Wednesday, November 13, 2013


Last week Ethan had his six month check up with his pediatric endocrinologist. Doctor appointments have become increasingly challenging for Ethan as of late. So, I was somewhat prepared for our visit, but not at all for what actually transpired.

We decided to have Ethan wait in the hallway in a quiet little seating area away from all the noise of the waiting room. Good move right? Wrong! He began pacing a bit, so I decided to walk him up and down the hallway pointing out pictures and objects for us to pass the time. Good move right? Wrong again! He took particular notice of the FIRE ALARMS along the hallway.

At first I didn't think much of it. In hindsight, his infatuation with all things bright red, such as the Biohazard logo, should have alerted me. We continued down the hallway and all of a sudden he leapt at one of the fire alarms and PULLED it!! I swear to you my heart stopped beating for at least a moment. I started praying out loud, "Oh please dear god, DO NOT let that fire alarm go off." Then I heard it. Slowly at first. Then louder, accompanied with a blurb, blurb, blurb, and flashing lights.

I actually considered ducking into a hallway closet. What do I do now? What do I do? I looked at Ethan, who appeared to be grinning. People began coming out of their offices. They were evacuating! Should I just follow along and say nothing? No, I have to speak up. So I did. I told everyone it was an  accident and we needn't evacuate right? Nope. All 3 floors of this entire medical establishment had to evacuate and wait for the fire company to come and inspect the building.

Needless to say, we did not get seen that day. We had to reschedule for today. And, I am very happy to report we did in fact take Ethan back to the "scene of his crime" without incident. Can I tell you how ready I was? I had the IPad, loads of lollipops, and a singular focus on each and every fire alarm in that hallway..

Wednesday, September 18, 2013

Long time no talk

It has been 3 and a half months since I've posted a word here. Thought maybe it was time to call it quits since I was struggling to find the time and energy to blog. But, I see how many of you still find the time to check in here. Basically, if you all can do it, so can I.

Updates on the three munchkin bunchkins:

Big E

He is healthy. He is "mostly" happy. He is still our rock star.


He is in third grade! He is still the most incredible brother to his sibs he could possibly be. He makes me proud each and every day.

Miss Mama Mia

She is improving! I mean really improving! She is using so much more language and has a budding interest in her peers!

I will try to blog more in the upcoming weeks. Thankfully, I am still getting to freelance for Central Penn Parent. And, I am working on a children's book. Hey, it may take me a couple years to write and publish it...but I am determined to do so. Hint: the book is about a brother's love for his two siblings who have autism.

Friday, April 26, 2013

Parenting and the autism spectrum

When my children were first born, I had the same hopes and dreams all parents have. I envisioned driving lessons, dance recitals, and late nights waiting up for them to return home safely. I was eager to teach them, counsel them, and help them become unique and independent beings.

Early into my parenting journey, I realized that my expectations had to drastically adjust to what was becoming our reality. We now have two children with autism. They are bright, beautiful, and full of life. But, they also quite disabled.

My eldest son does not speak. He is heavily reliant on us for most of his day. He has an incredible belly laugh and smile that is super contagious. But, he requires constant support and supervision.

My daughter is not nearly as reliant on us, and thankfully has speech that is continuing to develop. She as a stubborn will to succeed, coupled with intense anxiety in new situations or environments.
She loves the outdoors, exploring, and animals.

I also have a precocious typical son thrown into the mix. He is my absolute hero. He supports his autistic siblings in every way he can. He is able to find constant joy in his life, that can be quite challenging.

When you are parenting children with autism, everyday routines and excursions can be challenging. Sometimes you feel judged by those that have no frame of reference for what you are going through. Other times, you feel incredible support from parents who are like yourself, or at least make an effort to appreciate and value your child as a unique and important member of our community.

The fact is, autism is incredibly common. It would behoove all of us to learn what we can about this ever increasing disability.

My advice to those that know a family with an autistic child, or children, is simple. Remember they are children first. The disability is secondary. Autism also varies greatly in severity for each individual. Get to know the child. You might be quite surprised just how much they do know, and can do!

I am a proud parent of 3 very unique and spectacular kids. Two of them, just happen to have autism.

Wednesday, March 20, 2013

Transitioning to school age

I had to go register Mia for kindergarten yesterday. Normally, this is an exciting, as well as, a bit anxious time for parents. All I feel is pure anxiety.

