Category Archives: AUTISM

OVERCOME and be 100% honest

I have not written in forever… and honestly my heart and head is running over.  But today I must write because my eyes are running over with tears.  It seems to happen every year on this day.  April is Autism Awareness Month and today is National Light It Up Blue.  I cry when I see all the landmarks across the globe honor this day – in a small way – honor our son. 

Awareness days – I really wish the problem didn’t exist so we didn’t have to have one.  For example, Breast Cancer Awareness month , I wish breast cancer didn’t exist so we didn’t have to be “aware”.  Autism Awareness month, I wish autism did NOT exist so we didn’t have to be “aware”.    The ironic thing is people who live with breast cancer or love someone with breast cancer or autism or Parkinsons, etc… are AWARE EVERY DAY!!!   Part of me really appreciates the attention that this month brings to Autism,  but it is more than just wearing blue.  It is being truly AWARE 365 days a year.  It is about compassion for people who do things you may not understand.  So in true honor of Sam, I am going to be 100% honest!

AWARENESS —

It is about not staring at my child when he can’t hold his emotions as a result of a crappy movie ending.  He is 100% honest with everything including his emotions, something I could learn from.

You do not look at us like we are crazy when we ask particulars about menu items – like, do your French fries have skins on them (or potatoes as Sam would say).  Or if you have nothing on your menu he will eat, so I pull out a pile of Samuel approved foods.  

You can avoid looking at me as I have to take my son at the age of 10 into a woman’s bathroom because the place of business does not offer a family bathroom and I can’t trust the “men” in the restrooms because if something would happen he can’t tell me.   He can’t handle the sound of the flush of the toilets, so would not flush.  And he requires a reminder to wash his hands (which I am not sure just being a boy and too busy or that he has autism and forgets).

When I hold his hand to walk through a parking lot or have to pull him to the side of an aisle in a grocery store because he has safety concept and space concept issues.   Don’t be evil and stare.  Don’t bump into him expecting him to move.  I teach him to say “excuse me” when he has to cross your space, please do the same to him.

When we purchase 5 of the same exact pants and shirts, don’t question my judgment.  Also, if you see him wear the same outfit every single day, chances are it is clean (not 100% guaranteed, but that is his moms issue – lol).  When we find a comfortable fabric in his color… that may just be the only outfits in his dresser. , and it simplifies matching and fighting over what he will wear.

Please hold your suggestions on what we need to do for him – like just make him eat other things.  I will gladly let you try, but it isn’t going to happen.  I know he needs braces, but I am just thankful he allows them to do routine dental care.  I know his speech is not where is should be but did you know the resources are limited.  We had a speech therapist who never worked with a child with Aspergers so I ended up doing more teaching and explaining in our appointment than he got therapy!  I know is every quirk and when others point it out it just makes me feel guilty for not doing more!

To the insurance companies that do not cover my son for care related to autism because it is diagnosed on the mental illness axis.  Do you know it took everything we had to allow that label so that he could get the care he needed. However, as a result, you no longer pay for his care and won’t cover PT and OT and speech.  So I sought out Medicaid for our son and fought the system only to discover there are limited resources for him within a 60mile radius within the state lines.    And our son is pretty high functioning, what happens to the children who need so much more.    This is why every denial I receive you receive a reply, an appeal, and a picture of our son so you know you are denying a CHILD not  a diagnosis!

To the healthcare provider whose solution to him not taking medicine could be to either just make him take it, crush it in Peanut butter (of note one of the few proteins he will eat) because he won’t know (he will know).  Know that as a mom and a nurse I had tried every option before proceeding to the hospital so our son could be held down by 6 people to get an IV in him so we could get antibiotics.  Yep, that’s what I wanted for my son.  And shame on me for allowing a dental staff take five people to get medicine in him to sedate him for dental procedure and then not let me in the room.  P.s. both staff have been FIRED from the care of our son.

To the ignorant people who stare and judge when a child has a fit and assume they are a brat and never considering they are overwhelmed, or nonverbal, etc.    If you see a parent struggling with a child, pause and ask if you can help if you are going to stand there and stare and judge.  It is amazing what you may learn and how you can touch someone’s life just by asking.

