trying to find myself and humor in life

Archive for the tag “ASD”

Throw Back Post…2013

Wow the things that you find in your blog “drafts”. Since I am ever-so-slowly working my way back into blogging, I thought it would be fun to peruse the 74 “drafts” I had sitting in my draft folder.

Holy Crap – 74???!!

Some of the drafts were just titles, back when I was a regular blogger, I would always start a post with the title. Once I had the title, the rest just fell into place. Now, 4 years later, I am lucky to even come up with a thought, let alone a title.

At the bottom of my drafts there were some posts with no titles and that is where I found this. I can remember this day like it was yesterday and the emotions are all still fresh. I can’t believe I never posted it.

Well better late than never. Ladies and gentlemen I bring you Nic’s TB post circa 2013….

Sometimes being a mom isn’t so bad

My son Jake was diagnosed with Autism Spectrum Disorder about 21/2 years ago. Since is diagnosis in January 2011, the  has been a roller coaster ride of emotions and “stuff” .

Jake has really good days, really bad days and everything in between. However, through it all, he has put on a brave face and is almost always smiling (unless he is angry). When he is truly happy there is nothing more beautiful than his big, blue eyes looking back at you.

The last couple weeks I have been in an “ASD SUCKS” kinda mood. I know… it can be so much worse; I should be thankful Jake is doing so well;  there are so many others that are worse off yada yada yada. Still, when it is your kid and you have to watch him/her struggle daily it doesn’t matter  – it just sucks.

This past weekend, however, was A-Mazing with J. It started last Friday when J’s school hosted a talent show. J attends a school for kids with special needs so I was really not expecting much from a talent show.

Jake’s teacher, the beloved Miss Heidi, had mentioned that she had worked with the class for weeks on a routine but kept it a secret. All we were told was that the kids should wear black pants and a white shirt.

The morning of the show, I asked J what he was performing in school. He gave me a shy smile and did some hand motions that made no sense to me at all. Ok, whatever I thought as I got him ready for the bus.

I arrived at his school to a packed parking lot and I panicked a little that I was late.  Quickly, I was able to grab 2 seats, my husband was meeting me there, and anxiously waited for the show to start.

The principal handed out programs and under Jake’s class it said  ”My Girl”. Now it all made sense!! Jake is in a class with 5 boys and 1 girl. OMG this is going to be awesome….but will J do it or freak out????

J was act #6 and it felt like FOREVER until his class got on “stage.” Finally I heard the music and in walked Jake and his class.  The boys were wearing top hats and bow ties and the little girl sat in the middle on a bench covered in pink tulle.

This kids took their places and did the entire routine to perfection! I could not believe my baby was doing this in front of a room packed with people – students, teachers and parents!  Never would that happened 2 years ago. To me it was simply a miracle.

After the song was over, the kids took their bow and the room erupted in applause as the teachers shot confetti into the air. They did it – Jake did it!

I don’t think I will ever be able to describe the feelings I had when Jake walked off the stage. It was a combination of so many emotions and feelings all mixed together. I just remember thinking “everything will be ok…. Jake will be alright” as tears ran down my face.


Random Monday Thoughts

Wow can you believe today is July 1st??? Wasn’t it just April Fool’s Day??

The beautiful Garden State has been a bit soggy the past week and today is no exception. As if the 100%+ humidity isn’t enough, what’s a monsoon (or 2) while you walk to your car – or fight with your 3yo and attempt to strap him into his car seat?

And now for some Random Monday Thoughts…

1) Thank Goodness for having a Plan B

Last week I blogged about my twins upcoming 7th birthday here and their obvious discontent for the “surprise” outing to a minor league baseball game. The husband and I did not back down, and had all intentions of dragging taking the twins last Thursday night.

Even when the weatherman (is that un-PC to say?) predicted a tornado watch and flash flooding, we were set to make the trek to Bridgewater, NJ AND have fun.

However, the husband and I did not take into consideration M’s sudden “illness” that struck halfway through dinner at the local diner.

