mommy&everything

trying to find myself and humor in life

Archive for the category “Autism”

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.

Daily Prompt: Naked with Black Socks

Today’s Daily Prompt is are you comfortable in front of other people, or does the idea of  public speaking make you want to hide in the bathroom? Why?

Hide!

However, I will on occasion, step outside my comfort zone and speak in front of a group as long as it’s for something I am passionate about.

I have a son who is on the autism spectrum  and soon after his diagnosis I felt completely overwhelmed by the amount of information being thrown at me.

I promised myself that, if given the opportunity, I would “pay it forward” and help other parents going through the diagnosis process.

Soon I began participating in parent panels and support groups for parents of newly diagnosed kids on the autism spectrum. I’ve been doing this for over 4 years and it’s still not easy.

The funny thing is that in my head I think I am an AWESOME public speaker. Someone who can improvise and exchange witty banter with the audience.

A day or so before the panel I’ll jot down some notes but won’t rehearse or practice. It’ll be fine, I tell myself as I toss my notes into my purse and watch some mindless show on TV.

The day of the panel I wake up with a small knot in my stomach but can usually brush it off, or push it out of my head – 4 crazy boys can do that do you.

On the car ride over I start to feel nervous but it’s not until I walk into the room that I’m overcome with panic.

Crap! Why do I do this to myself? I think as I walk into the room and take a seat up front.

Look at all those people staring at me. Ugh, I don’t want to do this anymore, maybe I can sneak out. 

Before I can escape, the other speakers start, and I can feel my palms start to sweat as I go over my “speech” in my head – silently cursing myself for not practicing in the car.

As the person ahead of me wraps up, my heart starts to beat faster dreading the time when my name is called. As I am introduced, my face starts to turn a lovely shade of pink as I squeak out my name and start to tell my story.

In the blink of an eye it’s over and I survived!! No one laughed AND some even asked me a question or 2.

All that worry for nothing.

Sure, some days I tell a better story or engage with the parents more but no matter what I can still say that I did it and hope that I helped someone.

Thanks for reading.

Happy Thursday – it’s almost Friday 🙂

 

Random “Monday” Thoughts

Hello and Happy sorta Monday friends. I know it’s really Tuesday but let’s be honest, the Tuesday after a long weekend actually feels worse than any regular Monday doesn’t it?

Was I the only one who woke up today totally stunned, thinking it was Sunday with a slight knot in my stomach when I realized I had to actually go to work today?????

The family and I had a pretty busy Memorial Day weekend this year. Sadly, we were not able to visit the Jersey Shore (in-laws live in Long Beach Island) but we did get invited to a couple of bbqs and the twins marched in their first ever parade with some tball teamates (and daddy).

The weekend was filled with lots of children fighting and many margaritas which could be why my pants are feeling a bit snug today.

And now without further ado, I bring you my random thoughts….

1) Horay for the long, open front cardigan

I could literally hug the person (HAS to be a female) who invented the long, open front cardigan. It is by far my absolute favorite fashion go-to item. If I had to guess, I would say I wear one at least 2 times a week.

I own them in a bunch of colors and fabrics. Some have pockets, some have dolman sleeves (for when I want to look like I am a bat) and some are strictly for winter months and others, like the new one I am wearing today, just scream summer!!

Today’s is white, 3/4 sleeves AND the back is a little longer so it covers by butt. Seriously, does it get any better than that?? I was able to find this beauty at the Loft this weekend AND it was on sale for $44.00 with an extra 50% off.

SOLD!!

2) I suck at Candy Crush

A few weeks ago, I talked about my new app obsession Candy Crush. I play it all the time on my iPhone and even got the husband hooked.

I hooked up my Facebook account and now I am able to see how many “friends” also play and what levels they are on (their FB profile pic appears on the cute Candy Crush map).

However, as much as I love this game, I think it is time I come to terms with the fact that I absolutely SUCK at the game.

I have played Crush for at least 3 weeks and I am only on Level 38. This is not “normal” and I am beginning to think I should just give up.

