My son was born with Spina Bifida, hydrocephalus, and Chiari malformation. So it is important to us to continue to educate our friends and family how hydrocephalus affects our family. It’s not something that a simple surgery can fix. For us and every other family out there, it’s a way of life.

I want to share with you some important facts concerning hydrocephalus. I also want to highlight that this information was found from the Hydrocephalus Association’s website.

I did not come up with these facts on my own. But I felt they were worth repeating. So please share this information with your family and friends.

By raising awareness we can encourage others to fight for better treatments and hopefully, one day, a cure.

Did you know…

• 1 out of 770 babies will develop hydrocephalus. This makes it as common as Down’s syndrome and more common than spina bifida or brain tumors.
• The core technology used to develop the shunt has not changed significantly since the 1950’s!!
• Hydrocephalus is the leading cause of brain surgery in children.
• Hydrocephalus is a life threatening condition that affects approximately 1 million Americans. (I wonder what those numbers are for under-developed countries?)
• An estimated 50% of shunts fail within the first 2 years in children. This required yet another brain surgery!
• Over 36,000 shunt surgeries are performed each year (one every 15 minutes) and more than half of them represent emergencies.
• Anyone at any age can develop hydrocephalus.
• There are approximately 10,000 pediatric hospital admissions for shunt malfunctions each year.
• The most common surgical treatment for hydrocephalus is a shunt. This device is placed in the brain to drain excess fluid away from the brain and to decrease pressure.
• Hospital charges for hydrocephalus are over $2 billion per year!
• There is no way to prevent hydrocephalus. There is no cure. The only known treatment requires brain surgery.
• Hydrocephalus and a shunt can mean a lifetime of multiple brain surgeries. Dozens of brain surgeries are common.
• Nearly 40% of infants diagnosed with hydrocephalus develop behavioral issues and 20% will develop autism.
• Pediatric hydrocephalus alone accounts for more than 40,000 hospital admissions each year (433,000 hospital days.)
• 80% of Spina Bifida children also have hydrocephalus.
• The Hydrocephalus Association is the largest private funder of hydrocephalus research in the U.S.
• There are currently 10 drugs in testing to prevent, treat, or manage hydrocephalus.
• Hydrocephalus Association funded research has reduced shunt infections by 36%.

What You Can Do to Raise Awareness

Were any of these facts surprising to you? Then share it with your friends on social media. Visit Hydrocephalus Association’s website and share one of their social media graphics.

Continue to fight for the services your child needs to succeed in learning and growing. That may be therapy services, IEP’s or other forms of help for school, or for medical services provided by doctors.

By continuing to fight for the services that our children need, we are raising awareness about how hydrocephalus affects every part of life. If we don’t fight for our children to receive the care and support they need, no one else will.

Resources:

20 Powerful Facts About Hydrocephalus

Hydrocephalus in Babies

The post September is Hydrocephalus Awareness Month appeared first on Breaking the Confines.

1. Send a “Thinking of You” card
2. Give a gift card
3. Make a meal
4. Invite them over for dinner and fellowship
5. Offer to babysit for a date night
6. Pray for their well being

Do you remember as a kid saying “Uncle” when you wanted your opponent to stop? Most of the time for me it was when I was being tickled by my dad or an uncle. For you it could have been a friendly game of wrestling.

According to Wikipedia, the response “Uncle” is the same as saying, “I give up!” It is a form of submission to the other person.

As I’ve gotten older, there have been plenty of times that I wish I could have said “Uncle” in this game of life.

We can’t wait to be a grown-up when we are kids, but honestly, life as a grown-up is HARD.

Our anticipation of Saturday morning cartoons has turned into Saturday morning house cleaning and laundry. Our lives have much bigger responsibilities that affect not only ourselves, but those tiny humans that we are raising. The stress can be overwhelming.

I think most of us are ready to say “Uncle” this year, too. 2020 has not been very kind to us.

I’m sure there have been certain years for you that seemed to keep delivering bad news.

