Are we overlooking people who are VITAL to your success?

Individuals with disabilities are so often forgotten and looked over. Forbes magazine recently released this article that gives 4 reason why we should all care about disability issues. According to the article, businesses that ignore disability issues lose millions in disabled people’s talents and patronage without even realizing it.

Read it here:

https://www.forbes.com/sites/andrewpulrang/2022/02/21/4-reasons-why-businesses-should-care-about-disability-issues/?sh=3bd414c04c21

These are just 4 of hundreds of reasons! I hope you will take the time to get to know someone with “different” abilities! Their influence will change our world!

Blessings, Nettie

The Secret World

There is a world that most people never experience.

You don’t sign up for it and until you’ve lived in this reality, you have no idea what it’s like.

The “secret life of the Mom of a child with special needs” was never meant to be a secret.

It’s not that we don’t want to share, it’s not that we are ashamed, I believe it’s a secret because most people couldn’t handle the reality of it.

Let me example. So often when we are uncomfortable and don’t know what to say about a particular situation, we look away. Sometimes we walk the other way and pretend we didn’t see the person, or sometimes we anxiously speak while heading in the opposite direction.

As the Mom of an adult with special needs, I’ve experienced that so often and I have even found myself “without words,” wishing there was an escape door.

But the reality is that the world needs to know about this “secret life.” If we did we would be so much more understanding of the tears, the way our Moms exclude themselves, the reason they seem to never be a part of the group, the tiredness in their eyes.

If you know of a mom in this “different“ world. Ask them to let you in. Find out about their child and do your research so that you can be more understanding. Most importantly, be a friend. Teach your children to just be friends, even when they don’t understand.

It’s a beautiful world that you don’t want to miss. There are miracles everywhere, and there is also sadness but when joy comes it’s like nothing you’ve ever known.

What is Autism?

April is Autism Awareness Month and April 2nd is World Autism Awarenss Day but many people don’t even know what autism is.

There is no one type of Autism. There are MANY subtypes of Autism. Because Autism is a spectrum disorder, each person with autism has a distinct set of strengths and challenges. The ways in which people with autism learn, think and problem-solve can range from highly skilled to severely challenged. Some people with ASD may require significant support in their daily lives, while others may need less support and, in some cases, live entirely independently. (Autism Speaks)

1 in every 54 children in the United States are affected by Autism and we are learning more and more everyday, mainly because parents and individuals who have been affected by autism are telling their stories.

Light it up blue this month and every month in support of families with autism and TELL YOUR STORIES! You may be the one who helps us understand the beauty, the gift, the challenges of people with Autism.

Here is a beautiful Autism story:

He is more than Autism… He is brave, funny, wise, unique, creative, aware, loving, blessed, talented, exceptional, silly, smart, and so much more!

Ruby, Mom of Angel

Autism can be tough but individuals with autism are beautiful and have so much to teach us! Take time today to get to know someone with Autism today!

Nettie

The Journey

I have been sent on a very important journey.

I didn’t sign up for it. I don’t undestand it yet I know I have been “sent” on this journey.

I’m not educated, credentialed or prepared. There is no “how to” book to read, no youtube video to watch and noone has ever walked my exact path.

I have no idea what I’m doing most days, sometimes I feel like there is a blind-fold over my eyes and other days I can see so clearly. I walk, I trust, I stumble, sometimes I fall.

My heart is fully commited to this journey. I know that I‘ve been entrusted with a treasure that most people never experience and that my partner on this journey is unlike anyone I’ve ever known. She teaches me though many think I am the teacher.

Some days are full of unexplainable joy, other days we barely have enough light to see our way through.

I have been sent on a very important journey, I am the Mother of a child with special needs.

Nettie S. Hatcher

Epilepsy Awareness Month

It was a Sunday morning and Jessica was 15 months old. She was dressed in a beautiful pink dress that was hand smocked, and was sitting on the floor playing with her toys. Suddenly, I noticed that she appeared to be staring behind her at a shadow on the wall. I remember calling her name several times. When she didn’t respond, I walked over and picked her up.

