Sensory Survival to Independence Day

Fireworks.  Cotton candy.  Music to pull on the heartstrings.  Smiles. Parades. 

This is the time of year, in America, we celebrate #freedom, #independence, and #liberty. For most, this is a time of celebration and joy. Independence Day is the very core of what it means to be American.  It means freedom.  It means prevailing over adversity.  It’s a celebration of the rights we have today because men and women decided the prevailing government systems of the world were incomplete and inadequate.  We celebrate the recognition of human rights for the first time in history.  We celebrate a government by the people, for the people. 

On the other hand…

Crowds. Loud noises.  Booms so big you feel them rattle your bones.  This holiday is full of intense sensory overload children (and some adults) have a tough time navigating around.

It is hard to enjoy a celebration that is designed with everything that makes one feel out of place. 

We want to ensure our family experiences all the same things as any other child.  But we want it to be enjoyable – for everyone.  My family believes the world will not bend to the needs of our family, so we must find a way to adapt.

So how do we get through this wonderful holiday in one piece? 

I asked my son this very question and here are his tips and tricks to succeed.

1.       Bring Headphones: One of the most valuable tools in our toolbox for this holiday is headphones.  We keep extra earplugs in our cars for those who need them and forget about them.  Headphones help dampen the noise-making this more enjoyable for our son.  We bring these with us to theme parks, movie theatres, parades and the like.  There are tons to choose from.  We have found, that as our son grows, his preference and needs change.  So here is a list of the 10 top headphones for travel that I think you will find useful.

2.       Snacks:  But sensory is often processed through taste.  Snacks are essential to enjoying any celebration.  Food brings people together and encourages fellowship.  It often allows for the processing of sensory throughout the body.  We like mints throughout regular days.  But, for events like this, snacks with a crunch are great.  We usually bring some form of water (we like to flavor it with either lemon or Axio – which helps with focus), some vegetable chips or caramel-covered apples, and maybe a nice fruit dessert to cool down during the hot humid night.

Enjoying the show from afar

3.       Watch in your car: We have celebrated Independence Day in large and small cities across the country.  We have usually found a great way to limit crowds and sensory overload is watching the show in your car.  We have a hatchback that allows us to lift up the back and watch in the comfort of our trunk.  This keeps the loud noises, massive booms, and crowds at a minimum.  We enjoy the show and have the ability to leave before the masses exit (I hate traffic) and avoid the crowds.  With an increase in #COVID-19 cases across the south, this little tip is one of my favorites for health and wellness.

4.       Blankets and masks: If you cannot watch the show from the safety of your car, bring a large blanket for the picnic and remember your mask.  The blanket will act as a natural barrier from other groups.  The masks will be added needed protection against the virus.  Of course, you can always stay home and enjoy the show from your home (if you are close enough) or watch a broadcast of the show on television. 

5.       Stay with your group: This is smart advice regardless of the event or the current pandemic. Watch your young children who might wander off.  Events of this proportion are notorious for nefarious characters.  This is a great opportunity to talk to your children about “stranger danger” and work on social interactions with community workers like police and firefighters. We like to have a 2:1 ratio of adults to young children. When this cannot be done, you can always go old school with hug-and-tugs or backpacks with wrist connections.  This will give deep pressure (when full of snacks) and help keep kids near. 

With a nation in unrest due to the current pandemic and questions of how to process rights or man and rule of law, this holiday is even more important than ever. 

I hope this Independence Day is safe and fun for everyone – no matter how you celebrate it.  I would love to hear how you help your little ones get through events like this.  Send in your tips.   And let this be a year we truly appreciate the long history of freedom, liberty, and bravery Independence Day honors.  Thank you to all the servicemen and women who make it possible for us to have freedom of speech, freedom of the press, and the numerous other freedoms our country allows for all its citizens.

Is Screen Time Your Friend or Enemy?

There is something special about cuddling on the couch, snacking on popcorn and watching a new release (or an old favorite).  Bonding over a laugh or squeezing tight during a scary scene.  Priceless. 

And yet, there seems to be a yin to the yang. 

