Who Do You Advocate For?

I advocate for my son Charlie. 

I have from day one and will continue for as long as I need.  Advocacy is rarely easy, but it's fundamental to a child or adult with special needs.  

I advocate for services.  I advocate for inclusion.  I advocate for awareness.  I advocate for love and acceptance.  I advocate for human decency.  I advocate for justice.  

I advocate for my child, my friend's children, I advocate for all of those who will come long after us.  I advocate for friends, met or unmet.  I advocate for a complete stranger.  Because at the end of the day, they need to know someone is in their corner.  

Who do you advocate for?

Today there will be the biggest and most amazing outpouring of support and advocacy in the special needs community.  

The special needs community has come together and made a video that will be released today on social media in support of Macade, the little boy in Ohio who suffered at the hands of one of his teachers. 

But you can help too.  

Take a picture (black & white) and make a sign like this one with the name of who you advocate for.  Anyone can join.  Post it on your social media sites with the following hashtags:

#macadematters

#floodthefeed

#advocateforall

#fcvblogsquad

#whodoyouadvocatefor

Let our voices be heard today!

My Boy, Anything is Possible

My Dearest Boy,

We've walked quite the road, you and I.  Your dad and brothers have been there every step of the way too. It all began when you and your twin brother were born three months too early.  The future was so unknown back then.  The challenges and hills to climb seemed insurmountable. But you and your brother both rose above every challenge you faced.  

As you grew it was clear that your needs were greater than your brothers'. Your dad and I had no idea what was going on, but we began asking questions and asking for help.  It's so incredibly hard to ask for help when you don't know what kind of help you need.  

When you were diagnosed with autism at age 4, it rocked our world.  We had no idea what an autism diagnosis meant and those unknowns were again in front of us.  But, along the road we found some amazing people who helped us see what could be.  

An autism diagnosis doesn't mean we love you any differently.  No, your dad and I have loved you fiercely from the moment we met you. But the fact is that you've had to fight for everything you've achieved since you were born.  You've amazed us every step of the way.  

At times the road we've walked turned into a rollercoaster.  We've rode the highs and held tight to one another when we plunged head first into the lows. There have been twists and turns along the way too.  Some we could see coming, others came out of nowhere.  But through it all we knew we had each other. 

Our bond is special, my love.  A bond not everyone can understand.  A bond that not everyone will experience in their lifetime.  We are the lucky ones, you and I.  I am your person.  Something I never knew was a thing before I knew autism.  You rely on me a little more than most kids rely on their moms.  

But, sweet boy, you are so much more than autism.  You have the biggest heart, bigger than anyone else I know.  You show those you love every chance you get.  You're smart.  You remember everything and you notice way more than people realize.  You see the world differently and you've helped me, your dad and brothers see the world differently too.  

You know how to have fun and you're hard working.  Out of anyone, you would know what it is to be hard working.  You've reached goals that have been hard to meet.  You've reached goals most kids don't need to meet.  You don't give up either.  That in itself is beyond admirable.  

Last week you reached a huge goal we've been working on for so long.  You went on your first trip on an airplane.  You and me, we left for a few days and didn't look back.  My love, you amazed me the entire time.  This trip was an emotional one all on its own.  But then you went ahead and knocked it out of the park.  You exceeded any expectations I had before we left.  You stepped out into an unknown world, a scary one at that, and did better than some adults.  

My boy, anything is possible.  And you were the one to show me that.  You taught me to never give up.  I'll never forget that.

I'll love you always, Charlie.

Love,
Mom

The Sky's the Limit: Part 3

There is no doubt that Charlie's first flight was a huge success.  One trip doesn't make me an expert by any means.  But I wanted to share a few things that we learned along the way that made this trip a little easier.

