Friday, June 2, 2017

Finding the Light

I'm sure everyone has read  Welcome To Holland.  This short but powerful piece has been useful to me several times on our journey.  I often share it with folks who may not understand what it feels like to find out your child has special needs.  After all, we all go through our lives doing what we know how to do...until we need to learn a different way.  Being a special needs parents is exactly that....a different way of parenting.

Lately I've been thinking a lot about how my life has changed since Drake was diagnosed with autism  three years ago.  In some ways  life before seems almost dreamlike.  Yet, I don't find myself yearning for it.  I think early on I made it my mission to do anything and everything in my power to help him have a happy and successful life.  The first year was tough, trying to navigate this new world.  A world I had no clue about until I dove in, feet first.  Or maybe it was more like a belly flop.

To me having a child with special needs, autism specifically, is something like this...


Receiving your child's diagnosis is much like being in a very light and bright room....but suddenly everything is dark. There is no light anywhere.  You  manage to find the door, open it up and walk into another dark room.  Each and every time you find your way to a new door there is nothing but darkness.  You scream.  You cry.  You panic.  Or maybe you like the darkness?  Perhaps you need the darkness to envelop you so you don't have to think about how to get out of the room. Could it be that you're too afraid to try?  You're unsure of yourself and feel like giving up.

You wonder many things.  Why has this happened?  What caused the lights to go out?  Who can I get to help  me?  Even if I can think of someone to help me, how will I see to call them?  How would they find me in this very dark place?  You do not know anything about navigating your way because all of your life you have had light readily available.  You've never had a reason to learn about finding your way without it.

Then suddenly you feel this little tug on your hand.  In that moment you remember that you are not alone.  Your child is with you.  Mind-numbing fear begins to creep its way into the very recesses of your brain. Both of you are in complete darkness with seemingly no way out.  You try to pull yourself together because you need to be strong for your child.  You don't want him/her to be afraid.

You begin to feel your way around the room.  You look for the light switch, you look for candles, flashlights, or anything that could be a source of light.  The entire time you are holding onto the child so they will not get lost in this dark room.  The thought of them getting away from you scares you far more than the darkness.  It's so incredibly difficult because for some reason your child cannot speak in this darkness.  Yet surprisingly, the child isn't afraid at all.  They are content, happy, and seemingly at ease in this very dark world.

Eventually you get yourself together and figure out ways to navigate. You learn to do things in the dark.  You learn to rely on your senses to get around in this dark world.  You keep trying new things until you learn how to live life pretty comfortably in the dark.  And as always....that little hand is tugging you, leading you, pressing you to move forward.

Then one day you realize there is a sliver of light.  It is so tiny that you feel like your mind is playing tricks on you.  You try not to get your hopes up and even wonder if you are hallucinating.  Days, weeks, and months pass until one day you realize each day has brought a little more light.  You can actually see things in the room again.  Things still look a bit dull and somedays you can see much better than others, but you are relieved to see light again.

You also realize that other people have been there in the dark with you and your child.  You couldn't see them for your own fear and worry.  You begin to have conversations with them and are relieved to learn that you are not alone. Walking around in this very dim, sometimes dark room begins to become more bearable.  Sometimes you wonder about all those people you used to know who are still in their very light and bright rooms.  You wonder why they never came to help you while you were in complete darkness.  Then you realize they couldn't come because they don't understand the darkness.  They didn't have a little hand tugging them to plunge in further. Still, it hurts at times.  They could have brought you a flash light.  They could have checked on  you.  They could have helped in some way.  Later on you learn that sometimes dark rooms are not for everyone.  Not everyone has the privilege of learning to walk around in the dark.  Not everyone gets to feel the joy of seeing that first glimmer of light.

This journey with Drake has taught me many things.  I can assure each and every person reading this that I have more light in my life now.  Drake has taught me far more than I will ever teach him.  No, my life is not the same, but when I learned to walk around in the dark and I held tight to Drake's little hand I found a new me....a me I didn't know existed.  Our life is different.  The room is still sometimes dark and scary, but I also know that light can always be found.  As long as I have this little hand in mine I will do whatever I can to wait on that light, no matter how long it takes.