Behavior changes when we sit in front of a screen too long.  Studies have shown too much screen time increases obesity, decreases the quality of sleep. My son seems to regress with each half-hour of TV.  His attitude reflects what he watches.  And, unfortunately, even educational shows like Wild Kratz displays negative behavior.

So, in a homeschool world, how do you balance the screen time? 

Here is the good and bad of screen time. 

animation-cartoon-cartoon-character-disney-mickey-mouse-piano-light

The Good

Children learn a lot from the screen.  There is a great documentary, Life Animated, which follows a child on the spectrum who learns to speak by watching Disney movies. (Our personal experience reflects this method works).

There are numerous benefits to screentime.  Children learn about social norms and cues.  Film and television provide authentic and varied language that many would not pick up in a peer relationship.  And most importantly, for children on the spectrum who think and see in pictures, television and film give a visual context.

The Bad

Unfortunately, there are lots of negative results of screen time.  We copy what we see and hear.  Kids learn and pick up so many things from the screen about dating, relationships between boys and girls, how to speak to parents and when to exercise independence.  Often, this is done in a way causing harm to the cognition of the child.

Too often in American culture, we celebrate the celebrity and choice of stars and then complain about why our children act like them.  We relish the drama and excitement of the racy, poor decision filled scenes; discuss and glorify them when they are not on. We wonder why our ten-year-old girls want to wear short-shorts and our boys want to curse up a storm.

HELP

So how do we find balance in the crazy that is homeschool?  When our education is turning to the screen?  Our free time is playing on a screen?  Our family time is sitting in front of a screen?  Here are three steps we use in our home that seem to work for us:

  1. Use it as a reward. There is no reason a screen has to be on in every room for every person every day.  Ensure school work, chores, playing outside, and being creative are completed prior to any screen time. 
  2. Limitation.  Limit what they watch, when they watch, how long they watch.  Limitations are good in all aspects of life – from what we eat to what we watch.  We do not let any screens in our kiddos bedroom and use Google Chrome Cast which is mirrored from our phones to ensure we know what is watched and when it is over.
  3. Model.  Practice what you preach.  If your rule is to finish work, exercise, reading, and creativity first, but your child never sees you do that – you are asking for trouble.  What rules you put in place for the screen should be reflected in your own actions.  Other than numerous benefits of opening up time for productivity, this allows you to show your child there is so much more to this wonderful life than the big (or little handheld) screen in front of them. 

Screen time can be a wonderful tool and entertainment resource.  However, it can also be the bane of your existence.  May we all find balance in the world of homeschool and homework in this strange and ever-developing global situation.

child-hiking-black-jacket-with-hood

Key to Unlocking the Mystery

Your life does not get better by chance. It gets better by change.

Jim Rohn

When people learn that, especially those with special needs children, I am immediately asked what we did to help him? Was it the medication? Was it diet? Was it therapy?  The answer is teamwork.

It is a process, like all parenting.  No one expects their five-year-old to do laundry.  No one expects their sixteen-year-old to sign a loan.  It is a process of teaching and learning on both sides of the parenting aisle. 

Track Changes

It is really easy to share about the rough days in the lives of special needs.  But all that does is focus on the negative and does not act toward a solution.  Maybe it is the researcher in me, or maybe it is my determination to understand the why, or maybe it is my sheer stubbornness, but I was determined to not let my child use his diagnosis as a crutch.  And I was not going to let the world do that either.

But, when your kid cannot talk at age five, you might think this is not possible.  I am can confidently say it does not have to be.

The first thing I am always told is that is way too much work. And if you approach it like that, you may find it is. But I did not. In total, once I had a system, it took about 15 minutes a day…and the data was AMAZING!

Here is how it was done and some lessons we learned:

STEP ONE: Get Everyone on Board

This is probably the hardest step.  When you think about it, you leave your kids in the hands of others sometimes up to 40 hours a week.  This could be a teacher, an aide, a therapist, a Sunday School teacher, or a babysitter.  Everyone is different and so what is considered bad behavior for one may be tolerable or expected behavior to another. It is essential to get everyone on the same page.

