Category: Autism

Your Teen with Autism: When things go wrong with Pubic Transit

We know our teens need to become more independent.  But it’s so hard to not think about everything that can go wrong.  And it may hold us back from pushing our kids down the road of independence.  But we must push ourselves.

I shared how we prepared our son for riding public transit in a recent post.  But what if something goes wrong?

As part of our preparation programs, we know that our son struggled with the ability to describe where he is.  We had a program where our son and his ABA therapist would go to a public place like a mall or shopping center.  With phone in hand, he would need to go somewhere in the shopping center and then call his ABA therapist and then work to describe where he was so the therapist could find him based on the description.  This took a LOT of work and when things seemed like they were finally going well, we’d intentionally change locations and it would often feel like we were starting over.

Back to the bus.  One morning, shortly after a holiday break, I was almost at work when I got the dreaded text:

I am so sorry I accidentally went on a wrong bus I should have payed attention to what the number says.

I had been driving to work so I didn’t see the text until I arrived, 10 MINUTES after it had been sent.

I responded,

Are you lost?

He responded,

Yeah

I checked my phone to see if the family tracker was working.  He is constantly turning OFF the tracking.  Sure enough, no sign of him.  I would be totally dependent on my son being able to describe where he was in downtown Seattle, and likely in a location where he had never been before.

I called.  He answered.  He was frustrated.  He was scared.  I knew I had to be calm because when my son senses that I’m frazzled, he becomes more frazzled.

I said,

It’s OK.  You took the wrong bus.  It’s OK.  People make that mistake all the time.  I will come and pick you up and take you to school.  Can you tell me what street you are standing on?

This was it.  Could he answer this question?  Did the preparation we did actually prepare him for a moment like this?

Terry Avenue.

He answered my question!  At a minimum, I can drive all the way up and down Terry Avenue until I find him.  But I’m going to see if we can do even better.  I said,

Walk to the nearest corner.  Can you tell the me the name of the other street on the corner?

He responded,

Olive Way.

I was elated!!!

OK.  I know where to find you.  I am driving towards you now.  I think it may take me about 10 minutes to get there so just stay where you are and I will find you.

Now, as I was driving, I kept him on the phone and just reinforced all the good things he had done.  I recognized he was on the wrong bus.  He got off the bus.  He contacted me for help.  And he was keeping it together.

As I approached Terry Avenue and Olive Way, I saw him.  I’ve never been so happy to see him.  He hopped in the car.  And I once again reinforced with him how me made a mistake and he figured out how to fix it.  I was so proud of him and I said that being able to solve problems is what will allow him to live on his own someday.  (This is something he really wants.)

After I dropped him off at school, I felt a sense of relief.  And it wasn’t just relief that this incident was over.  It was relief knowing he could handle something going wrong on the bus.  EVERY TIME I dropped him off at the bus stop, I had this low level worry that I was just carrying around, EVERY DAY.

This worry comes from the verbal challenges.  My son cannot talk to me in a way that allows me to really know that he understands something.  He has proven to me so many times that he is comprehending things like this.  But because I cannot have a conversation to confirm his understanding, I have to blindly trust.  Its’ a huge leap of faith but time and time again, he is showing me with his actions that he understands.

We prepared for what could go wrong.  And when things went wrong, he was ready.  It can be done.  It may take a LONG time but it is time well spent.

 

Air Travel Tips for Autistic Teens

As our Autistic teens move towards adulthood, we need to be constantly thinking about how we get them to a place of independence.

I’m sitting on a plane as I write this, traveling with my family to visit some relatives over Spring Break.  It’s been an interesting trip as we’ve navigated the airport with our son’s future independence in mind.

Here are some tips on things we did to help our teen be as independent as possible as we traveled today:

Tip #1:  Choosing the Right Seat on the Plane

When we booked our trip, we asked our son where he wanted to sit.  Did he want to sit next to us?  Did he want to sit on his own?  He’s a typical teenager in terms of not wanting to hang out with his parents. He chose to sit alone.  So we chose a seat in front of the row we were in.

With this vantage point, I was able to see how he did interacting with the other people in his row, communicating his drink and food order with the flight crew, and if he kept to himself and didn’t bother other people.  He could simply look back if he needed help.  I purposely ignored those looks a few times just to see if he could manage on his own.  And of course he did.

