The Emotional Cutter

Here is a picture of Destin (blondie) and Brody (brunette). They are 8 and 5 years old, a second grader and a kindergartener. Since you are reading this blog post, you know that Brody was diagnosed with autism when he was 2 years old. Now he's 5...those are the facts.

This picture above was taken at the St. Louis Zoo last summer by the hippo tank. Brody was getting ready to step down off the observation deck and he almost fell, it was very wet. Destin grabbed him so he wouldn't fall. Then I had to snap a pic...what a smile and what a proud big bro. We had a blast that day; we got there right when the zoo opened and we just hopped around like crazy rabbits...one of the best days I've ever had with my guys. We will come back to this picture tidbits in a sec...

Over the last 3 years or so, as we've spent time in the autism community, I've come across more and more news articles about mothers and fathers (and other family members) abusing, neglecting, even killing their special needs children, and in most cases these children are not "children" per se, they are over age 18. But with their disorder(s) they are considered a younger cognitive age, and come with all of the stressors of a younger child and then some...and they are adult in size.

These parents are doing these horrible acts for a number of reasons...they are overwhlemed, over-stressed, strapped financially with no other resources (or so they think/feel) and feel there is no other option but to make their children pay an ultimate price. The life of special needs parents can be very isolating. I understand that completely. It is. And these parents/caregivers are brought to the edge of
sanity.

One article, for example, was about a mother who shot her 24 year old autistic son, then turned the gun on herself. This is isolation, mential illness, depression, exhaustion, anger, fear, rage all rolled into one act of extreme violence. This mother felt she had no other option. It makes my chest sink.

I've read countless others that are disgusting...everything from not putting an autistic child in a car seat because the father commented. "What's the point?" to much, much worse. (True story, a father actually said this in a statement when confronted about the abuse.)

There are days, like yesterday, where I read these articles for what seems like hours. Brody will be watching Toy Story, eating his oreos, happy as a clam, or playing with Destin on the floor, and I'll be hunched over my laptop or ipad reading these "things" like a lunatic. And at the end of every article, Matt is sitting right there next to me. Sometimes, he'll come over and turn off the computer. And the article will disappear. Last night he spoke up:

"Cassie....stop with the emotional cutting..." He immediately wanted to me fess up about what was really making me read these articles.

"Well, Brody won't be 5 forever..."

"Cassie...he is 5 NOW. Stop. Reading. The freakin articles. You are driving yourself insane"

That is true love.

I don't know why I subject myself to these articles and stories about horrible abuse in the special needs community. I don't know why I constantly gravitate to articles about special needs "kids" age 18 and over who are neglected. Maybe it's to feel better about the job we are doing? Maybe it's to understand the stress of other parents? Maybe it's to prepare me for what's ahead?

The reality in our household is, just as the picure shows above, it's full of 2 happy little boys. That's it. That's all. And reading these horrible articles won't change Brody into a 24 year old toddler or Destin into a neglected child.

But, turning off the computer or deleting "Autism Speaks" from my newsfeed won't change the fact that there are millsions of special needs families who need help. I desperately want to do something...if only we had a bigger house, we could invite all of these families here, even just to show them they're not alone. We could order pizza, pour some wine and just...talk. And let the kids play.

So, in closing...Brody won't be 5 forever, but he is 5 now. And I need to get back to him and put away the articles...at least for a while.

I'm Running for Room Mom. Endorsements Welcomed.

I decided to take today off of work and go to Brody and Destin's Valentine's Day parties at school.
It was a hectic day...I had a zillon errands to run, I still had to get treats for the parties and of course, I wanted everything to be as sweet and cute as possible. I would be meeting Brody's fellow classmates in his gen ed Kindergarten class, not to mention the moms. I tried on about 4 different outfits.

To say I was nervous would be an understatement. I literally had to take deep breaths as I walked down the halls of the elementary school and into Brody's kindergarten class.

I arrived just as the party started, armed with Valentine candies and fruit snacks.

The room was buzzing. All of the kids were sitting in their kiddie chairs, making crafts, cards and jewlry for the big day. It was loud, chaotic, hot...