That year for me was 2016. I had a miscarriage. My step-father was diagnosed with glioblastoma brain cancer that made him a person I no longer recognized. My husband had cervical spine surgery that left him out of work for two months. And after I became pregnant with my third child, we learned our son would be born with Spina Bifida and hydrocephalus.

I was ready to say “Uncle.”

But in the ashes there is beauty to be found. That year my husband and I grew closer to each other and to God. We learned the big lessons in life, like what was truly most important. For us that was God, family, church family, friends, and people being the hands and feet of Jesus when we could barely hold it together.

If you know of a family that has a special needs child, please know that even the smallest act of kindness would mean the world to them. 

Being the parent of a special needs child brings with it a whole new set of worries and anxiety. If you’re looking for ways to encourage a special needs family that is hurting, over-burdened, or feeling stressed about ALL THE THINGS, then here are six easy ways to spread the love of Christ.

1. Send a Thinking of You Card

If you know of a family going through a difficult time, send a thinking of you card to brighten their day. Better yet, have the people in your small group or Sunday school class send one as well.

What did that look like for us? Getting card after card each day from people hundreds of miles away just to say they were praying for us during our difficult time. People we had never met, but were willing to share their hearts and lives with us in hopes that it would ease our pain.

Most of the people at my job knew nothing of my miscarriage. Partly because I felt ashamed. Partly because I didn’t want any pity. I was in the midst of training and mentoring two people. Two weeks after my miscarriage one of the guys proudly announced his wife was having their third child. It was all I could do to hold it together. I was ready to say, “Uncle.”

But coming home every day to a mailbox filled with encouraging cards made the pain a little more bearable.

2. Give a Gift Card to Encourage a Special Needs Family

This can be for gas, a favorite restaurant, or retail store. Gas gift cards are great for families who have to drive a long way to doctor’s appointments or have frequent doctor visits.

Give a give card to one of their favorite restaurants. Every once in a while it’s nice to have the option to go out to eat as a family and not have to worry about the bill.

Restaurant gift cards are ideal for families that have a special needs child because they don’t always have extra money for such occasions. Most of the time that money is being used for doctor bills, therapies, special equipment, or medical supplies.

I think anyone would agree that Walmart or Target gift cards are always acceptable! Even something as small as a $5 gift card just shows you are thinking of that family and that you care.

It doesn’t take much to make others feel loved and you’ll be blessed by being a blessing to others.

3. Make a Meal for a Special Needs Family

I will be the first to admit that cooking for others stresses me out! This would not be the first thing I would pick from this list to do to offer support. But I know there are lots of other men and women out there that love to be in the kitchen. Why not spread that love to another home with a home-cooked meal? Or even a freshly baked dessert?

If you too are not one for making meals for others, another option could be to deliver carryout food. KFC or Popeye’s anyone? Or pick up a delicious baked good from the bakery at the grocery store and leave it on the front porch with a little “thinking of you” note for a special needs family.

Giving that special needs family a night of not having to cook or giving them a special little treat can be the pick me up that they are needing for that week.

4. Invite Them Over for Dinner and Fellowship

One thing that special needs families miss out on the most is fellowship.

Whether it’s due to the child’s needs or the parents’ lack of time (or energy if we’re being honest), getting together with friends and other like-minded adults is low on the list of things to do to maintain sanity and self-care.

Invite a special needs family over for dinner and just enjoy each others’ company. Don’t stress over what the meal will be. Order pizza or grill hamburgers and hot dogs and have a picnic outside.

Just the act of inviting a family over for a simple meal and some fellowship time will mean the world to them.

5. Offer to Babysit for a Date Night

Even lower on that list of things to do to maintain sanity and self-care is a date night for the couple of a special needs child. Especially if that child has certain medical needs that most people don’t know how to care for.

It never hurts to offer to babysit even if it’s just for an hour. If the child with special needs requires extra attention, don’t let that discourage you from offering even a small amount of time to give the parents a much needed break.