Also avoid the stereotype that all boys play sports.  Our son doesn’t play sports, he probably could have.  Unfortunately now it is about competition and not just playing.  He would have stood out as the weakest link on a typical team.    (p.s. thankful for the Miracle League who makes softball possible for kids who want to play without the  competition!!!)  But, he can play in the snow for hours, the mud for hours, designing elaborate play scenarios for his legos that he created, build a train that could travel through every room of our house.    He also can take a Angry Bird game and make it 3 dimensional with blocks and our angry bird collection.

To the teachers /staff who put together an I.E.P (individual education plan) – please remember it is about the individual child.  It is full of weaknesses and areas of improvement.    I use to sit at a table with strangers, except for the teacher,  as they told me his weaknesses and they didn’t know him.  They judged him on a few tests.  As a mom sitting in those meetings I am fighting back tears half way through (and still sit here and cry when I think of our first few meetings to FIGHT for the changes he needed).    Know that as a mom, I will FIGHT.  When the system and the strangers sitting around the table fail our son – we will FIRE you too!

THANK YOU to

Our friends and family that welcome Sam into their homes.  You know who you are.  The ones who go out of their way to not judge and enjoy his incredible imagination and honesty.

Thank you to our healthcare team – physician and dentist – who go out of their way to make sure his needs are met.  Provide him with compassionate care.  Thank you for believing  in me, as his mom, that brings him to every appointment.  Thanks for listening to his endless stories.  

Thank you to the teachers at Marclay who went out of their way to help him get through second grade.  I just wish the system would have been adaptable to continue to meet his needs.  So thankful to live in a state that has other options for our son.  Agora has been life changing for us.  I don’t have to worry about him going to school.  Worry that he can’t tell me what happened.

Thank you to the awesome servers at Red Lobster and other restaurants that just smile with our crazy question and our orders.  Thank you for asking him his name and inquiring about what ever toys he brought with us (Godzilla, Star Wars, Lego creations).

Thank you to his sister who loves him without limits.  It would be easy for her to deny him or avoid him when she is with her friends, but that never happens.  Thanks to her friends who love him too!!!  I dare anyone to go up against her!!!!

Thank you to the strangers who do not stare.  Or those who take the time to ask questions. 

Thank you to Sam for making me more aware of what life is about.   For helping me see the world through your eyes full of imagination and honesty.

Thank you for my faith/God  on days like today that I struggle if I am doing enough… for the days I am angry that things are not “typical”… for the days I am jealous… for the days I need a dose of reality of how blessed I am… for the days I just need an extra blanket of grace.. for the days I need boldness to stand up for him… for the days I want to cry and the days I do cry (like today).. for the times I worry about his future… for the days I need to adjust my view and just look up!

THANKSGIVING vs THANKS-LIVING

I have loved the thankful posts everyday by so many on Facebook.  It has been a great month, which likely end either tomorrow or the end of the month.  I have seen people who have been grateful this month that complain every other day.  I have seen people who continue to be negative and post nothing about being grateful; therefore, they are hidden from my news feed.  It makes it harder when they are good friends and even harder for me when they are Christians.

  • Every day God gives new mercies (Lamentations 3:23).  Every day I am alive I get a fresh start.  But some days it takes extra for me to leave the baggage behind.  I have the magnet on the refrigerator reminding me NEW MERCIES!
  • Enter his gates with Thanksgiving, enter His courts with praise (Psalm 100:4) – I do not see anything about whining and complaining.  This year I have had 3 people close to me going through cancer.  They may have mentioned some of their symptoms, but everyday they continued to praise God.  So even when health is not good, we can be thankful to be alive!
  • Rejoice always; pray without ceasing; in everything give thanks; for this is God’s will for you in Christ Jesus.…(I Thessalonians 5:16-18)   I think this would be a great tattoo.  I think if I am always rejoicing, praying, and giving thanks, I can’t be judging, whining, and worrying.

