A Tribute to Will, my Son's BFF

"Knowing that Isaac had a friend like him was everything to me. Isaac wasn't very social, but Will got him and that was magic."

Isaac and Will on a field trip

 We recently learned that a sweet boy from Isaac's class recently passed away and it shook me to the core.  He was a sophomore at Georgetown University and just 20 years old. When I met him, he was a picture perfect kid: kind, sincere, compassionate, funny and with a heart of gold.  Will was the BFF of my oldest son, Isaac who has Autism. 

Fifth Grade holiday party

Isaac met Will in the third grade when he transferred to Jacksonville Elementary school. Will quickly  became Isaac's friend and helped him acclimate. Knowing that Isaac had a friend like him was everything to me. Isaac wasn't very social, but Will got him and that was magic. Isaac needed a typical peer  to show him "how to boy" and Will did just that. Isaac loved his new class, and for the first time, he wanted a birthday party.  For the next three years, at each party, Will was by his side.                    

Fourth grade Halloween

Every time I was in the building, be it class events or field trips, I got to see how Isaac melded with his class and saw those two together. I enjoyed learning about the little boy who made my boy feel included. Will was like a 40-year-old in an 10-year-old body.  I always told him how much I appreciated him being in Isaac's life. I also told him I would bail him out of jail if he ever needed that, and he laughed that "you're-so-silly" laugh and then launched right into a really bad joke. He had a talent for that too. 

And because he loved my kid, nobody was going to mess with Our Will on my watch. When there was drama at school, I was on it. I was not going to let anything affect that  friendship. It was my duty as helicopter mom to keep it all going and to take out any potential issues. Outside of school,  Isaac loved having play dates with Will and loved playing laser tag. 

Fifth grade graduation

On a field trip to Camden Yards, my husband recalled a memory when he was the chaperone for Isaac and Will. They were walking past a homeless person when Will stopped and handed him a couple of dollars. Not exactly the type of thing you expect from an ordinary 10 year old. But he wasn't ordinary.  He was Super Will and he was going places. 

Will, Isaac and Sammy at his bowling party

After they graduated from Jacksonville, they both went on to Cockeysville Middle school. Although they were in different classes, Will stayed in touch with Isaac and volunteered for Best Buddies. It was there that Will taught Isaac to play board games and practice reciprocal conversations which often involved really bad dad jokes. Those were the days that Isaac looked forward to.  Will graduated CMS a year before Isaac and he went on to a private high school. 

Their last photo together 2017

Aside from social media, we lost touch with him. I followed Will's Mom on Facebook and I cheered them on from the social media sidelines. When Will graduated high school, I cheered for him from in front of my computer screen. When he went on to Georgetown, I was so proud and looked forward to the greatness that awaited him. 

In my world as a special needs mom, I wanted Isaac to be acknowledged. I wanted him to have friends and I wanted him to feel like his life had meaning. I was so afraid that he would go to this new school and feel alone. So many people have dismissed him, put limits on him and his potential. Many kids stayed away because they didn't know how to approach or stay once they said "hello".  But Will saw him, understood him and embraced him how he was. And he kept coming back anyway. I am grateful to him because Isaac got to experience unconditional acceptance from a friend. Which is so rare, especially for the age group and for our friends with autism. 

Will did so much more than be his friend.

Will looked out for Isaac,                                                                      

Will helped Isaac, 

Will included Isaac,

Will accepted Isaac,

Will taught Isaac,

Will encouraged Isaac,

Will helped his class peers understand him and translate for him,

Will gave him a nonjudgmental neuro- typical peer role model.

Will helped me too. He gave me hope. He showed me that the things I wanted for my son were attainable and he was the facilitator.  Because Will was so extraordinary, a part of me was okay knowing that although my own child would have life long struggles just to reach a basic existence, Will would go on to be the amazing human that he was destined to be and I looked forward to watching that unfold in the years to come. The gratitude I have for that boy and his amazing parents who taught him to be that way is bottomless. 

