Monthly Archives: August 2013

Lessons from my children

If this blog were a box of tissues I could fill it on many days.  Well, after some much recent discussion with a good friend, I realize how much I put on the “it’s fine” face, “I am strong” face, “I have it under control” face.  How often I am not just real with the world because then I look weak, out of control, and appear to need sympathy.  I also then have to face my own questions I ask when people say they have a problem and I think “what have you done to fix it?”

Emotions are a very touchy subject in our home.  We have worked a lot with Sam and teaching him “socially acceptable” reactions to things as much as possible. However, there are times; even at Idelwild that all it took was a look at his face and know a meltdown was fast approaching.  When he has had all he can take (the triggers vary), can’t be perfect in his mind, or is faced with a frustration, it is a meltdown.  He doesn’t stuff his feelings but just pours them out.  At times, he can put words to the emotion (he has come so far) and others it is beyond words.  When the meltdowns happen I am usually okay, but times I probably secretly want him to learn how to hold them in when we are in public so others don’t see.  That is truly not because I want to stifle him, but I don’t want his weaknesses bared for others to take advantage of him (kids thinking he is an easy target since a “cry baby”  and adults thinking “what is wrong with him” ) But in reality there is nothing “wrong with him”, Sam is the REAL DEAL and I am a fake.   While he lets the frustration out, he generally quickly moves on to a happier place.  Sometimes we just have to walk away.  He doesn’t harbor the feelings but moves forward.

I have taught Mary to be more like me in more ways than I probably should have.  Granted, she can pour it all out to / against me – especially in our heated “devil advocate” conversations.  But, it is never disrespectful to me just being honest.  However, I have taught her in other situations that if you show them how you feel – THEY WIN!  She can be so much more emotional than I am, and at times that is so hard.  It is hard for me to guide her because I don’t know often what to say or how to say it.  Recently, we talked about a situation and she said another phrase that has stuck in my head (note a reminder of the last thing that sunk into me was something like just because other people have bigger problems does not make my problems any less important).  She said something along the lines (with tears)  of what hurts most is believing that everything we shared together is able to be thrown away, like it never happened and meant nothing.  My suggestion was to her to be honest and say it.  Her reply, but then they will know I am hurt and they win.  MY WORDS of teaching her to be strong and overcome situations so the other person/people do not see the real you… don’t let them win.  My crappy advice has taught her not to be real with her emotions.  It also taints her world that when you are honest with someone you care about that they would honestly be cruel enough to be glad they caused hurt.  And I can think of some situations that I did not save the relationship because I wasn’t honest on how much it hurt.  It honestly makes me cry.  It is hard to see your child hurt and even harder to see them not feel they can express themselves honestly ,especially if it is because of something you taught them.  When you don’t express them you stuff them and they weigh on your heart everyday.  Unlike Sam and just moving forward.

I use to be real when I was a bedside nurse.  Rarely would a day go by that I wouldn’t cry with or for a patient.  I am not sure when the switch got changed.  Maybe all the years of infertility while others around us had children, and I faked I am fine. Maybe it was all the years of being strong watching my mom waste away because I didn’t want her to worry about me.  Maybe it is cumulative life events.

For me, if I loose it emotionally then I have lost control, but who am I kidding, there are very little things in life I could say I have under control.  Some believe tears are a sign of weakness, and I would have to disagree because I have seen my dad cry and he is my pillar of strength.  I will openly cry in public at a funeral of a loved one.  However, crying for me is a loss of control.  It places me at risk for what others to believe something differently about me than I want them too.  So maybe it is life events, or maybe it is just one of the few areas I feel like I have control of – my tears.

Is it really better to not show them the real you, even if you risk having your heart on your sleeve and you get hurt?  Or is it better to be fake and not let people into the real you?  I guess there are consequences to either situation, but my heart says to take the risk and be real.  It may in fact mean that I may feel the other person “wins’ by seeing my weakness, but in reality, I win for being true to myself.

When I am not honest and don’t let friends know I am having a hard time, my husband know I am having a hard time, etc.  I rob them of the chance to pray for me.  I know I love getting a text, email, private message that just says they need a prayer, so I can lift them up.  Why am I not so honest to let others lift me up.  Granted the “big stuff” they know about (illness, deaths in family, etc…), but as Mary so wisely spoke the little things are often just as important!  p.s. this does not mean I have to expose/disclose on Facebook (LOL)

In life, you are suppose to teach your children, but I have quickly learned that Mary and Sam have taught me more about life, myself, and a whole different view than I could ever blog about.  How is it that I can look at either of my children and recognize the sign that they have had enough, but I can look in the mirror at my own reflection and keep stuffing in more and don’t even recognize the signs?  To watch Sam be so honest with words, feelings and emotions is humbling.  To watch Mary mature and speak words of wisdom to me is indescribable.  I have a lot to learn from them both… starting with be careful that my words and actions (of things I don’t like about myself) don’t come creeping out of their mouths and their actions.  Also, I could definitely be a lot more like Sam and be completely honest about my emotions.   I always joke with Mary “doesn’t it stink when you open your mouth and your mother’s words come out?”  Although, I realize now there were times they were not my words.  I think my principle should be “Isn’t it awesome when I open my mouth and my children’s words come out”!


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