Tuesday, April 18, 2017

Fourteen Candles

There isn’t a day that passes when I don’t think of her.

Of course one could say that is huge improvement from dwelling on her every second of every single day.  But, I suppose after 14 years things change. 



 Lexi would be 14 years old today.  Surreal. 



I remember the moment she was born and how terrified and overjoyed I was at the same time.  I was a brand-new mama.  I didn’t know what to do with a baby, but I was so excited to try.  However, right from the start I had this gnawing feeling that something wasn’t right.  One week later we found out that her heart was very abnormal and our worlds would be altered forever.  I never dreamed that she wouldn’t live to see her first birthday.  I never dreamed that I would only have her with me just over nine months.  I never knew pain until I held her fragile body in my arms until her heart stopped beating. I explained most of our journey and our loss of Lexi in last year’s blog, Heaven Has A Teenager.

Every year since I started this blog for Drake, to spread awareness for autism, I promised myself that I would give tribute to Lexi too.  Technology wasn’t as advanced when she was here with us.  I didn’t have an outlet to share my thoughts and feelings.  In many ways I’m glad.  The emotions I felt during that time were too raw.  Losing a child changes people in ways that nothing else can.  I think most people assume that if you survive such an ordeal that you are strong, brave, and can handle almost anything else. 

The strength that comes from losing a child is not the same strength that comes from surviving cancer or surviving a horrible car accident.  Child-loss brings fourth unwanted strength.  A type of strength that is forced.  A strength that makes you trudge forward, while a piece of your heart is buried under a small mound of dirt in a little white casket. 

Yet, despite such intense heartache, I know where Lexi is and I know that one day I will join her there.  However, the loss is so great that hope seems mythical during the first days, months, and even years after losing a child. In the years since Lexi has been gone I’ve pondered many things about life, loss, and the hereafter.  Life took on a whole new meaning when I lost her and I don’t think people who lose children view life the same as people who have not had the unthinkable happen to them.  I think perhaps this may be why people avoid talking with me sometimes about struggles in their life.  They assume that nothing they go through can ever compare to what my husband and I have been through.  While that may be true to a degree, I understand that life still has struggles outside of the suffering I have faced.

 Unless you have lived this, you have no way of knowing.  You have no idea how precious each second with your child should be.  Cherish your children, always. You have no idea what it feels like to go home to an empty house with baby things scattered all about…and no baby. But, at the same time, I know my loss is not the same as what others may suffer.  I’ve always told myself that losing Lexi at nine months old was a blessing in many ways.  While many of you have no way of knowing what losing a young child feels like, I can’t imagine the pain of losing an older child.  I can’t imagine how much harder sudden loss would be verses a loss we had time to prepare for. I can’t imagine the gut-wrenching pain of losing a child suddenly in a car accident, drowning, or freak accident. I can’t imagine having your teenager laughing and joking with you one morning, but then gone by the afternoon.  Somehow that pain seems even more unbearable.

Lexi will always be a huge part of me. She will always be at the forefront of my thoughts. Sometimes my breath catches in my throat when I look at Drake and he makes a certain face or shows me his pouty lips. I can see her for the briefest second and it brings me joy and heartache at the same time. 

Then sometimes like today…she is all around me, reminding me that she is just fine.  I’m not one of those folks that thinks people can look down from Heaven and see what is going on here.  Heaven is a perfect place with no sadness and pain.  I feel like there is too much sadness and pain going on here for the happiness of heaven to behold.  However, my bible doesn’t tell me the whole story…and I know there are angels all around who can see what we are doing here on earth. Proof of this came today.

Just now as I am typing this a Facebook friend who has no idea that today is Lexi’s birthday or the significance of this image sent me the following photo….





Smiley faces were what Lexi loved most and they would almost always bring a smile to her face.