This will give them the quality time they need to build their marriage that will help them through the hard days of parenting.

6. Pray for Special Needs Families

The most important act of kindness that you can show to a family with a special needs child is prayer.

Pray for the family to stay together, and pray for everyone’s health and well being.

Pray for the special needs child to remain healthy, to reach his milestones, and to continue to improve in ways that are unexplainable.

Pray for the siblings to be loving care-takers and to be children that will honor God in all things.

Here is a list of 30 prayers for special needs parents who are looking to pray scripture over their problems.

What’s Your Preferred Choice to Encourage a Special Needs Family?

These are all great ways to support any family that may be going through difficult times, not just a special needs family. It just goes to show it doesn’t take a lot of money or time to help our friends and family. Anything done in love will bring encouragement to those you share your acts of kindness with.

Let me know in the comments what’s your preferred way of showing encouragement to others! If it’s not on this list, I’m sure it needs to be so share it with us. You can also reach out to me here if you’d prefer to have a private conversation.

Be blessed and be a blessing to others!

The post 6 Easy Ways to Encourage A Special Needs Family appeared first on Breaking the Confines.

How ADHD in the Classroom Affects the Child

My friend, Mandie, is a mother to three boys (one of which has ADHD) and she is a teacher at a private Christian school. So not only is she able to see things from a mother’s perspective but she also understands what it means to teach a child with ADHD.

Here are her thoughts:

*This is a generalized statement about education in general, not one specific school. We have had some really great teachers for our kids. I’m commenting on things I have seen in my own life, my children’s lives, and the lives of other students I know personally and professionally. This morning my heart was just weighed down from the week and I had to share my thoughts on students with ADD and ADHD. It’s fitting as this is ADHD Awareness month.*

I just want to say that having ADD or ADHD sucks. And I’m so over people who see it as an excuse, and I’m so over people who count things against you that are part of a medical disability.

Especially students who are trying their very best to keep up with all the papers, assignments, and busy work at a school. These kids are not lazy.

They are not trying to disrupt your class by being impulsive. They aren’t purposefully forgetting things. Their lockers aren’t unorganized because they need to “get it together”. Their brains are broken and they are coping the best they can.

Don’t assume they “need to be on meds” or they aren’t trying. You don’t just get meds and are suddenly fixed. It takes a LONG time to find the right ones and even then THEY STILL HAVE ADHD. They will always have it. It is a medical condition that affects the way their brain develops and processes information.

And guess what? They hear teachers talk to other teachers about them, they see teachers roll their eyes when they are missing another worksheet, and they know they are going to lose more points for skills they struggle with.

They know that the education system is not built for kids like them. That they aren’t “the good kids” because they can’t perform to unrealistic school and teacher standards.

And you know what else? It hurts them.

They cry every dang night about how hard school is, how they got in trouble AGAIN, how they never get whatever reward the “good” kids are getting, and how they lose recess (which by the way negatively impacts their ADHD and classroom behavior so teachers are punishing themselves).

They HATE themselves and ask why God made them this way, and they ask why is it so hard and will it ever get any better. Eventually most of them DO give up and become lazy because when they were trying and struggling IT NEVER MATTERED.

Instead of taking things away and punishing these kids, why aren’t we more supportive?

Why don’t we help them? Not just “show them grace” but look at the root problem and help them?

Not just give them the grade, I’m not saying that. Be honest with grades, but if grades are reflecting an issue, why don’t we find out the reason?

Why don’t we MAKE SURE they get recess no matter what because it helps their brains and bodies? Why is recess only for the kids that have it together?

Why don’t we send home gold stars for the things they get RIGHT?

How ADHD in the Classroom Affects the Parents

You probably think I’m just a mom who wants her kids treated special. Or that I’m overprotective of my snowflakes. Well you are wrong.

I want my kids treated how they should be treated in order to learn to cope with a disability they will have their whole lives. I don’t care if they get A’s or if teachers “like” them.