I even went to the wrong school to register her. Showed up at one elementary when I was supposed to be at another. The very helpful and kind school secretary told me so. Right after she asked where my child was. To which I replied, "Mia has autism and cannot participate fully in a screening." Her mouth opened wide and she said, "You have TWO children with autism?" "Yup, I said, lucky me."

Then I felt bad and wondered if that wasn't the best reply. What else could I have said? Oh yes, but that's fine. They are wonderful (which they are!). I know people are blown away on a regular basis regarding the amount of challenges my family has faced. I respect their admiration deeply. However, I never want their pity. So, ultimately I don't know what the best reply should have been. I very often use humor to diffuse a tricky situation or question. So that is what I did.

Getting back to "Miss Mama Mia."  She has been at a private school for children with autism for the past two years. I had hoped that maybe she would have made enough progress, so that she would be ready to enter kindergarten with her peers. That has not happened, although she has made considerable progress. Now the task is to keep her at this setting to monitor and support her continued progress, so that in the future, a less restrictive environment will be in her best interest.

I worry about absolutely everything. Will she become more communicative? Will she become interested in her peers? Will she be able to go to new places without extreme anxiety? These are all unknowns at this point. And just like with her brother with autism, I know that the most important thing is to NEVER give up hope. To expect great things, and great things will come.

Friday, March 8, 2013

I survived.

 I survived it. Vista break week, March 4th - 8th.

At the end of every single loooong break week, all I can think of is, where is my SHIRT? You know, the one that reads, "I survived a break week."

This week was no different. So here I am getting ready for bed (thank god) and all I want to do is grab that "pretend" T-shirt, and a glass of wine and decompress.

Here are some highlights of the week:

-Ethan basically decided clothing was optional approximately 50% of the week.

-Mia decided eating was optional 60 % of the week.

-There was only one "Ethan escape" and I returned with him without the assistance of 911.

-The IPads are both still intact despite a few head butts and drop kicks.

-There were only four major meltdowns. Two of which, were Momma's.

Tomorrow I head to King of Prussia Mall with a friend.  I think I've earned it.

Friday, March 1, 2013

Mia Grace

Five years old you turn today.
Your life has not been as we expected, I would say.
You may not be typical in many ways.
But, we celebrate your uniqueness, and count the days.
Until you can tell us more about how you feel.
We already know, that you are bright, beautiful, and real.
You have made such progress, and we are so proud.
To call you our daughter, our princess, aloud.
Five years old you turn today.
You are not as we expected, but SO much more, I say.

Wednesday, January 16, 2013

Pickles and beef jerky

Yes, I did just title a post, "Pickles and beef jerky." Gotcha didnt I? Because what in the world could follow with such a title?

My Big E does not have much need for toys. He has an Ipad he adores, and a few musical toys that play clasical music which he also loves. But, not much else really floats this kids boat. Some kids with autism just never really develop the desire, or ability to play with toys. That is my Big E.

FOOD is what gets my boys attention. We have had quite the rotation of food obsessions over the years. There was the year of "the frosted mini-wheat." I am pretty sure I kept the Giant Food Store, wondering why it was next to impossible for them to keep mini-wheats on their shelves that year. From Christmas that year,  I have this hysterical picture of E unwrapping a giant bag of mini-wheats that my mom bought him from Costco. His happiness over something as simple as shredded frosted wheat, is something I wish he could give us all.

We have graduated from sugary wheat covered squares. He wont touch the stuff now. Finally, too much of a good thing. But, dont worry he has a new food combo favorite. Yes, you guessed it, "pickles and beef jerky."

When he walks through the door after school, I am ready. I have either the jerky at standby, or a bowl of the pickles. It's not just any pickle mind you. He will only eat Mt. Olive Kosher Hamburger Dill Slices. I made the mistake of getting the bread and butter variety...once. No go, he spit them out and looked at me like I had lost my mind.

Then there is the jerky. Have you seen the price of beef jerky? I mean, there are like two or three strips of jerky, in a bag that averages around 5 or 6 bucks! He goes through that in one sitting. So, we ration the jerky. Its like his caviar. Every couple of days he gets to have his "caviar" of after school snacks.

Even though it drives me crazy, it gives ME so much joy, to bring such joy, to a boy who otherwise is pretty hard to please. Toys are optional, but food is a must!

I am sure by the end of this year we will have graduated from pickles and jerky, and will have yet another food fascination upon us. I cant help but wonder what 2014 will bring.....