Brody was sitting with his headphones on (headphones drowned out loud noise and calm him during the day and while in class) and his para-professional was helping him with his crafts. I ran over to his side and kissed him excessively...he returned the smooches (of course). He was covered in icing from the cupcakes and was all a buzz with a sugar rush. We were laughing, stringing beads on pipe cleaners...it was great doing something "normal" with him like making crafts with classmates. He squeaked and made is typical Brody noises. I'm so used to his quirks so I don't even notice his vocal outburts or ticks (like tapping his chin, snapping his fingers, tapping his forehead). He struggled with beading pipe cleaners and holding a pencil, but he tried so hard, like he always does. He got thru one of the crafts but was soon distracted.

In the midst of the loves, crafts and hugs, I got a glance of two other moms who were seated nearby with their children. Now I'm not sure if it's just because I am overly protective of Brody or sensitive to his needs/experiences, or if I'm just an emotional and sensitive person overall, but I saw shock in their eyes. Actual sadness even.

It took my breath away.

I could feel a lump start to form in my throat, but shut it down right there. I didn't want to tear up at my son's party. This was not about him anyway. He was having a blast. But I couldn't shake these "looks..."

Moms can be strange creatures. I can say this because I am one. We really put pressure on each other and I have no idea why; it's a waste of energy. The lead room mom was really something. She was intense and did not acknowledge Brody's existence, nor mine whatsoever, even after I introduced us. She reminded me of "Regina George" in the movie "Mean Girls." But it was worse because she was a mother of another kindergartener. She also ignored the other autistic little boy in the class. It was uncomfortable and very awkward. That little boy's mom did not attend the party, but I wished she would have so we could have buddied up.

I didn't confront her or the other moms. I wanted to. Part of me wanted to start a dialogue with one of them and ask if they had any questions (I've done this in shopping malls and grocery stores when I noticed people are staring)...

One mom at our table actually stared at us, held a gaze for a few moments, then actually moved from her seat to another table in the room. She took her child with her. It was the first time I actually felt like we were being watched in close quarters. I tried to be empathic. Before Brody was diagnosed, well before Brody was born, I also was skiddish around children with special needs. So, I can understand. But that doesn't make it easier to deal with when you're confronted with it straight, no chaser.

As the party went on, the games started. And the first game, a version of hot potato with a teddy bear, was perfect for Brody. He handed off the bear when it was his turn and he seemed to get along with the other little ones.

When he was "out" of the game, one of the little girls said, "Uh Oh Brody's out! Better luck next time, dude!" It was adorable.

Lead room mom, who I started to affectionately call "Queen Bee", continued with the final two games, which frankly weren't age appropriate. None of the kids could actually "do" the games. But whatever...by that time I was concentrating more on getting to know the kids in the class, ignoring the not-so-nice moms and chatting with his para-professional, (who should run for Sainthood by the way).

The party ended with the realization that the treats and Brody's classmate addressed Valentines we brought for the party,  would not be passed out. Apparently, Brody was in speech therapy when Valentines were handed out among the classmates. And there was simply, according to Queen Bee, "not enough time." I explained that I would leave the treats for the class so they could enjoy them later. I was taking my baby home so I could love on him, more...

I was proud of myself for not freaking out or going "crazy mom" on these folks. I really held it together and focused on what mattered, Brody. He was having fun, laughing, smiling, eating treats. He was oblivious to my stress and anxiety about the situation. One of the other moms (one of them) did actually start a conversation with us and asked about Brody's headphones. I explained how they helped him and she was very, very sweet.

Once the clock read 1:45, the party was over. Exactly on time. As I packed up Brody's stuff and put on his coat, I couldn't help but feel relieved that we were headed home.

Brody and I walked, hand in hand, towards the school's exit. He was smiling ear to ear, jumping, laughing. He was so happy...what a love bug. I caught a glimpse of Queen Bee as we left. She ingored us.

I am determined to make this not-so-great experience into a positive. Our IEP Meeting with Brody's teachers is scheduled this week and I'm looking forward to this conversation.

Guess what position I am applying for in Brody's first grade class next year? Yep, that's right.
Room Mom. I think these kids need some Harley Davidson Valentines.