Simple reminders such as this let me know that Lexi is happy. In my mind, I have this amazing guardian angel who sends me these simple reminders, quite often, that she is just where she needs to be.  I just need to be patient and finish my job here before I can see her sweet face again.  I thought for a long time that my purpose on earth was to be her mama.  Many wonderful things happened in her short life despite any amount of heartache we faced.  However, I believe she was preparing me to be a warrior mama for Drake.  God blessed me with this beautiful, healthy, baby boy and I have no doubt that he has big things in store for Lexi’s little brother.


Happy 14th Birthday, sweetheart.  I can't imagine what kind of celebration you are having today.  I know it is magical. Until we meet again, I love you.














Monday, March 13, 2017

You.

 
The one over there feeling sad and alone.

I have something to say to you.

Something you may not be ready to hear, but I think it's important to be honest.

You are going to have many, many, days like today.  In fact, you may have several days in a row like today.

However, I need you to know something.  Some days won't be so bad.

Some days you will smile, laugh, and feel joy like you've never known. . Those are the days that you hope for.  Those are the days that you need to remember on days like this one.

Remember the day...

When your kid said their first word, sentence, or even uttered something that sounded like a word.

When your kid zipped up their own jacket.

When your child used a fork or cup totally on their own.

When  your child learned to write their name.

When your kid went a whole day without any outbursts, meltdowns, or rages. No phone calls from school.  No bad notes.

When your kid was finally potty trained.

When you realized your kid could read, spell, and do a little math.

When your kid engaged in play with another child.

When another child was nice to your child.

When your child slept through the night.

When your child ate a new food....and kept eating days after.

When your child played and enjoyed it.

When your child met a goal at therapy.

When your child broke their routine and was happy to do something new.

When your child gave you a hug, kiss, snuggle, or told you they love you.

When your child was nice to their sibling.

When the IEP meeting was amazing.

When the phone call went well.

When you were finally able to get services.



Hold on to those days.  Why?  Because there will be more of them. If you've only experienced one or two of the above, look what you have to look forward to!  I know that some of us have horrible days.  I know that it's hard to see any of the good in our lives on those days. But one thing is for sure, mama/daddy...you must never let the days get so bad that you lose hope.

I believe our kids, no matter the severity of their disability, need us to hold on to hope.  They need to know that we will always be their cheerleader, their advocate, their voice, their helper, and the one that pushes them to be all they can be.  They need us to be strong, even when we don't think we can do it another day. The only way to maintain that strength is to hold on to any thread of hope you can find.  It is easier said than done, I know.

I know how easy it is to get down.  I know how isolating and lonely this journey can be.  But, I also know how much joy I feel every single time Drake meets a milestone.  The joy we feel as special needs parents is so much different than the joy the parent of a typically developing child feels when their kid rides a bike, or hits their first home run in baseball.  We get that same kind of joy when our kid walks up to another child and engages.  We get that same joy when our child eats a slice of apple or puts their cloths on without help.  Its a different kind of life, but it is ours.

You.

I want you to know that everything is going to be okay.  It may not be okay today, but it probably will be okay tomorrow...or next week....or maybe even next year.  But I promise you this, you will get past this bad patch and be able to look back and see how much stronger you are. Not only that, your child will be stronger.  He/she may be going through this horrible behavior because developmentally something amazing is about to happen.  The situation at school may get better once a new year rolls around.  The hurtful things your child said may be because they had a headache and can't communicate when something is hurting them. What is happening today does not define what will happen in the days to come.  Never forget that you can do this.  You're doing it right now.

Hope.  Always hold on to it.  Let it be like breathing, very much a part of your survival.   You cannot make it through those bad days without it.

You.  You are an amazing, wonderful, beautiful, advocate for your child. I believe in you.  I also believe that tomorrow will be a better day.



Wednesday, February 15, 2017

From Drake













These are Valentine cards and candies from Drake's preschool class. They had a little party yesterday and he came home with a whole bag full of goodies. 

