Monday, June 17, 2013

Was that a word I heard????? Nope, but close.

My sister came up to visit from Florida for a week recently.  I was pretty excited because I hadn't seen her in about a year and a half.  I had just found out I was pregnant with the baby when she moved.   JJ was only 16 months when she left.  I was looking forward to him seeing her, as well as her meeting the baby for the first time.   Well, needless to say, JJ acted like a (pardon my language) asshole the whole time she was here LOL. 
Her first day here, my mother wanted to take us out to TGI Fridays.   I decided to take JJ with me, since my mom doesn't see him often, and so he could get out of the house.  JJ always has issues being constrained.  He's good in public, as long as he has freedom to roam or do what he wants.  Well, being in a restaurant, that can't happen.  I had him on his booster seat and tried my best to occupy him with crayons, games with the sugar packets, etc...but, that helped for about 3 minutes.   He kept whining and tried to slide out of his seat to the floor or would try to stand and crawl over the table.  I'm usually pretty good at controlling him when he acts up.  I don't scream at him or beat him or anything, but I am very firm with him when he acts up, and he always calms down and listens.   This was not one of those times.   Thankfully the place wasn't too busy.  I know this is something I need to adjust to, but it drives me crazy that I can't sit down and eat a meal in peace, in public.  Plus, even though I shouldn't care, I feel bad for the other patrons because I'm pretty sure they don't want to spend their dinner time listening to my child throwing a fit.  When the food came out, he was a angel...of course.  JJ loves to eat.  You'd never be able to tell with his little toothpick legs.  He had mozzarella sticks, French fries, grilled cheese, and some crackers.  I tried to eat as quick as possible, because if he finished before me, then I'd end up having to take my food home and eat it later.  Sigh.


The whole week she was here, he acted like that.    In public AND at home.  This is odd for him, because for the most part he is very well behaved when we are home.  Maybe he was just scared.  I don't know.  My sister left this past Thursday, and much to my relief, JJ is back to his normal.

Now for some good news.  Well, maybe.

We don't have cable.  Its very expensive and we are too busy to watch TV most of the time anyway.  We do however, have Netflix which we watch through the Wii.  I try not to let JJ watch a lot of TV.  Maybe like an hour or 2 a day.   We always put the same cartoon on for him in the mornings while he eats his breakfast and waits for his therapy to start.   Its the Leapfrog Alphabet Farm.  It has the green dog named Scout in it.  Well, we played it every morning for months.  They pretty much have songs for the alphabet and vowels, and display an animal for each letter of the alphabet.   
Actually, before I finish what I was going to say about that, about a month ago, my boyfriend bought one of those puzzle piece play mats for the floor.   Our baby was starting to crawl and we didn't want him hurting himself on our wood floors.   He decided to buy the cheapest one, which had the alphabet.  A letter in each puzzle piece.  Well, the letters pop out of the puzzle pieces, and in the wrong hands (JJ's) can make a mess.  Letters all over the house and a useless mat is what came out of that purchase.   Needless to say, the baby never got to use the mat.

Ok, back to my story.....a few days ago, I put the cartoon on for JJ.  I was sitting on the couch not really paying him too much mind.  I was in my own little world.   I notice though after awhile, that he keeps running in and out of the room.   I'm wondering "what is this child up to now?"  He comes in holding the letter L (from the mat).   I look up at the cartoon and they had just finished going through the letter L.   I'm like "Ok, just a coincidence. How funny."  Next thing I know he's searching through the house again.  (these letters are under our bed, in his room, just mixed up everywhere) He comes running back in with the letter S just as they were getting to the S.    After that he didn't get anymore letters.  So I basically chalked it up to coincidence.
Next day, same thing but different letters.   I told my boyfriend, and he was like "I know.  He's smart as hell.  I told you there ain't nothing wrong with that boy." 
The same day JJ came up to me making the S sound and the K sound a few times.  Again, I didn't think much of it.  Just him babbling.
Last night, I put the cartoon on for him.  I'm sitting on the floor watching him dance to their songs.  Next thing you know, they are doing their alphabet song.   When it gets to B, he makes the B sound.  When it got to K, he made the K sound.  When it got to S, he made the S sound.   It was only those letters, but it was clear and very intentional.  I'm not gonna lie, I almost pissed my pants.   It just hit me hard that, even though he doesn't speak, that he is soaking in all this information.  He's probably a genius LOL.   Today he didn't watch TV but he did make some sounds again.  Not his usual babble, but sounds.   Every time he makes them, he comes up to me, looks me in the eye and makes them.   Like he is trying to tell me something.  I wish I knew what he was trying to say. 

