Skip to main content

Posts

Showing posts from April, 2013

"That doesn't soften the ache we feel when reality sets back in..."

This is another essay I wrote a while back- nearly a year ago. I published it on a blog that nobody read because while the writer in me wanted to share it with strangers, I couldn't face having people I actually knew know that I was feeling this way. At the time, trying to be happy and smiley and funny about Autism was my goal. If I could laugh at it, it couldn't be that serious. It was such a facade because PJ's diagnosis was too new, too raw to have a comfort level with. So while I wanted to be funnyhappysnarky girl, I was really darktwistysad girl. I'm not either of those girls now- I like to think that with all of PJ's growth and progress came a bit of growth and progress for me, too.
**********
I had dreamed of being a mother for as long as I can remember. I wasn’t exactly a girlie-girl, so when my friends started getting married, I didn’t feel even a blink of jealousy, but oh. When my friends started having babies, each sweet face I snuggled and squealed ov…

How will I know...

This is another essay that I wrote a while ago, but it is something that I still struggle with- do I tell people who I know casually or whom I was just introduced to that PJ has autism? Obviously, I blog about it to death, but since like, 8 people read my blog, I can't expect to find fans on the street who will automatically be in the know!

Well, not yet, anyway. ;-) Until that time, I need to figure out how and when I introduce my sons special differences to people we meet.

ooo*OoOoOoOoOoOoOoOoOoOoOoOoOoO*ooo
PJ and I got an invitation to meet up at a local park from another mom in our area. We had never met before, but I had joined a Facebook group to expand my circle of mama-friends and for PJ to interact and make friends with lots of kids his age! We’ve been so, so blessed in the group of amazing friend that we already have that I decided to push my luck!


My luck continued as the mom I met up with was sweet, friendly, and easy-going! Her adorable son was the perfect age- old …

"You can't expect me to be fine, I don't expect you to care..."

{stream of consciousness}

(I just went over what I wrote and it makes no sense. But whatevs. I'm hitting Publish. I'm a rebel like that.)
It's a Friday night, and I have all of the lights out, a yummy smelling candle lit, and a cup of coffee. And to add to the tranquility, I'm watching "Say Yes to the Dress- Atlanta".

Ahhhh....

This writing project I have embarked on has been cathartic for me. While a few of these posts had been written a while back, it is the first time I have been willing to truly lay myself open to my feelings about PJ's autism diagnosis. It's been a little over a year since his diagnosis, and I have learned so much, with a lifetime of things to learn before me.

Today, we woke to gray skies and spring rain. The morning was busy- I was meeting a friend for coffee, reading to PJ's class, and then returning to school later for PJ's IEP. I had forgotten to pack PJ some money, so he could get a treat at the school bake sale (be…

"I love you just the way you are..."

I originally wrote this post close to a year ago. At the time, I was writing about PJ's diagnosis in a space separate from this blog. I said it was because I wanted a space to be "snarky" and "brave" about Autism, but really, I just wasn't ready to share it on my "real" blog.

Ugh. What a pussy.

I eventually faced facts and realized that Autism is, indeed, here to stay, unwelcome little asshat that it is. That was progress, right? I felt pretty damn good about it, and then I realized that if Autism hadn't snuck in, PJ wouldn't have, either. To wish away Autism would be to wish away my kid. It's one of the many, many lessons I learn every single damn day. Thank God.

______________________________________________________________

While PJ was in his room peacefully napping alternately chatting to himself about all of the characters on Caillou and saying “Call now, call now!” (proof that, perhaps, he watches too much television), I took part…

"When the rain washes you clean, you know..."

Two weeks after after the evaluation, Pete and I went back alone to discuss the results with the team at CHOP.

I was feeling the same jumble of nervous energy that I felt before- I got dressed in cute clothes and put on makeup, fussing over my appearance as if that might change the results. And in my heart, I knew what the results were.

Pete and I chatted as we drove over the bridge into Philly. Many times, if there is something we are both anxious about we end up picking fights with each other out of stress, but this time we companionably talked as we parked and walked into the building, stopping quickly to grab drinks (Diet Coke for me, Vitamin water for Pete) from the WaWa in the same building. I had not been able to really eat for days due to a combination of horrific stomach bug and my growing nervousness about our appointment, but in that moment my whole being was crying out for a Diet Coke!

A few minutes later, we were in the same room that PJ's exam had been in except that…

"Here's the story..."

I completely forgot to announce this yesterday {FAIL!!!} - the winners of the passes to the Liberty Science Center!!! There were very few entries (ahem, two) so I decided that everyone wins! Jenny and Shannon, I will be contacting you as soon as this is posted! Hooray for winning stuff- I know you guys will have a blast at the LSC!

------------------------------------------
Part One:
After six months of waiting, the day arrived. January 25th, 2012, the day of PJ's evaluation with the Early Childhood Development Team at Children's Hospital of Philadelphia.

The appointment was for 9am, which meant we had to get up, fed, dressed and over the bridge into Philly during the morning rush hour. When he had his evaluation for Early Intervention, I cleaned like a psychopath. In the same manner in which I prepared for his Early Intervention eval, I cleaned. But in this case, it was us, not the apartment! I dressed PJ with my usual care (PJ has a great wardrobe!) and dressed myself as well…

"Don't talk, I will listen..."

