It Won't Be Like This For Long

My dear, sweet, beautiful, smart and wonderful friend Shannon has blessed us all with a guest blog. I love her like a sister, probably more because my sisters and I fight like Palestinians and Jews. She is the bravest and strongest woman I know. There are not enough elegant words I could use to describe her, but take my word on it. She is amazing. 

So is her family. Her husband Rob is a fantastic example for what a husband and father should be, plus he's country and gets along grandly with Hubby. Her teenager C is the most kind, compassionate, respectful, and beautiful 15-year-old I have ever met. Little Bug is in love with her (we all are, she's amazing!).

And then there is my precious Ava. She loves me. I know it. I love her. Okay, she tolerates me, but I still love her. She is 3, but dwarfs Little Bug in height. The whole family dwarfs my family in height. Little Bug normally doesn't like younger kids but she thinks Ava is older than her (due to the height) and tells me all the time about the conversations she and Ava has when she calls her on the phone. It's a real phone, just a pretend conversation. 

Ava is just as much my friend as Shannon. She is a beautiful and wonderful child. Read on for my best friend to tell you why.

When I was asked to write this I was kind of anxious about it.

Not going to lie, this is pretty hard stuff and I get funky writing (talking) about it.

Here is our story. Our story about Autism.

Autism is a developmental disorder that appears in the first 3 years of life, and affects the brain's normal development of social and communication skills.

Autism is different for every single child. Some kids have no communication, like mine...some have sensory issues with taste, smell, touch, also like mine...and some have a hard time with emotion/social interaction. Some will sit in a corner and possibly just stare at a spot on the wall. Some may be completely "typical" and you may not notice. Every single child is different. 

Ava was 12 months old and had no verbal communication. I knew immediately that was wrong. She also loved to bang her head on the couch, by flinging herself back hard (enter Sensory seeking). She had a very hard time with strangers. Actually, anyone who wasn't me, my teenager, or her daddy. 

She was a happy girl, up until around 12 months...

 

Most people didn't know anything was different. I did. My closest friends did. A couple of strangers did. 

The scariest feeling in the world is when you know something is wrong...and you can't fix it. There is no pill, or cure...there is just wondering, and dread. My heart ached for her...not from embarrassment or shame, but from sadness that she was always going to have a little bit extra to do...a little more for her. Tasks that most parents take for granted...putting shapes in a sorter, chatting, learning quickly. 

The worst part for me was not hearing her say "Mama." Can you imagine? I mean just that little word, that sweet word...I didn't hear it until she was 3. [Of course it was amazing when I did, and she could sign "Mama" but it wasn't the same.]

We had her evaluated, then sent on to a Specialist. They said to wait and see. Maybe she was just delayed. I knew. I started sign language right then. If she couldn't talk, then by God, we would figure out how to sign. She caught right on. My heart did little flips when she started...we could chat. Well, we could learn to chat. 

She was anxious with new people...and transitions...but we could work on it. She didn't meet the classic signs, she had great eye contact and is so very affectionate. She has a great emotional response, so that is not a worry. 

Fast forward, we started therapies...Speech and Occupational. 

Moved cross country with the Army....and met the most wonderful Speech Language Pathologist in the world. She made me feel like we were doing the right stuff. We tried hard, we did so much for her...and someone recognized it. {insert tears} Her new Specialist gave us a diagnosis of Autism, mildly, but Autism. 

I struggled with hearing it. My heart broke. Not for me, just for her. It sucks ass some days. Some days are so hard. *SO* hard.

 

When you have a little one with Autism... *everything* is harder. You need diapers? Got to make a quick stop at the grocery store? Not with some kiddos. Luckily mine is pretty mild. She rolls with different. Some kids can't. Just a little wayside stop after school can make an autistic child lose their mind. I mean, really bother them. These kids don't understand when something is off routine. Going to see a show? Fireworks? Clapping? Headed to a Tupperware party? Nope, too many people, too much laughter, too much stress for both of us. 

 

My little Toe Walker. It is very common in Autism, speech delays, and sensory kids. She likes the pressure so it calms her. 

Part of the reason I struggled with this diagnosis...

My little one is fine with stops...she just has trouble with sensory issues. Touching stuff, licking stuff, working her hands...crying if it is too loud outside...all these little things add up to a big part of who she is. She may line up blocks, or cars...she may rock a bit from toe to toe...and she may be a toe walker (which people are fascinated with) but she is a beautiful, loving, caring girl. She is smart, she is learning every day.

My sweet girl. 3 now, and doing so well...with early intervention!!

You know those kids who are "acting a fool" in the store...or that just can't sit still? The next time you think (or say) that they are too big to be acting like that or that they need a spanking...please take a minute to think. That child may be Autistic. That child might have a special need that is keeping them from acting "typical". Don't judge. That makes people with kids that have differences even more anxious. You have no idea the struggles we face just to get to the damn store. Just to run in for milk. Please, don't judge. 