Afer complaining about the air conditioning, and his sandwich and his lack of Skylander Giants, M turned to my husband and started complaining of a stomach ache.

Within minutes M had an ear ache, joint pain and a “fever” and J was asking how many minutes we had to stay at the baseball game.

Assuming M was not hit with a case of malaria, I looked to the husband and said should we just take the kids to c-h-u-c-k-ie c-h-e-e-s-e?

The husband, being the husband, looked at me and said Huh? (spelling is not his strong suit).

No lie, I spelled Chuckie Cheese (I know it’s “Chuck E Cheese” but it was easier my way) 4 times before just saying the damn thing out loud – to which the kids yelled YES!!!!!!!!!

The next 2 hours were a blur of music, yelling, video games, ice cream, tickets and excitement as the twins had (and I quote) the best day, birthday, EVER! Thank you MOM!

I guess there is something to be said for a Plan B.

Happy Birthday Boys!!

Happy Birthday Boys!!

2) My Buddha Baby

As most of you know, my now 5yo was diagnosed with Autism Spectrum Disorder in January 2011. Previously, I have talked about some of the challenges, and successes, we, rather J, has experienced since his diagnosis.

J has come a LONG way since 2011 and I am beyond proud of him and how hard he works. However, having a child with ASD is like riding a roller coaster – there are ups and downs and just as you get used to one thing BAM! you are hit with a new “thing”.

For example, J will be attending Extended School Year (ESY for those of you who are “cool” with the school district lingo) beginning in the middle of July.

ESY is a 5-week school session designed to prevent kids with disabilities from regressing over the summer break. While I am thrilled that J can attend ESY, the draw back is that school was over on 6/24 leaving me (and J) with over 2 weeks of no structure – the kryptonite of ASD kids.

Routine is to ASD as peanut butter is to jelly or ying is to yang. Just mention “change of routine” to an ASD parent and watch them physically cringe at the thought!

I did some brainstorming in the spring and came up with an idea for J. His 3yo brother attends a daycare (a/k/a country club like facility) near my work and maybe they would take J for 2 weeks in July and 2 in August????

I begged talked with the owner and the school was able to find a spot for J. Now for the hard part, preparing him to go to a new school, new kids and completely new routine.

Terrified I talked to his teachers, aides and therapists for weeks. These women are true saints. They not only listened to me, consoled me and offered me advise, Miss Lyn even called the daycare in advance to talk to the teacher J would be getting.

Over and over (and over and over) they told me Nicole it will be fine…this is good for J….don’t underestimate J.

None of it mattered, my stomach was in knots and I couldn’t wait for it to be over. For the past week I dreaded the thought of today’s drop-off.

Would he cry? Scream? Run or freak out? Worse, would he do that new, weird head-hitting thing of his???

Last week J and I took the twins to camp. J was SO excited for them and kept telling me he wanted to go to camp too. It was like a lightbulb went off over my head. That’s it!! I’ll tell J he is going to camp next week with L!!!!!!

All weekend I planted the “camp” seed with J. Even the twins went along with me and told J how much fun camp is and all the great stuff he would do. Yesterday I even got him a new lunchbox to bring with him and he was thrilled.

I slept terrible last night, I was so nervous about drop off today. At 4am I just stared at the ceiling and wished it was September.However, I put on a brave face and made sure to greet J with a huge smile this morning.

Are you ready for camp today???? It’s going to be SO MUCH FUN!! I said even though on the inside all I  wanted to was cry.

The ride to “camp” seemed like it took forever (it’s down the road from where I work). When we pulled into the parking lot my stomach ached and a feeling of dread came over me. I put a big smile on my face and said You ready for camp J?! To which he said YES!

All my worry was for nothing. God bless that boy! He walked into that school with the biggest smile on his face and said hello to everyone. He walked into Miss Danielle’s classroom and looked like he was right at home.

J was all excited when he was asked  to choose puzzles or blocks to play with and gave me a kiss goodbye before he went and sat with the kids.

I walked to my car speechless.

A little while later I emailed someone at daycare to see how J was doing. This was the exact response I got “The sweetest little happiest boy, the best in the class!”

