A Letter to the parent of the child that beat mine up

 Dear Parent of the child that beat mine, 

I want to tell you how your child's actions have affected my family. For some reason, whatever it was, your child decided to incite a group of 10-15 children, middle and high schoolers, to go after my 111 pound, 17 year old boy with autism. Your child decided to bash my child's head in with a razor scooter multiple times. This vicious attack caused multiple head wounds and now my child has dozens of stitches and staples in his head to hold his scalp together.

I don't know if you've ever experienced seeing your child covered in blood, but I can assure you that it is not something that you ever want to see. All I can visualize are those kids in their hoodies and their ski masks standing over him beating him, searching his pockets and laughing while he laid on the ground bleeding. 

Your child's actions have changed the way we feel in our community, they have stripped my child of his ability to be autonomous in our neighborhood because now he doesn't feel safe. Nor do we feel safe letting him go out in the community on his own. It also triggered PTSD in my older autistic son who was assaulted on the same playground two years ago.

I don't know you. I don't know the struggles you've had, or the trauma that you haven't processed that you've passed down to you children, but this is how it's manifesting. 

Your child did this. 

When children are teenagers, it is easy to feel disconnected, easy to just grant them independence because it's easy. But your child has learned that they can take their dis-regulated self into the community and harm others.

For both of us, this is a call to action. For you, to come to terms with your life and your trauma and to guide your children to learn how to behave respectfully in a community. For me, your child has shown me that this neighborhood is not safe anymore and I need to leave it to avoid children like yours. I never wanted to feel that way. I never wanted to have anger toward another child, but I do now. I wish I could take you and your child and beat the crap out both of you.  But that wouldn't solve anything and I wouldn't feel better about it. 

The only thing I can hope for is that your child receives the support, therapy, and guidance to become a productive adult in society. I hope your child develops a sense of sympathy and ownership for all the damage he's done. I hope that he can come back from this and see that this was the moment that he learned he had to turn his life around. 

I hope that for you, too.

Your child has provided my child with a whole treasure trove of trauma that he will either get therapy for or it will stew in his head for the rest of his life. When you get beat, bullied, or berated, it stays with you forever. The bully never remembers and I need your child to remember. I need your child to remember that he chose to afflict harm on to another human being. He needs to know what a horrible thing that was and he needs to be held accountable. He also needs to tell the police the names of the other children that were involved, as everyone who is involved in beating my child deserves to be held accountable. My child deserves Justice.

When I take him back to the doctor next week to remove the stitches and staples from his head, the same place he arrived via ambulance, covered in his own blood, his head completely wrapped in blood-soaked gauze and a precautionary neck brace to keep his head stationary, we will be thinking of you and dreaming of justice for this vile act. 

I hope you ground that child like never before. I hope you take that child's phone away and strip that child of everything that defines them. I hope you see this as a failing, and work hard to try to rectify that in your family's world. I hope you print out a picture of him, blood-soaked on a stretcher and put it on the bathroom mirror so everyday he has to look at it and see what he did and know that it will have a lasting impact on our family. The trauma doesn't go away once the stiches come out. The scars become part of us, a visual trail of trauma inflicted. My son will have those forever. 

I look forward to our day in court and that your child is punished appropriately.

When I see you in court, you will be met with compassion, only because I understand how difficult teenagers are to raise and would feel horrible being in your shoes. 

Please introduce yourself and apologize. We can start there. 

 

See you in court,

Shari

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. 

Coming out of hiding

Jill and I at the reunion

I was attending my high school reunion and a former classmate approached me. "Why aren't you writing the blog anymore? I want you to know how much you helped me when I needed it most. You need to start it again."

She actually liked the blog long before she realized I was the one writing it.

I explained to her, that sometimes life gets in the way.

Shortly after my last post,  I took a job as a personal assistant for a CEO. It was demanding and they became my sixth and most demanding child. The money was good, but the stress was greater. When your kids  beg you to quit because they miss spending time with you, well, that's the signal things need to change. So, I quit after my third year.