Mary hates the word, but it is so true – it is all about choice in this lifetime.  God gave us free will to choose.  I can choose to praise Him despite the circumstances or curse Him because of the circumstances.  I can choose to focus on Him (who can solve all problems) or focus on the problem (which will never solve itself).   God knows when things are tough, and guess what He is already standing right in the middle of that problem.  The issue is I am so busy trying to take care of it myself, that I can’t see Him.  Some situations that are tough for many right now:

  • Loosing a parent or loved one  –  I can focus on how tough it is, all my questions why taken so soon, and sadness  or choose to: rejoice I had them in my life, the memories I had with them, knowing they are in Heaven and don’t want to come back, and they want ME to be happy and living life!
  • Health issues – I can focus on how it impacts my day, makes me feel, etc.. or choose to: focus on being alive, doing what I can do to make a difference.  My mom was a model of this – despite her declining health she did what she could for herself and others. Eventually being able to do NOTHING for herself (including feeding herself, etc.) she still was an amazing listener and was still thankful – she still used her ears and mouth the only things that didn’t require movement.  She would get mad and frustrated, but NEVER stopped praising God.  Oh what a legacy…
  • Autism – I have mentioned before I could question why God gave us a child with Autism or I can choose (which I do every day) to focus on what an amazing blessing he is to us.  How blessed we are to be chosen to have him.  Do I worry some days about his future? Do I cry? YEP, but then I choose to look at what a miracle he is and totally change the focus from the problem to the blessing.  I have recently agreed to help for The Lucas Fund (please check it out at https://www.facebook.com/thelucasfund). I love it because it was started by parents with a child with Autism who wanted to help others walking the same road.  They could have focused on the “oh why me” but instead focused on what can I do to help others – they changed it to a blessing!

The other day this was part of my thankful list  – let me set the stage.. I had worked really hard to get the living room cleaned up and vacuumed before going into work the night before.  I came home to no evidence of ever cleaning.  I slept in a little later than I had planned.  Our children are night owls like me so mornings are not always great.  We had several appointments and places to be.  Sam was slow getting up and the dog was driving me crazy until he did.   Jim called me first thing that morning needing something (keep in mind the poor guy had cereal once again for supper the night before without a complaint!)  A friend was having a rough day and really needed some strength, and it put into perspective my little complaints.  Mary was taking extra long to get ready.  Things were definitely not as I planned.  I could have posted “there are days I am not sure why I even get out of bed.  My kids are driving me crazy.  No one appreciates how hard I work etc… “ and started screaming.    Instead I drank a cup of tea in my cup with my reminder to live today with passion… talked to a friend on the phone (because me rushing them would have only made things worse), and posted the following in the morning (which rarely happens – but this day I needed to count blessings and not burdens… an attitude of gratitude not grumbling…)  By posting the positive it switched my mindset for the entire day.  I focused on the goodness of God and not the craziness of life.

  • 1. a living room floor full of toys leaving no evidence of the vacuuming one yesterday means I have an imaginative little boy (that we were told we would never have) –
    2. a dog who is so excited when “his boy” awakens and heads down the stairs – not sure who is happier to see who
    3. a beautiful daughter who cares what she looks like before she walks out of the home
    4. children who are like their momma – night owls… makes afternoons so much easier
    5. a hot cup of tea in my favorite mug EVER that makes me think of my friend who replaced the first one that fell and broke
    6. my mugs message – LIVE TODAY WITH PASSION – great reminder every day!
    7. a prayer request from a friend and her reminder on her egg carton – This is the day the Lord has made let us rejoice and be glad in it (p.s. I noticed that on one of cartons too!)
    8. talking to a BFF – not just a text
    9. hearing my husband’s voice on the phone this morning first thing this morning – didn’t get to talk to him yesterday
    10. a fresh start – a new serving of mercies!!!

I focused on the blessings of the day, reminded myself of the promise for a fresh start, and counted blessings.