She was stiff. Her eyes were fixed to the left. We immediantely rushed her to the hospital.

I have never been so afraid.

The doctors told us that what we described sounded like a seizure. They began to do a series of tests and in the end told us that she would probably never have another one.

But they were wrong.

Over the past 24 years, Jessica has had thousands of seizures. Each one is as painful to watch as that first one was. They often come without warning, and turn everything upside down.

Thankfully, we have learned to somewhat manage life with epilepsy and we’ve had the honor of walking with many families who are just beginning their journey. One of the most common things we hear is that friends and family members are afraid to spend time alone with the individual that has seizures, due to the fear of not knowing what to do.

What do you need to know about seizures?

According to the Epilepsy Foundation, If someone is having a seizure;

Remain Calm!

STAY with the person until they are awake and alert after the seizure.

✓Time the seizure ✓Remain calm ✓Check for medical ID

Keep the person SAFE

 ✓Move or guide away from harm

Turn the person onto their SIDE if they are not awake and aware.

✓Keep airway clear
✓Loosen tight clothes around neck
✓Put something small and soft under the head

✗ Do NOT restrain.
✗ Do NOT put any objects in their mouth.

✓Rescue medicines can be given if prescribed by a health care professional

If the seizure lasts longer than 5 min or if the individual has multiple seizures without regaining conciseness, call 911.

Don’t forget that people who have epilepsy, are people. They need our love, patience and understanding.

Blessings,

Nettie

Do they count?

I recently had the privilege of meeting with a family who are missionaries in another country. Both Jon and Alicia are special education teachers. They have started the first school for children with disabilities in this particular country.

During our conversation, Alicia told me the story of a local family. She said that the government was giving out commodities and they visited the family to get a count of the people in the household so that they could distribute the commodities to them. The woman has 2 children, one who has a disability. 

The government official asked the woman how many lived in her household. When she replied with 3, the official looked at the young man who was disabled and said, "He doesn't count!"

When I heard this story, tears began to stream down my face not only because of the compassion I felt for this family but because her story isn't unusual and it doesn't just happen in other countries. 

It happens here. 

Every day. 

To our neighbors.

 The Mom in me wants to wrap my arms around this precious family. 

The advocate in me wants to jump up and down and wave my arms and scream, He does count! His life has value!

I know that YOU believe this as well!

You will be the voice of those who can not speak!

You will be the ears of those who can not hear!

You will be the feet of those who can not walk!

Like you, I believe they count!

Like you, I want to show them we see them, that we hear them, that they matter, that their life has a purpose!

Visit our website for some practical ways you can show families with special needs that they “count.”

Stay at Home

With each day, Mary is more depressed. Every morning she wakes up thinking she is going to school. Her Mom tries to help her understand but she just can’t. She misses her teacher, her friends, and the ride on the school bus that she loves so much!

We’ve all felt the sting of those 3 words… STAY AT HOME.

For families with Special Needs, it’s not just an option, there is no other choice.

Like Mary, many of our children and adults have compromised immune systems. If they get sick, it could be more than their bodies can handle. Parents feel the enormous weight of trying to protect them as much as possible.

Before I entered the world of special needs parenting, I thought that people who had development delays, didn’t feel the same things that the rest of the world feels. I guess I thought that they were somehow sheltered from the pain of everyday life.

Because many individuals are non verbal and express their fear or pain differently, many people think “they don’t feel.” They think that individuals with special needs aren’t affected by this crisis.

That is so far from the truth. In fact, the rate of depression among those with special needs has sky rocketed since covid 19 entered our world.

Think about it, our individuals have very few relationships but those they have are so important to them.

For the school age person, the routine of school is something they look forward too. They bond with their classmates and many times their teachers are like family to them. They have not been able to attend school for 3 months now!