Three years ago, #1 started middle school and  two years ago, #2 entered middle school.
That journey is worthy of a post all it's own.

Add school, sports, scouts, music, gardening and other activities to the mix, and life became an overwhelmed fury; constantly running from place to place with my head barely attached.

 Any writer feels humbled when someone appreciates their story. Sometimes all  that is needed to get back on track is a little nudge and some encouragement. So, thank you Jill, for taking the time to tell me that what I share matters.

And with that, the blog returns.
Stay tuned....

I'M NOT DOING IT!

When #1 got off the bus, he was agitated. Usually he does the same thing everyday; walk in the house, walk right to the family room to see what is going on, check out the kitchen for snacks on display, and then take off his shoes and backpack. While he does his rounds I ask him how his day went and he always replies "great", before he runs upstairs to get the iPad. 

Today during his rounds, he said to me, "I'm not performing with Mrs. Allen's class tomorrow. I'm not doing it."  And then he ran off. Well, ok then.

Volunteer appreciation day was scheduled for the next day at school and his special education teacher asked him to perform a song with the other kids. He has a great voice and can bust a serious move, so it seemed like a good idea. That was until I heard him, "MOM, I'M NOT DOING IT!"

I wondered what could be the issue. Was it because he was fully mainstreamed and didn't go into her class anymore? Was it that he didn't like the song? That's why he won't sing in chorus. I told him I wanted to talk to him. I placed my hands on his head and turned his head so he'd look at me. I asked him, "Why don't you want to perform with Mrs. Allen's class? I'll be there."  

He looked at me and told me that if he performed the song, then he would miss a video that his mainstream class would be watching at that time. And apparently, that bothered him immensely

Wow. He just TOLD me what he was upset about. I didn't have to play the guessing game. I didn't have to ask a million questions and I didn't have to send emails to the teachers for insight on the problem. He simply told me. Wow, wow, freaking wow.

We have certainly come a long way. Just him being able to voice that feeling is a million miles from where he used to be. It wasn't long ago that he would get sullen and forlorn about such a trauma because the world would certainly end. And now, at 11 he is finding his words to express his feelings. 

And maybe, he has also learned that when he uses his words, we can help him. 

I told him, "let's come up with a plan. I know you want to watch that movie and Mrs. Allen and I really want you to sing, so how about we arrange so you can watch the movie after so you don't miss it?"

"Ok, Mom. I'll sing in the concert." he said as he ran off. 

Crisis averted for now. 

World Autism Awareness Month: A Time To Focus On Our Similarities.

Tomorrow, April 2, is World Autism Awareness day. I thought about all the things I could say about awareness and then I realized that the people who read this blog know all this stuff. With the latest release from the CDC about the number of children diagnosed with Autism now at 1:68, there will be a day that everyone will know or be related to someone with Autism. And unfortunately,  It is only when something affects everyone is when things will change.

I decided to re-share excerpts from my post: We're More alike than you think. The post was inspired by Willman Stillman and my self-observations. Everyday I look at my children and realize I have more Autistic qualities that I realized. I have also realized that it not necessarily a bad thing. Maybe melting and throwing myself on the ground if I can't find my keys may be over-doing it a bit, but many things are really a core part of me; like my ability to memorize information. It comes in handy on Black Friday for sure.

You asked me a question. Here's your answer.

When people meet me and learn that I have three children with Autism, they look dumbfounded. 
I really think it throws them into a confused daze, because many times, they look at me and ask, "How could that be so?" And, "What causes Autism?" Like somehow through ownership, I know why my three boys have different manifestations of Autism. 

The answer is, I don't. My guess is as good as anyone else's. 

I do have my hypothesis, though. 