Where I put my eyes to focus (on God or my burden) will change that moment, that hour, that day, that week, that month.  My children see thankfulness lived out loud.  It changes our crazy chaotic life that could swallow me whole some days into a series of blessings that God blessings me richly every day.   It changes Thanksgiving to being one day a year (or a month on Facebook) to intentional THANKS LIVING (or a life of living thanks!)

A spark.. some lessons.. a finish line…

So when your teenage daughter tells you she misses your blogs.. you better get writing.  Mary and I were talking on how I missed writing and had several ideas and started several blogs and why I haven’t written (you know the list of excuses) and she said she really missed them.  So here it is from my long blog break – lessons from a 5K

On Saturday, as I walked in the 5K something started to change and then reminders through the last few days just added to that.  On Sunday, my BFF from childhood was at the Steelers Breast Cancer Survivor game, because she is a survivor and still undergoing chemo to beat breast cancer (along with my friend at church who just finished the treatments and my cousin who is still in phases of treatment).  In the past couple of days extra prayers have been requested for Paige who is fighting for her life, not just for herself, but for her children I am sure.  Four amazing women, just this year, whose lives have been completely changed.  I have a choice in life (my favorite word for Mary – choice), to use all of these events to change me (and then their suffering and battle is in vain) or sit back and pretend it can’t happen to me.  LESSON – important lessons are around us everyday, often experienced by people we love — I should NOT let their battles be in vain, but learn from them and make my life better in HONOR of them.

So the 5K… first of all it is for Autism and to help local children.  Many of you know that Autism has touched our family.  When you have your child, most do not think it can happen to them.  It is the assumption that you will have a perfectly healthy baby and live happily ever after – playing sports, playing video games or Barbies, boy scouts or girl scouts.  I even had the big SUV to haul all of us and their friends everywhere.  But, there are no friends, no sports; however… there are STILL BLESSINGS!  (This is a whole other blog).

Anyway, for MONTHS I have been “planning” to “prepare” for the 5K and get in shape and be “ready”.  Guess what… that didn’t happen.  Prior to the race, I had NEVER even walked that distance… do NOT exercise/walk on any consistent basis… and only exercise is mowing the grass and vacuuming on our home.  BUT, I was doing this is HONOR of Sam.  I had the perfect day planned and signed up our whole family. Well, we didn’t all participate, just Mary and I.  I imagined many friends/family doing the event, and at first disappointed more didn’t offer (just being honest).   FYI – This is why I try to not expect anything and it saves me from disappointment.   I quickly let go of the expectation and realized that just because people didn’t participate didn’t mean the cause wasn’t important (and even deeper Sam wasn’t important).  This walk for ME was about Honoring Sam, but he can be honored so many other ways (a smile by Sam who cuts his hair, Katie remembering his favorite cookies, Bev always seeing little things for him, understanding when he is playing games in church, Andrea swimming and playing with him, etc… the list goes on of people who honor him every day).  We had several friends there who walked and had I focused on the ones not attending, I would have missed out on those that did!  LESSON: Honor is defined differently by each individual person.  Their way is NOT my way, but it does not diminish the intent.

So, Saturday arrives and off we go, with NO IDEA of what was ahead.  Remember, I had never done a 5K and did NOT prepare for this.  I heard people talking about stretching and I was thinking, stretching – what is that (lol)? I go down a hill and then see the hill I have to go up and think “what was I thinking?… I can’t do this!… this is too hard!… why is the trail not FLAT?”  Negative, negative, negative.  I paused on the hill and said to myself “why am I doing this?!?.. FOR SAM!”  and kept thinking of one of his most recent favorite phrases – JUST KEEP FOCUSED.  For example, at the zoo I kept saying we were going to here and then there.  He just wanted to get to the tigers or penguins and said now “JUST KEEP FOCUS”. And I climbed the hill – slowly but not crawling ( =  LESSON: Just keep focus!

All along the route there were young runners from the Uniontown Cross Country team cheering us on.  A golf cart ready to pick up the weary, and since I was one of the one bringing up the rear, I got the offer for a lift often (lol).  After climbing the BIG hill then the many small hills didn’t look so bad.  LESSON – It is important to put things into perspective.  When I think of my friends fighting cancer, my little things really are just little things.    