Call The Airline Before Traveling

This may not be helpful for everyone.  Since we were traveling with a service dog, we needed to call ahead to make sure the airline knew we would have a service dog with us.  Rules about service animals and airlines have changed drastically in the last few months.  Calling ahead is a must.  There is also now a DOT form to fill out online and submit to the airline before travel as well.  It basically assures that your service dog is in fact trained, well behaved and up to date with vaccinations.  When I called ahead we were also able to get better seating that could accommodate a 95lb animal and still give us some leg room.  Delta Airlines had amazing customer service when I called and spoke with them.  

TSA Cares

TSA Cares is a program not many people know about.  Anyone with a disability or medical condition can call TSA Cares before they travel to ask for help navigating the security screening process. Anyone who needs special accommodations while at the airport can even ask a TSA officer for on-the-spot assistance from a support specialist to help them through the screening process.  If requested, this support specialist will even meet you before arriving at security to help you through the security processes step by step.  

I called TSA to let them know we'd be going through security with a service dog and with a child with special needs.  They asked me what exactly they could do to make the security screening easier for us.  I outlined that we needed a speedy process.  I informed them Charlie would need clear, direct instructions from someone who could be patient and calm.  Honestly I wasn't really sure what all they could do to make this part easier so this is all I went through with them.  But if you need other assistance or have other directions on how to best work with your child, don't be afraid to tell them. They were actually quite amazing at the airport.  Our small town airport wasn't quite sure what to do with a service dog coming through, but the numerous other airports we went through were so supportive and made the security process so simple and quick.  

Prep Your Child

For most trips you'd have plenty of time to prep your child.  For us, this trip was very last minute giving us only 2 days to prep. He does not like having his schedule change suddenly or to have surprises sprung on him, so having a little prep time was good.  I spent as much time as I was able during those 2 days talking with Charlie about what to expect during the trip.  We utilized his laminated social story cards about going to the airport and riding on a plan.  We put the cards on a lanyard that he was able to wear around his neck while we were traveling and follow along during each step of the way.  This was more helpful than anyone could ever know.  It helped Charlie to know what we just did and what to expect next.  

The night before we left I took Charlie to the store and had him pick out some special snacks and treats he could keep in his backpack with him.  I helped him pack his backpack with his Kindle, headphones, books, snacks, small comfort blanket and water bottle.  He got to pick out everything that went into his backpack. 

We even talked about what would happen when we got to North Carolina.  I outlined that we would stay at someone's house, not a hotel.  I told him there would be some family there that he knows and loves, but that there would be some people there he has never met or did not know very well.  I reassured him I would be with him the whole time.  

Early Boarding

Seriously, take advantage of this if you are traveling with someone with a disability!  You can either let the gate attendant know when you arrive that you'd like to be part of their pre-boarding or you can just go ahead and proceed to the gate when they call out pre-boarding for anyone needing extra time to make their way to the plane and sit down.  Charlie and I took advantage of this during each flight and it made a huge difference.  We had plenty of time to make our way onto the plane, find our seats and get settled.  Boarding a plane doesn't sound like it takes much work, but add a service dog and a child who has a hard time focusing and you'll be happy to have a little extra time to get situated before the majority of the people board the plane. 

Navigating MSP Program

Take advantage of any local programs that help you practice navigating the airport.  We live in Minnesota and were able to participate in the Navigating MSP program a few years ago at the Minneapolis/St. Paul airport.  This program is a collaboration between Metropolitan Airport Commission, Fraser, and the Autism Society of Minnesota (AuSM).  They have monthly dates to sign up for where autism families can have a practice run navigating security, a tour of the airport, board a plane (you do not take off) and meet a pilot.  Each family gets their own volunteer to show them through the whole process.  The volunteers are so amazing and patient.  During your session you will get a social story, you can ask questions and get tons of great travel tips.  If you don't live in Minnesota, look online for programs in your home state.