I believe we all have certain characteristics that are passed down through genetic lines, like hair or eye color. But there are also less tangible characteristics that jump on the band wagon. We can all look at something in our children, ie: perfect pitch, introversion, ability in sports, science, math, music, quirkiness or some other abilities we possess and link it to our genetic line.  When we choose to reproduce, our offspring inherit whatever is mixed among the DNA. We have no control over it. 

With that said, most of us have heard from someone in our families: "Uncle Johnny was always a little off", or "Uncle Pete didn't talk until he was five", or "when I was little, I made up a language no one understood but me," or "I used to memorize books of facts at tedium because it interested me. And my favorite:  "Ben was always anti-social and always said inappropriate things at family dinners." This means that in addition to our inheritable physical traits, we may also possess the genetics that can allow us or our off-spring to behave like those "off" relatives. 

We all know that in the "good ole days" people had disabilities and developmental delays. However, the prevalence was no where near the level it is now. The diets, air quality and medical precautions were far different than they are today.

Now, take the genetic factors and add in the stressors from the environment. Then, add in the low-level, unmeasured contamination from our food, fertilizers, and food packaging. There are a myriad of affects that we can endure from consuming foods that are processed heavily, packaged with potentially dangerous materials, and lack any nutritional value. Our bodies become a petri-dish begging to mutate. This imbalance can exacerbate certain tendencies, heighten sensitivities and in some cases, make us just plain sick. Our DNA, somehow becomes affected and even a marginal shift in the code can affect us. Autism is in many ways a natural amplifier. It pushes sensitivities, thoughts, obsessions, feeling and obsessions to a higher level. 

However, being able to determine if our DNA is affected is almost close to impossible because the affects are varied and subtle.  No one can pinpoint any one cause and Autism remains to be an enigma. 

I remember a conversation I had with our new pediatrician when we moved to Maryland. I told him that #1 stopped speaking and turned off shortly after he received the MMR, (Measles, Mumps, and Rubella shot). He was quick to tell me that the one study published on this topic was invalidated. I didn't know about the study, yet I didn't think that it was so cut and dry. I explained, "You know how some people have adverse reactions to certain medicines, drugs, food or the environment? Well, it means that every immune system is unique and different than any other. That is why there are trials with medicine and why some people can't have penicillin. I am saying that HIS immune system, perhaps, had an adverse reaction to the MMR. Especially since there was a noticeable change. Did he have a fever? No. Was he sick? No. But something inside that sweet little 18 month old child shut off that week and I know it wasn't the crackers that caused it. Something caused it. We put a foreign body into his system and he reacted. And maybe, his system wasn't able to handle it."

So let me clarify, am I blaming the shot? No. I am saying that the maturity of an immune system is hard to gauge and should be taken into consideration when introducing foreign bodies. When you enforce a standard of care on a diverse population, there are going to be ramifications.  

This is where the science has to adapt. We should be looking at Autism as a cocktail; containing many different components that affect comparable areas of the brain. It is when we can accept there isn't one answer that we can move forward. 

So lady, did you regret asking me why do all my children have Autism or why so many kids are being diagnosed with it? 

As I said, I have my hypothesis. It is MY opinion. I can see that many of my children's Autistic characteristics are in some ways just exaggerated quirks from myself or their father.  And in the cases in which we both had the same quirky tendencies, the children got it double.  

And considering the way we as humans live on this earth presently, it is no wonder why we are having problems. Our treatment of the earth is affecting us on a personal level.

I have faith that someone will figure it out. Unfortunately with this kind of issue, it may be decades, if not longer before there is enough data to make any type of hypothesis. 

Be warned, no one is immune.
Autism is everywhere and might be in your genes. 

Snow Day

Today we had another snow day. I read many of my friend's Facebook postings about hiding in closets and wallowing in despair, but I'm not one of them. 