But I want them to try their best without being punished for things outside of their control. And I want them to view school as a positive opportunity and not another way they have failed.

I’d love it if my kids (and others I know) weren’t depressed and in counseling because they don’t like who they are, they don’t fit in, and they can’t keep up.

And I was that child. I was a girl in the 80’s and 90’s in school with undiagnosed ADD because GIRLS DIDN’T HAVE IT THEN.

ADHD was for boys.

I was very intelligent but I hated school because my teachers labeled me as trouble, annoying, and a “bad kid”. I hated myself because I couldn’t figure out how to be a “good kid”, how to “get it together” or how to shut up.

I never got a “1” on my report card for behavior or citizenship and spent most recesses sitting on the curb for talking in class or missing work.

The worst part is I BELIEVED THESE PEOPLE. It took YEARS of therapy and medication before I was not severely depressed and I still don’t like myself and struggle to accept God loves me.

I’m so tired, but I can not give up on my kids. I will keep pouring into them regardless of what a broken education system says to them; they are not broken individuals.

I will continue to tell them that I don’t care about their grades if I know they are trying. If they quit trying, I will know that and we will talk because lazy isn’t an option.

I will keep saying that ADD and ADHD is NOT an excuse – it just means we have to work harder to do some things and they will have to learn ways to make life work for them and learn coping skills.

What ADHD Kids Need in a Teacher

And I will fight for your kids. The ones that are diagnosed and the ones that aren’t.

As another parent AND as an educator. I will find ways for my students to learn without punishing them for things outside of their control.

I will set them up for success in the real world. And I will celebrate their victories with them. When they struggle I will keep pushing them to work hard, and I will be there when they need someone to just listen.

I’m sorry. This school year has been TOUGH; for me, my kids, my friends’ kids, and students I’ve had in class. My heart is just so heavy and saddened by watching the struggle and seeing kids full of life be so drained.

I just want them to enjoy being kids without carrying the same weight I carried until I was 30 years old. If you made it this far, thanks for letting me rant. I’ll get it together someday – or maybe I won’t.

Share Your Knowledge!

I know there are many other mothers out there who feel the same way as my friend when it comes to the struggles your child has at school. To me this post is a great opportunity to bring awareness of the learning difficulties that all children have in a school setting.

Speaking of awareness, if you are looking for ways to spread awareness this month, this post will give you some ideas on how to celebrate the causes that are near and dear to your heart!

If you know of any simple ways to help ADHD children in the classroom, share them below! Or if you have some encouraging words for the parents of ADHD kiddos, feel free to add those too. Let’s be a blessing to others by leaving little nuggets of wisdom and inspiration. It could be just the thing that a desperate heart-broken momma needs to hear.

Mandie Lincoln is a mom to three rowdy boys. She has been married to her best friend for 15 years. She works full-time with high school students and she is in college full-time to finish her bachelor’s degree in Middle-School Education: Language Arts. In her free time she likes to be outdoors with her family, or reading a good book.

The post ADHD in the Classroom | From a Mother’s Point of View appeared first on Breaking the Confines.

These truths were not found in a pamphlet in a doctor’s office or explained to me in preparation of being a special needs mom. Instead they were learned the hard, heart-wrenching way.

Maybe your ugly truths are similar to the ones discussed here. Maybe there are some that you’ve experienced that are not covered. If so, please comment below and let me and the other readers know so we can all share together.

We need each other to be successful at this parenting thing, and we gain strength when we know others have been through the same struggles that we are going through. Strength in numbers, right Mommas?!

Grieving Comes in Waves (again and again)

When you first receive the diagnosis that your child will have special needs, going through the grieving process is critical for your mental well-being. But don’t think it’s a once and done deal. It sneaks up on you at the most surprising times and you will grieve once more for your child.

It may be at the park when there are other kids around and you realize your child can’t move and climb like the others. Or you see another child with the same diagnosis and his progress is so much more advanced than your child’s development.