I don’t know what the rest of the summer will bring but there was a lesson learned today – Never underestimate J.

1st day of "camp"

1st day of “camp”

Somewhere on the spectrum….

On January 10, 2011 my son J was diagnosed with Autism Spectrum Disorder (ASD). I can remember everything about that day. It was a Monday and I had taken the day off work. The temperature outside was in the teens and so J and I were both bundled in our puffy coats patiently waiting for J’s name to be called.

The waiting room was not child friendly, surprising since it was a children’s hospital. There were some torn books scattered on a table and some weird mirror shaped like a fish that reflected everything upside down.

J tried amusing himself as I filled out what seemed like a million forms.  There were insurance forms, privacy forms, health history and family background questionnaires. I answered questions like:

How much did your child weigh at birth? Has your child ever had surgery? Does your child look at you when you call his or her name? Can your child point his finger in the direction of an object? How many words can your child say and at what age did he/she say their first word(s)? Was your pregnancy “normal” ? and What age did your child crawl?

After what seemed like forever, J’s name was called and off we went to get weighed and measured before being ushered into a tiny room with a huge table and a bunch of toys. I was introduced to the Advance Practice Nurse (Sally) who asked me pretty much every question I had just answered on the forms in the waiting room.

Sally then asked J (who was pretty non-verbal at the time) questions before she “observed” him in several different controlled settings. J was asked to “play” with things like baby dolls (I mentioned J is one of 4 BOYS right?), goldfish crackers and a magic wand

Nurse Sally explained that there was no definitive “test” to diagnosis autism. Rather, children must meet a number of criteria in a developmental screening or standardized assessment, to determine if they are on the  autism spectrum.

Well, J is fine, I know he does NOT have autism, I thought to myself as Sally babbled away.

Finally after a half hour or so the nurse turned to me and very matter-of-factly said …your son has Autism Spectrum Disorder….

My world was shattered. All the hopes and dreams I had for my blond-haired, blue-eyed baby were gone.

The weeks and months that followed J’s diagnosis are a blur. Suddenly the only things I talked about concerned OT, PT, sensory-seeking, redirection, speech therapy, story boards, PECs, ABA, IEPs, support groups, dietary concerns and whether I would allow my almost 3yo to ride the “little” school bus to his new, ABA, autism, inclusive preschool.

WTF happened to our lives? Why my J??????

Slowly, VERY slowly, things started changing with J. He started to become more and more verbal, using words for things like “cookie” and “tv. ” He stopped pointing to get our attention and started to write his name and do “normal” preschool activities.

In the 2 years since J’s diagnosis we have had many highs and even more lows. For every new milestone it seems like there is a set back hanging out on the horizon.

I often tell people having a child on “the spectrum” is like riding a roller coaster. Just when you start to get used to something and think everything is going to be ok, you plunge into another unknown and feel like you are back at square 1.

J’s teachers and therapists have alwayst told me it’s all about the “baby steps.”  I need to focus on how far J’s progress has come and NOT dwell on  how far he still needs to go. While I know this advice is true, it is ALWAYS easier said than done.

Last week was President’s Day and J’s school had a small assembly. J’s teacher sent a note home that J gave a small speech about our 4th president James Madison. Miss Heidi said J worked on his speech for weeks and was VERY proud when he was finished.

I saw the laminated “speech” in his backpack and decided to ask him to read it to me and my mom. The little video that follows is nothing short of a miracle. Here is a little boy who, 2 years ago, could say only a couple of words and now he was reading about James Madison!

The look on J’s face at the end of the video says it all and the pride I feel and love I feel for J is overwhelming. He has worked SO hard and it pays off everyday.

Having a child with autism is not easy and there are days I wish J was “normal.” However, then J will do something really, really great, like this video, and I think to myself everything IS going to be alright.