Even though it has been six years since we last physically saw him, if you ask Isaac today, who his best friend is, he'll answer "Will". With Isaac, if he remembers you, you are his people. Knowing Will and being graced by his space, will carry us as we continue to have gratitude for what he did for Isaac those years ago. He did more for us than he realized. And it just flowed from him organically.

Will's legacy will live within us. It will inspire us to do better, be better, and be more compassionate in his memory. 

Dean and Ann, thank you for creating this extraordinary human.

Will, thank you for the memories.

You'll always have a place in our hearts. 

With love, 

The mom of your BFF. 

For other posts about Will:

September 13, 2013 

April 17, 2013 

October 22, 2013 

Struggles of a special needs mom

This year has been tough but not for the reasons you'd think. 

You see, this is the year my #1 was supposed to graduate. Let's say, that if everything was in alignment, he didn't fail any classes or had any serious educational issues, he would indeed be graduating with the kids that he started his educational journey with. 

These are the kids, I invited to his birthday parties, chaperoned during school trips, said "hello" to at school and created a bridge and forged a relationship with for #1's sake.  Because he didn't know how to be friends with peers in a way they understood, he needed me as his translator. And boy, I was a great translator. All the kids gravitated to him and I felt like all was good in the world because he had friends. And it was great for me to be around all those fabulous kids who actually engaged, joked and shared their thoughts. 

But in middle school, we amended his IEP and changed his status from diploma to certificate bound, it meant that he could stay in school until he was 22. In many ways, it was a great thing; he was given the opportunity to stay in school and learn at a slower pace. However, when he was changed to non-diploma track, it lessened his interaction with his typical peers. He repeated seventh grade,  his typical friends, moved on to high school with out him, and then the pool of typical friends dried up. And each year, the great divide between them grew and now the chasm is so great that it seems impossible to breech.

In high school,  he moved to a self contained class, so the opportunities to see his typical peer friends was  reduced to hallway sightings. Only a few of the kids from elementary or middle school saw him and engaged. And after they graduate, the number of typical peers who know him will greatly reduce each subsequent year. 

Now I understand that the choice to extend his education was necessary. That is not in question. I have always been a crazy, momma bear, advocate for this kid since we had him. And all this time, I have focused on all the great things he can do and will do. I never compared him to what those typical peers were doing. I always accepted him and grew him as best as I could. I never grieved for the child I didn't have. 

Until now.

On Facebook, I see posts from the proud parents of his classmates touting accolades about their child passing the drivers test, excelling in sports, getting into college, posting pics of senior babies, and  senior class activities. 

It is in my face and I am grieving about the life I wish he could have had. I wish I could be there with that pack of parents I went through the ranks with and share at the same level. But, I can't.  My child will never drive. My child will never live independently. My child is not able to do the things his typical peers can do. My oldest will likely graduate alongside my youngest. And it hurts. 

It's awkward to face them. "You're kid's going to Brown? Awesome. You must be so proud". 

And then the grieving process begins again.  

I had to take a break from Facebook because it became too much to bear. 

I was asked by a friend if he is aware that his original group of typical peers are graduating. I really am not sure. I don't think it affects him at all. And that is good. 

However for me, it is a struggle. A pointless one, but it still hurts. 

The Secret

My husband and I went to our favorite fancy restaurant to celebrate our 22nd wedding anniversary. At some point, I went to the ladies room. While I was in the ladies room, I complimented a woman on her outfit.

She returned the compliment and asked me if I was at the restaurant for a special occasion. I replied, "Yes, it's our 22nd wedding anniversary." She said, "I have only been married three years. What is your secret?"

Secret?

The question threw me off guard. I thought about it for a minute and responded "three things".

"Number one: Never take for granted the person who chooses to love you.

Number two: Focus on the good things. It is too easy to focus on what they don't do; what you wish they could do better. The truth is, the more you focus on the bad, the faster you lose sight of the good things. Stay positive and remember number one."

I then said, "number three, really doesn't apply to married life but to life with children. When you have babies, you're only focused on the babies. When they are three, you feel that 13 is far away, so when your friends with older kids talk, you don't really listen because it doesn't apply to you. You need to listen to them. That decade will go faster than you want it to and faster than you're prepared for it to. Listen to their stories and take notes. They possess valuable information."

