Reacclimating

I am trying to re-acclimate myself with my blog.

When I started this blog, I was in a place of crisis. One of my coping mechanism was to write.  As I wrote, I started to put some of my thoughts down in this blog.  As I moved out of the initial crisis of having two children identified with autism in less than a year and what that meant for our family, I moved on from writing as much. I continued to journal my thoughts, but not here. My energy moved to maintaining our life, working and carrying out therapies.

We are now entering a new path on our journey. Our almost 15 month old, third-born son is scheduled to be evaluated by a neuropsychologist at the end of this month. She will be administering the ADOS on my baby in just over a week. I am terrified. I can feel myself moving towards that place of crisis again.

I really can’t put into words how I am feeling right now. I am on autopilot and I have a wall up. I think I am not letting myself feel until I can make it through this appointment. The stuff he is doing, well it is one red flag after another and it is scary. I am trying to make myself feel something, anything and it just isn’t coming.  So instead of feeling, I am just doing. I can feel later.

As a coping mechanism, I find myself writing more. So I am here, to write and to cope and to re-acclimate myself with this place that was such great solace to me not that long ago.

One in Three

Recently, as most of us in the autism community probably did, I read this article.   Reading that

…in families with one or more children on the autism spectrum, the chances that a baby sibling will develop autism are around 1 in 5, more than double previous estimates of 1 in 10 to 1 in 30

although shocking, was not shocking to me.  I am living that statistic.  I have so many friends that I met in my support group that are living that statistic.  I frequent many blogs that are living that statistic.  It was a harsh truth to see in writing, but it did not shock me in the slightest.

What did shake me to the core was this quote:

In families with more than one older child on the spectrum, 1 in 3 infants eventually developed autism.

We very unexpectedly found out we were expecting in June.  I have never really felt what it was like to have a complete panic attack until that moment. My body shook with fear of the what-ifs that were instantly present in my mind and my heart.

When I got pregnant with A we had no idea that B was on the spectrum.  I have no guilt about getting pregnant with A and possibly having another child on the spectrum.  Fast forward to present day knowing that both of my boys are very clearly autistic and I got pregnant.

Right now I am scared.  I am carrying a child, that statistically, has a one in three chance of being autistic.  I am terrified to think that I am possibly bringing another child into the world that may struggle with speech delays, motor delays, social delays and perhaps even cognitive delays.

Right now we are 15 months post first diagnosis.  Most days I already feel like an old pro when it comes to juggling therapy schedules, IEP meetings, early intervention, social workers, insurance claims, meltdowns and all the other fun that comes with raising two special needs children.  I can do it for two, what would one more be.  I am not afraid of that.

Where does my fear lie? My fear lies in the what-ifs for this baby of ours.  My boys live life in a way that typical children do not.  As much happiness, joy and wonder as they have every single day of their lives, they also have struggles and pain.  What if this baby has the same struggles? What if this baby has even greater struggles than B and A? I will have knowingly brought a child into this world that struggles every single day.  That scares me.

I am scared that this child will be neuro-typical.  What will I do then? Will I parent the child to death because that is what I have to do with my other two? Will this new baby surpass the other two? Will I hyper-analyze every single thing this baby does for years and years? Will this baby feel like they are getting the short end of the stick because they don’t “require” as much parenting? Will I even know how to parent a NT child?

I am trying so hard to have faith.  I am clinging to the fact that no matter what the outcome, it will be OK.  We will be OK and this baby will be OK.

One in three is a pretty scary number.  One that shakes me to the core. We will shake through this though.  We will be OK.

To Know Love

One of the things that gnaws at my heartstrings whenever reading about Asperger Syndrome, is the social interaction piece.  When I read things such as, “singled out by other children as weird or strange” or “failure to develop peer relationships appropriate to developmental level” or even see a picture of one child left out of a group, my heart aches.

B loves people; he is an extrovert extreme and lives for meeting new friends.  Another child in his class, a neighbor walking by on the street, a same-aged child at the park or a random stranger in the grocery store.  He wants to meet them all, but more importantly, he wants them all to be his friend.  Social anxiety and stranger danger are not phrases found in our vocabulary.

Sadly, I am already seeing his peers looking at him with hesitation when he so eagerly introduces himself.  B’s standard greeting is, “Hi, my name is B.  I am an older four.  Would you like to be my friend?” The general response… to take two steps back toward their parent, look uncomfortably up at me and shy away.  Sometimes, he is lucky to find another boy or girl who jumps right in to friendship with a simple greeting, but most of the time the other child moves away and B is left feeling sad because his attempts at making a friend failed yet again.

During B’s evaluation by the school district the school psychologist assigned to our case went into B’s classroom to observe him.  She noted an interaction that I think is pretty typical of B with a classmate.  During choice time, B went to an area in the classroom where blocks were set up.  B asked his classmate if he could help him build his tower.

The classmate responded, “No, I don’t want you to play by me.  You always knock things down and I don’t want my tower knocked down.”  B responded back to his classmate, “I would never do that to my friend.  I will not knock down your tower, you are my friend.”

I truly believe B meant what he said; he would never do anything to hurt his friend.  Of course, within about two minutes, B misjudged his body in space and sent the tower flying.  He was quick to help the child rebuild the tower, but the other boy no longer wanted him as a play companion.

Some of my biggest fears are that B will not have friends, that he may never marry and that he may never get to experience the joy of having a child.  He is loved abundantly by my husband and I.  His brother adores him.  His grandparents, aunts, uncles and cousins fawn over him.  I am still scared though.

Since the day I found out I was pregnant with B, one of my main dreams was for him to know love.  I want him to know the love of a best friend who can be called on during the middle of the night when he has a problem in his life.  I want him to know the love of a spouse who treasures him, just as he is.  More than anything, I want him to know the love of a child.  That pure, beautiful, fully consuming love that can only happen between a parent and a child.

My biggest hope for B’s life is for him to know love.  Pure, simple love.