Tip #2: Being Responsible for his own Luggage, ID, and Plane Ticket

We packed the night before.  We sat down and created a basic checklist,

We are going to be gone 6 days so you need 6 shirts, 6 pairs of underwear, … razor, toothbrush,…

I asked my son if he wanted me to check that he had everything he needed.  He told me it was fine so I left it alone.  If he forgets something, he’ll learn something.  And a forgotten toothbrush can easily be purchased on the other side.

At the airport, he had his passport and needed to keep track of his ticket.  We had a connecting flight so there were 2 tickets to keep track of.  It pleased me to watch him holding that ticket as if it were a million dollar lottery ticket.  He was being responsible and he knew he could not lose it.  (He set his passport down when picking up his backpack and would have likely forgotten it.  A gentle queue helped him remember and that was the only almost-miss he had today.)

Tip #3: Coaching on Navigating the Airport

After getting our tickets, we showed our son how to read the flight number and the gate number.  Then we told him we would follow him and that he needed to read the signs in the airport to get us to the gate.

He reached a couple of crossroads where he needed help.  We explained how to read the signs and with just a tiny explanation, he was on his way again.

My son really does NOT like to engage in conversation with me or anyone else.  But he was engaged in these conversations!  I could see he really wanted to learn.  We told him that we were teaching him these things so he could someday take a plane somewhere all by himself.  He wants that very badly so he was motivated.

When boarding the plane, we showed him how to read the row numbers and seat letter and then let him lead the way to find his own seat.  He struggled on the first flight but figured it out on the second one.

When we reached our first destination, we showed him how to look up the flight number and destination city on his ticket and then find it on the electronic board to verify which gate we needed to go to next.  He figured it out and led us to our gate, which happened to be the same one we arrived at.

I’m lucky because when my son is happy, it is communicated through his face and his whole body.  When he’s in charge, he stands taller, smiles brighter.  I could see that in him today.

I worry about him being out there on his own but I know that’s where he needs to be.  Watching him take direction and independently navigate the airport with me following behind gives me confidence.  He’s pushing me.  I’m pushing him.  And the confidence in both of us builds.  I don’t know how long it will take us to get there, but we are definitely taking steps forward.  Forward progress is all you can ask for no matter how fast or slow it is.

Air Travel Tips for Autistic Kids

You’re on a flight, a child is crying 2 rows back.  The child behind you is restless, kicking your chair.  If you’ve ever been the parent handling one of these children, you know how tough it is.  When your child has Autism, it can feel unmanageable.  I have my own nightmare story but before I tell that story, let me share some tips for how I managed this when my Autistic son was younger.

Tip 1: Set Expectations BEFORE you head to the airport

Using social stories, a calendar or a checklist, tell your child all of the things they are going to experience, step by step.  At least with my son, I found when he knew what to expect, he transitioned from moment to moment a lot better.  And this makes sense when you think about this in terms of transitions.  Many of our kids struggle with transitions.  If they know all of the different things they will need to transition between, they will do better.

A sample story or checklist:

At 6am, we are going to get up so we are ready to leave at 7am.  A person you have never met is going to pick us up in a car you’ve never driven in before and that person will take us to the airport.  Next, we’ll go to a place where we will give them our suitcases so they can put them on the plane for us.  Next, we will go through security.  We will need to stand in line and then show them a picture of ourselves and show them our plane tickets.  Next, we’ll need to take off our shoes and our coats and put our backpacks into a machine.  Next we’ll need to stand inside the machine and stay very still while it takes our picture.  After that, we’ll get our backpacks and put our shoes and coats back on.  Before we go to our plane, if we have all been very good in security, we’ll go to Starbucks to get a snack.  When we get on the plane, we’ll need to sit in our seats and put on seatbelts.  When the plane is ready to take off, we will not be able to use our iPads until the pilot tells us it is ok.  After that, we can watch a movie.  When it is time to land, we will need to put the iPad away again.  After we land, we’ll wait in line to get off the plane and then we will got to a place where we can get our suitcases.  After that, we get to see Grandma!