I reflected on how fast our babies grew up. They are now 16, 14, 12 and the twins are almost 10. It felt like the last decade flew by.

She gave me the "you got five kids?" look. Gave me another compliment, thanked me for the "valuable information", wished me a happy anniversary, then went on her way.

I'm glad I could give her the secret of a successful marriage in a three minute conversation. For a moment, I felt just like Buddha. "a judgement of man is not what happiness makes."

Diary of a music mom

Since fifth grade, both #1 and #2 have been playing instruments; #1, the saxophone and #2, the trombone. #1, Autism classic, plays the very same saxophone that I started on in fifth grade. I  teach him daily and we go once a week to our new sax teacher and they work on jazz. #2, the aspy is a lot more autonomous and he doesn't require my attention when he practices and gets by with his weekly skype lessons from grandpa and his private teacher.

Every year, our school district hosts a solo and ensemble festival. The kids have roughly eight weeks to choose a listed piece and then perform it with an accompaniment. Every year, I make the boys participate even though it means I need to spend more time with #1 to make sure he doesn't sound like a moose in the wild and more like a saxophone player.

It always turns out like this:
I choose the new piece and we trudge through it slowly and painfully.
I second guess my choice because I think it's too much, too hard, too intricate for him.
We play it again and again for two weeks and slowly it sounds less terrible.
I doubt myself again.
Week four, it begins to sound better and I feel validated in my choice.
By week six, he's improving but needs revisions and fine tuning.
Week seven he seems to be doing well and listening to instruction.
Week eight he regresses.
Game week, he's playing inconsistently and I'm just praying he plays it right.
Performance day=total crap shoot

It is such an emotional rollercoaster for me.
I make him practice every day, play him YouTube videos of other performances and yell at him repeatedly to play the notes on the page and play the music as written. Some days, he gets it and other days, he's just a hot mess. It's maddening, infuriating and extremely frustrating. And then I remember the one thing I always say about him, " the one thing that is 100% predictable about him, is that he is 100% unpredictable."

Last year, he played a piece that was a level of difficulty lower and he received an top score of Superior and moved on the state level where he received an excellent score. (slightly lover than Superior) So I thought, that he could do a higher level  and do just as well. The one thing I underestimated was the change in private teacher would affect his performance. Mr. Ted  played piano and spent time each lesson teaching them to play with the accompaniment. So when they walked into Solo ensemble, they were more than trained to do well. This year, we met the accompaniment the day before the performance and it was bad.

At our only rehearsal with the accompaniment, #2 struggled. but I recorded the piano part and then handed it over to his trombone teacher and they worked on it. #1 couldn't even get through the piece with the accompaniment. So I recorded it and when we got home, we practiced unsuccessfully for over an hour and then I gave up. I sat in the chair and lost it. I was sobbing uncontrollably. Although I knew that  It would be hard for ANYONE to only have one rehearsal with their accompaniment before a performance, I was beside myself. My child was going to fail. It was certain.

As tears were streaming down my face, I thought of all the time and energy I placed into coaching him through each note,  measure and phrase. I  felt that I was the only one who saw what he was capable of because he seldom showed it. I wanted him to be nothing short of amazing, to show all those people who prejudged him that he was talented, and there was more to him than a big kid who meandered around scripting to himself.  Those people didn't realize how far he has come. Those people didn't realize that three years ago he couldn't even read music and I had to write the notes in on all of his music. Those people didn't know that he has perfect pitch and will often figure out the most interesting part in band and play along until he's busted. Those people didn't realize that he has raw talent which could be amazing if nurtured properly. I wanted that performance and his grade to be the trophy. I wanted it.  As for him?  He was tired of playing the song and all the pressure I put on him.  Playing saxophone was just something he did because I made him.  Period.

That night, I replayed the rehearsal in my mind over and over again. I thought about all the strategies we could try to help him succeed. I noted all the observations, devised a strategy and then stressed dreamed the night away while the song played in my head.

I woke up, wrote down the strategy. As we drove to the school, I prepped him for the performance and reminded him to hold out his notes and follow the dynamics. (we wrote the note values on top of the notes and highlighted the dynamics. His music looked like a color coded scribble page) I spoke to the piano player and asked him to speed up to the tempo he practiced at home and told him to hold on for the ride and follow him the best he could.