I was determined to finish the 5K.  Even if last… even if crawling… even if I couldn’t get out of bed the next day…  But as I walked, I had lots of time to think (to help mask the pain).  When I would start to sink into the ‘I can’t do this” I would look at the button I had Sam make that said “I WALK4SAM”.  LESSON – Remember my purpose – sometimes I just need the little reminders of why I do what I do.  

I finished in a little over an hour… The time wasn’t what was important to me, it was FINISHING THE RACE.  In fact, I made a wrong turn and thought I had finished and then I saw Laura and she said you beat me.  I knew I didn’t and realized that I had made a wrong turn.  At first I was oh well, wrong turn.  But then I knew I had to finish the race exactly as I was meant to. So I saw the people who were behind me (only because they were walking very leisurely) and I caught up with them and finished the race the correct way.  It was important to me.  And so I did (so I finished #54 – not #41).  LESSON – it is not about how long it takes for anything that’s important – all that matters is I finish.

I was feeling good that day I wore my orange pin, orange shirt, bright pink scarf – all Sam’s favorite colors.   I was going to do this walk no matter what!  Pure determination! I am so glad I didn’t know about the route, the hills, and how far 3.5 miles really is.  I probably wouldn’t have done it!   But still I carried 100 extra pounds on my body, and I am sure it made the walk that much harder.  There were people that RAN that distance, people that were much older than me that did that same distance – all in less time.  Very humbling.  Then I saw the pictures today, you know the saying a picture speaks a thousand words! Yes, I finished and I did it to honor Sam, but that was just one race, one day, one moment… WHAT can I do everyday to honor Sam, Mary, my husband, God, MYSELF?  I can take care of MYSELF.   I have no excuse now, I walked a 5K with 100 extra pounds and it didn’t kill me.  If I really want to honor them, that has to be the beginning.  LESSON – the finish line can really become a new starting line!

Thank you Mary for the spark that got me to write again… Thank you Sam for being you and inspiring me to walk a 5K…Amazing the things I can do if I JUST KEEP FOCUS!  On my mark, get ready, get set… GO!!!

Fearfully and wonderfully made….

Yesterday, I woke and made the mistake of opening Facebook before I head out for a busy day of therapies and errands.  The article read about vaccines causing Autism.  Well, then I dwelled on it all day.   I intentionally did not share the link.  Here is where I am in life.. please remember this is MY PERSONAL BLOG, my personal opinions, and you do not have to agree!

I honestly can’t go back and say the moment when I thought things changed and our son became “autistic” because I was so involved in living a crazy busy life that little details passed me by I suppose.  I could easily let the guilt of not knowing that moment like many moms know consume me.   But that leaves me stuck in the past and in a puddle of guilt.  As a working mom, I assure you, I could beat myself up most days for a choice I have made from what I have allowed them to eat for breakfast (or not eat any), for allowing a poor choice of clothing for the weather, for not having the house spotless… I could give you a list.  And, if I couldn’t give you a list, I am sure someone on the outside would be willing to provide you my shortcomings.  But I intentionally choose to count my blessings every day despite the guilt I could wallow in.

I can also tell you that every article that has been released about something a mother did prior to the pregnancy or during the pregnancy that lead to autism, I have read and wept.  Wept because there was a chance that my face fit that description and I was to blame…

We also totally delayed diagnosing because our son is high functioning and I didn’t want the label if he could “overcome” and fit in.  We treated symptoms for years by private paying high dollars for many therapies.  I remembering reading a book out Aspergers and realizing how many pages defined him.  I remember hearing the words and thinking what could I have done differently. I beat myself up for not diagnosing sooner and questioned if we would have would things have been different… oh the guilt!

When we go in public and he is with other children I always feel obligated to explain why he is different.  I feel like it would be easier to but an “A” t-shirt (like Alvin wore in the chipmunks) – it often feels like the scarlet letter.  I often get tired of trying to explain and just internally cry.  It isn’t that he isn’t amazing, because he is.  It is because as a society many have set a standard of what “fits in” and we don’t fit that definition.