Tip #2: Use a checklist

This is a looooong social story.  By putting this into a checklist format, as you successfully get through each milestone. You can check off each item and then your child can see what is next.  Notice there is a snack, a movie and getting to see Grandma in this list.  There are fun milestones to look forward to.

Here’s a sample of a list from Cozi.  You can show your child this list from your phone and make a game of checking things off the list as you go.

TripList

Tip #3: Watch Youtube videos before the trip

For those more complicated items like getting scanned at the security checkpoint, there are youtube videos that are great to show to your child in advance so they can visualize everything they will go through so it’s less terrifying when they get there.

youtubeairport

Tip #4: Insert Rewards into Your Journey

Getting a cookie at Starbucks if they behave through security.  Watching a movie on the plane.  A Gummy Bear for every successful checkpoint on the list.  Whatever it takes.  In my son’s early years, we had to focus on each step of the way and celebrate each success.  Over time, we needed less rewards inserted into it and he became a pro.

Tip #5: Stay Calm

Preparation is half the battle.  For the rest, we need to stay calm and execute on our plan.  I’m convinced that our kids pick up on our energy.  If we are anxious, they will be anxious.  And when things go sideways, if we look out of control, that is when other people judge us.  I found that even when my son was in a complete meltdown, if I remained calm and demonstrated to other people that I was doing my best to get the situation under control, I felt more empathy than judgement (or maybe I saw what I wanted to see but whatever works).  This is easier said than done but a good thing to keep in mind when things don’t go according to plan.

What was my horror story?

I didn’t have a plan like the one I described.  My son had flown before and did pretty well.  We would often fly from Seattle, WA to San Jose, CA and it was typically a direct flight.  On this flight, my husband needed to fly out a day in advance so I was solo.  That was the first new variable.  And we had a connecting flight through Portland, OR.

I’m sure I was more anxious than usual.  Having 2 parents working together is always easier than one.  My son was doing great until we got on the second plane.  He just didn’t understand.  He clearly thought we had arrived in San Jose and when we were in a new airport and Nana and Pap Pap weren’t waiting on the other side, things went downhill fast.  As we boarded the second flight, he was crying.  As we sat down and I tried to get him to buckle his seatbelt, he started kicking and screaming.  I had Gummy Bears.  I had toys.  I had books.  Nothing was working.

I finally got the kicking and screaming to stop but he was still crying.  The well intentioned flight crew were trying to help but they were causing more harm than good.  Every time they would come over to offer juice or a cookie or anything, it would upset him again.  Finally, a crew member asked him if he wanted to watch a movie, asking if we had an iPad.

This was a problem.  I couldn’t let us “break this rule” of no electronics before we reach 10,000 feet and then not expect to have a problem on the next flight.  Our kids are smart.  They learn what they can get away with and I couldn’t let my son throw a tantrum and then get his iPad as a reward. At this point, I calmly stood up which forced the crew member to step back.  I quietly and calmly said,

You need to back off.  I’m sorry.  My son has Autism and every time you try to help us, you are making things worse.  Just leave us alone and he will eventually quiet down.

The crew member was NOT pleased at all but she stepped away.  My son calmed down.  The flight took off.  The movie was a hit and we survived the flight.

If I had set my son’s expectations better, we likely would have avoided this.  Lesson learned.  And I hope my story helps another parent down the line.

 

High School Sports Options for Teens with Autism

Unified sports are not integrated sports, and I consider that to be a good thing.  My son with Autism LOVES playing basketball and this program created an opportunity for him.

In middle school, my son was in a public school that did a pretty good job with integrating the kids with special needs.  They had 3 teams – the A Team, B Team and C Team.  My son was on the C Team.  And the typical kids had volunteered to help out on that team while also playing on the A or B teams.  My son absolutely loved playing on the team.  As a parent, it was a joy to watch him play.  He gained confidence by being on the team and I remember his teachers commenting on how they saw that confidence showing up in the classroom.

When we hit high school, playing on the basketball team was not an option.  I had several people suggest that my son be “a manager” for the team.  I looked into this but it appeared that my son would get to watch the other kids play while he gathered up basketballs for the players.  That seemed like it would be torture for a kid who wanted to play.