Click here to find more information about Minnesota's Navigating MSP Program

Stay Calm

I cannot stress this enough.  Moms and dads, our kiddos can sense when we are anxious or nervous.  Stay calm and show them that traveling does not need to be stressful.  The very last leg of our trip home we had to change flights and I knew from our itinerary that we were going to have very little time to deplane, walk to the other side of the airport and board our next flight.  I was super nervous to miss our connecting flight, but I didn't want to rush Charlie or stress him out that we needed to keep moving.  I tried to make our walk across the airport fun and challenged Charlie to find as many moving sidewalks as possible (so we could go a little faster), which he loved.  I even let him run as fast as he could (mom & Sunny jogged with him too) on the stretches of hallway where no one was around.  It gave him the chance to get wiggles out and helped us get to our connecting flight quicker.  We got there right in time to board right away and be on our way home.  

Ask/Accept Help

I know what you're thinking....but, Kayla, what if it's hard for me to ask for/accept help?  I totally get it.  I'm that type of person too.  But guess what?!  There are still good people out there in the world who WANT to help.  Guess what else?! It felt so good to get help to make things easier.  Along our travels we had numerous people reach out and ask to help us.  A couple times we had people offer to help carry/roll our carry-on luggage.  One woman asked to help us get to our next gate.  Let the flight attendants know if they can help with anything.  People want to help if they can.  Don't be afraid to ask or accept help when offered.  

One last bit of advice- Check. Your. Luggage.  

Since this was a short trip I didn't think it would be a big deal just to do a carry on.  Boy oh boy would it have been so much easier to check our bag.  Charlie and I each had a backpack and then had one small roller-carryon bag that we kept with us.  Between hanging on to Sunny, balancing our gate check bag with Charlie's booster seat, rolling the carry-on bag and keeping tabs on Charlie to make sure he didn't lag behind or get too far away from me- boy was that a lot of work.  It would have been so much easier to have checked that carry-on bag.  

(Yes, I know Mike, you told me to check the bag.  Next time I'll listen :)

This is NOT Okay

Dear Boardman Board of Education,

I am writing regarding the incident involving one of your staff stapling a note to a child’s head. I am a mom to a special needs son. Thankfully I am not in your district. When I heard of this incident I was outraged. I was even more appalled to learn the district is standing behind this teacher and her actions. There is no way your district will be able to sweep this under the rug. Nor should you be able to. 

Set aside the fact for a moment that this was a special needs student. Imagine if something like this had happened to your son or daughter. Wouldn’t you be just as outraged as I am right now? As outraged as thousands of other parents are right now? If you’re sitting on the board of an educational institution I hope to God you would be. The fact that this was a special needs student makes it even worse. I’d love to know your initial reaction to the news of this incident. Did your stomach roll like mine did? 

Do the right thing here. Do the right thing and fire the teacher aide who did this. A person like that does not deserve to be around any child, let alone someone as vulnerable as a special needs child. And do even better by firing the Superintendent who is standing behind this teacher. You’re only doing more harm by standing behind them. These people should not be allowed to be in any profession that involve children, special needs or not.

 

Sincerely,

Outraged Special Needs Mom

Yep, I wrote this email above and you better believe I sent it to the Boardman School's Board of Education in Ohio.  

I searched the news app on my phone to find the article I was looking for.  Surely it shouldn't be hard to find.  The article(s) about an Ohio teacher's aide who stapled a note to a special needs child's head as a reminder to bring a water bottle to school.  This shouldn't be a hard article to find.  Yet it is.  It's not being talked about.  And it should be.  This is not okay.  

This school district is downplaying the severity of this incident and it's not okay.  This district gave the teacher's aide a verbal warning.  THIS IS NOT OKAY.  This child is now fearful of a place and people who are supposed to be safe.  What if this was your child?  Or your grandson or nephew?  What if this happened to someone near and dear to your heart?  I do not know this child yet I am outraged. We cannot be silent.  Please stand tall and take action.  You can contact the school board at this website: 

https://www.boardman.k12.oh.us/districtBoardEd.aspx

The Sky's the Limit: Part 2

Traveling as a family has always been a goal for us.  Knowing we needed to take extra measures to help Charlie be comfortable with travel, we have been working towards this goal for a long time.  We started small doing quick outings in our community, we've done weekend camping trips since the boys were young, we eventually moved up to day trips close to home and in more recent years we've incorporated longer Summer vacations in our camper.  