I struggled when I decided to home school.  Our daughter was an easy decision because she is a self learner.  Our son loves recess and researching things he loves.  I had many question my ability and dedication.  I questioned my ability (not dedication).  But we decided how much time was being wasted with the current school system (note NOT THE TEACHERS but the system)  for therapies and adaptations to fit in the I.E.P.  It was just like his early childhood and our insurance who did not pay for “developmental issues” and we resolved to make sure he had them without the system.

Speaking of the insurance company, since Autism falls under psychiatric diagnosing it does not have to pay for any therapies or care.  I have so battled that system because they even make him not “fit in” to their definition.  I am tired of him not fitting in and it gets exhausting to continue the fight!

I can tell you I will advocate for our children.   When public figures dishonor autism by thinking it is okay to lump autism and retarded in the same sentence.  Did my little voice have anything to do with the public apology and removing the line from their song.  I will never know, but in my heart I let them know it wasn’t okay.  The time Time Magazine put on the front cover about Autism being the New Crazy, a letter went in the mail with his picture because I wanted them to look at him and say he was crazy.  When I fought with my insurance, a picture of our son because I needed them to know who they were denying – not just another number.  Did it change anything, no, but I needed a voice for our son.

So back to the article….  I have intentionally chosen NOT to focus on WHY he has autism.

I am tired of

  • the guilt of feeling like it was something I did or didn’t do – should I have refused the vaccinations, avoided something during pregnancy, somehow helped his decelerations during childbirth, noticed something sooner.  I intentionally choose not to live that guilt anymore, but every time an article comes out it puts that rock in my gut again.
  • beating myself up when I hear how awesome other kids are doing in therapy or in their diet, etc.. and think what should I be doing differently.  I keep my own bruises from the beatings totally concealed with my “we are fine” face.
  • people pointing out to me the flaws he has either by telling me or that silent glare I sometimes get in public.  I know his quirks.  I live with him 24/7.  I am working on his quirks (speech and OT, etc), but so ready for people to ACCEPT him just as he is.  Fitting in is NOT all that it is cracked up to be!

By questioning why he has Autism makes me feel like our family is so much better and don’t deserve a hardship.  When in reality, our family is so awesome that God knew we could handle this.  He trusted him to us to give him a life that another family could not offer.

When I focus on WHY, I miss out on the WHAT he is in our life for.  To teach us some beautiful lessons about honesty, love, compassion, and his many other gifts (his memory for one).

I choose to believe that just as God knows the number of hairs on our head, just as God knit us in the womb, God knit autism into our son for a very special purpose. It is my job as his mom to help him fulfill that special purpose in my life and help him become exactly who he is meant to be.

If I hold onto what might have been without his autism… hold onto how can I fix him… hold onto how can I make him fit in… I will miss out on all the blessings and amazing discoveries I have everyday when I look into his face or hear his stories.  I have a friend who says it perfectly – everyone needs a Sam in their life.  Our family would not be the same without all the quirks, and I am quite biased in believing we have a great family.

I just started reading a book called In Between and how we are so focused on waiting for the big moments in life that we miss all the little things, the little blessings in between.

So, you will not see on my facebook about what may have caused autism (NOTE do not hold it against those who post this or need an answer to why because that is where they are in there life). I intentionally choose to look forward and  feel blessed that God entrusted us with him… and save my energies for battles for him… and find things that encourage me as a mom that despite other peoples opinions that he is great just exactly as he is….