The reason I'm sharing this with you all is I did not buy candy or any Valentine's for his classmates. I bought some cookies for the party and I even stopped by for the last few minutes. 

But, I didn't buy any little favors such as these for the kids. I feel horrible. Want to know when I remembered that I should have? Approximately 10 minutes ago. Today, the day AFTER Valentine's Day. 

Now, before you start telling me that it's okay and it's easy to forget...yada, yada...blah blah....

Let me explain.

I didn't buy any Valentine gifts for these kids because Drake didn't remind me.  I know that sounds silly. I mean technically, he can't tell me because he is non-verbal.  Let me explain further..

He didn't run and jump in the car Monday afternoon full of glee about running to Wal-mart and buying cute little Valentine cards for his friends.  He didn't announce loudly last week that he has a cute girl at school that he wants to buy a bear for.  He never once told me that he wanted me to make cupcakes, instead of buying cookies.  

He didn't tell me any of those things because he is non-verbal.  He also didn't tell me because he doesn't care.  It was just another day for Drake.  It was probably a bit more fun and he most likely wondered why the schedule was  different and why so many people were in and out.  However, I can guarantee you, he did not care.  Don't get me wrong, I believe Drake understands things when they are explained to him.  He is quite capable of learning and is very intelligent.  Just the same, all holidays, birthdays, and the like are not important to him.  He likes things to be in order, simple, and has no interest in the material things of life.  He shows his love and appreciation for others by touching their face with is hand, or leaning in for a hug.  Giving someone a Valentine would seem completely ridiculous in his 'old soul' little mind. 

However, that really doesn't give me any right to just forget, does it?  No, absolutely not. You better believe that these kids are going to get a flipping amazing Easter baggie full of all kinds of goodies.  Yet, I almost wanted to laugh earlier when I realized that I forgot to buy a bunch of cute little kids Valentine's Day cards.  Drake is influencing me in so many ways...mostly for the good.  You see, I don't find all those material things as important anymore either.  Our lives are different and most of the time that makes me smile. 

Our lives our crazy and it is  amazing that I am able to get dressed and look half way acceptable in the mornings.  We spend most of our time in the car.  We drive long distances every single day and have for more than two years.  The past couple of months, no matter what I'm doing, I'm always thinking of the impending doom of Kindergarten coming up in just a few months. I'm crazy.  Seriously, folks....it's amazing what I can do considering my level of sanity.  So, forgetting to make Valentine cards for his class is actually perfectly understandable.

To all the parents in Drake's preschool class who made these adorable Valentine's with their child for mine, thank you.  They are all precious.  One of you made some chocolate covered popcorn...can I just say.."you go girl."  That stuff was the bomb dot com. Seriously, I ate the whole bag. I offered Drake some and he turned his nose up, more for me!  

We live a different life and I can either cry because my kid doesn't care about what other kids care about...or I can enjoy it all to the best of my ability.  Drake may be different but if you really knew him....if you really understood him like I do, you would realize that his different should be a goal for us all. 

Happy day after Valentine's Day!  

