The Struggle

         In a moment everything changed.  My body was numb with shock as I finally heard the words the doctor was saying.  Pervasive developmental disorder, a part of the autism spectrum.  I had known it for a couple of years now as Spencer had been going through Early Intervention, but to finally hear the diagnosis – validation, it was shocking, yet real.  Spencer, now being three, had struggled for so long being nonverbal, learning sign language just to be able to communicate.  The tears, the heartache I had been through.  The juggling I had learned to do between taking care of his two older sisters and learning sign language and scheduling speech therapy and occupational therapy for Spencer.  Now, finally having validation of Spencer’s autism.  It was quite a lot to take in all of a sudden.

         As I left the doctor’s office that day my mind was flooded with memories of what we had been through, Spencer and I.  Twice now I have felt validation when it has come to fighting for my son.  How weary already I have become in this battle.  As I allow my mind to drift back to those first few months of life for Spencer I am astonished at how long this road has been for him—and me.  This little man has struggled for so long it seems and he is only three.  He was only about four months old the first time I realized there was something wrong with him. He was crying nonstop like he always did.  That was the only sound the child made, crying, crying and more crying.  There were no cooing sounds of a normal child.  No smiles.  No watchful eyes while he took his bottle.  No, Spencer would look the other way while he took his bottle; he would hate to be held.  He cried harder when he was touched; he cried when he wasn’t held.  There was just no winning with that one.  I would lock myself in the bathroom and cry because I just was so exhausted and couldn’t seem to win.    His sisters, so tired of listening to him, asking “Mommy, can’t you make him stop?”

         When Spencer was seven months old I thought he was deaf.  He never startled when his sisters were around him.  He never seemed to notice when his Nana or Papa entered the house, even though his sisters were going crazy around him.  We went for hearing tests, which were all negative.  Finally at thirteen months of age, I called Early Intervention and set up an assessment.  Validation.  Yes, Spencer was delayed verbally at least at that point.  He had the verbal skills of a three month old.  The tears came for me.  Finally, someone could help.  That’s when we met Lauren, the speech pathologist.  Lauren was Spencer’s lifesaver as far as I am concerned.  She taught us sign language, which became Spencer’s way of communication.  The violent spells stopped.  The crying for the most part stopped.  Spencer could tell his sisters and me what he wanted, liked or didn’t like.  He started learning sign language in March; by December he knew over 200 words.  However, sensory issues continued.

         Driving down the road as I continued to reflect on the past, I thought autism is a strange disorder.  Sensory and social issues are tough aspects that are affected and are affected in different ways in every child that has it.  For Spencer socially, he had no social skills that anyone else just naturally has.  Every morning we would get up and prompting would go on.

“Good morning, Spencer.”

I would then cue him, “Say, Good morning, Mom”.  It was a long road.

There were so many times Spencer would just spend hours on end wanting to be alone either in the closet rocking, “self stimming” I have since learned it is called, or be outside.  The days we could spend outside weren’t bad, until it was time to go in.  Anytime Spencer could be alone was peaceful for him, or if he could be with the family springer spaniel.  There was something about a connection with the family dog that gave Spencer a peace.  He didn’t mind the dog touching him, and Spencer would spend a lot of time on the floor leaning against the dog or laying against him with his arm around him.

Sensory issues are another story.  Spencer was two years old when we realized it was the wrinkles in his bed sheets that kept him from sleeping through the night.  Early Intervention provided him with a weighted blanket holding about 10 pounds of weight in it, which amazingly helped Spencer to starte sleeping through the night, providing me with a full night’s sleep for the first time in two years.  Sweet heaven, finally a full night’s rest for both of us.

Sighing deeply as I continued my trek home, and then there were the eating issues.  One month was colors, and the next it was textures.  I learned how to stimulate Spencer’s taste with a “sensory diet”.  Chewy foods along with crunchy foods, such as a fruit roll up wrapped around a pretzel rod, would stimulate his mouth allowing him to eat a more wide variety of foods.  Oh, but the days he just absolutely refused to eat green foods, the battles we would have.  How many times have I wanted to just give up and cry?  Can you just give up on your child?  No, I guess not.  So there would be more Early Intervention sessions and more brainstorming with the therapist about what to do next when those issues arise.

         The years have flown really as Spencer has adjusted to his life of sign language and Early Intervention.  But, now we have a full diagnosis and Spencer is three and is getting ready to move into the school system.  My mind is whirling.  As I continue my drive home from the doctor’s office, my mind continues my journey down memory lane to the present time.  There really was no time for the tears to come.  There is a lot of planning and organizing to do.  There was still more therapy sessions to schedule, then there are transitions to be thought about as Spencer would soon be leaving Early Intervention for the school system to be taking over. 

As I pulled into the driveway, I realize how much I longed for a son who would put his arms around me and just hug me, but an autistic child doesn’t do that.  Spencer doesn’t like to put his arms around me.  Every day I learn not to take these things for granted anymore.  Every day Spencer, with his autism, opens my eyes to a new world of what is not the norm, what is different.  I grieve what I have lost, but I welcome the new world of sign language and sensory therapy and learning what seems small--such as three small words of “I love you” can be such a major victory when finally spoken verbally by a nonverbal autistic child.