MyAutismTeam.com is a new social networking website that allows the parents of children with an ASD to connect. Much like Facebook, people can log in to vent, joke, ask questions and offer support. Unlike Facebook, a parent can be sure that there will be someone who can relate to a story about meltdowns, IEP's, insurance woes, or marital problems. By the same token, parents can share all of the little victories and joys that to some, might seem insignificant.

Often, the parents of children with Autism can feel isolated. I spill my guts into my blog, where the writer in me wants people to read and the Mama in me wishes it had a little heart-shaped lock like my middle school diary. I have an outlet, but some parents of children with Autism do not. MyAutismTeam.com is a great way for parents to have a release and an audience they know can relate.

A few weeks ago, a parent named Mike posted the following, and he was kind enough to say "yes" when I asked if I could share it…

"Vacation, had to get away..."

F-R-I-D-A-Y!
one:

It's Spring Break for my best Boy, and he has been having the time of his life this week! We spent three days in Ocean City, Maryland, where PJ was surrounded by his doting, loving cousins! My kiddo got his first sight of the ocean from our hotel balcony and promptly began the monologue "Let's go see the ocean? Go to the ocean? PJ go see ocean?" {repeat}
Thankfully, he not only got to dip his toesies into the very friggin' cold ocean, but he saw wild horses on Assateauge, went on a nature hike in Chicoteauge, swam in the hotel pool, ate yummy ice cream at Dumser's, and watched the sun set to a musical fanfare at Fager's Island. We walked the boardwalk and even stayed up until 10:30 with the big kids! It was everything we wanted for PJ's first stay-in-a-hotel vacation.


two:
Our bathroom was redone!!! We had noticed that the floor around our toilet was a little soft (nothing like potty training a toddler to make you notice what the fl…

"Mr. Telephone Man, there's something wrong with my line..."

Waiting for the call that we had an appointment with the developmental specialist at Children’s Hospital of Philadelphia was both effortless and horrible. It wasn’t something that consumed our thoughts all the time- day-to-day things still continued to go on in the same fashion. With the exception of the start of therapy from Early Intervention, our days were very much the same. There were play dates with dear friends, outings to local fun spots, and dinners with family. Halloween came and went (PJ was Super Grover!), Thanksgiving passed, PJ’s 2nd birthday was celebrated with great joy!


Before all of that, in early October, we received a letter that all of our information and paperwork had been received by the Center for Childhood Development at CHOP- the one we'd been waiting and hoping for. The letter stated that we could expect a call in November or December to make an appointment in January or February, a full six months after we started the intake process in August. The waiti…

"...just like paperwork but harder to read."

AUTISM- IT’S JUST LIKE THE SAT’S!Writing about our difficulties finding a developmental physician the other day reminded me of all of the paperwork that our autism journey has entailed so far. Environmentalists, I hate to break this to you, but it may not be cow farts or toilet paper or gas-powered vehicles that are to blame for the waning condition of our world.
It’s the ‘Tis.
The sheer amount of paperwork that surrounds us is astounding. Each doctor that we contacted sent us a health history to be filled out, and each was no less than 20 pages. We were given brochures on how to find support and pamphlets on research. There were packets that detailed our rights as the parents of a child utilizing the Early Intervention Program/school system and charts to show how much it would cost us. There were receipts for specialist visits (speech, audiology, etc.) . There’s a summary page for each therapy session (3 times a week plus one per month). I kept all of it in two large, sectioned binders…

"You see it's too much to ask for and I am not the doctor."

After PJ's evaluation for Early Intervention gave us an indication that the possibility of Autism was there, we set out to find a physician to diagnose and treat him. But, as it turns out, there are many, many children who show signs of Autism and very few pediatricians who specialize in child development.
What the hell????
Autism numbers continue to rise- according to Autism Speaks, 1 in 88 children are affected by Autism Spectrum Disorders. We live in southern New Jersey, which is five minutes from Philadelphia, an hour from Delaware, two hours from New York, three from Baltimore and a little over five from Boston. In short, we don’t exactly live in the sticks. We have a number of major metropolitan areas and some of the finest health care centers in the country at our disposal. So when it was advised that we make an appointment for an evaluation with a developmental pediatrician, it was off the The Googles I went.
I searched within a 50-75 mile radius of where we are because…well,…

"...I understand why you can't raise your voice to say..."

It's April, and it's Autism Awareness Month!
At this time last year, we had just officially learned of PJ's diagnosis, and while the love I have for my son never wavered- not once- Autism was still a dirty work in my mouth. I wasn't ready to face it outside of the little bubble that contained PJ, Pete, and myself. Now, I know that having a child with Autism is like holding a rose with no gardening gloves. There is a risk of being stuck by a thorn, but you take it because it's worth it to hold something so beautiful.

When PJ was 16 months old, my husband and I noticed he still wasn’t speaking very much. At the time, we weren’t very concerned- he had turned over, crawled, pulled himself up, and walked a bit later then his peers. We mentioned it to his pediatrician, who was also unconcerned. Still, when he turned 18 months and still wasn’t saying any words beyond “Ma” and “Da” it was suggested that we contact our state Early Intervention Program and have an evaluati…