We met the judge, settled in. He played his scales. And then he began. The first two lines were great. I thought, "Maybe, I was wrong. He's not going to tank. Maybe I should've of recorded it." And then he got to middle section and that's where it started to go wrong. He held notes too long and seemed to be looking around the room. He looked at me mid-way, got the evil mommy stare, and then he snapped back to it and ended the piece well. At some point, I facepalmed. NOOOOOO. We practiced this. He was crashing and burning. All this practice. All this time and energy. Oye vey.

In the end he got a score of II, excellent. The judge praised him and said nice things and offered suggestions for improvement.  #2 also walked away with a score of "II".  If they received a "I", a superior and made it to states, they would have had three more months to refine the piece before they performed it again.

But now It was over. They didn't make it to states and would never have to play those songs again. I took them out for breakfast and then ice cream. I told them that it is hard to only have one practice with the accompaniment and expect things to go well. I reminded them that they were playing a harder level and they did a good job. And then we talked about how we missed Mr. Ted and how well he prepped them last year.

After that day, I came to the conclusion that  playing music should be fun. As long as #2 enjoys playing, he will play whatever his teachers make him.  Trudging through a piece isn't #1's idea of fun, but playing jazz is. So, for now on, we're jazz people. We don't need trophies or grades. We're going to let the music he makes speak for itself. And I am going to try to reign back the stage mom. Maybe just a bit.

And now that it's over, I reflect back to the conversation we had on our way to the performance. He asked me what would happen if he got a "II" instead of "I". I told him if he got a "I" then he would qualify for states like last year and we would have a few more months to work on the piece. "If  I get a "II" will I still get ice cream?" I told him he would. "And I'll never have to play this piece again?" I nodded "yes" and we did our thing. After he got his score, he said, "Vocalise is now in my past. I will never play it again."

 And now I'm wondering, did he choose to not be his best or was it just serendipitous?

A letter to my fellow special needs moms

Dear fellow mom of a special needs child,

I want you to know that when I met you,  there was something about you that made me want to become friends with you. It wasn't the fact that your kid also had a disability, it was that I sensed that there was so much more to you that I wanted to learn about. Your kid sharing the same diagnosis as mine, wasn't a factor in my choice.

But it seems lately, that that is the only thing you want to talk about.

As you know, every single one of my five children have a developmental disability. It is a hard and draining journey and it makes life really difficult most of the time. When I get to leave the house, the goal is to spend time with people who make me laugh and refresh my spirit so when I go home, I can be a better person. I don't want to talk about my kids, I don't want to talk about therapies, or school problems, I just want to be me. I want to shelve the problems I experience every day and just take a break.

The problem is, all you focus on is how hard your life is. And you spend the entire time complaining about how hard it is for you. It's like you are stuck in replay and all I can do is sit there and nod my head, because I can do nothing. I wish you could see you.

You may not realize it, but it really drains me. I feel for you, but I cannot help you. And it's starting to affect me in a negative way.

There are so many things that I'd like to talk about. I've had a lifetime of experiences before becoming a mother. I went to school, I lived abroad, I was a martial art champion, I had several professions, and I traveled to places few have been. The topics I can talk about are vast and my interests are also. I know you have great experiences and stories too, but I never hear them because you are too hyper-focused on venting.

When I try to change the topic, all you do is go back to your kid and all the problems you have.
You are angry. I get it.
You are frustrated. I get that too.

I feel all you feel multiplied by five and you know what?
I'm not angry. I find the good in my days. I don't drag my friends into my shit. I don't fling shit and I don't kill other people's buzzes. My suffering is my own and it is unfair to those around me to perpetuate negativity.

But that's me.

I'm at the point that when you call, I grimace, because I know you are just one word away from spewing your latest frustration.

I like you. I respect you and all you have done for the community, but I can't continue to be the one you vent to. Just because I get what you're going through doesn't mean I want to hear about it all the time. Especially during the time I am supposed to be recharging.