We developed an easy light system, much like a street light, that could be used in all locations.  Because it could be used in all locations, our son knew what was expected from him at all times.

The Color System

There are four colors and the frequency of use changes with age and need.  When we started at age five, our son had the opportunity to earn 15 blues a day.  We believe in grace – no one has a perfect day every day.  To that end, we always allow a place for imperfection.  When he was younger, our son could earn 10 blues and greens and still earn whatever incentive he was working for. Now, there are certain actions that automatically mean he loses his incentive but he also has fewer chances to earn things. We break the day up by activity now not by the hour.

Before we get too far, let me explain what an incentive is and is not. 

An incentive is NOT a bribe.  A bribe is a reward given in extreme frustration to a child misbehaving.  An incentive is a reward given in a contract.  I will do an entire blog on this next, but for now, this should get you where you need to go.

Breaking up the day by activity and time helps understand what topics and times of day may need more or less attention

Here are the colors:

Blue: This is beyond what you would expect from a child – excellent behaviors, no reminders, best kid you ever met. This would be an A+ student.

Green: Exactly what you would expect from a child.  Nothing too bad and nothing too good. This would be a B/A student.

Yellow: Walking a dangerous path.  Perhaps you need to give some warnings.  Perhaps there is an attitude creeping into the child’s tone.  This is your warning.  This would be C student.

Red: Game over! This behavior is not acceptable and will not be tolerated.  This is an F student.

The color system is easy to explain to other adults and is easy to teach to your child.  

Seeing at glance improvement over time helps bring scope and value to the progress made

How do you keep track during those times you are not with your kids?

We used a grid system of school subject, time of day and days of the week.  We found this was easy for the provider or teacher to be able to communicate to us how the day went without having to write a book.

On the back of our weekly grid was any comments the aide, teacher, or babysitter wanted to provide with why they chose that color or any specific good or bad behavior of which we needed to be aware.

I then kept all of these in a three-ring binder divided by school year.  Once a month I would count up the blues, greens, yellows, and reds and have a clear indication of which direction my child was going.  This also helped when speaking with occupational, speech and ABA therapists to help see what times of days and what subject’s in school were more problem areas and where we could spend less time and focus.

STEP TWO: Track A-B-C Behavior

A-B-C behavior is your lifesaver! This data tells you so much about your child from what they like or dislike to how they may be physically feeling to how smart they are.

What is it?  Antecedent, behavior, consequence.  I will spend more time on this is a future blog on ABA therapy, but here is what you need to know to get started. 

I used a chart of date and time with A-B-C.

This helped me track where trouble times of the day may be (like right before bed or end of the week due to exhaustion) or certain activities which may be frustrating to my kiddo (like math and homework at the end of the day). 

What are some antecedents?  Transitions, change in routine, a difficult task (anything from buttoning clothes to multiplying fractions – wherever your kid is) can all be antecedents.  This is what occurs prior to the behavior you are seeing.  This is super helpful when communicating with other adults, especially babysitters, so they can know how better to help your kiddo,

Behavior is simply that – what behavior did your child exhibit?  Was he eloping? Was he hurting himself or others?  Was he not doing work (avoiding what was requested of him)?  What action took place?

Consequence is essential.  This goes hand in hand with incentives.  The key to a good consequence is that it is known in advance and is followed through on consistently.  CONSISTENTLY.  If this is not consistent, everything is lost!

For adults, we know if we steal, we go to jail. This is a law.  This is not just a law on books, it is common law – do not steal or you go to jail.  You know the consequence in advance.  If you steal one time, you go to jail (when the system works correctly).  When you steal again, you go to jail.  The rules do not change and the consequences do not change.  We, as humans, respond best to consistency.  It is essential the consequences are communicated to the child, the caregiver, and your partner and you are on the same page.  If your kid can get away with task avoidance with Dad and not Mom, this will not work. 

Tracking this information is essential to not only understand your child and what makes them tick but helps you as a parent teach self-control, responsibility, and rule of law (which every society everywhere has some form).  This also, over time, makes your life parenting much easier.  No more repeating yourself.  No more fighting with your kiddo.  This allows them to start feeling independent.

