessary no matter how old or how diverse our lives might be.
• Friendships have challenges.
• Friendships add value to our lives.

This week, I have three areas where we can give some extra attention to enrich our friendships. So, let’s get started.

Communicate

We need to take the lead in creating healthy, open, communication between our friends. Don’t wait for there to be a problem. Discuss views, share experiences, and do it with grace. Often, I hear women with special needs children talk about how they “educate” others about their challenges, but in reality, we need less educating and more communicating. You see educating is one-sided. It’s like we have all the answers.

Let’s face it, we see and experience struggles of doing the simplest tasks. We can see problems that other people just don’t even think about because they don’t need something to be fixed. If we can’t talk about these experiences in a way that inspires change; then we’re just going to keep being frustrated. Honestly, none of us want to have a friendship that is constantly “educating” us. Friendships, like that, eventually lead to isolation. Wouldn’t we prefer a friendship of collaboration that merged two different experiences to make it better for everyone?

Here are a few questions you can use to get started talking. Remember to meet your friend where they are. Don’t listen with a critical ear, but with grace.

• What’s the biggest challenge you’re facing right now?
• You’ve often supported me, how can I be a support to you?
• Is there something specific I could be praying about for you?

Celebrate

Your friend needs to know it’s safe to celebrate their child’s success with you and discuss their struggles. They need support in their parenting, just like we need help in ours. Friendship etiquette is critical. Many times we can forget that while we’re happy to celebrate our friend’s success, it can make our friends feel awkward.

We can forget that some of our friends have had to process their own level of grief and sorrow for our child’s challenges. They may feel guilty that their child is passing our child up in specific areas. Maybe they worry about participating in activities our child won’t be able to do. This is why communication in our friendships is so important. We need to be able to reassure our friend that we want to celebrate with them just like they have celebrated, and at times, mourned with us. Healthy friendships are never one-sided.

Friendship should be about celebration make sure you’re sharing the victories and the laughter.

• What went well for you and your family this week?
• What’s the funniest experience you’ve had this week?
• Set aside time to scrapbook special moments together.

Create

It’s vital that we create an environment where everyone can thrive. Sometimes this isn’t easy to do. I remember my daughter, trying to plan a birthday party for Emmy where Danny would feel comfortable. She was looking for party ideas for children in Danny’s situation. Bekah got online and did research, spent time on Pinterest and still called me completely frustrated. “Mom, I’m so disappointed by the lack of party ideas for children in a wheelchair with sensory issues.”

Friends, we have a beautiful opportunity to create a better world for everyone if we cultivate friendships built on healthy communication, celebration and collaboration.

• Plan a party together where all the needs of each person attending are taken into consideration.
• Work together, within, your community to create environments that welcome all families and children.
• Together, create a menu of snack ideas that work for the needs of both families.

I know it’s not easy, there are many times we don’t have the energy to finish our basic daily routines. It gets frustrating when you’re trying to build healthy relationships with people in your community and you don’t feel that you’re very successful.

Take your time. Keep trying. It’s going to be worth all the effort, I promise.

Until our next chat,

Mrs. Joseph Wood

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Danny has DMD. He is unable to get around very well. He often sleeps 15+ hours a day. At home, Danny spends most of his day sitting with his brothers or laying in bed. He has difficulty playing with others for more reasons than just his physical limitations.

It’s hard for Danny to trust other children won’t run him down, leave him behind, or race to take a toy away when they see he’s heading towards it. He has gone through multiple surgeries and experiences that have created a “say no first attitude.”

Danny has a few sweet friendships with children who took the time to slow down and see past Danny’s fears and limitations. Miss Emmy just happens to be one of those children. She is often the first person he asks for when he wakes up.

Miss Emmy has grown up around Danny, so she instinctively knows to pick things up for him or tell a grown-up when Danny needs help. She’s learned she can’t bump into Danny or he’ll fall over so, for the most part, Emmy plays gently around him (there are times she gets excited and forgets, but those moments are rare.)

Emmy’s learned that “it’s not all about winning” as she now tells other children. She often lets Danny win not because she feels sorry for him, but because friends help friends win in life- that’s what friendship is all about.

Emmy’s learned that friends hold friends accountable, and friends forgive.

Friends are there to encourage you to keep trying.

Friends celebrate your best without comparison to someone else’s best.

We could all learn a great deal from Danny and Miss Emmy’s friendship.

Have you ever wanted to be a friend to a woman who had a child with special needs?

Maybe you already have a friend like this, and you just feel confused by some of her responses (perhaps even a bit hurt).

Let’s face it. Friendships can be challenging no matter how old we get or what circumstances we face. Most of us learn friendship etiquette from our earliest childhood experiences. We learn to share, speak kindly, listen well, help others, forgive, and the list goes on.

