My child has Autism. Sailing the seas can be rough at times. There are storms, obstacles and problems navigating. Autism in our world is a lot like piracy. It robs. It hijacks. It leaves you battling for your vessel and your child’s new path. Autism also presents you a world of discovery, hidden treasure, and challenges you realize you’re up for. Life is a balance, and it’s no different with a child on the Spectrum. Autism Pirate is a blog devoted to discussing the good, the bad and the ugly.
Yesterdaywas the first day of summer school. Rye now has a year of middle school under his belt so we didn't have too much worry heading intoyesterday. It’s hard to believe that he started 7thgrade.
Things last year started rough. The transition to middle school was hard. It was exhausting actually.
He struggled a lot. He hated it.
He doesn't hate it anymore.
We advocated for some things and they are working with us. We have built a great relationship with a wonderful teacher. We involved the Autism Specialist for the district and he is really great too.
Rye had to jump in an feel really uncomfortable while his team got to know him better. He went from having a lot of hands on support in elementary school to having a whole new situation in middle school.
He tolerated it. He hung in. We think we have fixed the biggest struggles and he’s doing okay.
At the end of the day yesterday there was some confusion. There always is on the first day of school. When Rye transitioned to middle school we decided it would be best if he took the special trasnsportation bus instead of the big bus that picks up mainly kids who don’t receive special education services. He didn’t care. He was happy all year with what he called the “little bus”.
At the end of the day yesterday he did not get on the little bus, he got on the big bus. I was kind of freaking out. He was running late. I called the school, I called the bus service, I texted the neighbor, I emailed the principal. Obviously I wasn’t “kind of” freaking out…
He got home. He was fine. He told me all about it. Turns out the driver of the other bus is a mom he knows from elementary school and she used to drive his bus. “She knows me mom. It’s fine.”
"Ok Rye, but I don’t think that you will be riding that bus again."
"Why mom? I know what I’m doing. Why do I need to ride the little bus anyway?”
We openly talk with Rye about why he has extra help and why he needs it. I’m very comfortable talking with him about his autism diagnosis. That is not what had me feeling the way I was feeling. I told him that I wanted him to ride the other bus because I worry that there might be and probably are a lot of bullies on the middle school bus. I told him that I couldn’t really think of a worse place for bullying than the middle school bus.
He said, “Mom I know what I’m doing. I know about talking to bullies and I’m going to ride that bus TO school so call the bus lady and tell her.”
He knows what he’s getting into. I called the lady. He woke up an hour earlier and didn’t have a problem doing it. He rode the big bus to school. I have no idea how it went. I probably won't know until he gets home. I have no idea if they will even let him ride the big bus home today.
I'm not going to call. I'm going to let him handle it. He knows what he’s doing.
I've decided I need to make sure I’m not limiting him even when I think I’m doing it to protect him or because it's just easier. He deserves to try. He’s earned it. He knows he might be bullied. He’s aware. He’s made his choice for now and maybe it’s time for me to grow up a little bit too.
We acquire the strength we have overcome. -Ralph Waldo Emerson
That has always been a “favorite” quote of mine. I don’t think I total understood it completely until yesterday.
Rye might not last another day on the big bus. I might ultimately decide not to let him ride it anyway; heck the school might decide not to let him? However, I sure do love that he wanted to try.
He started middle school last year and he struggled.
He hated it.
He figured it out.
He acquired more strength.
I can’t control whether or not there will be a bully on the middle school bus or anywhere else for that matter.
I can hope that there is never a bully anywhere at any time.
But I don’t really need to do that anymore.
He knows what to do. He doesn't have to like it and he won't, he might not handle it great if it does happen, but he will tolerate it. He will keep trying. He will ask for help. He will tell me.
He's learning to trust that he knows what he’s doing.
He's growing up. He's acquired strength and now he's sharing it with me.
So... It's been a while on the blogging front . I apologize to my most likely two fans. Lol. Anyway, I guess I apologize again for the fact that I'm turning a Facebook rant into a blog but I guess that is what blogging is all about.