Grid of time and date, next colum initials of who saw behavior, Antecedent, Behavior and Consequence are the next three columns
Seeing what is the antecedent helps to discover how to help solve problems we cannot see.

STEP THREE: Track What You Eat

This may sound a bit absurd, but believe me, it is more helpful than a pedestrian visit.  When we started tracking what our kiddo ate, we could see and anticipate behavior.

My mom used to make the most incredible cakes for our birthdays…all our eight birthdays a year.  And every time one of us kid had a birthday, my mom would get sick.  It took forever for the doctors to figure out what was happening until they tracked the ingredients she used in the frosting of the cake.  She was allergic, but did not know it.  Tracking the daily helped the doctors (and my mom) to figure out the problem.

We decided to not wait for a doctor to tell us to do this.  We just started to do it.  What we discovered changed our lives.

When our son eats dairy, any dairy, within 24 hours to the minute, he is having behavior problems.  This was essential information when he could not speak.  But it also helps us now that he can.  Our son is not allergic to dairy, but he cannot physically process it.  This leads to stomach aches and headaches which leads to less focus, patience, and acceptance in situations that may otherwise be easy to handle for him. 

How did we discover this?  We tracked his meals.  Every day for two years.  We saw the trend at six months, but did a full two-year study for certainty.  And because data is indispensable.  This essential data has come in handy when talking to his therapists, pediatrician, allergist, and teachers.  It has also helped create a much more calm home environment. 

This is super easy now with apps for food tracking (just google a play store app for a diet and millions pop up). 

Photo by Pixabay on Pexels.com

STEP FOUR: Pray

Many of you know I am Christian.  I think God played (and continues to play) a large role in the success of my family.  From the day my son came into my life, I have prayed for him.  I have prayed for healing.  I have prayed he has control over his emotions.  I have prayed he has a heart for obedience and compassion for others. 

Most of these things a child on the spectrum, especially those that cannot express themselves, have trouble with.  There were days our son would hit, kick, scream and bite because he could not tell us his stomach hurt or that he did not like the texture of a food.  Simple things to those with the gift of language. 

It can be, often is, and has been over-whelming. 

But I have learned specific prayers get specific answers.  Within a year of praying my son could speak in complete sentences.  Though we still have spitting and kicking outbursts, the frequency of these has decreased dramatically – from constant throughout the day to maybe once to twice a month in four years.

Though I know not all follow my God, I highly recommend prayer or mediation of some kind.  I have found it to not only calm me but has allowed me to approach problems from outside of them not stuck in the middle of them.

                What we Have Learned

Data is key to understanding your child, especially if they are non-verbal.  It can be easier than you think with grids and check-boxes.  It takes less time than you think with apps and only 10 to 15 minutes a day.  It brings more peace, calm, and happiness to your child because you understand them more, but also to your home.

Do not feel over-whelmed.  Do what you can do and let the rest fall by the way-side.  Not every kid is the same and not every kid will respond the same way.  I do highly recommend, above all else, consistency in your home with both praise and consequences. 

Your life does not get better by chance. It gets better by change.Jim Rohn

When people learn that, especially those with special needs children, I am immediately asked what we did to help him? Was it the medication? Was it diet? Was it therapy?  The answer is teamwork.

It is a process, like all parenting.  No one expects their five-year-old to do laundry.  No one expects their sixteen-year-old to sign a loan.  It is a process of teaching and learning on both sides of the parenting aisle. 

No Showers and Bad Dreams

There is a scene in Patch Adams when Patch Adams (played by Robin Williams) is helping an in-patient go to the bathroom.  The patient had an illogical fear of invisible squirrels that prevent the patient from leaving his bed to use the bathroom.  Adams plays into the fear and helps “fight off” the squirrels so his roommate can finally relieve himself.

This is an excellent example of life with children.

Our son has been bathing himself for years.  About age eight there was a time he would not go into the shower – hygiene be damned!  When he asked him why he was adamant a shark was going to attack him.  