Just recently I got some great advice from a couple of friends. It was Ava's first day of special education preschool. {She goes for 3 hours a day, and has ST & OT plus regular school activities. There are 3 kids in there. The social aspect is amazing, and the things that she is doing now...I just can't tell you how much early intervention helps.} Anyway, back to my story. I knew she was going to have a hard first day. Having never been left anywhere...it was coming. I walked her in, left her, and heard her crying so hard. She cried and cried. She was devastated. That day was horrible. I got stuck in the PTA room, and had to hear her when she walked down with her teacher to breakfast. I had to *hear* my baby sobbing uncontrollably. 

I was a mess. I called my husband, my Mom, and a couple of friends. Tiffany, who is amazing....told me that it was okay to cry, really...and that I could be sad...but that this was a big deal and Ava needed this. It would get better every single day, and to step back and realize how much she would grow. {Ahh, insert more tears} I needed to hear that. I picked her up, crying...after school. I braced myself for this happening every day...and something amazing happened. 

The next day she didn't cry. She stomped in mad, and flung herself on the rug...but didn't cry. She was mad. Pissed...but no tears. Then I went to get her and I heard her laughter. She was HAPPY. Day 3 was even better, she went in willingly and met me at the door with smiles. She is okay. She is learning, and growing. She is painting, sounding out letters, doing more signs...she is okay. 

I could breathe again. My girl. My little baby girl was okay. She is excelling. 

{psst: little secret....on Friday she is getting the Student of the Month award for the first month of school} 

Autism is not a death sentence. It is hard, but not something you can't overcome. There are some days that I sob, I worry, I mope....thinking of how hard she will always have it...and how will she be an adult...with kids...or if that will even happen. Then I look at her...and see her sweet face, smiling and her little hands signing...and I don't care. I just know I am a better Mama for having this mountain to climb. She makes me better. I wouldn't change it for the world. ♥

Would You Believe It?

Today, I have the honor of featuring another guest blogger! I am super excited. My friend Alison, whom I met through a mommy group, has been through a lot in the past year. She has been so candid and honest about her experience that I asked her if she could write about it as a guest blogger. Not only is she a wonderful mother, but she is also an incredible example of perseverance and faith.

Not only is she sharing a bit about her music, she's sharing her faith (Judaism) and how it helped her through the terrible loss of her sister. I hope you all enjoy.

In late May 2011, on a women's spiritual retreat I was encouraged to sing my song, “Adonai Tzuri V’Goali” As the music flowed, the group began to sing along and get excited. One of my fellow musicians, Robbi Sherwin, from the group Sababa, was recording it on her iPhone. After we were done, she sent it to Scott Leader (also from Sababa), whose response was "Who sang that and why isn't it recorded yet?"

Scott, Robbi, Larry Bach (head rabbi and incredible musician at Temple Mount Sinai) and I recorded my “baby” over the next two weeks and entered it in the New Voices young songwriter competition sponsored by NewCAJE. Imagine my surprise when an email arrived saying “YOU WON!”

Not only had it won but it was now included on a CD with nine other new up-and-coming talents. The email also included an invitation to perform in-person at the NewCAJE conference in North Carolina in August, 2011.

At the conference, after a performance of a new art form made up of live music and improvisational story-telling, the six performers decided to jump into unknown waters and we founded an artists' collective called NuRootz. I discovered my inner musician and began writing more songs on the plane home from the conference; enough for an album!

With new-found confidence and excitement, I began planning an album and a brand-new career. That's when tragedy struck my family. My sister, Lauren, committed suicide.

Lauren struggled with mental illness for years but I didn't know how difficult her struggle was. Laying there in the hospital, on life support, my parents and I struggled to sing Debbie Friedman’s "Mi Shebeirach." I sang her my song - the one that seemed to wake everyone up at the conference - praying that it would do the same for Lauren.

It wasn’t to be. After five days, we learned that she would never wake again and we decided to let her rest. She’s buried in Rhode Island among our family she loved so much.

Ever since then, as I've been putting the pieces of my life back together, I have found that music is helping me heal in so many ways. Healing starts when I write it down. It continues as I sing it to someone, and the greatest gift is when even one person says, "Your words helped me heal, too."

For a year, I’ve been fumbling through the grief and pain and sadness that her loss shook loose.  I’ve been following the traditional Jewish path of mourning, a week of shiva followed by a month of saying the Mourner’s prayer, followed by a year of less-intense mourning.  After 11 months, my sister’s tombstone was unveiled (in early August 2012) and on September 8, I’ll observe the first yarhzeit, or yearly commemoration of her death.  This involves lighting a special candle that will burn for 24 hours in her memory and going to synagogue to say the Mourner’s prayer.  After that, I’m only obligated to say the prayer at designated times throughout the year, on festivals and yearly on her yahrzeit for the rest of my life.