First, I thought it was just a fluke that it was taking me a few days to pass a few levels. I would waste all my lives in a 10-minute setting and was constantly Googling tips to cheat beat the level I was on.

A couple of weeks ago, after being stuck on Level 33 for almost a week, I actually asked someone in work if they would clear the level for me and keep it our little secret. (in my defense this guy is on Level 216).

Well I never had the work guy beat my level, I was able to do it myself but I have been on Level 38 for a week and I don’t think I will ever clear it.

The husband has well surpassed me and I see FB friends whizzing past me daily. I’m torn, do I give up or stick with it? Thoughts anyone???

3) Sometimes being a mom isn’t so bad

As most of you know, my son J was diagnosed with Autism Spectrum Disorder about 21/2 years ago. The journey with J has been a roller coaster ride of emotions and “stuff” .

J has really good days, really bad days and everything in between. Through it all J has put on a brave face and is almost always smiling (unless he is angry). When he is 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 J 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 the talent show.

J’s teacher had mentioned that she had worked with his 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.

When I arrived at his school, the parking lot was packed. I quickly grabbed 2 seats, the husband was meeting me there, and anxiously waited for the show to start. I grabbed a program, and quickly became annoyed at THE most annoying special-needs- mom in the row ahead of me. She had saved the entire front row and there was no way I could see over her huge ponytail (and big mouth).

The principal handed out programs and under Jake’s class it said “My Girl”. It all made sense, J 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 J’s 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.

They all took their places and did the entire routine to perfection! I could not believe my baby was doing that in front of a room full of people. No way that could have happened 2 years ago. To me it was a miracle.

When they took their bow, the room erupted in applause as the teachers shot confetti into the air. They did it – J did it!

I don’t think I will ever be able to describe the feelings I had when J walked off the stage. It was a combination of so many emotions and feelings all mixed together. I just remember thinking that everything would be ok and J will be alright.

My Guy

My Guy

Have a great week everyone and thanks for reading.

It’s the little things

Hello friends out there in the great and almighty blogosphere!! I am back from another blogging absence that was far too long.

I don’t know what happened. One day I was home with my herniated disk (and 3 pinched nerves) blogging about Snow Chairs and the next thing I know over a month has passed and I have written no blogs – gasp!!

Friends and family dropped hints and even offered up some blog topics but nothing worked.  It wasn’t really a writer’s block, more like lack of motivation.

I was home over 8 weeks on short-term disability and while my back was healing and I was feeling better, I just felt blah.

Maybe it was the tail end of winter or the kids being sick or just life in general. Who knows. Whatever it was it caused me to almost fear the blog. I would think of a topic or idea and completely over think it.

Thoughts like Is this funny? Would anyone like it? Maybe this topic is too boring or Suppose people laugh???? were consuming me.

Once I started comparing myself to other blogs and bloggers I knew it was time for me to take a mini vacation.

I reminded myself that I started this blog for myself, not to get followers and fame (not that I would mine either LOL). I decided I would not blog again until I felt ready.

Which brings me to today Monday, April 8, 2013. Today is my first day back at work since February 5th and I was more than a little nervous to come back.

I felt like I was starting at a new school, not coming back to the place I have worked since November 2000.

I tried not to be a total Debbie Downer this morning, even when the twins yelled at me that they were too tired to get dressed.

All morning my stomach was filled with butterflies that would not go away. I changed my outfit three times before finally giving up since the kids would be late for the bus.

In the van waiting for J’s bus, I started to think about some blog topics, hoping the “right one” would magically pop into my head.

J was not a happy camper today. J is my 4yo (almost 5) with autism spectrum disorder and he is very “routine driven.” For the last 2 weeks, J’s entire routine has been out of whack and today was his first day back at school.

J sat in the van writing out words on the back of a car seat instruction manual, quietly whining that he didn’t want to go to school or see his beloved teacher Miss Heidi.

I tried telling J that I understood and that Mommy didn’t want to go to work either (what? he was the only one there to listen to me complain) but J wasn’t buying any of it.