You see, I actually LIKE not having to get five kids ready to leave the house. I'm sure my body does too. If someone were to monitor the level of cortisol in my system the 10 minutes before we leave the house in the morning, I'm sure it would be off the charts. Snow days mean no ugly transitions from the bed to anywhere. Forget about getting dressed, f-that. Stay in your pjs. Why? Because I don't care. Underwear? Well that is optional isn't it? I don't have make sure everyone has socks, is dressed, fed, brushed and has their shoes and coats on ready to roll. No lunches, backpacks or that f-ing homework that they remembered they hadn't done at 9:30 pm. 

And just when you thought it couldn't be any better than that, there is one thing that makes its super-fantastic: I can sleep in. Yes, you read it correctly. #2 is in charge of getting the twins breakfast.  All I have to do is make sure there is a fresh box of granola opened and ready to pour. No fuss, no muss. After all those years of being a slave to the kid's wake up time, I am finally free. 

Although I can still hear their super-loud voices throughout the house, it's easy to ignore when you are engulfed by flannel and down.  Must get earplugs. 

So what do we do all day? I let them play. Believe it or not, the fighting is really minimal and there are so many possible play companions that it works. 

I do make them read a bit and I work with #1 with his reading, math facts and saxophone practice, but it is no more than I require on a school day. Well, at least that's what I tell them. 

And I get to do all the housework and sometimes more that I would usually do. I know. You jealous?  I have been teaching #1 to do laundry and today he did several loads. I even started teaching him how to fold. I got the twins to help clean the bathroom and kitchen. #2 & #3 actually picked up some of the Legos that I asked them to clean up. Just show them the Lego-eating-vacuum. It works every time.

So friends, I'm sorry your kids drive you nuts and you are hating the snow and the snow days that come with it. But I really don't mind. That is, as long it is just one snow day at a time. 

Just Give it a Try

I admit, I dropped the ball a little. Once the girls began going on the potty full time, I really didn't mind begin summoned, "I"M DONE", to wipe their bottoms.  Hey, the hard part was done. I didn't have to follow them around and watch for the potty dance, clean up accidents,  or buy diapers which greatly depreciated the wine fun. 

So when they called, I assumed wipe duty.

And now they are five and will be starting camp soon and I realized that they will have to be transitioned out of this dependence. 

So this morning, Twin "S" was on the potty after her  announcement, "I HAVE TO GO POOPIES". When she was finished, she called out her usual, "I'm done." I handed her the paper and told her, " You know, you're five now and you will be going to music camp soon. I won't be there to wipe your bottom for you and you need to learn how to do this yourself."

She scrunched her face up and said, "then I won't go potty at camp."  Yea, good luck with that one. Followed up with, "why can't you come with me?" Well became most kids don't travel with their own official butt wipers.

I then listed all the kids we know that wipe their own butts. She seemed surprised that her brothers have the skill and she thought about it for a minute, assessed the challenge, and then said, "you do it."

I held my ground and then did what anyone else would do, I made up a song and Disney-fied it.

"Give it a wipe and drop it down,
 then they'll be applause around,
Just give it a try, just give it a try." 

"NOOOOOOOOOOOO"
 
"Give it a try and and wipe it up, 
and I'll give you two thumbs up,
Just give it a try, just give it a try."

 Her face scrunched up and she screamed, "NOOOOO, YOU DO IT!!!!!!"

"Give it a try, it'll be ok
 you'll wipe your own butt today
just give it a try, just give it a try"

"MOMMMMMMMY YOU DO IT"

So I kept singing and then added some ultra-fine dance moves, but she was not buying it.

Convinced my song was just fine and the critic was hostile, I walked away for a few minutes.

I returned a few minute later, looked at her tear-streaked face and the drop of liquid boogers resting on the crease of her lip, and felt the pang. I needed to ease her out of this distress.

I asked her, "are you afraid of getting poop on your hands?" She nodded. "Well, the paper will touch the poop and you won't get any on your hands. That's why we always wash our hands after we go potty."

I convinced her to try together and although she didn't exactly hit the target, she gave it a try and I finished up.

