No Showers and Bad Dreams

There is a scene in Patch Adams when Robin Williams portraying Patch Adams character 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 been 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.