 I praise you because OUR SON is fearfully and wonderfully made; your works are wonderful,  I know that full well. ”  Psalms 139:14

TEARS.. lead to lessons

Anymore I can just cry… cry over a song, the news, watching our kids succeed or fail… I have been known to pull off the road because I am crying so hard I can’t see.  I have cried watching the news…  I have cried watching TV shows…

I am a very firm believer that ever incident in life… every death… should NOT be in vain.  It is a moment to learn from – it does not have to happen to me to impact my life.  I am going to do this from most recent to oldest

Today, I sobbed.  I heard the 9-1-1 call from the Texas Explosion and heard fireman are down.  They were volunteers leaving their families to fight a fire.. to save people… The last I heard there are still some missing at the scene.  I am blessed to have a respectable honorable husband who serves as a volunteer fire fighter.  When I heard that call, I became part of the scene in Texas, because at any moment my husband, the incredible father to our children, is not guaranteed to return after serving as a volunteer.  I remember the two big structure fires of Nemacolin and the MillRunChurch and listening to the scanner non-stop. Hearing fireman were injured.. I needed that reminder today so I am a better wife to him.  I make sure he knows I love him and nothing goes unsaid.  That I love without regret…

The BostonMarathon.  Jim called me and asked if I heard.  It was like him calling me on 9-11 as I walked into work near the PittsburghAirport.  It was a bad dream.  I was thankful to be at work that night or I would have been sucked in by the media.  But just as 9-11, America stuck together.  I sat tonight and watch the first singing of the National Anthem at the Bruins game and watched as the firefighters came on the ice.. the singer started.. and then the crowd joined in.  I cried.  They both affected America… but I think it was a great reminder of the need to unite… the goodness of people… We have to keep that feeling or the incident and those deaths will be in vain.

I was glued to the TV when I heard the little boy being held hostage in Alabama had Aspergers.  I could still cry thinking about it.  But I felt for those parents and could only imagine what that little boy was thinking without all of his favorites.  It made me hug my children tighter and think about safety things for Sam.  It made me slow down and capture the little things.  What amazing strength by that little boy. That could have been our son.  And was so thankful when he was freed safely.

When the recent school shootings happened, I was in shock.  I could not imagine being in those parent’s shoes.  But as the news came out that the shooter had Asperger’s and that was being used as a reason it happened… I became part of that story because they demonized Aspergers.  If you know our son and read the story of him and the little girls yesterday – he is a helper.   I learned that it will become my everyday job to protect and defend our son from the idiots of society.  I was especially grateful to know that our kids were home – safe and sound and it gently confirmed my reason to home school.

I can’t let any of these things NOT change me or they will be in vain.  Lessons

  • I can’t control what happens to me, only my reaction to it
  • Slow down and enjoy every moment instead of rushing through life.
  • Say I love you more often and show it in my actions, not just the words
  • Counting blessings everyday is a necessity – not a luxury
  • I cannot live in fear as it will rob me of precious moments and memories.
  • Good will always out number evil – and my good deeds should always out number thoughts of revenge.
  • Evil will always try to win – despite all the laws in the land – but it’s my choice if I let it (or if I fight back).
  • Any moment can be the one that life will change forever.
  • Every moment can be a teachable moment… some are life changing.. some life giving.. some life taking – but none should allow a life / death be in vain.
  • Sometimes prayer is all I can do… but the One I pray to has infinite powers.

I have officially cried my way through this blog.  I have to be intentional to not let the life or lesson of another pass me by — every story could be mine…

AWARENESS (just the first step)

Awareness.  Really it doesn’t really happen until it happens to me or someone I know and/or love.  Unfortunately, it takes that to get my attention.  I think it goes along with believing it will never happen to me (and/or someone I love).  I always think of the statement that “Admittance is the first step to recovery.”  Well, Awareness is the first step to knowledge, understanding, stepping out on faith, and holding onto hope.

I can tell you the exact room we were sitting in at the physician’s office and we had a scholastic book order with us to pass the time.  We went for a routine check up and came out hearing autism for the first time.  Well, Sam was about three and I GOOGLED for more awareness.  We quickly determined she was wrong and moved forward aggressively working on speech.   The checklist for diagnosing was lengthy and I could rationalize every answer on the paper.  We changed doctors – isn’t that what anyone would do if they don’t agree OR don’t like the answer?   Oh, in hindsight….