It could be during an IEP evaluation and there it is in black and white what someone else is saying about your child. They see your child’s weaknesses and remind you once again that your child is below the normal range in one area or another. You read it and weep.

You weep because this is not the life you wanted for your child. You weep because you can’t change the hard facts about the life your child will face and faces every day. But in your grieving also know that your child was made for a purpose and for a higher calling. “Many are the plans in the mind of a man, but it is the purpose of the Lord that will stand.” Proverbs 19: 21

Learning to Accept Your Child’s Delays

It’s never easy to see your child struggle even when it’s your “healthy” child. But a hard lesson for special needs parents is learning to accept your child just as he is; delays, weaknesses, and all.

It hard to not be jealous when you see other kiddos with the same diagnosis doing so much better than your child. It’s hard not to feel a little anger rise up in your momma bear heart and want to fight for the injustice. “Why is it that she doesn’t have to have therapy twice a week? And look at that, she’s not wearing leg or foot braces!”

Just remember you are normal to feel these jealous and angry feelings.

Give yourself grace and remember it’s all in God’s time. Remember He has already done so much for your child. Just look at how far she has come and know that this season you are in will not last forever.

Eventually your child will meet her next milestone and there will be great rejoicing!

There Will Be Lots of Low Lows and High Highs

Over the past three and a half years (counting pregnancy) there have been really low lows and really high highs. It’s a roller coaster ride of emotions over and over again. Most of the time it’s all in the same day!

The really low lows have been filled with anger, anxiety, and deep sadness for what my child has endured and has yet to endure. He’s still young enough that he doesn’t really understand how his disability sets him apart from his peers but it rips my heart in two knowing that some day he will see that difference.

It’s an overwhelming sadness when we as mothers see other children at the same age capable of doing so much more. We want to give our children the opportunities to try new things for their age like soccer, t-ball, dance or swim lessons, but most of these programs do not offer the extra assistance that our kiddos will need. Or there’s not a special needs group in the area that we live in making it seem like the option for sports is out of the question.

And then there are the really high highs. Those joyous moments when a milestone has FINALLY been reached! Or you get good news from one of the many doctors that since your child is doing so well, the check-up visits will be much farther apart from now on.

It’s in those really high times we learn to celebrate big the small things, because they are big things for our children. We know what a long road it’s been to reach those milestones. We see how hard our children work to do those normal things that most of us take for granted when we are doing them ourselves.

The high highs are the times we like to share on Facebook and Instagram how proud we are of our special needs child. And it’s encouraging and uplifting to see our friends and family celebrating with us. As a special needs parent, you need all the encouragement you can get, so share away friends!

You Will Have Feelings of Isolation

The other thing most special needs moms experience is the feeling of isolation. People just don’t know what they don’t know. And having a child with special needs puts you in a whole other world.

A world filled with endless medical bills that most people have no clue about, endless therapy appointments, doctors’ appointments, and tests.

We worry and pray there are no set backs, no regression, no surgeries. It’s a world where vacations are few and far between because so is the extra money.

We feel isolated from others because no one in our close circle checks in on how we are holding up.

There’s not a lot of date nights because that requires a sitter which requires money. And said sitter needs to be aware of our child’s limitations, food allergies, and other things to look out for.

A girl’s night out happens even less often than the date nights because honestly we are too tired to even want to go out.

Self-Preservation Comes in Many Ways

It may sound silly at first because according to the dictionary self-preservation is the protection of oneself from harm or death. But once you assume the role of a special needs mom, it’s a basic instinct to protect our sanity and our heart.

It looks different for each person, but do any of these sound familiar to you?

• Self-preservation is keeping your head down, focusing on your own little world, and trying not to be envious of other’s ability to do things, go places, and have opportunities (like a beach vacation!).
• Self-preservation is not getting offended when no one calls or texts to tell you they miss your friendship, or that they are thinking of you.
• Self-preservation is to keep trying to be a better mom and wife today and the next day because these people are your LIFE and you would die without them.
• Self-preservation is spending time together as a family, forgiving each other (most times daily), and loving each other more than we love ourselves.