I also don't really totally understand why all this "gorilla" business has me so enraged. It just does. I've been going through a lot lately. I'm sensitive. I do understand that it is easy to judge when you have absolutely no idea what someone is going through. It's easy to judge when it might make you feel better about your own situation.
I get it. I get all of that on a level that some may never understand.
Below is what began as a Facebook rant that quickly became a long overdo blog about a lot of pinned up anger maybe.
I guess I also want people to understand that I know that I am I'm complaining about people needing to find better things to do with their time then complain all while I am also complaining...
Here is the link from my friend Meredith, that started the thoughts in my brain that actually began
yesterday when my friend Laura posted a similar link from youtube that I can't figure out how to share.
I began my post as:
Thanks for sharing Meredith Hoenes-Buckman. If there is one thing I know it's that there are many parents who try hard and sometimes kids just slip away.
I also know that sometimes kids wander for no reason at all. Rye did. I lost him at the City Museum. He was five. I didn't tell anybody about it for a long time. I didn't even tell Scott how bad it was until later. Days later. At that time in our life it was just better for me to carry the load, the worry, and the embarrassment. In someways it still is I guess.
My experience was so bad that I've never shared the whole story until now. I know I've been an open book. I have a blog about my experiences, my shortcomings and my successes. However in this situation I was so devastated that and I was so embarrassed that I didn't share this story right away. Technically, I haven't shared it for 8 years.
I've told some of you my "city museum" story but if you've heard it you're a good friend and I guarantee I haven't told you all of it until now.
Back to the story.
They (the city museum) locked it down for 30+ minutes. Nobody in. Nobody out. A child is "missing". I'm not complaining in the least. I appreciated then. I appreciate it now.
I will never forget the looks I got and the comments that were made once I asked for help. I finally panicked and asked for help, but not as quickly as most might think. I heard from many other parents as I was talking to the security officers, "What was she doing? How could she lose her kid? I need to leave. I'm late for mommy and me" Etc. etc. etc. The rest of that 30 minutes is a blur and to be honest all I remember is that I found him.
I found him.
"They" didn't. I remember saying how he loved the airplane outside and they assured me he could never make it outside without a parent because that was a rule of the City Museum. No child was allowed to go from inside to outside without parent permission.
"Mrs. Shade we need to take this seriously, if he is not inside then we need to take all of the necessary precautions."
"OK, I understand. Please find my boy. His name is Rye."
I lost him.
We were in the floor, in the caves, on the inside of the City Museum. (If you've been there, you know exactly what I mean.). Wyatt fell. He wasn't quite three and I turned my eyes off of Rye for two seconds.
He was gone.
I didn't panic at first because to be quite honest I'd lost him many times. He wandered. Not because he was mad, because he was sad, not because he was happy, he just wandered away. It was his way. I was used to it.
I called his name. I yelled it out in the way I typically did and he didn't respond in the way that he typically did. He never responded to his name. It was not a big deal for my kid to not answer his name. He never answered his name really. I still didn't panic. I didn't have any reason to.
I was conditioned to not panic.
I found my way to the exit of the underground cave feature dragging my poor toddler by his hand.
I still didn't panic.
I went to his favorite spots on the inside on the main level. My voice and my heart rate continuing to "not panic" because it was a familiar scene to me. A scene in which for a couple of minutes that turned to 10, maybe 15. I had absolutely no idea where my five-year-old boy was in a city that has one of the highest crime rates in the country and it was still okay. I truly wasn't panicked.
I was conditioned. Rye wandered from me at parks, at Walmart, in almost every social setting I had ever taken him to since he was old enough to walk. I'm willing to bet that it was nearly 25 or 30 minutes before I panicked enough to ask for help.
I finally panicked.
They helped. We locked down the City Museum. I finally found him in the one place I thought I would, even though they guaranteed me he wouldn't be there.
There he was, outside, probably 40 feet in the air inside an airplane, perfectly safe and happy in every possible way.
"Rye WHERE have YOU been?"
I wasn't a bad parent that day. I did absolutely everything right. I could second guess it all day, it doesn't matter.