When the bus pulled up he took a deep breath and ran toward it (he wanted to beat his friend C to the door). I yelled Hey wait…give Mommy a kiss! but he didn’t hear me or didn’t care.

I watched as he buckled himself into the bus seat and chatted with my neighbor. Suddenly the bus doors opened and the driver called my name.

Startled I asked what was wrong Nothing…J wants to give you a kiss she said.

And with that my little boy appeared, tears in his eyes, and gave me a kiss before getting back in his seat and buckling himself in.

J and I got to spend a lot of “alone time” together the past couple weeks – a rarity since he shares me with 3 other brothers. Sometimes he gets lost in the craziness of our house and the demands of life.

When I got to work I was not in a good mood. Sure, I put on my “game face” as I greeted people who pretended they were SO happy to see me back in the office.

All morning I could not shake the image of J’s face when he left. Just thinking about it now makes me a little sad. I looked through the pics on my phone of some of the stuff J and I did the past couple weeks and decided (with the nudging help of Mrs. Jeter) to do a blog.

I don’t know if this is my best blog, or if it is interesting or thought-provoking. However, I do know that every once in a awhile I need to step back and appreciate what I have and smile at the little things.

Happy Monday – hope everyone has a good week.

Angry Birds bike helmet

Angry Birds bike helmet

Liberty Science Center

Liberty Science Center

Strike a pose

Strike a pose

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.

Stepping outside of my comfort zone

Autism Awareness Ribbon

Autism Awareness Ribbon (Photo credit: Wikipedia)

I am a shy person, always have been.  I was the kid attached to her mother’s leg growing up. The kid always crying to go home and asking where her mommy was (birthday parties, school or playdates, it didnt matter). Clearly I was suffering from separation anxiety but back then there wasn’t a label for everything. 

Luckily, I have gotten a little better over the years. It still take me awhile to warm up in social situations (thank god for adult beverages) but I am able to walk into a room of strangers and not cry (at least night right away).

In January 2010, when J was diagnosed with autism, the nurse practitioner handed me a flyer for a support group meeting. I remember shoving the paper in my purse and thinking NO WAY was I going to sit and cry with a bunch of strangers.

The social worker who ran the group talked me into going (after I avoided her calls for 2 months). I dragged Mrs. Jeter and off we went. It wasn’t that bad although, we did have to go around the room and introduce ourselves and I HATE that (I always get all nervous before it is my turn like I won’t remember what my name is). Anyway, I started attending more of the support groups (L, the social worker, tells me I stalk her) and began to feel more comfortable talking to the group of parents. I guess because we all had autism in common.

After one meeting L asked me if I was ready to be on a parent panel at the next Navigating the Journey seminar (this is a seminar for parents of newly diagnosed kids with autism. It goes over all aspects of autism and there are guest speakers and a parent panel to answer questions). I don’t know if I am ready but I will think about it I told her.

Me in front of a room of strangers? No one will want to hear what I have to say. Who cares about my thoughts, I am not a doctor.  

Were the thoughts that ran through my head for a week. Finally, after discussing with Mrs. Jeter, I made the call (or email) and told L I would do it.

The day arrived and I was nervous all morning, constantly checking to make sure my hair was ok and I wore the right outfit. When I got to the seminar I texted Mrs. Jeter and told her I couldn’t go in (lucky for me she was ignoring me). Finally, I got myself out of the car and into the room.

I felt like all the other parents knew each other (they did) and started to turn bright red when someone said to get a chair and come to the front of the room. OMG here we go, you can do it, I told myself.

Guess what? I did do it (yay!). Not only did I manage to not make a fool out of myself (I hope),  parents actually asked ME questions and listened and cared about what I had to say. Afterwards someone even asked for my email. 

That was back in September and tomorrow will be my 3rd parent panel. I was even asked to take part in a parent panel at an autism symposium (the word symposium makes it sound that much more official) in April.

I have come a loooong way from the kid who almost got kicked out of kindergarten. It is not always easy.  I still get nervous when I have to walk into the room and I’ll always wonder if I’m wearing the right outfit but at least I know I can do it. Now if I can only work on helping the kids not be so shy.

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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