Love, 

The Mom who forgot

Wednesday, January 18, 2017

Playing Offense

What does it mean to play offense?
In sports, offense (US) or offence (Can.) (see spelling differences; pronounced with first-syllable stress), also known as attack, is the action of attacking or engaging an opposing team with the objective of scoring points or goals.  Credit: Wikipedia 
As the parent of an autistic child I often feel like I am playing a sport, such as football. I've been playing this sport for over three years, and I still have so much to learn about the game.  I suppose one could say that is the mark of a good teammate, always willing to learn, grow, and be a teachable person.  For the most part I am a team player.  I try to communicate effectively with Drake's therapy team, I make sure I know what is going on at school, I am always researching and thinking of how to make life easier for him.  
I can play many different positions in this sport.  I like to be flexible and willing to go outside of my comfort zone.  Yet, in most instances, I find myself constantly playing offense.  Why?  Because I am Drake's voice.  I am his advocate.  I am his mama.  
You see, my main goal since Drake was diagnosed with autism in 2014 is to make sure he wins this game. Please don't misunderstand, I'm not talking about anything crazy like 'being cured of autism.' When I say, win, I simply mean he has been given all the opportunities possible to be successful.  Drake will develop at his own pace, and I am totally accepting of that pace. However, when I feel that things are not going smoothly or something isn't working out in Drake's best interest, I can act like the loud-mouth, obnoxious coach on the sidelines.  Sometimes I will attack.  Sometimes I will get angry.  Sometimes I will speak without fully thinking through, because there is an urgency...to win. Drake must win the game. He needs to be the one to come out on top.  I want him to go all the way to the Super Bowl ( or the FA Cup for my loyal UK readers).  I probably shouldn't pull on so many face masks on my way to get the win for him, or seem so aggressive at times, but my ultimate goal will always be for him to come out a winner.


I know there will be years when he doesn't make it all the way to the 'big game.' Perhaps goals were not met, health issues, a new co-morbid condition, or perhaps the dynamics of the team changed. But know this.  I am terrified when we have more loses than wins.  I fear things like regression and seizures.  In fact, if I'm being honest, I lay awake at night wondering when they are going to happen. I am petrified when I think about the public school system, and having to send him there without his beloved therapists. In fact, I am so terrified that I am researching other forms of education every single day and have been for months.

 I'm not going to sugarcoat it, when Drake goes through a bad patch or I can't find solutions to issues like schooling...I literally start to lose it.  I will say and do things I don't mean, but I feel I must react.  I will spew out poorly thought out emails, send out angry texts, make phone calls, and do everything in my power to get him back in the game. It's what I do, it's what I will always do, until he can do it for himself.

I am so proud of Drake and all he has accomplished.  He works harder than anyone I know.  This world can be tough for him.  He plays the "game" differently, but that certainly doesn't mean he isn't playing to win.  It is my job to make sure he has the tools and people necessary to make that win.  If that means that I play offense most of the time, so be it. I will try to do it nicely, and I will try to think things through carefully. When I'm not so nice, when I'm not thinking clearly, or when I'm acting like 'that' mama, please remember that I need you to see how passionate I am about this game.  I dove in feet first when Drake was diagnosed, and this is only the beginning. We have so many Super Bowl rings to win.  I can't wait.












Wednesday, December 7, 2016

Sometimes Snow Globes Scream

I've always been fascinated by snow globes.  As a child, I remember having a very vivid imagination.  Snow globes were quite a hit back in the dark ages when I was a child.  The ones with the little cities fascinated me the most.  I used to always wonder if the tiny little people ever wanted to get out of that small bubble and live like the rest of us.  Yet, at the same time, I wondered what it would be like to live in that globe....that perfect little world.

On the way to therapy this morning I had an amazing realization. For Drake, being autistic, is much like living in a snow globe.  Before you all go nuts and crucify me, let me explain.





In the last few months Drake has developed some undesirable behaviors.  He has gone from this sweet little toddler who is mild and meek to an absolute rage filled five year old.  Please don't misunderstand, he isn't like this all the time.  Our sweet Drake is still very much here, but there is also a very new, unfamiliar Drake. My husband and I, along with his whole therapy team believe this new frustration/rage is stemming from his inability to speak. You see, autism is funny that way...it is ever changing.  Drake is changing.  He is developing. He is beginning to understand the world around him.  He is very aware of the who, what, when, and where of life in many ways....yet he can't express these thoughts verbally.  Can you imagine the frustration?

So what does Drake do?  He screams.  Rage filled screams.  He stomps his feet, he hits things, his face turns red, and he is angry.  Just as you or I would be if we wanted to do something so badly, but couldn't.

When Drake first started doing this I immediately recollected a quote by the amazing,  Dr. Temple Grandin.

“I can remember the frustration of not being able to talk. I knew what I wanted to say, but I could not get the words out, so I would just scream.”