We may even learn how to be a friend through times of grief, but few of us have the opportunity to be a friend to someone who faces daily obstacles as they maneuver through the routine tasks of the day. Maybe that’s why our friendships with moms who have special needs children are as tricky for us as they are for our children.

Do you ever wonder how you can be a friend to your friend who has a special needs child?

As I sit watching Danny play with Miss Emmy, I realize how much we can learn about the friendships we have with others who see and experience “normal” different than we do.

I compare their friendship to what it would be like to watch two children from different countries and cultures trying to communicate. If you’ve ever had a friend, who has a child with special needs, you might feel the same way.

It’s not just the fact that you’ve had to google medical terms she used in conversations like you should understand what it meant. It’s all the other things too; her parenting is different than your’s, her schedule, her meals, her vacations, all of it seems different than your experiences. It’s as if one of you speak French and the other speaks Italian.

As a mom of a special needs child, I thought I would share five lessons we can learn and apply from observing Miss Emmy and Danny Boy’s friendship. I hope they are a blessing to you as you navigate your friendships with women who also happen to be moms of special needs children.

5 Lessons We Can Learn From A Childhood Friendship

1. Slow down- When it comes to friendships, mom’s who have children with special needs have similar hesitations to Danny. They don’t want to be run over or left behind. And don’t think they haven’t had it happen before. They have good reason to be guarded. They have been put under a microscope and critiqued by others often. Many of them have learned to have a “no first” response because honestly, it’s just safer and less drama when they do.  So slow down and let them say no first and then wait and try again, and again, and again.
2. Friends help friends win. I’ve witnessed Emmy set Danny up for success more times than I can count, but it’s not one-sided. Danny is the first to advocate for Emmy when he believes she is misunderstood. Healthy friendships should always cheer each other on to win.
3. Friends know “it’s not all about winning.” Emmy is very competitive, and for a good reason, she’s smart, quick, and exceeds the ability of most children her age. It would be easy for her to be self-centered and consumed with the idea of winning, but instead, her mommy keeps teaching her, “it’s not all about winning.” Emmy has learned that coming in first isn’t always winning. So how can we apply this to our friendships? Well, we need to know that while we may be very capable, smart, quick and successful, it doesn’t mean we have all the answers for our friends. Sometimes winning in these situations is just listening.
4. Friends hold each other accountable All healthy relationships need accountability. Not the judgemental kind of accountability, but the grace-filled accountability. Be careful when you offer accountability. Make sure you speak in love to inspire hope, not in pride to justify your ideas.
5. Friends forgive. All friendships need forgiveness as they grow and mature. Moms who have special needs children are no different; they need your forgiveness as well.

All friendships take time to grow and mature.

Laughter, support, and love are the rewards when we give friendships the time they need. Don’t give up being a friend to your friend who has a special needs child. I know it’s not easy and it can feel like you’re speaking two different languages, but the truth is you both have a lot to offer each other.

Friendship etiquette goes both ways. Next week, we’re going to tackle the topic of how to be a friend to your friend who doesn’t have a child with special needs.

Until our next chat,

Mrs. Joseph Wood

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Then it dawned on me. I can share right here on the blog. If you share your list in the comments pretty soon we’ll have a great list of things we wish others knew about being a special needs parent!

Are you a special needs mom?

What would you want everyone to know?

Here’s my list.

Special Needs Parenting: 10 things I wish everyone knew

1. Just because I’m busy doesn’t mean I’m stressed.
2. My family and friends deserve a lot of credit (aka chocolate) for being able to love me. I don’t ever take it for granted.
3. I have gone 987 nights without sleep. If my child can sleep through the night, the beeping machines don’t.
4. I can laugh at myself. I can cry by myself. I’ve learned a healthy dose of both is best.
5. I know more about putting in a g-tube than most emergency room doctors do.
6. Without fail, Airport Security will test my child (because he has a g-tube) for bomb residue. (And if we’re “lucky” they’ll even broadcast it on the intercom to cause a panic).
7. I’m not a superhero.
8. The world gets a better version of me because of what God’s taught me as a special needs mom.
9. I am thankful, really thankful!
10. I would do it all over again.

There’s so much more I could add to this list. The reality is that special needs parenting isn’t ever the same. Some days we got this and other days not so much. What you need to know about me today may change in some fashion tomorrow. Life changes fast in a special needs home, and other times it seems like the days drag on way too slow.

Let’s have some fun and put our lists together.

Make sure you leave a comment with your list of what you wish everyone knew below.

Until our next chat,

Mrs. Joseph Wood

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