He was safe. He was happy. A gorilla didn't eat him. A gorilla didn't die. But I lost him all the same.
I've had it with folks who judge other parents when in reality they have no idea what people are going through.
I was at the City Museum, eight years ago, with a five-year-old boy and a toddler on my hip.
Yes. My boy happens to have autism but it doesn't really relate to this story in any way. Yes he wanders because of his autism but it has nothing to do with why I took my eyes off him for two seconds.
I wasn't trying to ruin anybody's day, I wasn't trying to take on too much, I wasn't being a bad parent. I had a day off from work and was trying to take two sweet boys to do something fun.
Maybe Gorilla mom was doing the same. Maybe she is a bad mom and has a lot of problems. I don't care. It really doesn't matter. I do feel bad for that gorilla. Clearly lots of folks do, but I just wish anybody who's judging that would take 30 seconds to think about it.
Close your eyes.
Try to envision that day at the zoo. Let's say, just for kicks, you are in the same situation and holding the gun.
You see the gorilla. He's holding a child.
The gorilla looks up. Grabs the child and you see the child's face.
It's YOUR kid.
(Sorry to go all Matthew McConahay in Time to Kill on you, but seriously.)
I don't own a gun. I hate guns. But we both know what I would do.
Maybe we should be talking about and judging the people who wouldn't do the same? Or maybe we should stop supporting zoo experiences and leave the animal kingdom alone. I don't really care either way.
I do know that Gorilla is gone. Lessons have been learned. That mother will probably question her decision-making as a mother for the rest of her life. That makes me very sad.
Nobody's opinion on this matter will change the outcome in any way.
I also wonder how many opinions would change had the child died?
I'm glad he's safe. I'm glad he was small enough not to remember. I hope his parents never tell him the story.
Can we all please stop talking about it and go back to fighting the fights that matter?
Parenting is hard and to be quite honest we all suck at it!
My first "real job" after college was at the Judevine Center for Autism in St. Louis. The training and experience I received in the five years I worked for Judevine Center changed my life in many ways. It also prepared me for a future in a way I could never imagine at the time. The Judevine Center was founded in 1970 by Lois J. Blackwell, better known by all who admired her as Mrs. B.
It didn't take long to learn that Mrs. B, at the time in the mid 90's, was already a living legend. A pioneer. The work she had already been doing for 20+ years spoke for itself.
I could not even begin to count or list the number of guiding principles that have stayed with me my entire professional career. There are three things that stand out to me, have stayed with me, and that I learned in the first week of professional training at Judevine Center.
Respect. Respect for the individual and respect for all parents. Individual and parent opinions, thoughts, and most importantly a parent's role in their child's life come first.
Always a person first! Mrs. B understood the importance of person first language long before it was a thing.
Every child can learn and is capable of learning. Period.
I was so sad to hear of Mrs. B's passing earlier this week. I frequently think about how lucky I am to have worked for her years ago. The Judevine Center has gone through a lot changes over the years with new agencies becoming their own separate entities. Judevine Center remains today with Mrs. B's daughter Becky carrying on her legacy.
When I'm asked about my work experience and I mention my time spent at Judevine Center I frequently say that I worked there in the mid to late 1990's before the merging of companies, etc. I always proudly follow that up with "I'm a Blackwell baby, they raised me!"
RIP Mrs. Blackwell. I have offered assistance to many based on your knowledge and I am raising one little boy who has certainly benefited from all that your philosophies taught me.
Every journey has a beginning and usually an end. It has ups, downs, and typically many plateaus in between.
Most of the time our lives our shaped by people, events, and decisions we make on a whim. Sometimes we make decisions after agonizing about what might be the best thing to do and sometimes it doesn't matter how much we weigh our decisions because sooner or later fate does step in and make a decision for us.
We all question the choices we make as parents and as people living our lives doing what we think is right.
We do what we think is best, and sometimes we just make decisions because we are stuck, conflicted or pushed to a point of no return.
Sometimes we just go with whatever happens because we are just tired of all the worry.