In 2017 we heard about an amazing program at Minneapolis/St. Paul Airport called Navigating MSP Program.  This is a free program that hosts monthly gatherings at the airport where autism families can go to learn about navigating the airport and how to make it work for your family.  You get the full airport experience with a one to one volunteer who shows how to go through security, explore the terminal and where you even get to board a plane and meet a pilot.  Knowing we had big travel goals we signed up for a tour time.  Talk about an amazing program!  Each of our boys got a social story on a lanyard, we got a detailed tour and had the chance to ask a ton of questions.  The volunteers are wonderful and so patient.  We even got some one on one time with the pilot after our group dispersed.  The pilot answered our questions and gave us pointers on traveling with a service dog.  Rules have changed since then, but the time we had with him was invaluable.  The boys got to practice being at the airport, boarding a plane and they even got to see the inside of the cockpit!  We had every intention to go through the program again closer to the time that we took a family trip on a plane, but life throws curveballs from time to time.  

Last week I got the sad news that my grandfather would pass after having a stroke.  I needed to go to North Carolina to say goodbye and to be with my family.  But me leaving for any amount of time is never easy for our family.  So, it was decided Charlie would come with me.  Yes, a last minute trip where he would be required to ride in a plane.  

We prepped.  We planned.  We packed.  We talked through everything we'd be doing.  We got out his social story and studied it before we left.  He even brought it with us so he could go through it step by step and know what came next.  I have to say, this may have been one of our biggest lifesavers.  Thank you, Navigating MSP Program!

One part of our travels that truly made me nervous was going through security with Charlie.  I didn't know if he'd be scared, be set off by any loud noises as we went through security or even just the waiting to get through the line of people.  But he amazed me and was a rockstar.  

Because of his age, they did not make him take off his shoes, which was a huge help.  He waited patiently.  He listened.  Thankfully we only had to go through the regular metal detector and not the larger scanner that surrounds you.  He stayed calm.  

While I gathered all our items from the security area Charlie looked at his social story for what was next.  We walked to our gate and waited.  Charlie occupied his time with some snacks and his kindle.  And then we got the call to board.  All I could think was, "here we go!"

Friends, my mama heart was beating so fast.  I wasn't sure how he would do with being on the plane.  I didn't know how he would handle the take off, the change in pressure, the length of the flight or the fact that we had 2 layovers and 2 plane changes.  All I could picture was him freaking out while 30,000 feet in the air.  This would be a true test of how travel will move forward for our family.  

He blew me out of the water.  He sat calmly.  He watched movies, played games and had ample snacks.  He had Sunny, his service dog.  Sunny was his constant.  

Charlie knew he could count on Sunny to be there the whole time.  To help him walk through the scary parts, the transitions, for snuggles when he was nervous, or deep pressure when he started feeling a little out of his element.  

They both did amazing.  

But we couldn't do this trip alone.  Stay tuned for part 3- tips for flying with special needs. 

The Sky's the Limit: Part 1

Anything is possible.  

Before we had kids, Tyler and I knew we wanted to travel as a family.  We had big dreams, big goals.  And we still do.  It's just that our goals have changed slightly over the years.  

At age 4 our son Charlie was diagnosed with autism.  When we saw the challenges he faced every day, we weren't sure that travel would ever be possible.  Riding in vehicles, noise sensitivity, changes in routine, transitions, unfamiliar surroundings, and large crowds of people are just a few things that make traveling difficult for Charlie.  Travel by car has always been challenging so we weren't sure if we'd ever be able to travel anywhere by plane.  