For the adult with special needs who attends a day center or work program, many of them wake up every morning only to realize that they won’t be going to socialize with their peers, again. Church and family gatherings are no longer possible and many of them haven’t left their homes in months.

Depression from social isolation can present itself in many different ways. Symptoms can include but are not limited to;

Behavioral Outbursts

Lack of appetite

Insomnia

Excessive sleep

Separation Anxiety

What can families do to help?

*One very important step to take is to remind your loved one that things won’t always be this way.

*Face time or video chats are wonderful ways to allow them to “see” the people who are important to them.

*Try to keep a routine, even though you are staying at home, give them something to look forward too.

As a community, we can also help! Most individuals with special needs love to get mail!

As a way to encourage our friends with special needs, we are starting a Share the Love mail program.

Here’s how it works:

Grab a card and write a note of encouragement for an individual with special needs and mail it to: The Breathe Organization at PO Box 2995 Moultrie Ga. 31776 or go to our website and leave your note. You can also leave a donation for the postage and you can even choose a care package on our website to help keep them busy while they wait for this storm to pass.

We will mail your care package to people with special needs all over the world!

Join us and you may discover a secret that I learned a long time ago… When I encourage others, it also encourages me!

I can’t wait to get your encouraging notes!

If you know an individual with special needs who needs encouragement, send their address to:

nettie@thebreatheorganization.org

Together we can make sure that Mary and all of our friends with special needs, know that they are not alone.

Blessings, Nettie

Sounds

It’s a sound you never forget, but wish you could.

Last night after I’d been sleeping about 2 hours, I heard it. Sometimes it sounds like she’s drowning. Other times it sounds like she’s crying for help. Last night, it was the sound of her arm hitting the headboard.

I jumped up out of a dead sleep, straight into action. Was I prepared to do CPR if she needed it? Where was the emergency medicine? I was so tired but my adrenaline kicked in and I knew that at that moment, I had to be alert and ready.

Seizures come without notice and after 24 years of them, you’d think I’d be ready but each time it’s like someone has thrown cold water in my face.

I sing to her, even though it’s so hard to get the words out. I pray. I cry. I feel completely alone and helpless. Will this ever end? How long can her little frail body possibly take this? Seizure after seizure they come, each one I pray will be the last but they won’t stop and I know that I have no choice but to give her the emergency medicine, a drug that is normally only given by a medical professional but tonight, it’s just me and her.

I jump up and grab the syringe, praying that this will be the last and that I won’t have to give her this strong medication.

She stills for a moment, I breathe deeply…. Is it over? Is she finally resting?

Finally she is asleep and the storm is over…..

I cry silently trying not to wake her. How long will she suffer like this?

The adrenaline that woke me up and set my feet to action is now keeping me awake. I watch her sleep as tears stream down my face.

I wait…. I long for the day when the seizures are gone, never to return…..

PERSON-FIRST LANGUAGE, & why we should use it!

Our words are powerful. There is no doubt about that! Have you ever noticed that we so often remember the negative things that have been spoken over us?

When I was a teenager, I had “bird legs.” Who am I kidding, I still have birds legs but I so clearly remember someone making fun of me when I was about 14 and I still get a little self conscious about my legs sometimes!

Person first language was created as a reminder to us all that we are not what has happened to us. We are not to be known by a diagnosis or label. We are people, created with purpose and there are no limits to what we can achieve. Doesn’t that inspire you? But what if that wasn’t what you heard most of the time?

Many individuals with special needs hear things such as;

She’s nonverbal

An Autistic Child

Blind boy

Retarded

He’ll never read

He can’t talk

That deaf girl

People first language puts the person first, above any diagnosis

So, the autistic child would be a child who has autism. The blind boy would be a boy, who is blind.

It seems so simple but it really makes a difference! So often we forget that people who have special needs, are people! They have feelings. Much of the time they understand much more than they can communicate.

Let’s remember to always put people first and use words that encourage and build up, instead of tearing down.

Nettie