Bippity boppity boo

Bippity Boppity Boo

Bippity Boppity Boo (Photo credit: Adg’s Screen Caps)

So today I met with a colleague at work to “revisit” my February performance review. Back in February, it was brought to my attention, in a rather constructively critical manner, that I was a bit of a clock watcher and basically inept (per one partner). However, it was decided that I would be given 4 months to “improve” and then be given the opportunity to “revisit” the issues – I know you are jealous.

Well it has been over 4 months but I was in NO hurry to be reviewed again. Sitting across a desk from someone as they rattle off a list of negatives (no matter how “constructive”) is not really my idea of a good time (such as say a PAP smear) so I ignored the 4 month mark.

Honestly, I thought work was going pretty well. I was covering for another paralegal on maternity leave and that had kept me busy. I was working with different lawyers and it was a nice change of pace. There were no major catastrophes (at least that were brought to my immediate attention) and I was feeling somewhat confident – anyone who knows me knows that me using the word “confident” is a big deal since I am not typically a confident person.

Anyway, I decided to bring the review up last week when my supervisor was visiting my office and figured I wouldn’t hear anything more about it. Wrong.

So here I am today feeling OK about myself as I shut the door to C’s office. I make myself comfortable, amidst the folders and papers on her guest chair, and brace myself for the news. C starts off telling me that the majority of the “talk” was “positive” BUT there were some episodes of “self-sabotage” and plenty of room to grow (I do too much personal stuff and one partner never knows when I am “around”) but overall I had “improved” since February. Whew…but wait there is more.

It seems the overall opinion, among the lawyers, was that I am not very “remarkable” and that I do nothing to distinguish myself from any other Tom, Dick or Harry that could sit at my desk.

Do you feel the love???

How does one respond to that? Do you smile and say thank you? Do you cry and leave in a hurry or do you just take it all in and pretend to give a shit?

My reaction was a combination of all three. After a HUGE pep talk I left C’s office feeling…well…like crap but knowing it was up to me to make a change because no one was going to do it for me.

C said I was allowed a brief moment of pity (I took an hour) and then I needed to focus on what I could do in my life to make me happy (in work and home) and “shine”.

I feel like I am at a cross roads lately. I know that there is no way I was put on this earth to be a paralegal. Seriously, there had to be some other purpose for me other than being unremarkable at a law firm satellite office in Princeton, NJ. But what??

C had asked me today in her office what I liked to do and what made me happy. I toyed with a sarcastic rebuttal but decided against it. Instead I told C that I enjoyed blogging and working with parents of kids’ who have autism (like my 4yo).

Ok, great, wtf am I going to do with those 2 thingd?? While I would love to be a professional blogger, I don’t think bloggers get medical benefits  – a necessity with 4 kids (one of whom has ASD). Also, I really have a clue as to how you become a full-time professional blogger.

As for working with parents, this is something that sort of took me by surprise. Last year, I was given the opportunity to sit on a parent panel at an autism seminar. At first I was terrified thinking who the hell would care what I would have to say????

Then something strange happened that day, not only did people listen to me but they asked ME questions and even emailed ME. They actually cared about what I had to say and to paraphrase Sally Field “they really liked me”. It was a great feeling and I volunteered for any other future parent panels.

I started networking among the ASD professionals and even volunteered to work at a carnival hoping to get my name out there and be remembered. I don’t know if my efforts will pay off one day but at least I know that a couple of times a year I get to take part in something that really makes me feel good about myself and makes me feel like I am making a difference.

C told me today that I can’t expect instant gratification and that I need to keep working and making a mark for myself, to plant the proverbial seeds that will someday grow.

I guess C has a point but all I could think of when I got home is how I wish I had a real Fairy Godmother who would swoop down and shout bippity boppity boo! before making all my wishes come true.

I know, I know, I am a 40 yo mom of 4 and I can’t expect anyone, let alone a Fairy Godmother, to make my dreams come true. It is up to me to do that but really, just one time, I think it would be FABULOUS!!!

In the meantime I will continue to do my best at work to be more “remarkable”. I will put on a fake smile and look happy as I sit at my desk “working” and doing NOTHING personal (like everyone else is doing). Who knows, maybe it will all pay off and someday I will get to do something I truly like.