Due to many other reasons, we moved our son out of this high school.  He now attends a school targeted for kids on the spectrum but the school is so small they don’t have a basketball team.  Instead, they partnered with a public high school down the street who  partnered with Special Olympics Washington.  THIS would be our son’s opportunity to play basketball again.

The team was NOT part of the typical high school team.  And that was a blessing.  Why?  My son still has speech therapy, ABA therapy and music lessons.  With a typical high school team, practice is usually 5-6 days per week plus games.  While I want my son to have the opportunity to play a sport that he loves and get the social opportunities that go with that, it must be balanced against these other very important activities.  This special team had practice 2 days a week with tournaments every Saturday.  It worked into our schedule very well.

At the end of the season, the public high school did something that I thought was a wonderful approach to integration.  They had one game where the band and the cheerleaders were there.  They had posters all over the school encouraging all of the kids to come out and support the Unified Sports Basketball team.

UniSportsBBall

We attended the game and had many friends and extended family join us.  As I had watched the Saturday games, they were special.  And it was wonderful to see our family members get to experience this.

The team is made up of teens on the Autism spectrum, teens with other disabilities and then kids who are volunteers.  These volunteers are often siblings or teens looking for community service opportunities.  The volunteers help keep the game moving.  It’s obvious the (volunteer) coaches have taught the players the basics of passing the ball and shooting.  The thing that is special about these games is that every time a player is about to shoot a basket, everyone in the stands, from both teams, is rooting for a basket to be made.

The first few games, as I watched, I would really need to fight back the tears.  The volunteers are so caring as they help the teens who need a lot fo support.  Other players are really strong and have a platform to excel. The players were having so much fun.  The look on my son’s face could only be described one way: pure joy.

After the game at the high school, they had a dance.  This dance was mostly attended just by kids on the team and friends and family.  These teens are in a different place socially.  This dance is likely a lot more fun than a dance that is attended by all of the high school students.  Separate, not integrated, but that is really the right thing to do in this case.

After the season was over, my son texted me (which is the primary way he communicates with me) along with a picture of his basketball team:

I felt kind of sad when basketball is over.  I might miss them from basketball. 😦

An opportunity to play a sport he loves.  An opportunity to make friends that he can relate to at his level and on his terms.  Thank you to Special Olympics Washington as well as to this public high school that recognizes that they need to create these opportunities for these teens when full integration just isn’t appropriate.

Is Your Teen with Autism Ready for Public Transit?

Most 16 year olds are either driving a car or taking public transportation.  But for a teen with Autism, that’s not usually the case.  Our teenager clearly wanted the independence of not having mom or dad dropping him off at school.  Over the course of 2 years, we were able to get him riding public transportation on his own.

KCTransit

Breaking it down.

First, we had to recognize that we needed to find something equivalent to driving a car or taking the bus on his own while we worked through our longer term plan.  I could easily drop him off at school on my way to work, but he didn’t want that.  In the Seattle area, we had the option of using the Access Bus Service.  This was a hassle for me in terms of scheduling and coordinating rides but it gave my son his first step toward independent transportation.

During the period of time where he was riding Access to school, we focused his ABA program on several things focused on riding the bus:

  1. Personal Safety – not talking to strangers, where to sit on the bus (near the front), keeping a low profile by wearing headphones and not staring at others, avoiding “self talk” (talking out loud to yourself in public) and how to ask a bus driver for help.
  2. Bus and Navigation Skills – Using a trip planner to plan out a route from one place to another, understanding how to identify which bus to ride, navigating from one bus stop to another if your route has a transfer, and if you are lost, how to call for help and describe where you are.

When our son mastered his Personal Safety and Bus/Navigation programs, we knew he was ready.  In the Seattle area, they have a wonderful program called Transit Instruction.  We signed up our son and he was paired with an instructor who rode transit with him every day, to and from school, until he had mastered the route and demonstrated appropriate behavior on the bus.

The first time our son rode the bus solo, he met his bus instructor but then he got on the bus on his own with a plan to meet the instructor on the other end of the route.  Unknown to our son, there was a secret rider who was working with the instructor so our son could be observed when he thought he was riding alone.  All went smoothly and our son was ready to truly ride solo.

