A little history

I am a mother of a three year old boy who was diagnosed with Autism or PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified).  I am not an expert I am just a mother.  

A little background.  There was nothing out of the ordinary in my pregnancy.  My only problem was taking those awful horse pills!  My son was born on his due date, May 27th after 32 hours of labor. 

From the beginning he was a challenging baby.  He had slight jaundice but thankfully never got to the point where we had to put him under the lamps.  He was fine as soon as my milk came in.  I was a first time mother  and had no clue what I was doing.  I waited those first three days for my milk to come.  I think the shear exhaustion of it all clouded my brain.  If I could do it again I would have supplemented till my milk came.  But I am to stubborn for my own good and wanted to breastfeed.  It wasn’t really a choice and it was what I was going to do.  

Everything to come I only connected to his eventual diagnosis after the fact.  I missed a lot of signs.

He never really drank his milk well or in short sessions.  I would be 45 min -1 hr nursing sessions.  Only to have him nurse a half hour after that.  But he was growing regularly and only once since his birth has he gone down to the 75 percentile in height and weight.  He has always been the 90 percentile.  It was extremely hard to travel with him because of the constant feeding sessions and the duration of them.

At week two was when the colic set in.  It was four long long horrible months of colic.  It would take us at least three hours to get him to bed at night and every night was different how we got him to sleep.  Only to sleep for two hours at a time once he was finally asleep.   Thankfully we had the swing for the day time use which was the only way he would sleep during the day, rocking away.   I thought this was normal and only briefly mentioned this to our pediatrician.

At three months he started nursing for only five minutes.  I would have to time it because anything over five minutes he would throw up.  Again I only briefly mentioned this to my pediatrician.  We put him on solids at three months and that helped.

At four months we had a slight break from the horrible colic but he still was only sleeping for 2 hours at a time.  Then he started teething and that last for a year and a half of pure torture for the boy.  Every tooth was different but every tooth took about a month to come in and caused him extreme pain.  Still horrible sleeping patterns.

At seven months he had an episode. To this day I believe it was a seizure but it was not picked up on the EEG.  He let out a blood curtling scream while asleep next to me.  I unswaddled him as fast I could. But it was if he wasn’t there.  His body was limp and we couldn’t tell if he was breathing.  The ambulance came but by then he had made a complete turn around.  I think the EMT’s thought we were crazy lunatics.  I went out and bought the monitor that is a sensor to the baby breathing and still have nightmares about this.

He was meeting every single milestone and ahead of everthing.  But at eighteen months things started to stand still and the few sounds he had went away and so did the eye contact.  It was also then the ear infections started and lasted on and off for almost a year.  Lots of antibiotics and trips the pediatrician that continued to tell us that we just had to get through the cold season.  Finally the ENT said he needed ear tubes and his tonsils and adnoids needed to come out.  He had the surgery about a year ago now.  Because he had persistent fluid in his ears we thought a lot of his communication and language issues were because of a slight hearing loss (due to the fluid).  We did start early intervention at eighteen month for his speech but because of his hearing we were constantly just waiting for the infections to clear and the fluid to clear.

After the surgery his ears were finally clear and his hearing tests came back normal.  It was then that the technician asked me if he was in speech therapy. My pediatrician had told us to wait till he was three, and thats what I told the Technician.  She looked at me suprised and said  “you need to advocate for him”.  I will never forget that.  That and she was what woke me up.  I stopped listening to the doctors and listened to myself and what I saw in my son. 

Only two months later early intervention diagnosed him with Autism and two months after that that the neurologist rediagnosed him with Autism or PDD-NOS.  It has only been ten months since the initial diagnosis but I hit the ground running and I won’t ever stop until I heal my son.