In the meantime, I will keep hoping and praying to hear the magic words bippity boppity boo!!

My love/hate relationship with the fire truck shopping cart

Why don’t you take J with you food shopping, he never spends time alone with you my mother “suggested” this past Sunday. Food shopping is usually my “alone time” (sad isn’t it) but mom did have a point. Rarely do I spend any alone time with J (my 3yo with autism) aside from fighting with him to get dressed or go to the bus stop.

Wanna go to the store with Mommy J? YES! he yelled as he ran to get his shoes. Guess that answered my question. Off we went to my favorite food store McCaffreys.

McCaffreys is the Nordstroms of food stores. It’s prices are a little higher than the average store (ie: Shop Rite, Stop & Shop) but everything just looks so much nicer. Apples are shiny and stacked in neat pyramids, vegetables are fresh and look slightly misted AND the average wait time at the deli counter is maybe 5 minutes (that alone is worth the trip).

So J and I get to McCaffreys and I find a cart to stick him in. NO NO NO! he says. Dude, we gotta get in the store, what is the problem? Truck, truck he says.

I look across the parking lot and see what he is talking about, the infamous fire truck shopping cart. O-M-G NOT the fire truck cart!!

Have you seen these carts? In theory they are adorable! It’s a regular shopping cart and attached to the front is a fire truck (or police car) with 2 seats and 2 steering wheels (with horns that beep). The truck part looks sort of like the Little Tikes Cozy Coupe car. However, these carts are dangerous.

First, the inside of the truck is a petri dish of germs. The steering wheels are dirty and god only knows what kids do when they are inside the truck. A parent can’t see inside the truck when pushing the cart (unless you to walk around to the front of the cart and bend down to look inside).

Second the cart is impossible to steer, especially when you start on your food shopping journey. The regular cart is empty (or maybe has some produce in it) and the fire truck is weighted with your kid(s) so when you attempt to steer the cart takes off in a separate direction. Wait, that is not the best part. Trying to turn from 1 aisle to another is really fun. You actually have to give yourself a running start and go wide to make the turn. This is NOT appreciated by the other shoppers, which is obvious by the sighs and dirty looks, when you sometimes bump their cart with the fire truck.

Lastly, check out is like an obstacle course. Once you manage to fit the cart in the check-out lane (no easy feat) you have to figure out a way to slide yourself past the cart to start bagging. Due to the size of the cart, it is almost easier walk around another check-out lane to start bagging (luckily McCaffreys bags for you AND they group similar items in the same bag).

J and I survived our food shopping trip with the fire truck cart. J was as happy as a clam in that damn cart. He didn’t complain or try to get out once. He happily steered the dirty wheel (of course I had no wipes) and beeped the horn and would say Moni…look wheel! Looking at his happy face made the torture of the cart all worth it(sort of).

I leave you with one last thought on the fire truck shopping cart, this HAD to be invented by a man. A mom would have test drove it first.

The good, the bad and would it have killed her to put some lipgloss on

Lipstick and lipgloss

Image via Wikipedia

Yesterday started off good. I was having a good hair day, there were no major catastrophes with the kids and, most importantly, I was wearing my slimming navy pants. Ok, I can do this, only 8 hours and my weekend starts I thought as I headed into work. I was also happy because last night was going to be my first Google+ “pow wow” with some blogger moms I had gotten friendly with and I was excited to try it out.

The morning went by pretty quickly. I was working on a very boring important project so that was keeping me busy. Around lunch time I started to get a nervous feeling  in my stomach. I had J’s parent-teacher conference after work and I didn’t  know what to expect. J is my 3yo with ASD (autism spectrum disorder) and he attends an autism pre-k class. J has been making wonderful progress this year, he is talking more and actually making sentences and being more expressive and even socializing with some of the other kids. However, he will NOT potty train and tends to be a bit stubborn (not surprising if you knew his brothers) and I knew this was going to come up at the conference. Ugh.