Continue reading “No Showers and Bad Dreams”

Life Is a Roller Coaster

“Mom, can we go on that roller coaster?” Our five-year-old son asked to ride his first big-boy roller coaster –the Super Duper Looper.  Having verified the height requirement (and that it was safe for a five-year-old), we all jumped in line.  Never did we think that the very first thing that would happen on this ride was to be flipped entirely upside down! I thought for sure our son would get off the ride and hate it.

I was wrong.

“Let’s do it again!” he screamed excitedly as he exited (to my utter dismay). 

But that ride taught me some very valuable lessons. 

There are ups and down

When we first found about Autism, we did not know much about it.  We are still learning about now.  But something I wish we were told at the onset was that life is a roller coaster.

Most people hear that and think of Forrest Gump and his box of chocolates and very rightly say, “Obviously.”  But what I am talking about goes further than the what nutty delicacy life dishes out. Life with Autism is taking two steps forward and one step back. It is a constant up and down.  It is fast paced and often takes your breath away.

When our kiddo was younger, he could not talk and potty training was difficult to say the least.  At four we would spend a week getting him potty trained and then send him to his other parent for the weekend.  Every time he came home not potty trained. 

Every time we would have him using a word to communicate (just one word) we would send him back to the other parent and he would come back mute…well, screaming like a banshee is probably more appropriate.  

But he is potty trained and he can carry on lengthy conversations…as long as they are on a topic he wants to discuss. 

But that process of two steps forward and one step back is exhausting.  It can be affected by the smallest changes in routine to the largest. Moves between homes. Moves across the country. Different teachers. Different subjects. Developing hormones.

It is really easy to see the negative in life circumstances and feel like you will never reach the goal.  Sometimes the low of the rollercoaster is really low.  Sometime your stomach lives in your brain. Sometimes it is easy to forget how high you fell from or how far the child has come.  It is easy to think your lives are the valleys when in reality there have been many mountains…and very close together.

You will reach your goals.  They will.  With solid routine, quality time, and people who will fight for them, each child with special needs can and do make and break through their goals. 

Expect greatness and you will get it…eventually

I have a neck injury and a weak stomach.  Going on a roller coaster I thought was great for a child of five, I was not anticipating breaking my neck and holding in my breakfast.  I very much disliked that ride.  I thought my son with sensory issues and an intense sensitivity to loud noises would hate that ride too.

But my son did not.  He absolutely loved it! 

I came to learn that the deep pressure provided on a roller coaster is really helpful to kids with neuro-sensitivity.  I learned that my son has a Big-Gulp need for motion…I, on the contrary need, a teacup and call it good.  I learned that my son has no fear (except one…but I am keeping that to our family for now). 

Not only did he love the ride, he wanted more of it.  He wanted to do every ride.  The bigger and faster the ride the better it was for our son.

By making the one decision to try something new, outside everyone’s comfort level, against what seemed to be logical given his diagnosis, we got something magical!

I got to experience his first roller coaster ride with him (which is awesome because every other ride he wants to go with his dad).  I got to see my son over come legitimate challenges to sound, delayed gratification waiting in line, dealing with enclosed spaces in the queue and many more.  My son taught me in that moment that he can do anything he puts his mind too – no matter the challenges he faces.

This too shall pass

When I was on that ride I just kept counting down the moment until it passed.  My stomach was in my head.  My neck was definitely in the wrong place.  I was strapped so tightly down I could not breathe. I could not wait for that ride to be over.

Sometimes, when dealing with special needs, it is easy to get stuck in that stomach-flipping moment.  It is easy to think, “We have come so far and he regressed so much” or “Why are we having the same argument with the school and the district” or “Why can’t he play like everyone else?”  It is easy to get stuck in the valleys and gorges and canyons. 

But I encourage you to look toward the mountains on either side.  The one they just came down (because that will show you what they are capable of) and the one they are about to start climbing (because that one will always be better than the last. 

There is an end in sight to every dark valley. 

For me it helps to remember things they have accomplished.  I often remind myself that my son is grade level, even though he misses a ton of school for doctors’ appointments.  I remind myself that at five my son was not talking and now I can’t get him to stop.  I remind myself that he went from not knowing how to make a friend to having many at his birthday party. 

