The down side

Last week we went on a family vacation with very close friends of ours.  The are the kind of friends that only exist on sitcoms.  Where the husbands, wives, and children all get along with each other.  Really get along.  We are the next best thing to family.  Given some of our family experiences, I could say better than family.  There is no judgement, only love and understanding.  Neither of us have the answers to all life's problems and neither of us pretend that we do.  It' truly a Divine friendship that began over 10 years ago in a small town in Italy. 

So what is the down side I am referring to?  Well, not the friends, not the children, but the fact that my daughter has Asperger's and all the things that define her as an Aspie were in our face all week long.  There were many variables that contributed to the increased struggles.  Change of routine, well more aptly a lack of routine, and constant social interactions.  D1 and our friends two daughters are like the three stooges.  They play together very well.  D1 takes charge and they follow her like little lemmings.  They will play together for hours, something that D2 is incapable of doing.  There were many times when D2 would become overwhelmed and just leave the situation upset. Sometimes she would stay and argue.  D1 knows how this works, she is used to her sister and knows her struggles, but this week she seemed to have forgotten all those things.  I constantly heard complaints about D2.  "When she doesn't get her way she leaves".  "I was kidding and she got all mad".  "She said I was making mean faces but I wasn't".  "She always has to sit on the end and have her own space".

This made me realize just how much she struggles socially.  If there was ever any doubt about the need for therapy in her life - last week cured all those doubts.  I found myself constantly in a state of apologizing.  Adding to my feeling of failure as her mother.  Then the biggest moment - the most piercing comment "I know that D2 has somethings going on with her, but I just wish she could be normal so everyone would stop fighting."  Wow.  This lil angel did not intend her words to be mean or hurtful  They were exactly how she felt.  How many of us felt at any given moment, but wouldn't dare speak out loud.  Just hearing these words through her tears made my heart stop, my through tighten, and at that moment I couldn't breathe.  I wanted to scream out "I wish she could be normal too!"  "I wish that little things like personal space, and flexibility, and food, and bowel movements were not issues."  Instead, I left the room.  I had to remove myself as far away as I could.  I wanted to leave the house and just walk until I was too tired to walk anymore.  I made it to the top deck of the beach house and curled up in a chair and sobbed.  I sobbed like a small child, crying out to God asking why it had to be so hard.  Why did it have to hurt so much to have a child who to those who don't understand seems like a spoiled brat.  This child who is amazing in so many ways has to struggle with such simple things that come naturally to her peers.  I felt ungrateful.  I know that there are children on the Autism Spectrum that are not as high functioning as D2, parents who have children with disabilities far worse, and knew that God had chosen just the right parents for them.  I had to believe that God also chose Husband and I for D2.  And she for us.  It was at this moment I think I finally grieved the loss of the perfect dream that every mother has for her children.  It was at this moment I came face to face with the reality that D2 was indeed on the Spectrum.  Not just in all the quirky funny ways, and all the positives, but that there were real issues there, real struggles, and real consequences. 

Later that night D2 was again in a situation where everyone was upset and frustrated with her.  She was so overwhelmed and frustrated with herself, she had gone into a full fit.  Hitting herself, growling, and pulling away from everyone.  She finally broke from anger  to crying and said "it's nice that I am so super smart and good at math, but I just wish my friends could get me.  I wish people other than you and dad could really get me." 

My heat broke.  Again I felt overwhelmed and thoughts of losing friends because they couldn't handle D2 crept into my mind.  Who would love her if something happened to Husband and I?  Would someone be willing to raise her, to take her and her issues on? Or would she be left on her own?  Will she learn the skills she needs to be independent and successful?  Will she fall  to the statistic of Aspies that earn high level degrees but because of the lack of social skills can never get past the interview?  Will others see the magnificent potential in her that Husband and I see?  My heart breaks for my little love.

The week came to a bitter sweet end.  Our friends are still our friends, and even answered the phone when I called.  The truly are a blessing to us, and D2 is just wild about them.

I know that I can only take one day at a time.  To live each moment in the fullest.  To let the simple giggles and moments when I watch her and fall even deeper in love with her - be the moments that I focus on.  To let those moments creep in when the world seems alone and without hope.  I used to judge people who would talk about the "sucky side of Autism" and would focus on all the bright spots, and little quirks that were manageable.  The truth is there are times when Autism stinks big ones, but D2 is not defined by her diagnosis, She is much much more.  Her diagnosis is only a part of who she is - a part that we are learning about, and learning how to cope with, and adapt to.  People tell me that D2 is so lucky to have a mom like me... truth is, I am the lucky one.  I am humbled by her unconditional love and I pray that she will know that same love 10 fold.