It might sound like something small, but it was a HUGE deal.   To me, it feels like he may say a word soon.  If he does, I may just piss my pants and faint.  Not necessarily in that order.

Oh, and my daughter is graduating Kindergarten tomorrow :)
It's been a great week!

Wednesday, June 5, 2013


I guess we can say, "It's Official"

So JJ had his appointment this morning, at the Children's Specialized Hospital.  They have a developmental clinic, where a Nurse Practitioner, who is specialized in Developmental Disorders sat with my son for a few hours.

JJ was in a great mood this morning and on the ride up to the hospital.  Once we got there, I had to register.   This was a problem.   Although it probably only took about 5 minutes or so, it was a problem because we were right next to the automatic sliding doors.   This meant that my precious little JJ could in fact run out of the doors at any given time, off into the parking lot, where he could get hit by a car.   It puzzled me that a CHILDRENS hospital would have such little obstacles between the main waiting area and the street.   I guess that's not really here nor there, but I thought I'd vent about that for a second.  Anyway, JJ is pretty good in public settings, but it's very hard to keep him confined to one spot.  Had the doors not been an automatic doorway to disaster, I would have let him run freely while I signed papers with the lady in registry.  So I had to hear his loud whines and deal with the first tantrum of the day, while I tried to confine this 35 pound being to my lap.

After we were through with that, we were redirected to another part of the hospital where we were to sign in, sit, and wait to be called.   This part was easy.  However, one we sat down JJ decided he wanted to run up and down the hallways.  After chasing him back and forth for 10 minutes, he decided to stay in the waiting room and sat down and watched Bubble Guppies on Nickelodeon.  JJ is pretty good at following directions and he understands everything.  He just doesn't talk.  So as long as he is not tired, or feeling confined, he behaves better than most "average" kids his age in public.  I have definitely seen some bad ass kids.  He isn't one of them.   I think to a stranger, they would never even know JJ was having developmental issues.  I was looking around at all the other children who were there.   Some were very clearly on the severe side of the spectrum, and some, like my JJ you would never even know.  Its just a reminder about how complex ASD can be. 

We were finally called into a room where the nurse spoke to me for a little about my concerns and about JJ's behavior and medical history.  Meanwhile, there were plenty of toys to keep him entertained.  I have to say he behaved really well, and did what I told him to do.  He is always like this at home, but sometimes around other people, he likes to make a liar out of me.

After the session was over, the nurse did indeed say she believes some of his tendencies are that of a child with autism, and that since he is so young it is hard to know exactly where he is on the spectrum.   To my relief, she did say that he is definitely not severe.  His only problems were obviously his speech, and the fact that he doesn't do simple gestures (pointing, waving hi/bye, shaking head yes/no).   Everything else seemed on point with normal development.  I felt so relieved to hear that.  It doesn't mean he wont regress further in the future, or that he can be "cured", but it means to me, that he will most likely function at some type of independent level as he gets older.  I don't know, it just felt nice to hear.   She did suggest we up his hours of early intervention from 4 hours a week to 10.  That's a huge leap, but I think its great.  He has made some real improvement since receiving it in March, and I can imagine that increasing another 6 hours would be a TREMENDOUS help.  She also set us up to meet with a speech therapist, which I had thought would've been done months ago.   I am extremely happy about that. 

When I got home and told my boyfriend about the Evaluation and what the outcome was, he seemed to accept the news and handle it well.   I thought he would be in his usual state of denial and that we would argue over the diagnosis, but we didn't.  This makes me happy too.   Its hard enough dealing with what's going on.   It would be even harder not being on the same page.

Well, that was my day.  I guess I had a small speck of hope that she would say everything is fine, but deep down I knew, so I was prepared.   I feel good though.  I know my son like no one else, and I feel like he will be ok.  He really is very intelligent, like a lot of children with autism seem to be, and I just have this feeling, this mothers intuition that he will still go far in life, hopefully much farther than I have.   Medical Science and Research have come so far and will continue to come up with new information and maybe one a drug that can slow down or reverse some of the symptoms of Autism.  My son is only 2.  Who knows what will exist when he's 10 or 15?  I have to stay positive.

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 son likes to rub my hair :)

I have so much love for this boy!  :)