Yes, even these dark gorges will pass.  And they will pass sooner than we think.  And we will be on to the next big and wonderful goal and accomplishment next week. 

Box of Chocolates

As this year begins, I encourage you to see the mountains for what they are – accomplishments.  Take the valleys for what they are – lessons to be learned.  And move forward with a purpose and vision of accomplishing more than you ever thought possible.  We did.  And I wouldn’t change it for the world.

The Moment

When one pictures parenthood they see themselves as perfect parents with perfect kids. Children will be well behaved and, if all goes according to plan, will be captain of the football team or dance diva and go to the best colleges on a full ride. Parenthood is supposed to be filled with lots of girl scout cookies and football games. (Don’t believe me, just get a load of the Netflix show Yummy Mummies!)

No one expects news from the pediatrician, “Your child has some special needs.” Cancer. Downs Syndrom. Autism. Those scary words are not on the top 100 of what you want to hear from the doctor. I have heard it described as a feeling of being put in shackles.

Immediately upon hearing that your child will have more needs than a “streamlined” “average” “normal” child, your life changes. You enter the grieving period. You grieve the football star. You grieve the dance recital. You grieve the sleepovers and parties. You grieve a life you planned for your kid…and yourself.

Denial. Anger. Bargaining. Depression. Acceptance. These are the five stages of grief. As a parent with special needs, you will (and we did) go through all of these stages…again and again. But, I would argue, every parent goes through these stages over something about their children.

I know parents who grieved because their child didn’t grow up to the NFL football star. I know parents who grieved because their child chose college instead of military service (and viseversa). I know parents who grieved the loss of children. With children (and here is the part they don’t tell you), you will grieve…at some point…over something. Anyone who says something different is selling something.

That can’t be right!

Denial

When my husband found out our little guy had Autism denial was the word of the day. He blamed our son’s behavior on teachers and babysitters. He blamed the delay on lack of routine due to deployments. Autism just could not be true; not for his son…not for our family. Surely the doctor was wrong…surely there was a need for a second opinion…surely this life long diagnosis was not meant for our family.

I came into the picture later in our son’s life. Children were never really a part of what I thought my family life would include. So, as marriage was a packaged deal, I skipped to step six. But many of my friends have told me story after story of denial. It is from their stories that I write today.

Frustration overload

Anger

Hubby never really got angry. He skipped the next two steps…once he came around.

Anger is something I can relate to. With Autism there is never a dull a moment. For every two steps forward, with every small change, one can “regress” four steps back. This gets old fast.

This stage of grief comes in waves for me.

When I see my son make so much progress and then we get orders to move and behaviors I thought we had overcome a long time ago come back; when hormones begin to hit and my son has more challenging behaviors; when no one comes to his birthday party because he is considered the “strange” kid; when no one wants to babysit because they do not understand the diagnosis I get angry. I get angry at the diagnosis. I get angry at life. I get angry at me for not knowing how to better understand or handle a situation. I even, yep, I get angry at God for allowing something like this.

Now, please don’t hear this as life is angry. It is in no way angry. These are just stages that we go through as life molds and changes with us. We have learned to celebrate life. But I would be lying if I said I never got angry over the reality of life with special needs.

What if…

Bargaining

For some of my friends the bargaining starts with God. “God, if you take this from me, I will go back to church” or “God, if you take this from me, I will volunteer more in my kid’s classroom and be a better parent.”

My husband and I both skipped this step. Perhaps because he is logical and just deals with life as it comes and I already believe God has the best plan for me to give me a hope and future. But this stage is often a long-lived stage.

Depression….took second place at State Champions

Depression

When I found out that my little guy had autism…well, I did not deny at first…I skipped to the sixth step. But when I realized his nieces and nephews of the same age were joining sports teams and having play dates and birthday parties, I jumped to depression.

The life of a parent with special needs is a lonely life. People, in general do not understand (or do not want to) the reality of life with special needs.