The Disney finale:
"You gave it a try, you wiped your butt
and now I'll give you two thumbs up.
You gave it a try, you gave it a try"

I asked Twin "R" if she was ready to wipe on her own when she went potty. She replied, "I will do it myself and you won't sing a word."

So much for my new career as a singer/songwriter.

The critics have spoken.

Dear Music Teacher

Dear Instrumental music teacher, I just got #1's report card and I see you gave him a "C". I read your criteria for grading and I am confused and angry and based on my Anger Management post, I really want to punch you in the face.

You see, I was a music major in college for three years and I went to school with people like you. The introverted music performer who got into education because it was really the only way to make a living. The thing is, you are a pretty crappy teacher when it comes to educating my kid. I watched you in concert, you had no fun, you sparked no excitement. You loved the talented kids and tolerated the rest of them.

You see, at #2 & #3's school, they have an awesome instrumental teacher. He is funny and makes everyone in the school wish they were old enough to play an instrument. He is a representative of the entire music program, the first face the kids see and their first exposure. If you don't ignite them, they will not be inspired to play.

You don't ignite the kids, just my nerves.

When we talked at the beginning of the year, before he chose his instrument, I told you that saxophone was my primary instrument in college and if he didn't get to play percussion, then saxophone would be his second choice.

So when you said that you start all the winds on clarinet and then change. I was confused.  Clarinet is an open keyed instrument. Take a kid who gets OT because they have fine and gross motor issues; who will already have some challenges with sitting up tall, blowing in to an instrument, and on top of it,  add the need to cover the holes, you are asking for failure. 

I went along with your decision and as a precaution, asked the OT to  accompany #1 to lessons to lend a hand and offer strategies, but you sent her away because you felt she wasn't needed.  I played clarinet too, so I helped him everyday as part of his homework and he wasn't getting better. I finally wrote you an email and told you I was switching #1 to saxophone. 

We practice five days a week and he has made so much progress since he switched. We work on all the band music and the exercises. The hardest part is getting him to learn the notes but since he has perfect pitch,  I sing the notes, and he can match them. You even said he was getting better.

And then his report card came home and you gave him a "C'. He had never forgotten his instrument, always was prepared and got a freaking "C". I saw that paper and lost my mind. And wrote you this email:

Hi ---, I just received #1's report card and I'm really confused. I log all his practice time in the front of the lesson book, yet you penalized him for not practicing. If you look in the front of the book where the log is, you will see the information.

Secondly, I don't know how you can grade a kid's behavior when it is specified in the IEP that he has a disability. That should be taken into consideration, and the fact that he is cooperating at all should be nothing short of amazing.

Lastly, I don't know how you can penalize someone for not having adequate note reading skills when you write all the notes above or below the note. That really doesn't encourage someone to learn the notes, rather to use it as a crutch. And, once again, if you read his IEP, you would see that he has transition issues, which translates as, teach him the way you want him to be. I sing the notes to him and NEVER write them down.

You really need to rethink the way you're choosing to evaluate him. I trusted you once with choosing an open keyed instrument on a kid with fine/gross motor issues.  But, now it obvious you have no clue as to what his IEP says at all, nor what fine/gross-motor delays really translate to in your field. That is why I sent the OT in to help when you insisted on him starting with the clarinet. I saw the red-flags and you didn't.

I am asking that you look at the log book in the front of the lesson book and submit a grade that reflects your oversight. 

Thank you

March Fourth

This morning I  was getting the kids ready for school, I glanced at Facebook and read a post of a great writer-friend from college. She shared a quote from Harry Connick Jr, "Today is the only day of the year that means 'go forward' - March 4th."

And with that, I was inspired. I thought about how time marches on unforgivingly. How seemingly in  the blink of an eye, my first baby is now 11 and the twins are five. Time marched on as I was getting the children evaluations, going to OT appointments, visiting the Behavioral Psychologists, and making incentive charts. 