What I find most troubling are all the questions left behind for those of us still alive – why?  Couldn’t we have done more?  Hadn’t we done enough?  Why wasn’t I a better sister?  More intuitive?  But those are questions that lead down a dark path, and I’ve decided to leave them alone for a while.  Maybe I’ll be strong enough to face them someday, but that day isn’t today.

So now I have a CD.  The music I recorded has so much of my sister’s life embedded within, so much of her spirit and warmth, I had to name the album for her.  She is our Dragonfly – in Hebrew, Shapirit.  Every time I see one, it brings me peace.  I hope my music can bring you peace as well.

Love,

Alison

Funky Chicken

I tend to refer to my dear friend Nic when it comes to all things gay. I've known him since middle school and we've had some grand adventures. We would ride around for hours in his Jeep Cherokee and do all sorts of silliness. We even protested the choosing of hot pink as our junior class color by forming Junior's Against Hot Pink (JAHP). It was just us two, but we made the yearbook bitches. I always knew he was gay (though he didn't tell me until later) and it never bothered me. Even being a regular (forced) church-goer, it just didn't seem wrong to me. He is who he is and he can love who he loves and that's all that matters.

Nic also served in the Air Force (before I did) and while I was in basic, he sent me the funniest letters telling me to keep my head up and where to sneak candy from. He sent me pics of him acting a fool at his job (photography) and told me he was proud of me. I once asked him how he felt about "don't ask, don't tell" and he replied with something along the lines of "If the Air Force can't tell I'm gay then that's their problem!" He served his country honorably, probably more than a whole lotta straight folks.

So it should come as no surprise that in the midst of all these people condemning Chick-Fil-A for their CEO's personal beliefs, I would defer to Nic. I have my own opinion on it, of course.

I think a man who runs a privately owned company can donate to whomever he pleases and praise whatever god he chooses and think marriage is between a man and a woman all he wants. That's what the 1st Amendment is for. It doesn't only apply to liberals. I don't have to agree with him (and I don't), but I don't think mayors of any city have the right to say that a business that will employ it's residents can't operate there. In this economy, you take jobs where you can get 'em. Chick-Fil-A employs gay people, they serve them food, and they have NEVER been accused of discriminating against them as a company. You don't want to eat there? Fine. But by threatening to pull your business until they change their beliefs is...what did the ACLU call it? Oh yeah. Viewpoint discrimination.

But I digress. I asked Nic to write a guest blog about where he stands on this issue. He was more than happy to oblige:

You know that old saying “The way to a man’s heart is through his stomach?” This phrase is, without a doubt, completely and utterly true for me. A tasty and delicious meal can put me in the happiest of moods, and a crappy or bland meal can leave me winning the day’s official Sour Puss award. People could tell me the worst things about certain types of food, but I would still eat it. I would just laugh in their face while I stuffed my mouth with a KFC Double Down chicken “sandwich”. If it’s good, it’s good.

Why do I open with this pearl of wisdom about my love of food? Because as a gay man, I am supposed to hate Chik-Fil-A. With every glitter-covered fiber of my being, I am supposed to think that this is the restaurant that the devil frequents when he needs a quick bite, or when it’s 3AM and he is jonesing for something tasty to soak up all that evil alcohol he’s been consuming. But what I’ve been told, really, is that I am supposed to completely forget every time I’ve licked the inside of a French fry container because the lingering taste from the consumed fries taunts me from the inside of the package. I am supposed to forget every time I’ve stuffed my face with more than enough food, stopping to think “If I have another bite, I could explode” but then realize that it’s worth it and finish the rest of the sandwich. More so, I am supposed to forget the wonderfully cheerful people that have always helped me, and while they are paid to smile and be friendly and not look like they’re judging me for my large order, I know that a small part of them is really nice and friendly and not judging. Yes, I am supposed to forget all of this because the man that signs his name to all the Chik-Fil-A checks decided that it would be a good idea to give money to the Anti-Gay Campaigns.

To begin with, I would just like to state that this man is an idiot. I mean, why did he think it would be a good idea to make these contributions from the corporate account? He could have easily made them from his own account. While it would still be partially associated with him, as he is the President of the company, it wouldn’t have been as big of a deal (like it is now). This route would have saved the company a whole lot of bad press, and all of the anger would have been pushed directly to him. I mean, he seemed to be very pleased with the outcome of everything, since he was happy to accept the blame of the situation (made apparent by his “guilty as charged” remark). Though, I must say...way to be so proud of yourself while still being a complete douche. Kudos to you Mr. Cathy.