My other problem with the conference is something that has nothing to do with J, it is all me. When I see J making so much progress and acting like a typical 3yo, I start to think that maybe his ASD diagnosis was a mistake. I start to tell myself that his teacher/therapists will tell me J is “cured” and we can go back to “normal.”  This fantasy was squashed at our last conference so I wasn’t feeling too optimistic for this one.

Meanwhile at work, I was still diligently working on my boring important project and it was obvious I was not going to have it completed by 4pm. I went to update my boss on the status and she was actually happy (sort of) with the progress. We chatted for a minute or 2 about my nervousness over J’s conference and then came this …I just want to give you a little constructive criticism…

For the next 20 minutes I was given enough constructive comments to last me till the end of the month. The comments weren’t all bad constructive, I was told I was intuitive and just fail to use this  at work. After hearing the words clock and watcher I excused myself since I was now late for the parent/teacher conference. The whole ride to J’s school those words swirled in my head. Super, now I was late AND in a bad mood.  

I must have looked “great” when I ran in the classroom because J’s teacher asked me if I was tired before she offered me a tiny seat at a tiny table in the back of the classroom. J is not “cured” but he is doing great. His teacher and therapists told me his progress was excellent and he was a pleasure to have in class – he just needs to potty train and not be so stubborn.

I decided to treat me and the husband to chinese for dinner since I was tired still feeling sorry for myself.  The next couple hours were a blur of cleaning up, baths and bedtime  – and  trying to come up with 3 pieces of green clothing for everyone’s respective “green day” at school. Before I knew it, it was time for the “pow wow”. I was a little nervous about being on a camera but thought it wouldn’t be too bad, after all it was 9pm on a Thursday night. I logged on to Google+ and all of the sudden I was not only staring at the faces of 4 other mommies, I was also staring at myself . O-M-G was all I could think, would it have killed me to have put on some concealer or at least a little lip gloss before I met these women??!!

The chat was great once I was able to postition the computer so my head was cut off stop staring at myself. It was nice to hear what other moms had to say about their lives and chaotic mornings.

Lying in bed, thinking over my day, I realized it was not the worst day. Yes the constructive criticism sucked (and I have gotten enough lately to last me a lifetime) but in the grand scheme of things how much does that matter? When I am 80 (god willing) I hope I not to be  remembered for what I accomplished at the office but rather for what I did as a mom. A mom who tried (sometimes successfully) to raise her 4 boys to be happy, healthy and kind people. 

ps – I PROMISE for the next cyber pow wow to have some make-up on 🙂

Our life on the spectrum – Part 1

Rainbow above Kaviškis Lake, Lithuania

Image via Wikipedia

Have you every thought about having J evaluated?  The pediatrician asked me rather casually in April 2010. J and I were there for an ear infection and frankly, all I was thinking about was some amoxicillin.

Ummm evaluated for what?  I asked. Well it just seems that J is a little ‘difficult’ to parent and maybe you should have him tested for PDD-NOS. It’s nothing to worry about, some kids ‘outgrow’ it.

BAM Those words were like a whack to my head. What the heck was she talking about and what the hell is PDD? J had just woken up from a nap and had a cold for 10 days, of course he was being difficult. He was already in Early Intervention (EI) for a speech delay what else did the doctor want me to do? I ignored it for a while (probably 30 minutes) and then did what any other mom would do – I Googled.

Big mistake. PPD-NOS stands for Pervasive Developmental Disorder – Not Otherwise Specified and is associated with AUTISM. W-T-F was all I could think. I was sobbing at my computer thinking that the doctor thought my adorable, blond-haired, blue-eyed almost 21/2yo, baby was Rainman.  No way, not J that doctor was 100% wrong.

Months go by and J is still not talking at an age appropriate level. I get varying opinions on why. Speech therapist #1 tells me J is just a control freak and doesn’t feel like talking.  Speech Therapist #2 says that he is just not ready and when he is ready he will talk. Speech Therapist #3 says that once J turns 3 he will probably talk non-stop boys just take a little longer.

In the fall I decide to have J evaluated for Autism Spectrum Disorder (ASD). I have convinced myself  he is fine but I just want to make sure. It’s just a co-pay. We will get the evaluation, they will tell me J is fine and we will move on.