Find a therapist.
Talk to god.
Yell at trees.
Do meditation.
Do something, please.

I really want you to find peace and happiness.

Love,
Shari

Zipping and Buttoning in the new dimension

 We just bought #1 jeans for the first time. At the age of 14, he just mastered how to zip and button pants. Yes, I am crying.

In the last few years, he has grown considerably. In just four years, he went from a very cute 10/12 to an adult extra large. His feet are a men's size 12. We have big people stock. 

I had the moment when I realized that he has outgrown most of his clothes, so I had to take him shopping. I let him select colors and types of clothes; hoodies, t-shirts, sweatpants, and then I selected a few pairs of jeans to try. He hasn't worn jeans since he was a toddler because once he had to zip and button them himself, he couldn't. He just didn't have the strength or dexterity in his hands to do it.

In the fitting room, I told him, "We're going to try on some jeans, just to see." He managed to button and zip each pair I handed him, ON HIS OWN. I was thrilled.  Once we found the right size, colors and cuts, we tired on outfits, and he liked his reflection. "I'm going to look cool, mom" he said as he paraded around the dressing room, busting into a few choice dance moves.

"Yes, you will, but you already are cool." I replied.

You see, my kids struggle with acquiring new skills. Many times it's with things that are so easy and menial to most people that we overlook it and seem surprised when someone else hasn't yet mastered that skill.

"He can't tie his shoes?" I shake my head, "No." And, you feel the judgement. "What is wrong with you?"

And no, I didn't cry at Walmart. But after sitting down and thinking about it, how far he has come, I got overwhelmed.

It seems like we're finally getting to a place where we can work on and master all those little skills.

So right now, I'm over the moon.  And tomorrow, we'll work on shoe tying.

An Autism sharing moment

Today, I was asked to participate on a panel at Towson University. The panel was designed to give the students in their autism studies classes a personal look at autism. These folks either already worked in education and were pursing a Masters degree or were training to work in special education.

These folks are the few, the brave, the "heart on the sleeve" teachers that are placing themselves in the valuable position of special education teacher. 

We were there to tell them about the thrills of autism ownership and give them advice on how to help/ connect with their students and their families. 

There were five of us on the panel with children of different ages and experiences. We were handpicked for various reasons and asked to share our stories. The similarities in our stories bind us as a community. 

Here's a few things we all have in common:

* We all noticed something was different, off, atypical of our children at an early age. Trust your gut.
*We all had to pay out of pocket to have our children tested. You can't get a diagnosis without testing. 
* We all had to speed learn about autism and become an expert overnight. 
* When we started out on the Autism path, we all believed and trusted that the schools would do what was best for our children. We learned we were wrong. 
* We learned that schools only do what is absolutely necessary. And even then, sometimes not. 
* We've had to fight for the necessary therapies, supports,  and placements for our children.
* We all feel a level of estrangement, misunderstanding and judgment from friends, colleagues, family, teachers and the population as a whole. 
* We've learned that our IEP chairs are sometimes good and sometimes really, really bad. 
 * We've learned that having an educator who sees and understands your child is worth more than gold. And if they're willing to fight with you for your child, you've hit the lottery. 
* We are always anticipating what could go wrong. And we are always waiting for the call. 
* We're worried now, but worried more about tomorrow and the next day, and the next. 
* We're worried how our children will survive as a part of society. 
* We're afraid our children will be left behind and nobody will notice. 
* We're afraid our children will be bullied.  
* We all carry a sadness that permeates our souls. And some of us feel very alone.
* We all have stories of bad experiences with educators. administration, and other school personnel.
* We are a tough bunch of mothers. 
* We have learned to rise above our predispositions and become the advocate our children need us to be.
*None of us have a solid self-care plan.
*We all look to the future with hope. 

Having one child with autism is hard. Having three, and the twins with IEPs  is a tough job.   I said at the panel, "it's like living with a tornado, a volcano and a hurricane while two crack butterflies are dancing around."

It's a onerous path.  You can't deny it. 
But every day is a choice to look for the good or focus on the bad.
I'll choose butterflies, silver linings and rainbows any day. 

It's all you can hope for.