Tuesday, June 4, 2013

"I suspect Autism Spectrum Disorder."

That is what the neurologist said to me and my boyfriend, after a brief, cold, meeting with us and our son JJ.   I can say that even though I didn't like this Doctor one bit, I knew way before he said it.  My boyfriend on the other hand, is still in denial, 4 months later.

I got pregnant with my daughter Leila in 2006.  She was born on Jan 28, 2007 a healthy full term baby, weighing 6lbs, 7oz.   I had just turned 21 a week earlier, and was still wondering if going through with this pregnancy was the right decision.   I looked at her when she came into the world, and I knew I did.   I loved her.  

I was always very smart.  I won a lot of awards in school and was always told I would do great things with my life.  Honestly, having children was not a goal of mine.  I never wanted children.  I just wanted to be "free".   After high school, I registered with the local community college.  I chose to major in communications, with a specialty in TV production.  The arts and film world, had been a life long dream.   I completed my first semester with near perfect grades, and then for my second semester signed up for a internship with Walt Disney World, in Orlando, FL.  I paid for my flight from New Jersey to Orlando.  From there, all interns were put up in an apartment complex and rent deducted from our weekly paycheck.   Therefore, leaving me with about $10, sometimes a voided check because there was nothing left.   I decided to leave the program early, and came back home.   Two months later I found out I was pregnant.   Me and my daughters father had been together since I was 17.    I loved him, but I think I knew deep down, that we wouldn't be "forever".    After many long discussions, and begging on his part, we decided to go through with the pregnancy and keep the baby.   I was young and scared, but I knew I could do it.   I was still living with my mom and she was very supportive, maybe more happy than I was.

I continued going to school full time and also held a full time job.  When I was 5 months pregnant, my boyfriend woke me up at 3am and told me he was leaving.   He then proceeded to pack his things, and leave.  I cried and begged for an explanation.  We were fine, up until he woke me up.  He offered none.   Long story short, he didn't come back into her life until she was four years old.

After Leila was born, I continued to work, and completed one more semester of school.   I was informed financial aid would no longer be provided to me.   There went my dream of finishing college and working in the film industry.

I eventually got a better paying job and worked there for a few years, while still living at home and raising my daughter.   She was so smart.  She still is.  She started talking very early on, and would have these conversations with people and I couldn't understand how she knew the things she did.  She was like a little adult.   She excelled in everything, she still does today.  Following in mommy's footsteps, she receives awards and has above average scores in all subjects.

I met my current boyfriend in 2009.  We were co-workers at the higher paying job.  After a few months of being together,  I found out I was pregnant.  I had been on the pill since my daughter was born two years earlier, so I was pissed off and confused.   I didn't plan on having anymore kids.   I had hopes of saving up and getting back to school.   I wasn't upset about the pregnancy itself though.   My daughter was so easy to take care of and such a smart, loving, child.   One more wouldn't make things that much harder.   Something inside told me I was having a boy.  I was excited at that thought.   Turns out, I was right.   Me and my guy moved into a really nice, spacious apartment, and on Nov 29, 2010 my son JJ was born.   He was a week overdue and I had to be induced.   He was a whopping 8lb 9oz.   The second he was born, I felt an overwhelming sense of love and overprotection for him.

His first year he did everything he was "supposed" to do.  He sat up, crawled, and walked "on time".  He babbled a lot and was a very happy baby.  We ended up having to move quickly and moved into a small, sardine can of an apartment.

At around age 1, JJ started saying bobo (his pacifier), dada, and a few times said his sisters name Yayla (Leila).   After about a month of saying those words, he abruptly stopped.    He is 2 1/2 now and doesn't say one word.   He just vocalized certain sounds...."mmmmm" "eeeee" "baaaa".

I brought this up with his pediatrician many times.  At first he told me to wait until he turned two, that some kids are late talkers.  
Then when he turned two, the Dr. said just wait a few more months.
Then in January of this year, I brought it up again.   He referred me to a pediatric neurologist.

A month later at our visit, we are told "I suspect Autism Spectrum Disorder."

This guy was a huge Dick.  He spent literally 5 minutes with us.  He never once tried to engage my son in play, or even try to talk to him.   He just sat down and asked my son to point to his head, point to his belly,  and then asked him to point out certain animals in this book he had.   My son, of course and justifiably, ignored him and chose to play with the toys that were laid out around the room.

That is when he told us his suspected diagnosis.  Then told us to look into getting JJ early intervention.   

Jump to today....JJ has been receiving EI 4 times a week for one hour a day since March.  He is doing extremely well.  I noticed a change in his behavior in that he focuses a lot more on his tasks and on following directions.   He still doesn't talk, but has learned a few basic signs through his EI. 

We have an appointment tomorrow to go to the Children's Hospital and have him evaluated officially for Autism.  I think its obvious that he is on the spectrum, but we need to be sure.  Although,  I don't think you can ever be sure.  There is such a fine line between so many of these disorders, Im certain there are many mis-diagnosed children.  JJ's father keeps telling me and everyone else, that there is nothing wrong with him and that he will talk when he wants to.   Im not sure if he really believes this, or if he just needs to make himself believe it, in order to cope.   He is a great father and I know that this is hard on him.   In August of 2012, we had our second baby together, another boy, Brandon.   He was a month premature and was in the NICU for a week.  Today, he is extremely healthy and actually crawled for the first time today.

Im scared for Brandon, because I know he is at high risk for having Autism, if JJ does indeed have it.   I love JJ to death.  I love all my kids equally, but have always felt such a deep special bond with him.   He is very loving.  He runs up to me dozens of times during the day wanting a hug and a kiss.  He makes strong eye contact, especially when we cuddle.  When we cuddle, he likes to rub my hair.   Always a special moment.   

Im just scared, and im tired.   My fear used to be when I was younger, that I wouldn't finish school, or have that perfect job in the city.   Now, all that stuff seems so insignificant and far away.   My fear now is that my son won't live a full life.  That he will never talk.   That he will be bullied in school.  That he will be depressed.  That he will be dependent on me the rest of our lives.  What will happen when im gone?

SO many questions.  Everytime I think about it, I get teary eyed and feel nauseous.   I just want all my kids to live long, happy, healthy lives.   Maybe they will.  Maybe JJ will be high functioning.  Maybe he won't have autism.  Maybe is just a late talker.   Maybe Brandon will be ok, even if JJ is on the spectrum.   Maybe Leila will feel neglected if I have to focus all this time and attention on the boys. 

Its exhausting, yet I know it could be worse.  So many parents who have lost their children, or have children who are terminally ill, would gladly trade places with me.   So I try to look at the bright side...my son likes to rub my hair :)

I have so much love for this boy!  :)


  1. I found your blog through one the groups I am on. We have a 2.5 year old who has PDD-NOS, SPD, APD along with some other issues.
    This is a crazy roller coaster ride you are embarking on and I know where you are coming from. I have a blog also if you would like to follow its www.jamiedimmitt.blogspot.com it has a link to a support group myself and a few friends started along with my son's page we created.

    1. Thank you for sharing. I will definitely follow. I really enjoy reading other mother's experience with being a parent to a child with Autism. Reading articles on medical websites, seem to scare me. Reading real life stories from other mothers on the other hand, make me feel so much better about the situation and I feel stronger and more equipped to deal with the stuggles we will have to go through. I know if other mothers can do it, I can as well.