Many times, when I would reach out to family and good friends, I learned quickly that many challenges with special needs need to be faced alone within our immediate family. Instead of support, I learned we got pity, ignorance, and family and friends withdraw. You quickly learn who your true friends are…and they are few and far between.

For me, add in being a military wife and moving every few years, I have found finding friends and keeping them to be much harder.

A complete family

Acceptance

This is sort of where I came into the process. Because my husband and son are a packaged deal, I just came to terms with the fact that my life was forever changed by the sweetest and most challenging kid I could ever imagine.

It was at this stage I started researching.

I researched what caused Autism (spoiler alert – NO ONE KNOWS). I researched cures for Autism. Guess what? There is none. I researched what effects those with Autism and how to make life easier for them.

There is so much out there! From ABA therapy to diets to vitamins, this field is young but connected. I have learned so much!

One in fifty-nine children, according to the CDC, has Autism. Autism occurs in all races, ethnicities and socio-economic classes. It is the fastest growing diagnosis in America. But it is also the least studied. Yet, nowhere in the research did it say this was a life-ending diagnosis. Nowhere did the research say life stops because of this diagnosis. Nowhere in the research did it say this was the person.

With a variety of tactics and lifestyle changes, my family is more and more healthy because of this diagnosis. We eat better. We spend more time together. We even communicate better – believe it or not.

For those wanting to know right away what we did to get my son from not talking to talking or from not being able to hold a broom to hitting a tennis ball with a baseball bat, I promise to share.

The Moment

For those who just found out their child has a special need or life-threatening condition, it is a process. No one expects you to have all the answers. And the stages will come and go in waves…if you are anything like me.

But, you are NOT alone! No longer should we be a community that hides away. Reach out for help. If you’re angry, be angry. If you are scared and depressed, reach out! No one should have to walk through life alone.

Man is not an island. There are probably more people than you know in your life touched by this need or that need. Go for a cup of coffee and vent or watch a good documentary or enjoy listening to the problems of others (believe me, it really helps to know you are not the only one with problems!)

But, please, don’t let the circumstances of life dictate how you live it. You are the rudder of your ship. You get to choose which way you go.

Choose life. Choose hope. Choose joy.

Celebrate Life

Being the middle of seven children, I have seen the gambit in behaviors. Everything from stitches and fights to games of “War” and dances. I have been blessed to always have a sibling on my side when life turns a sour leaf and family around for holidays…and sometimes when I don’t want them.

But, not everyone is as blessed.

Special needs children are one of the largest groups of children in America…and unfortunately, one of the most often forgotten and ostracized. Many hear the words “special needs” or “Autism” or “Down Syndrome” and immediately think “stupid,” “hard,” and “pity.”

They could not be farther from the truth!

Our little bundle of joy was diagnosed with Autism at age three. And, like all parents who hear that, there was some fear and trepidation (a discussion for another time). At the time, and up until he was about five, our kiddo did not speak. There was loud screams, throwing, tantrums and the like because speech communication was not possible. Getting dressed was a chore as he could not put socks on by himself much less zip a zipper to his pants or button his jacket.

Hard? Yes. But, do I need to be pitied? No!

You see when my son first started to say small sentences – PURE JOY! When he started to be able to zip his pants – JUBILATION! When he started to got straight A’s having to be pulled from class on a daily basis for doctor’s appointments – PRIDE would be an understatement. I even told my husband my kid was the smartest because he did what streamlined kids did in half the time!

What living with a special needs kid has taught me is… [Read more…]

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1. Celebrate Life

In our day and age, it is really easy to get down and out. We are inundated with negative thoughts and reality. News broadcasts deliver only negative news and life hits hard when it hits. Seeing the negative is like pouring a cup of coffee – most of us do it without even thinking.

Living with Autism teaches celebration of life. When you can constantly find growth it is easy to be optimistic. When you can see that life is not in a diagnosis but a person it is easy to enjoy the beauty of a hand-painted birdhouse or a freshly made pot of coffee.

Life is about teamwork. And when you have a great team (my husband is a rock star!) the support makes life that much more colorful and brilliant.