It was one of those wow moments for me.  

I've been wracking my brain for weeks trying to figure out a way to make this frustration easier for Drake. We have an appointment coming up next week with his Developmental Pediatrician, he has an  AAC communication device, he has his service dog, he has us trying to help him, and he has an outstanding therapy team. I'm literally doing all I can do and it takes a lot for me to say that. 

However, it is not easy for Drake to understand that, because he wants me to "fix" it, like I fix everything else.  

Now, back to the snow globe.  Imagine for a moment that you live in this snow globe little town.  Everything about the town is just the way you like it.  We will pretend it is Christmas....well, because tis the season, currently. 


The street lights have snowflakes perfectly placed. 

The sidewalk is sprinkled with the first snow.

The shop windows are full of festive and bright displays. 

The few people who live in your town always have smiles on their faces and work hard to make sure you have one too. 

Everyone is happy, pleasant, and perfectly content. 

Beautiful tree branches hang low with the first snowfall. 

Horse and buggy pass by on occasion, much to your enjoyment.

The days and nights are always the same.  


Then one day, you look up and realize there are people who live outside of your perfect little world.  In fact, there is a whole new world.  The people out there are different than you.  They don't understand that you like things to be the same every single day.  They don't understand your language, it seems foreign to them. They want to change the street lights from snowflakes to reindeer.  These people want to do away with the horse and buggy and put a train right in the middle of town.  There has been discussion of new people moving in, people you do not know.  


You are afraid.

You want them to understand that you don't like change. 

You want things to be the way they are right now, forever. 

You want to tell these people that they cannot change your world because it is all you know and understand.  But, they don't hear you.  You talk, and talk, and talk.....but no matter how much you talk  the words never make it to their ears.  

So what do you do?  You scream.  You become angry. You shake your fist at the outside world because you feel like you've lost all control.  No one understands what you're trying to tell them.  The rage is overwhelming because you don't like to lose control like this.  All you know is that people are trying to change things or take things away and they will never know how difficult that is for you.  


I have no idea if this is actually what goes through Drake's mind, but I'm pretty confidant that he feels many of these fears and frustrations.  I can't imagine the frustration he feels.  Yes, it is horribly frustrating to me, it wears me thin, it even makes me angry, but more than anything it just breaks my heart. I pray this child and all our children without verbal communication will find their voice if that is their desire. I wish I could always keep his snow globe just the way he likes it, forever.  Sadly, I cannot.  But, one day...I hope he can express to me that I tried with everything I had to make sure they didn't change those blasted street signs from snowflakes to reindeer.  


Christmas love and blessing to you all! 













.

Monday, November 7, 2016

910 Days Later

It has been 910 days since Drake was diagnosed with autism.  I knew long before May 2014.  I think I first Googled the words "poor eye contact" around the first of September 2012.  Drake turned one year old on the 30th day of that month. I hear so many stories of parents who are devastated upon hearing an autism diagnosis.  I remember leaving the psychologist appointment with a mission.  The doctor didn't tell me anything I didn't already know.  In fact, I needed the diagnosis so Drake could begin receiving therapy.  It was the day before Mother's Day and I remember driving home, allowing only one tear to roll down my face.  There wasn't time for more.

Before Drake was officially diagnosed I lost years off of my life researching and obsessing on the best ways to help him.  We received a little therapy at home through the EI program, but nothing was really helping.  Drake did not respond to the therapy and I was totally at a loss. I knew there had to be something more effective.  It took me months of research to find the right fit for him.  I knew almost immediately when I entered the doors of Drake's therapy clinic that we were home.  For the first time in two years I felt relieved...and for the most part I've felt this way since.  I'm giving you all a little bit of our history because I need you to understand something.  I need you to realize that you will survive all of this. It will seem like the end of the natural world, trust me, I remember.  It's not the end at all, it's just a brand new beginning.

I'm writing this to YOU.