Of course I can’t get an appointment until January 2011 so we wait. The holidays come and go and I find myself always staring/analyzing J. Is he looking me in the eyes when I talk to him, is he playing with his brothers, is he flapping his arms, is he social with his cousins??? 

January 10, 2011 J and I head out at 8:00a for his evaluation. I told family that we were going for another speech evaluation, why get them all worried when it will be nothing. I even sugar-coated the appointment for the husband because it will be fine.

J was NOT fine. In the matter of 30 minutes I’m told my baby has Autism Spectrum Disorder (ASD). He would need out-patient speech therapy, occupational therapy and a consult with a neurodevelopmental pediatrician. A social worker would contact me shortly and there was a support group meeting for newly diagnosed ASD families in a week. Oh, it was also suggested that I rent the Temple Grandin story on dvd.

W-T-F. I start crying and J and I leave. I decide the evaluator is wrong. J did do what she asked but she didn’t notice. Plus, the evaluator is a total stranger , of course J didn’t want to cooperate with a stranger he’s a baby after  all.  And who or or what is Temple Grandin??

I tell no one J’s diagnosis with the exception of  my best friend and husband. When family ask what is wrong I assure them it is just a speech delay. I will NOT have people label my son and think of him as Rainman. I tell myself we will get a second opinion and I ignore all calls from the social worker.

All I do is think about the label of ASD. It haunts me.  Why does my kid have to carry this burden at the age of 21/2. The label wont just go away, he’ll be forced to carry it around his entire life. Kids in school will tease him and people will give us that pity stare when they see us.

Weeks go by and I am a mess. I am moody (more so than usual) and spend any spare time I have staring at J. He is the one that needs my attention, not the other 3 toddlers in the house.  The other kids are  “normal”. I devote hours at work either on the internet looking for information or on the phone trying to get appointments for speech and occupational therapies or a second opinion.

In between all this I remember calling our pediatrician to give her an update. She listened to me then told me not to focus on the label but rather, what doors the label would open for J. You are a good mother and you can do this she said before we hung up.

It has been 1 year and 2 months since J’s diagnosis and guess what?  I can do it,  WE  can do it. It has been a long, emotional and stressful journey but we are doing it everyday. A little while after the phone call with the pediatrician I spoke to the social worker (she was AWESOME), I went to the support group (I took my good friend so it wasnt too bad) and more importantly, I stopped feeling sorry for myself and for J. I stopped asking why me..why him and began to look past the label of ASD and focus on what I needed to do for J, not because he had ASD but because he was my son.

I also tried to focus some of my negative energy into paying it forward. There is an extraordinary amount of information on ASD and it is completely overwhelming. I did not want another newly diagnosed parent to feel as helpless as I did. I wanted them to see that it would be ok. That they will need to look past the label and become an advocate for their child. Hey, if I could do it anyone could.

J has made amazing progress this past year.  A year ago, J could say a couple of words if prompted. Today he is able to speak in a sentence and communicate his needs/wants (wants being easier). He attends a full-day, autism preschool program and takes a bus to school.  J goes to out-patient OT and ST 2x a week and has started to take part in circle time at school. He loves to sing, play on the playground and his favorite class is gym. Hands down though, THE absolute best thing J has done is say one simple word Moni – which is how he says mommy. 

Everyday is not always easy. There are days I want to cry or pull my hair out because I just can’t take it.  I want J to be “normal”. Then I look into J’s blue eyes and see him smile and I tell myself it will be ok that he is “normal”.

This was not an easy post for me. J is my baby (technically he is the second to youngest but you know what I mean) and I will do anything to protect him. I am also not someone who goes around as a walking billboard for autism. However, I think it is important for other ASD parents to hear our story and support one another. In the months to come I hope to share more stories about our daily struggles with ASD. I should warn you, I always try to find the humor in things, especially with ASD so I hope that won’t offend anyone. I believe that if you can laugh and smile at things it makes them a little easier to tackle.

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