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2. Enjoy the Little Things

I will admit there are days when life feels like it will sucker punch me every chance it gets. But who’s life doesn’t do that? Living with special needs does not mean that life is easier or harder than for anyone else. It just means we (those of us who have special needs in our lives) face different challenges.

So, like every other family, we celebrate the little things.

We celebrate cutting a straight line. We celebrate our little one talking and playing WITH a peer. We celebrate the full sentence. We celebrate jokes.

These little celebrations may seem little but they are HUGE accomplishments. And they remind us that we are more than scary words. Doctors do not always know best. Just like with every other kid, our kid is more than the sum of his doctors’ visits and school meetings.

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3. Don’t Sweat the Small Stuff

Prior to special needs, I would sweat the small stuff. Little things like my sister not emptying the lint trap in our family dryer or how much the scale tipped when I stepped on it were heavy weights on my shoulders.

Autism taught me life is more than the small stuff. There are bigger things to worry about in life like family, doctors, and school.

If it is a choice between my son thumb sucking while focusing on homework or throwing a tantrum because he does not want to do homework, guess which one I am ignoring?

If it is a choice between not reading and reading a comic book, guess which one I am telling his teacher he gets to read?

If it is a choice between rocking in his seat and being quiet or jumping out of it screaming, “Pick me! Pick Me!”, guess which one I am telling the teacher to ignore?

There are big battles and small battles and some battles you just don’t fight. Special needs have taught me how to better see the difference.

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4. Don’t Miss Out!

I know many families in the special needs world. Many on the Autism Spectrum. A lot of families think this diagnosis is an end-all to life as a family. Many do not leave the home…ever. Vacation – thing of the past. Trips – never going to happen. Movies – dream on!

When the word “Autism” came into our lives, our son was not talking, not potty-trained, screamed 90% of the time, was very hyperactive and threw tantrums that would make The Hulk look like a mouse. But, we made the choice early on to not let the diagnosis dictate our lives. We made the choice to hold our son to the same standards as any other child and not let his diagnosis be his crutch.

(I know I hit a nerve with some of you just now. I know there is a spectrum and big trips are hard. I know about Regressive Autism. I know first hand about the challenges of tantrums, non-verbals, and the complete difficulty it is to even get childcare for a couple hours of respite. I understand the reason some families choose to stay home. No judgment. It is just not what we chose.)

We chose to take our son out in public to things like museums, theme parks, and, yes, movies.

We did not do this without a plan. We made sure to follow all applicable guidance. But we did discover, that for our kiddo, the exposure helped with social situations, speech, and relationships.

We have a don’t miss out mentality that has served us well.

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5. Make Time

It is easy to forget to set time aside for yourself in a regular run-of-the-mill-under-the-radar kind of life. But add in multiple weekly doctors appointments in different cities on different days, school IEP’s, parent-teacher conferences and regular life of working full-time and it becomes really easy to forget about yourself and your family.

I don’t mean you forget your family. What I mean is that it is easy to forget to spend quality time with them.

We have learned that time apart each day whether in a workout, reading a book or playing a video game (yes, I said it) is essential to sanity!

We have learned that game nights, arts and crafts and reading together unite us beyond diagnosis and beyond the stress of the battle.

We have learned that date night does not always (and usually doesn’t need) a sitter. We enjoy a movie night in front of the fire with a glass of wine. We enjoy reading to each other. We enjoy sitting out in the hot tub and talking about life. None of these cost a lot of money. None of these require a baby sitter. And all are an essential investment in our marriage.

More to Life

So, does special needs mean a life of hard work? Yes! But whose life is not hard? Does it mean my life is different than most? Yes, but who wants a normal life? Does it mean I am to be “pitied?” No! If nothing else, I have been blessed beyond most. I have learned more than most. I have enjoyed life more than most.

Don’t let the diagnosis stop you from loving and living life. Don’t let a diagnosis of others scare you off from participating in their life. Don’t let the social understanding of special needs (which is highly lacking and often a misrepresentation) be your understanding of them. Be open. Be honest. Be willing. Your life will never be the same again.