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.

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.

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.



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.....

Time flies

Cannot believe its been since April that I have posted anything. Time flies period, whether you are having fun or not. Not that I haven't been having any fun mind you. But, things have been busy. 

Summer was good. We joined our community pool, and guess what? Nothing terrible happened. Mia didn't try to swim naked (thank god). She also had no fear of the water, just like Big E. Nick took a swim class and completely mastered his fear of "the deep end". He was diving off the diving board within a few weeks of his last class!

The new school year has begun and the kids are all doing really well. Nick loves his second grade class. Ethan and Mia are still doing well at Vista. Miss Mia is exploring Vista like never before. She is loving their indoor pool and is ASKING to go for walks around the campus! This is the girl that had near panic attacks last year at the thought of venturing outside her classroom. Big E is back with his longtime favorite teacher and seems quite happy about it. 

I am ready for what this new school year will bring. 

I think.

Left out; the challenge of parenting your special needs child, while also meeting the needs of your typical children

We are about to embark on baseball season for my soon to be 7 year old typical son. It is an exciting time of year. The weather is getting warmer. I can already hear the crack of baseballs being hit in our neighborhood ball field, as players practice for the start of the season.

Last year was a great first T-ball experience for my son. He had a great coach, and really sweet teammates with helpful parents. Everything went very well, except for one thing. I was unable to attend all of the games, and made it to only almost half of them. Was I working? Was I sick? Nope and nope. I was home with my two children who have autism. I was the "designated" parent who needed to care for my children who are unable to sit in the bleachers and watch their brother.

It really killed me. I so wanted to always be there cheering for my son and his team. I always envisioned being the kind of parent who tried to never miss a thing. In reality, I miss quite a bit. If it were not for my parents who live close by, I might not have even made it to those games. We actually trade off going to the games, my parents and I, alternating who goes to which game, and who stays home with E and M.

Recently, I was at a birthday party with my typical son. I was talking with a few moms when one parent introduced me to another parent I actually knew, as our son's were on the same team last year. I said so to her, to which she replied, "Oh yes, I remember you now, but you were not at many games last year." My heart sank, if only she knew why.

I didn't have the courage to speak up. I really wanted to shout, "You don't know how lucky you are!" "Don't you dare judge me, you've no idea what sacrifices I make." I wish I would have said something now. People need to be aware of our situation. I certainly don't want pity, but a bit of understanding would be quite helpful. I place enough guilt on myself without allowing others to heep on more. Next time, I will be ready with a thoughtful response. Who knows if they will actually have any understanding, but it is my duty to myself and my children, to at least try.

I am excited for this year's season to get underway. The hubby is coaching this year, and I can't wait to watch father and son out there working together. I just can't help but wish somehow it could be an entire family affair. Maybe one day it can be. If not, I am determined to keep on enjoying as much of it as I can.

Smooth sailing

Can't remember the last time I would characterize our life as easygoing. But, right now, when I am asked how things are going, I can (sincerely) reply, "pretty darn good."

Big E and little M are holding their own. E just had yet another clear scan, which means he is STILL CANCER FREE. He is also relatively relaxed and happy, with really low problem behaviors. We made it through a break week with only one "escape" and I located him quickly. Thank god for good neighbors.

Little M continues to slowly improve her communication skills, and recently has become far more social. As I type this, she is peppering me with requests...lollipop? cracker? outside? Watching her chase and play hide and seek with her older brother is my favorite thing to do now. There was a time that I questioned her ability to ever engage with her siblings.

Of course there still are many, and I mean MANY challenges that we face daily. Sleep, what is that? Stress? Oh yeah got lots of that. Love? well that's what sustains us. We genuinely love our unique family.

So I think I will get off this computer and go enjoy my beautiful,unique,family. Why don't you do the same.

Lisa