It was difficult for me the first few times I left my son at the bus stop.  Our son appears to be VERY proud of his ability to independently get to and from school.  And this simply contributes to his confidence across all other areas of his life.

If you are a parent wondering if your older child on the spectrum is ready for this, I encourage you to push yourself.  I’ll share in a future post “what happens if something goes wrong”.  We’ve lived through our son getting on the wrong bus and getting lost in downtown Seattle.  He survived.  We survived.  And our confidence in his ability is even greater now as a result.

Friday Night Lights

Friday nights these days are all about high school football games and time spent together as a family.  Is this what other families do?  Or, do they just make sure their high schoolers get a ride to the game?  I ask because my high schooler has Autism and we need to define what “normal” is for our family.

I’m not sure that my son cares about attending these events.  But we are going anyway.  Why?  This is an opportunity for integration.  It’s just not happening during regular school hours.  It’s a chance for him to observe his peers and be part of the high school dynamic.  And it’s a chance for all of his fellow students to see him being part of their community.  Besides, he appears to be having fun while we’re there.

It’s also been a chance for me to connect with this community.  I happen to have a co-worker who has a son on the team.  I’ve been amazed at how important this one connection has been.  At our first game, he introduced me to a parent who also has a child with special needs at the school who has offered to answer any questions I may have and help me navigate the world of special education at this high school if I need it.

My friend and co-worker also introduced my son to a bunch of students who are very involved in student government and peer mentoring.  One of the kids we met happened to already be a peer mentor in one of my son’s classes. This may not turn into anything, but it could turn into something.  A familiar face in the hallway would be nice.  A friendly person saying hello to my son at school might make his day.  Maybe someone will even sit with him during lunch.  None of this may happen but at least we’re trying to create an environment where it could happen.

After all, that’s all we can do.

For those of you who have kids on the spectrum, this is part of our social skills plan this year.  In middle school, our son participated in sports.  With the transition to high school, now we’re dealing with cut sports and a kid who doesn’t want to do Cross Country.  So attending the football games needed to be part of our plan.  We’ve got all of the games in the calendar.  Dad is taking our son on his weekends.  I’m taking him on mine.  We may have one of our ABA therapist take him once so our son has a chance to be there without his parents.  This year, we’ll attend.  Next year, who knows?  Maybe he’ll want to sit in the student section.  Fingers crossed.

Birthday Parties on the Autism Spectrum

We had a birthday party for my 15 year old son today.  He was giddy about having 2 friends coming over.  This is the first of his parties where he has truly been engaged in terms of who was going to attend and what we were going to do.  And both of the other moms said this is the first party their boys have ever been invited to that didn’t involve a family member.  This is kinda how it goes when you have a child with special needs.

Over the years, parties for my son have been more of an exercise.  When he was really young, before being diagnosed, I was like many typical young moms.  His birthday was an excuse to get friends and family together to celebrate and reconnect.  As he got older, after he was diagnosed, things became more difficult.  He was overwhelmed by the wrapping paper.  More than one or two presents was too much.  He didn’t want be around too many people for any period of time.  We held the birthday  party more to show him what a birthday party was and try to teach him by having him experience it.

In elementary school, I could invite his entire class.  I’d find some venue that the kids would enjoy that wouldn’t be too much for my son.  I know the kids were attending for the venue and not much more.  But at least they came.  After elementary school, I would have the parties with my son’s social skills groups and we would use the party to teach all of the kids about what you do at birthday parties.

Last year, my son said he didn’t want a party.  I was relieved, especially since he was now too old for his social skills group.  But over the last year, his need for friends has grown.  He started high school in a new school away from the people he knew in middle school so he is really starting over.

Towards the end of his first week of school, he uttered the words, “I don’t have any friends.”

My heart was just broken.  I didn’t know what to do for him.  Then, he sent me this email:

Subject: Hanging with my friends

Is it okay if I hang out with Max and Alex at moms house for my birthday? We can go to the park and play on the playground.  We can watch movies.  We can play video games.  I will let my sister introduce my friends.  It will be boys only downstairs.  It’s the same that as the girls.  I can start playing heavy metal music.  It’s the same thing as when my sister played Taylor Swift.  We can do that next weekend.