Sam started Kindergarten and I can tell you all the “signs”…

Sam started first grade and I can tell you all the ‘signs”…

Sam started second grade and we could no longer ignore the “signs”… I walked into parent teacher night and I knew…and though you should never compare your child, I knew… I knew that if we did not due something about the AWARENESS we would do him no favors.

I had been AWARE of differences, but rationalized them out. Awareness is just the first step to seeking knowledge.

I remember taking the test that I had to complete for Samuel’s diagnosing – hundreds of questions and I just answered questions sitting at Monroe Muffler waiting for my Envoy.   But once I read the questions, they were then stored in my mind and I was more AWARE of what they were looking for.  I had to go back and change many questions – and not in the direction I wanted to answer them.  I had not realized what I believed to be his quirks were not “normal” – everything from his food choices, his language, his delays, his coordination.  And though after reading the manual and going through the process, I knew and was AWARE of the diagnosis, it did NOT make it easier to hear.   Because all of the testing, all of the education plans, etc.. just pointed out everything that was weak, not normal,  and needed fixed.  I was AWARE that on that day, things changed.

AWARENESS by itself isn’t enough – it is important to take action.  That is true for everything…

  • A dear friend became AWARE of a lump but had she not taken action for work-up it would have continued to spread and worsened the diagnosis.

Being AWARE…

  • of the number on the scale is not enough if I don’t do something to change it.
  • of a stop sign but not stopping is risking my life unnecessarily.
  • that someone is hurting but not reaching out to let them know I care defeats the awareness.
  • the Christ died on the cross and is risen but not asking him into my heart will not get me into heaven.

AWARENESS can be heartbreaking.  Every time we had an individualized education plan meeting or update, the focus was always on the weaknesses.  Often, I have to explain why he is different (to make others aware).   Probably the hardest AWARENESS is when we are with other kids his age and he is so different (which is okay), but he is often rejected.  Then it is important to also point out all his strengths to others and just embrace that they have no idea what they are missing out by not getting to know him.   It is my job to EDUCATE.

EDUCATION is imperative for any awareness – for the number on the scale I need to educate myself how to change it… for a friend who is hurting how I can reach out to them… etc.    I have to educate myself on autism so I can better understand.. so I can find opportunities to improve his life… so I can educate others.

AWARENESS can be a gift!  Once I am aware that things are going to be different than what I expected, it can be freeing (remember my rule is expect nothing and never get disappointed – I learned this multiple times).   When I had a boy, I expected the stereotypical sports, boy scouts, etc.  Had I stuck to those expectations, I would have tried to make him “fit”.  I would have missed out on the many other blessings that he brings to our life because I would be stuck in the mourning of what may never be.  I would have missed out on the imagination, angry birds coming to life, the hilarious conversations, the ever ending train tracks, etc.

AWARENESS also means letting go of “the box”. I look back and am so thankful we delayed the “label” of autism, because it would have been easy to let the diagnosis determine his path… instead of  letting Sam be Sam and determine his limits.  It is like I use to tell my cancer patients, only look at the “survival rate” if you determine to be part of the survival number.  If your mindset becomes part of the death rate, you are already defeated.  So although we are aware that Sam is 1 in 88 (or 50 is the latest) – I do not dwell on that because he is too unique to fit in a statistic.

However, magic happens when others become AWARE of Sam and his quirks.  When I hear others talk about how he makes them smile, his honesty, and his imagination, it is then AWARENESS is a blessing.  I have an incredible friend who always says everyone needs a Sam in their lives!  When we went for the PSSA testing and teacher who worked one-on-one with him spent time with me on the last day saying how smart, polite, and caring, etc… he was – my heart swelled.

But, this is true for anything in life – once I am aware I have an issue – it means I need to

  • Take action on the awareness
  • Educate myself and share with others
  • Prepare for the heartbreak
  • Let go of expectations and limits
  • Open the heart to endless possibilities

May I be intentional everyday on being more aware and taking the steps it requires.  Today, we wear BLUE in honor of Sam (although he would have chose orange or pink) for Autism Awareness Day.   But everyday is AWARENESS that God blessed us with an amazing son whose life has no limits.