I want to tell you a few things that about yourself and I want you to read carefully.


1.  This is the child you are supposed to have. He/She is yours and you are going to be a good parent, probably a better parent because of this unexpected path.  Yes, I understand that you didn't expect this.  I know this isn't what you planned for.  I know.

2. Stop feeling sorry for yourself and get on the computer, phone, email, and whatever else to find the best therapy for your kid. The earlier your child receives therapy the better.  I'm not going to tell you which therapy is the best (Yes, I know that is what you wanted me to tell you), you have to decide what is best for your child.  There are so many effective therapies out there...find the one that will best help.  You know your kid, not me.  If you need financial support, get it.  If you need an advocate to speak for you, find one. If the school system isn't helping you then gather up about 10 therapists, advocates, family members and show them what is up.  Seriously.  Be demanding.  Be crazy (that is what they will call you anyway), but get what your child needs.

3.  Your child will develop at his/her own pace.  Read that again.  It will be at their pace...not yours.  Write that on a post-it note and put it up in the bathroom, stick one on the fridge, put it on the dash of your car...tattoo it. Just don't forget it.

4. You will meet people who will astonish you with their ignorance.  But.  You will meet far more people who will astonish you with their understanding.

5. You will probably cry a lot in the beginning.  I'm saying this only because I hear other people talk about crying.  It takes a lot for me to cry.  My brain has been so altered by life that it tends to take more than an autism diagnosis to shake me up.  Don't get me wrong, I have cried...but probably not as much as I should.  Get it out. CRY.

6.  You will need to let go of people who don't get it.  I didn't say slap them, curse them, kill them, or put them on a hit list.  Just let them go.  If they don't support you, let them go. If they don't understand what you are telling them, let them go.  If they don't believe your kid should be labeled, let them go.  If they tell you that you "baby" your child too much, slap them.... Just kidding...let that idiot go too. Walk away.  Don't look back.  You'll meet someone shortly who will get it all, I promise.

7. You need to look at the world through your child's perspective. It's beautiful.  It's simple.  It's not complicated like our world.  Don't focus on making sure your child acts like everyone else. When you get to that place, and you will....you'll begin to notice a beautiful world that you never knew before autism came into your life.  Drake absolutely loves to watch the trees outside when the wind is blowing.  The look of amazement and peace on his face is a sight to behold.  Be willing to enter their world...they want you there.

8.  You need to find something that helps you get through this, something that is legal.  My release is writing.  I feel raw when I'm done, but I also feel refueled.  Of course, it doesn't hurt when my hot husband takes me away for a weekend once in a awhile either.  I've heard of people taking kick boxing because they are angry and need to get it out.  Some work out(not me, but some people).  Go watch a really violent movie (you'll leave feeling empowered and ready to conquer the world).  Get your nails done. Get a pedicure.  Go for a walk in the woods.  Paint. Scream. Cry.  Just don't forget that your kid needs you and you can't get them the help they need if you are empty.

9. You will be a different person soon.  You'll look back at some point and remember the person you were.  It will seem surreal.  It may seem sad.  You will be fine. For me, I was a teacher.  I loved teaching.  My middle school students taught me the fluent art of using sarcasm and I will love them always for it. I miss teaching, but my life is different now.  I am so intently focused on autism that I can't imagine doing anything else.  I hope to one day be able to work again, but for some reason I can't see myself working outside of the autism community.  It has become such a part of my life and honestly, I'm better because of it.

10. You are going to be okay.  I promise.  You've got this.  You are a warrior.  Your kid is proud of you. I am proud of you. One day you'll look back and realize you are laughing more than you're crying.  You'll realize that the little things are often bigger and better than the big things.  Parents of kids with special needs never take one moment of development for granted.


Now, get out there.  You've got work to do.  Find your tribe and lean on them.  Make that phone call, write that email, drink that 8th cup of coffee and for goodness sake...get off of Google. Your child needs you to be their voice, their advocate, and they need you to believe in them.  Always believe in them.







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