I haven’t been to a Chik-Fil-A in years. I think the last time was when I was in Ohio, and I think I went there to console myself and make me feel good about being in Ohio. Lord knows I needed something. I remember it being so tasty and good and a mini-escape for me. But that was forever ago. The closest location to where I am is 48 miles away in Fairfield, which is worse than Ohio (and yes, that is possible!) So, that’s the reason that I haven’t been in a long time. But if there was one closer, I would probably go there. And I know that I would have a shit-load of people screaming at me, “What are you doing? They don’t support gay marriage!” I understand that there needs to be solidarity in boycotting things, and that the power of the customer’s dollar is incredibly important. I understand this, and I know that my eating there would be horrible. But I sincerely and honestly believe that my stomach is more powerful than anything. I don’t really get into politics, but I do get into food. So now you know.

Now, aside from this company having some yummy food and completely hating gays, what else do you know about them? Probably nothing, because what’s the point of knowing anything else besides what is in the media and what is important? Do you know what the WinShape Foundation is? It’s the foundation that was created over 20 years ago by the original owners of Chik-Fil-A, Truett and Jeannette Cathy. The WinShape Foundation does a lot of stuff:

·       WinShape Homes - currently operates 11 foster care homes in Georgia, Tennessee and Alabama.

·       WinShape College Program - at Berry College in Rome, Georgia, this is a co-op program offering joint four-year scholarship funding to incoming freshmen of up to $32,000.

·       WinShape Camps - offers boys and girls summer programs at the college, which will be attended by more than 15,000 campers in 2012.

·       WinShape Retreat - offers a sequestered setting for marriage support and counseling and other gatherings on the Mountain Campus of Berry College.

·       WinShape Wilderness - an outdoor adventure program that facilitates experiential learning for all audiences in ropes course settings as well as canoeing, rock climbing and backpacking venues. Helps people use adventure to equip people to experience real change, not just in a team setting, but also through personal transformation.

·       WinShape International - mobilize leaders to transform young people and communities around the world.

Aside from all of this, they also provide $1,000 college scholarships to restaurant employees, with over $30 million dollars in total. But, aside from all of this, I’m guessing you still think that they’re completely horrible no matter what, right? Just because someone doesn’t agree with you about something, doesn’t mean that they’re completely wrong or evil or bad. It just means that you don’t agree.

Do you know how people are “fighting back” against this gay-hating corporation? They’re not going to allow them to build new locations. Seriously, the mayors of several towns throughout the US have decided that since they don’t love their gays, then they don’t want them around. Uhm...am I the only one to think this is a bit crazy? I mean, sure...it’s pretty bad-ass that some mayor is like, “Hey...gays are awesome. You don’t like them, then you can just get the hell out of here!” I think that’s pretty neat, but I also know that it’s pretty illegal. Or at the very least, it should be. Here’s why. Do you know of the Catholic church or the Mormon church or pretty much several other churches who happen to think that being gay is an abomination and that they are going to hell. What happens when one of these churches decides to build a new location, or a community center, or anything else that is church related? Nothing happens except that they get to build it. But why is that? I mean, they too hate the gays, don’t they? So why aren’t they being bullied as well? 

Perhaps the mayors of these towns should institute a new department of City Hall, called the Business Owners for Gay Love (or BAGL). Every time an individual was interested in opening a new business, they would have to come before BAGL employees and provide several references to their connection with the gay community and how much they love them. Photographs, letters of recommendations, and any other items are accepted. Yes, I’m being a complete smart ass about that, though if it gets created I am totally going to shit myself. Cause that would be so ridiculously awesome.

I think this entire thing has gotten out of hand, and continues to overwhelm the news every day. Many important stories are being overshadowed or pushed to page two because Chik-Fil-A is such a big thing right now. How about you report the story, as was done forever ago, and then let that be it. Having articles that state “Chik-Fil-A Still Hates Gays” does nothing. If, by the miracle of whatever entity you believe in, they perhaps change their mind, then you should report that. Otherwise, let the news be filled with things that are new, and not just a recap of what’s been happening and reported on for 6 months.

Here are my final remarks on this: (1) Chik-Fil-A is a restaurant that makes delicious food, and as such, should be judged on their food and nothing more; (2) the President of Chik-Fil-A is a douche, though with a name like Mr. Cathy, I would probably be as well; (3) while Chik-Fil-A has made a contribution to an anti-gay campaign (which is oh-so-wrong in the current times) they’ve also made some considerable achievements in other areas of philanthropy; (4) the news needs to stop reporting on this, as the story is completely old and over with, and we’ve already decided which side of the fence we stand on with this; (5) if I could, I would be eating a gallon of Chik-Fil-A fries right now, because I’m a Fat Bottomed Boy and my stomach is more important than politics. 


Nic (who is awesome) currently resides in the City by the Bay and will remain my go-to-gay for as long as I live. One day he will take my daughter out and tell her all the awful things her mommy did when she was younger, but she'll be better and wiser (hopefully kinder) for it.