You may find yourself shying away from others. And if you do, don’t feel guilty for doing what you need to do to preserve your sanity. But do make sure you have at least one person to talk to whether that’s your spouse, a best friend, or even the people in a supportive Facebook group.

You Will Have to Depend on Others

What I was not expecting when I became a special needs mom is having to depend on others for help.

My husband and I like to keep to ourselves and we don’t like to be a bother to anyone. But being the parent of a special needs child means you can’t do it alone.

While the husband is working to pay for our livelihood, someone else has to help with child care for the older sibling while I’m two hours away at doctors’ appointments.  And someone else has to help me by going to those doctors’ appointments because I’m not driving two hours with a small child and no backup!

It’s never been easy to ask for help and it’s even more frustrating when you don’t have many people willing to lend a hand. The hard lesson here (and ugly truth) is that most people don’t really want to help. So make sure you know who you can depend on because you will need outside support. 

Ways to Overcome These Ugly Truths

Count Your Blessings

Have you heard the song, “Count your blessings, name them one by one. Count your blessings, see what God has done..”

The best way to kick negative emotions/thoughts to the curb is to be grateful for what you already have. When you feel yourself going down the rabbit hole of negative self-talk, stop and think of five things to be thankful for right then.

To help with this, I’ve created a free printable that you can use to list those five things for each day of the week. Try it and see how much more positive your days and weeks will be!

Find a Facebook Support Group Specific to Your Child’s Special Needs

It’s important to connect with others who have already gone down the road you are on, so don’t be afraid to reach out for a helping hand.

I’m sure you will not find a more supportive group than the ones filled with parents that understand your pain, have been where you are, and can help with the needs of your child. There is strength in numbers and it’s what your momma heart needs to find comfort and solace knowing you are not alone!

Check on Other Special Needs Moms

I know how easy it is to get caught up in our own lives and forget to check on other people. I mean it’s not like we have tons of free time!

But sadly, there are more special needs moms out there today than there were 10-20 years ago. So it’s likely that you know personally one or two of them.

Don’t wait for them to check on you. Make it a point to check on them every few months. Put it in your calendar on your phone if you have to, because they need you too!

Share Your Knowledge with Others

Just as you were encouraged by others and their experiences, you can encourage other parents too. Maybe that means starting your own blog, or making others more aware during the awareness month for the condition your child has. Here are some ways you can bring awareness if you are needing some ideas to get started.

MAKE Time for Self Care

I know you’ve heard it a million times but I want to tell it to you again, Momma. Make time for yourself!

As parents of a special needs child you don’t have spare time lying around just waiting to be used and no one’s going to find that time for you, so be intentional and make time for YOU! It’s not being selfish.

When we are feeling more like ourselves and not the tired, cranky version, we are better capable of handling the stresses of the day and can take on our little world one small human at a time.

Need some ideas of self-care that can be done even if your short on time? Here are just a few ideas:

  Take a nap! (What?! I know, right!)

Sit outside with your favorite cup of tea/coffee/wine AND DO NOTHING!

Do some Yoga with Adriene (she is the best!)

Chat with a friend on the phone. Even better if you can make it a weekly habit!

Meditate, pray, practice deep breathing

Journal or write down your blessings for the day (practice the attitude of gratitude)

Check out this post that gives you 61 self-care ideas for moms without having to leave your home!

There’s even a free printable with the list of ideas and affirmations are included. Check out the link above!

I Want to Hear from You!

What ugly truths have you discovered in becoming a special needs mom? Please share with us because I’m sure we’ve all felt the same.

What are your favorite ways to overcome the stresses of being a special needs mom? I would love to hear them.

Comment below or send me a personal message!

The post Ugly Truths from a Special Needs Mom appeared first on Breaking the Confines.