But that hasn't derailed our goals.  Traveling by plane is a goal we've had tucked away for numerous years.  We just knew it would take a little extra work to get there. Through his weekly therapies Charlie has worked on things like riding safely in vehicles, walking safely through parking lots, social skills, coping skills in large groups of people, waiting in lines, etc.  His service dog, Sunny, helps in these areas as well.  

Last year (2020) we decided to book a trip to Florida.  Charlie had been doing so well, had come so far, we decided we were ready for a big trip.  A trip on an airplane.  Unfortunately, Covid ruined those plans and we had to cancel.  And now this last year, being the topsy turvy year that it has been, we've seen skills that Charlie had worked so hard on for so long slip away.  It has been heartbreaking to watch.  Being home most of the year and months of canceled therapy sessions made it hard for Charlie to work on his skills.  But we knew we would claw our way back to where he was before.  We knew we had to keep our goals in sight, so we re-booked our trip to Florida for later this year (2021).  We figured we would have all Summer to regain those skills he lost.  

But then plans changed.  Charlie would travel by plane far sooner than we realized. 

Last week I got the news that my grandfather had a massive stroke and would not recover.  I'm in Minnesota.  He was in North Carolina.  I wanted to be there.  I needed to be there.  But the many struggles at home the last couple weeks made me hesitate to book that last minute flight.  Tyler encouraged me to go and assured me that he and the boys would be fine at home without me.  However, my mom gut reminded me how disregulated Charlie becomes when mom is gone and I didn't want to put my family through that.  You see, I'm Charlie's person and without me things go south pretty quickly and it usually takes a long time to recover.  

Then, an idea hit me.  It came out of no where really.  The idea that maybe I bring Charlie with me to North Carolina.  It sounded crazy in my head; me-traveling alone-with my son-who has difficulty traveling- and his service dog. Crazy, yes, but it also sounded like the best solution.  Tyler agreed.  We both believed that this could be an opportunity to practice traveling by air with Charlie and Sunny (Sunny had flight experience in her training, but we have never flown with her).  It would give Charlie one on one time to figure things out.  It would give me time to figure things out.  And it would give our other two sons much needed one on one time with dad.  

It was decided.  Two plane tickets were bought.  We began to pack.  And I began to prep Charlie as best I could in the short amount of time we had.  And by prep I mean going through day by day what our trip would look like, where we were going, who would be there when we arrived.  I went through things step by step with him.  Prepping meant getting out his social story about going to the air port and riding in an air plane and we studied that social story like our lives depended on it.  Because it kinda did.  The key to surviving this first flight was to be completely prepared.  And for me to be as prepared as possible for the unexpected.  

I made sure Charlie had his favorite snacks on hand, his kindle, books, games and noise canceling headphones.  Some incentives, I mean treats to get him through any tough moments.  I made sure we had everything needed for Sunny- her working vest, leash, collars, food, bowls and special treats for her too.  I'll be honest when I say it was a little weird packing dog food in my suitcase!

I had to prep more than just Charlie.  I never prepared for a trip more than I had for this one, and in such little time.  I also had to call the airline to let them know we'd be flying with a service dog.  A large one at that and to ask for accommodations.  I had to call TSA to let them know the same and to prep them on what we needed from them to make our trek through security successful. A little autism awareness goes a long way.  

Preparing to travel with kids is one thing.  Throw in autism and a service dog and it's a whole new ball game.  My tummy was in knots.

It's important to know that last minute changes to routine can really throw Charlie off so I knew this would be interesting.  We would be out of his comfort zone.  WAY OUT.  We were in new territory.  I could prep him as much as I'd like, but the reality of it all would hit when we were in the middle of our trip and there's no going back.  

Then, the time for our early morning flight arrived.  

We entered the airport and the most difficult part of the trip was the first thing we went through- security.  And let me tell you....this kid did so well.  But I'll save that story for another time.  Stay tuned. This is a mulit-part post. I'll have more stories about our trip and some tips on traveling with autism.