Today I got to celebrate the retirement of the best decision I ever made. Today I got to join in a celebration honoring a person who changed my life. I know she has changed many lives and I know she will probably never fully understand how her act of kindness changed me, made me better and pulled me from the deepest, darkest hole that I was stuck in.
I was drowning.
I was stuck. I was living in a pit of denial, self-pity, and desperation as a parent and as a person.
I was desperate. scared. worried. hopeless. I thought I could "fix" it by ignoring it. I thought I knew everything. I thought, I thought, I thought.
It's hard to think about and go to that place in my mind and I really don't like to think about it because I'm just so grateful I'm not there anymore.
It's been over six years since I was in that place.
There are days that it seems like a lifetime ago and there are days that it seems like only yesterday, but it was the beginning of a journey. It was an awakening. It was the beginning of my life as a parent of a child who thinks differently and the beginning of a journey that may end up to be the most important thing I do in my lifetime.
It was the day I reached out to a woman named Barbara Brinkman and she changed my life. She helped me simply by doing her job.
It would take too long to go into all the details and it would be difficult not to blame others along the way, myself included, if I shared the full story. None of that really matters now anyway. What matters is that today I was so happy to attend a retirement party for a woman who changed me, a woman who finally gave our family the answers nobody else was willing to give us.
We have a son who was amazing then and who is equally amazing now. But Barbara Brinkman helped us start the journey that taught our son who had speech but didn't have an understanding of language become a boy who constantly tells us how he is feeling.
She started the journey that gave Rye a voice that was always there, but a voice that we didn't always understand. We continue to work on helping Rye to communicate more and more; but in looking at where he was then and where he is now there is no real answer other than the kindness and support of many wonderful people like Barbara. Our journey started with Barbara Brinkman and only Rye knows where the journey will end but the willingness and dedication of this amazing lady made it possible for the journey to begin.
Happy Retirement Barbara! I hope you know how amazing you are and I hope you know how much you changed our lives. You will forever be the person who extended a hand and pulled me from a pit of darkness and into a world full of hope, dreams and possibility.
Yesterday Rye turned 11. He was very hesitant at turning 11 because he said he wanted to stay 10 like Ben 10 forever.
Rather than writing a letter to him this year, I decided I would interview him and allow him to give you a little insight into his life and what he thinks about his birthday.
If there is one thing I could ask you all to take away from this video it is that many people who take time to educate themselves about Autism Spectrum Disorder know that difficulty with social skills is something that most people have a hard time with learning. Rye struggles, but Rye tries hard and he wants friends, he loves friends, and sometimes it takes the role of a good friend to make a friendship with Rye successful. Teach your children the two rules Rye and I have been talking a lot about lately.
#1 - Friendship should be fun. It should be fun for both people which means both people have the same amount of power in the relationship. It is a give and take. Good friends don't always agree but they work through their problems to make it better.
#2 - Thanks to a Clone Wars episode rule #2 has had a great impact. "Do not leave a man behind." If you see someone who is having a hard time making a friend or you see someone in the group who is alone, include them, talk to them and recognize that the rules of friendship do not come easy for all people.
The greatest gift you can ever give your child is to teach them to seek out a friend who is having trouble, seek out a friend who doesn't have any friends. True friendship means both people in the relationship have the same amount of power. True friendship is not about pity, it's not about having all the control, it truly is about doing all you can do to not leave a man behind. Teach your children to take a chance on the kid who might be a little different, the kid who might not be able to make the first bid at interaction, and the kid who if you take a chance might just turn out to be somebody extraordinary and fun.
I may be biased as he is my child but I can honestly say I don't have a better friend in my life than Rye. He always has my back, he loves me, and he is absolutely a lot of fun. If somebody offered me today the opportunity to change Rye so that he did not have ASD I would say with complete honesty "NO WAY".
He is who he is...a friend, a son, and an absolutely amazing 11-year-old boy.
I love you Rye. Happy Birthday sweet boy. Don't ever change who you are to make a friend, just keep trying and being the absolutely amazing, funny, gifted boy that you are. Momma loves you to the moon and back and as long as you are happy, I'm happy and so grateful everyday that I get to be your mom.