Time passed with every book I read to the kids, every tea party, soccer game, hockey practice and with every time-out and meltdown. 

I thought about how much time has passed since we left our home in New Jersey to start a new chapter in Maryland. In August it will be four years and although there are still boxes we haven't unpacked, I can finally say that everything has fallen into place and we have a good life here. We have friends, people we can count on, great doctors, and a great Autism & special needs Community.  I am finally teaching yoga again and it will just keep getting better.

So today, on March Fourth, I am inspired to March forth and be mindful about the swift passage of time.  I will remain steadfast in my belief that each one of my children, regardless of their issues, will grow up to be nothing short of amazing. And, I will continue to believe that each day has the capacity for greatness, and make will make it my mission to find and share it. 

Sometimes, inspiration is just a Facebook post away.

So march forth friends, because St. Patrick's day is right around the corner.

Game Stop Drama

Every weekend I take #1 with me to do errands. Sometimes, as part of our outing, we stop at Game Stop and let him walk around the store, play some of the games and look at all the new video games. I love the staff at Game Stop because they love their jobs and know all the kids. #1 is comfortable asking them questions and they gladly engage and answer him.

This week, I told him the order of the errands. There were four stops and Game Stop was our second stop.

But when we pulled up to the store, it was gone. There was just an empty shell of the store that used to be. Oh crap, oh crap, oh crap. And when he realized it wasn't there, he fell into his default mode, "OH NOOOOO! YOU MEAN IT'S GONE FOREVER? My precious Game Stop, you can't be gone. Where are you? ARE YOU GONE FOREVER? Oh Mom, THIS IS WORST DAY OF MY LIFE."

I reassured him, "It's ok, there are two other locations. Let's do the third errand and then we'll go to the other one."  We got to Home Depot and he continued to lament on such a tragedy. He couldn't focus on the task and just wondered aimlessly around the store saying, "Game Stop is gone forever. I will never see my favorite store again."

I drove three miles north to the next location. We parked, got out of the car and discovered that store was also gone and another store was in it's place. Crap, crap, crap. What the hell? And then he absolutely lost it. He threw himself on the ground. I reminded him there was still one store we could go to and I bribed him with brownies to get up. Glad there weren't a lot of people around to stare.

We got back in the car and I was nervous. I had one more shot at this and if we failed, then it would be bad. There is one more store five miles in the opposite direction. We are going. Why the hell are they closed?

I told him, "I know this is really hard. Let's go to the other one and if it's not open, you can eat whatever is left of the brownies when we get home." It did calm him a bit, but the questions kept coming. "IS IT GONE FOREVER?????"

We were only supposed to be out an hour but we drove south to the location of the last store. When we pulled in the parking lot, #1 spotted the store, intact and open. With a nervous laugh and a sign of relief, he said, "Mom, it's here. I am so happy." He got out of the car, walked to the door and before he entered he said, "My precious Game Stop, I thought I lost you forever" and then kissed the window.

We walked in and after he gave one of the game displays a hug, he approached the manager and said, "I'm so glad you're here". And then he demanded answers. "Why are my stores closed? And then he ran off to inspect the store before he could answer.

The manager explained that there was a conflict between the landlord and Game Stop corporate so the store closed and will reopen in another location in the future.

We saw one of the staff members from our store and he told us it had closed right after our last visit two weeks ago. As I was talking to him, #1 walked up to me and placed a Disney Infinity character in my hand, "Here ya go, Mom. Are we getting this?"

"Yea buddy, we can get this", I replied. "This was a rough evening for you and you handled it well. At least now, you don't need those brownies."

He stopped in his tracks, turned around, looked at me and said, "Ah, Mom, I still want those brownies." Direct eye contact.

I smiled and said, "Ok buddy, but just one."
He smiled and ran off to look at another display.

Whew, Crisis averted this time. I can put the cape away now.

Dear Game Stop, please reopen your store in my town quickly. Sincerely, Shari