Another Little Boy, Another Big Diagnosis

On one hand, I cannot believe I am about to write this post.  On the other hand, I knew it was just a matter of time.

We had a medical evaluation for A yesterday.  I am numb with pain.  I am gripped by fear.  I am angry at God.

I am a mom to two boys with an Autism Spectrum Disorder.

Alex is only 20 months old.  Due to his age,  the evaluation team decided to use what is called the DC: 0-3, for children birth to three years old, instead of the DSM-IV criteria for ASD diagnosis.   Alex was diagnosed with Multi-System Developmental Disorder (MSDD).

MSDD is considered a “crosswalk” diagnosis to Autism and PDD-NOS. Had he been a little older, the psychologist said she would have diagnosed him with PDD-NOS.  We have to have him reevaluated in one year at which time they will determine how he will qualify under the DSM for an ASD diagnosis.  As A matures and we are better able to understand him, his diagnosis will be changed to either PDD-NOS or Asperger Syndrome.

I am happy to have some answers, but heartbroken to know his life is not easy and won’t ever be easy. I knew that, but it is just so definite now. It is a lot to take in.  It is just so unfair.

My Everest

Recently, my husband, the boys and I traveled to my in-laws house for a birthday dinner for my niece.  During the drive home, my husband and I had a wonderful conversation about our life and how it compares to that of our childless friends.

A few nights previous, one of my husband’s close friends, who happens to be childless, started talking about how he wants to do more with his life.  He feels like he needs to be accomplishing and experiencing life more.  For purposes of this story, we shall refer to this friend as Dan.

Dan works as a fire fighter.  Dan apparently has an array of talented coworkers. He was telling my husband tales of one coworker that is an amazing skier.  He works for 9 months of the year, and then spends 3 months in the winter skiing in Veil.   He stars in many videos about skiing and has managed to send every non-skier friend that has come to visit him, home with a broken bone.

There is another fire fighter, in his department, that is a professional cyclist.  He has a bike that he purchased for something like $30,000 and bikes to and from work every day.  In the evenings, he takes the scenic route home, that is 75 miles long.

I guess being around people such as the men above is making Dan feel inadequate.   He was asking my husband what he thought he could do to experience life more.  They talked about snow-showing, hiking, vacationing to exotic place, climbing mountains and many other things.  When Dan asked my husband if he would want to join him, he had to stop and try to explain to Dan what our life is like.

He said to Dan, “You have to understand, my boys are my Everest.”

There has never been a truer statement.  Since becoming parents, our experiences and accomplishments have been based upon what we can do and are doing to make their lives better.  Our success, as a whole, is so heavily weighted by the happiness of our children.  Their future is off in the distance, atop that great mountain.

On the day that we found out we were pregnant with B, we looked up that treacherous piece of rock, unsure what path we would take or if we would ever make it to the top.  But climb we did.

At the beginning, we took baby steps.  Our footing was unsure.  We didn’t trust our equipment to break our fall.  We weren’t used to the climate and the air, but we were trying.

As time has gone on, we have become more confident in our climbing skills.  On good days, we are able to navigate this mountain pretty well on our own.  On more difficult days, we are learning to rely upon the help from our village.  We have trail guides, Sherpas, medics and other climbers who help us on our journey.

Our climb has changed dramatically during the past year.  It is still changing every day and I imagine will continue to change on a daily basis for the rest of our lives.  The 2010 calendar year has proven to be the toughest leg of our journey since becoming parents, but I wouldn’t change it for the world.

I have days were I look down and just want to retreat to the bottom of the mountain and call it a day.  I never do though.  Instead, I look at my two little boy and find the strength to take another step.  They give me strength to be the best mother in the world; to find my way to the top of the mountain.

Getting an Asperger diagnosis for B was like getting a trail map.  Before the diagnosis, while we were very familiar with our son, there were just some things we didn’t understand about him.  With the diagnosis we are starting to learn.  We have a map, we have tools, we are slowly finding our way on this journey.  And it is an amazing journey.

I don’t need snow-shoeing or exotic vacations.  I can live without a fancy bike or skiing trips to Veil.  I get to live an amazing journey everyday.  I have my Everest.  It is a difficult climb to get where we are today, but boy is the view beautiful from where I stand.

Neglect

My blog has been neglected.  We are busy, busy, busy.  Mostly in a good way, but busy none the less.

A has been getting EI services for three weeks now.  The appointment we had this week, I think will prove to be most beneficial thus far.  The occupational therapist on his case was able to attend and has some great ideas to help us help him with some of his sensory needs.  While some things are happening on their own finally (like eating with his hands, not just a fork or a spoon!), we still really need some help from the pros.

A’s OT brought a Nuk Brush and a Sprinbrush to help A develop his oral motor skills and a bunch of bean bags of different textures and weights to help give A an outlet for his need for heavy work. We have been using the bean bags to try to redirect to an appropriate outlet when he starts throwing toys, and so far he has been taking fairly well to it.

B started going to an autism day treatment program two days per week, on his off days from preschool.  The mental health practitioner (MHP) that runs the room quickly decided that the next room up (rooms are based on the childrens’ needs and abilities, not age) would be more of a challenge and a better fit for B.  At first he was not pleased with the transition.  He was very upset about the move and kept telling us how much he hated his new class.  I had a nice talk with the new MHP and we decided that she would begin using positive reinforcements for B.  Voila! He once again loves his new school!

Those are two of the really big things going on in our lives.  Some of the other things are filling out paperwork and preparing for an autism evaluation for A at the end of this month, beginning to work with a social worker to get County-based services for the boys, appealing denied insurance claims, getting through the hustle and bustle of the holidays, carrying a heavy load at work and trying to just be some of the time all while in a constant state of sleep deprivation due to a certain one year that I know.  That last one, very surprisingly, is not getting the attention it should, but I am working on it.

Ahhh, that felt good to be back to my blog.  I need to keep using this place as an outlet.  Now…. I have some reading to do to get caught up with some of my other favorite blogging mamas!