Something is Wrong with my Child

When people hear I have a son with autism, some of the first questions they ask me are, "How did you know?", "How was he diagnosed?" and "How old was he when you found out?"  These are all great and, actually, kind of complicated questions.  I usually give a response saying something like, “I just knew there was something wrong”.

Nathan was born 5 weeks early and spent 2 weeks in the NICU

I guess the best place to start is at the very beginning.  Nathan was born 5 weeks early.  While I was in labor, his heart rate kept dropping.  My doctor realized if I was on my right side, Nathan's heart rate would stabilize. So, I stayed on my right side and was eventually able to deliver him without a cesarean section, although we were all prepared for that if we needed it.  When he was born, the cord was wrapped around his neck, twice. He was blue.  He was rushed right to the neonatal intensive care unit (NICU). I was terrified. 

Nathan spent 2 weeks in the NICU, mostly for breathing and feeding problems. By the time we went home he was doing much better and breathing and eating just fine. Nathan was the happiest, easiest baby. He very rarely cried and was just happy being wherever he was!  He was a great sleeper, loved his swing, and liked toys, even as a baby.  He wouldn’t just look at his toys, he would examine them, like he was trying to figure them out. Nathan was also an early talker. He said 2-3 word phrases by the time he was 1. I remember one time, just before his first birthday, Jason walked in from work and Nathan and looked up and said, "Oh, hi daddy!"

Nathan was the happiest baby, he was always smiling

As amazing as Nathan was, when he was turning 1, I knew that something wasn’t quite right. He wasn’t sitting up, crawling or walking. I scheduled an early intervention (EI) evaluation through Ulster County, New York, where we lived at the time. Several people, including a special education teacher, a physical therapist, a service coordinator, and a representative from the county came to our house for the evaluation and determined that Nathan needed physical therapy  (PT).

Nathan had a sparkle in his eyes and started talking young

He started PT just after his first birthday and loved it. It was play time for him!  He was so engaged with his therapist.  She would show him how to sit up, the next time she came he would be doing it himself.  A few months later, he was running!  Because he had now reached all his milestones, he was discharged from EI. I was so relieved.  I was now pregnant with Drew and was glad I didn't have to worry about Nathan being delayed anymore. But somewhere, deep in my gut, I felt like something was still not right.

I had a very difficult pregnancy with Drew. At 21 weeks, I was placed on strict bed rest at home. Although staying in bed wasn't easy,  it was actually a special time for Nathan and me.  We loved cuddling, reading, playing and watching tv together. But at 27 weeks, my condition got even more serious and I was hospitalized. Being away from Nathan was awful.  It was the middle of winter and if Nathan had a cold or a runny nose he would be banned from the hospital or if it snowed it would just be too dangerous for my husband or my mother-in-law to bring him for a visit.

Nathan loved to make us laugh, had the most infections belly laugh

One day, Jason brought Nathan to see me after he had a cold.  I hadn't seen him for several days.   As soon as they walked in, I knew something was wrong.  The boy I knew was gone.  Instead of coming in, smiling and climbing into bed with me, he walked in, sat on the floor and started lining up the cars I kept in my hospital room for him. He didn't even look at me when I called his name. He didn’t answer or talk at all.  I mentioned it to my husband and told him there was something wrong with Nathan. Jason said Nathan was still not feeling well and he would be fine. The next day, my mother-in-law brought him and again he didn’t look at me, he didn’t talk to me, he didn’t laugh or smile. I called my husband, this time in tears and said he needed to take Nathan to the doctor because something was wrong, maybe he has autism. Jason made an appointment and took Nathan to our family doctor. He said Nathan was fine, he was going through a lot and this was his way of dealing with my hospitalization. (Talk about mommy guilt!)

One day, Nathan stopped talking and making eye contact,
I knew something was wrong

While a lot of the people in my life felt happy with this reasoning, I knew it was wrong. I asked my husband to contact the county again for another evaluation, he said we didn't need to because the doctor said he would be fine once I came home.  I was in the hospital for a total of six weeks with Drew. He was finally born 7 weeks early.  This time I did end up having a c-section and stayed in the hospital for about 4 days after Drew was born. When my doctor discharged me, I was so torn, Drew had to stay in the NICU, but Nathan needed me back at home.  I decided to leave Drew with the amazing NICU nurses and doctors and go home to see Nathan.  When I walked in the house, Nathan didn’t even notice I was there. He kept doing what he was doing, he didn’t respond to my voice, my touch, my face. I wasn’t able to pick him up because of my stitches, so even though it hurt like hell, I got down on the floor, eye level to him and said, “Nathan, look at me!”  He didn’t.  It was a knife to my heart.  I ran from the house sobbing, leaving Nathan and Jason.  I drove back to the hospital- even though the doctor said I shouldn’t be driving.  I just couldn’t handle being in the house. I needed to be with Drew.  Eventually, my mother came to the hospital and brought me back home.

The light that had been in his eyes seemed to dim

Drew stayed in the hospital for 18 days.  When he finally came home, I had to turn my focus to Nathan.  I called the county again, for another EI evaluation.  We had the evaluation done when Nathan was 23 months old.  He qualified for special education, speech, 2 days a week of preschool, and occupational therapy.  This is the same child who, just months ago, was discharged from EI because had reached all his milestones.  Now, he was significantly delayed in multiple areas.  The special education teacher who evaluated him, a close personal friend, recommended seeing a developmental pediatrician.  I immediately called a doctor near Albany for another evaluation.  I couldn’t get an appointment for 3 months.  I called in March and had to wait until June for an appointment.

He seemed much more serious, and didn't laugh as much as he used to

Finally, the day of the appointment arrived.  The evaluation was basically, the doctor playing with Nathan and trying to interact with him.  Afterward he sat with me, and my mother, who came to the appointment with me, and asked if we had ever heard of PDD-NOS?  We said no.  He said it means pervasive developmental disorder- not otherwise specified.  He asked if we’d heard of autism.  We said yes.  He said PDD-NOS is on the autism spectrum and started to explain the different diagnoses under the autism spectrum: PDD-NOS, asperger’s syndrome, autism (there are no longer these different classifications of autism, there is just one diagnosis- autism).  I wasn’t even listening anymore.  Nathan had autism.  I just sat there staring at the doctor as his words passed over me.  Finally, it was time to leave.  We went to the car, I buckled Nathan in, and got in the driver’s seat- all without a word.  We started to pull away, and I just lost it.  I had to pull into a McDonald’s parking lot and just cry.  I was crying because I was scared.  I was crying because I was sad.  I was crying because I felt guilty- what had I done to my child to cause this?  I was crying because I was relieved. For months I had known there was something wrong with my baby and now I had an answer.  I didn’t know what to do with that answer or the diagnosis, but at least I had one.

Nathan still smiled, but not as often as he used to

So, what is my advice to a parent who suspects autism or another developmental disability in their child?  First, ask questions and demand answers.  If one doctor, therapist, or teacher says- “No he’s fine”, see another one, and another one.  You know your child better than anyone in the world. “No, he’s fine” may be what you WANT to hear, but may not be what you NEED to hear.  Even after Nathan’s diagnosis, people continued to tell me, “He doesn’t have autism, he’s fine.”  Part of that statement is true- Nathan is fine, and has always has been fine.  He also happens to have autism.  Eight years after he was diagnosed, I’m now fine with that too, because he is one of the kindest, sweetest, most amazing people I have ever met.

What did I do after he was diagnosed?  Stay tuned for more on that, tomorrow!