mommy&everything

trying to find myself and humor in life

Archive for the tag “autism spectrum disorder”

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 🙂

 

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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.

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.

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