Translation:  He wanted a party with his friends like his sister had done the month prior.

The 2 boys he invited had special needs of their own.  He knew the boys from his special education classes in his middle school from the year before.  I contacted his counselor from his school last year who forwarded my email to the moms.  I was thrilled when they responded.  I figured out details with the other moms.  Our challenges:  One of the boys was a flight risk so she would need to be there with him.  The other boy would need some of the same structure that my son required when he was a bit younger.

We set a simple plan and we all set our expectations.  The party may only last 20 minutes.  That’s ok.  At least we tried.  The party plan, which I posted on a small poster for the kids who needed to see a checklist, looked like this:

  1. Eat snacks
  2. Play video games
  3. Open presents
  4. Sing Happy Birthday
  5. Eat pie
  6. Play more video games
  7. Go home

The poster felt overboard but it turned out to be extremely helpful.  My program manager had suggested it after I shared my plans with her and she was right.

Video Game Birthday Party
Birthday Party Scene

The boys ended up having a great time.  And it was wonderful to sit and talk with other moms who understand how hard this can be.  As we sang happy birthday, one mom was taking pictures and the other was taking video.  We all had a few tears welling up in our eyes to see our boys doing something that we just can’t take for granted.

I told them that this is the first party that my son has every really wanted.  And he really needed today.  I’m so grateful that they took a chance and attended.

Life Lessons in New Routines

Established routines are amazing. They keep things running smoothly. They help us remember and help us work more efficiently. But breaking from your routine and trying something new can also be valuable, even when things don’t go very smoothly.

My teenage son with Autism asked if he could be on the middle school tennis team this year. Let’s just say that we survived a season that had more to teach us about life than it did about tennis.

My son isn’t new to sports. He’s been on his school track team for the last 2 seasons. Tennis was different because there were 3 different tennis teams – JV, JVA and JVB. We did what we usually do and put his JVB schedule into our family calendar. But because there were 3 different groups of tennis players doing 3 different things, we rarely had a tournament day go smoothly.

What went wrong?
– Traveling to a school with the wrong team
– Not traveling with his team
– Not understanding tournament cancellations caused by rain/weather conditions
The result: Our son wouldn’t be where we expected to pick him up. And because we weren’t familiar with the schedules for the other 2 teams, it was very difficult to find him.

Because my son is in the 8th grade and heading into high school next year, we wanted to lean on him rather than the school to solve this problem. He has a phone. We taught him to remember to bring it to school every day. He struggles to answer the question: Where are you? We showed him how to use an app called Glympse so he could send us his location in response to that question. It was a very bumpy season but instead of worrying about the tennis part, we focused on the problem solving involved in getting lost or not being where you thought you were supposed to be. These are life lessons that will serve him well.

I thought I was doing pretty well in terms of rolling with all of this chaos until we hit the last day of the season. It was supposed to be the end of the season party. It was cancelled. I think my son, my afternoon babysitter and I were all pretty exhausted from all of the scrambling that had gone on for the last 6 weeks. On this day when my son was once again stuck at school with nobody around, he took matters into his own hands. He walked home.

Walking home may not seem like a big deal but in our case it was. My son doesn’t attend the school in our neighborhood because it doesn’t have an Autism program. His school is about 7 miles from our home and you must travel along a very dangerous road. How dangerous? Let’s just say there are memorial markers from bike accidents and killed pedestrians all along this road. After figuring out what he had done, it was a mix of relief that he arrived home safely, celebration that he’s so capable, and a very strong message to never do that again!

As we head into basketball season, we’re going to have a 30 minute sit down with the coach and his case manager to figure out any details that may lead to problems like the ones we had during tennis season. And we have a few new programs we’re adding to his ABA Therapy routine that focus on problem solving that will help him in future situations like we had with tennis.

If we had never signed up for tennis, our smooth routine would have given us a false sense that things were going better than they were. This experience has opened our eyes to new things we need to teach our son. And now we’re ready to tackle these challenges together.

Helping Kids to Manage Their Own Schedule

School is officially underway.  As I sat in my 2nd Curriculum Night of the week, I breathed a bit of a sigh of relief.  It’s my 3rd year in both my daughter’s elementary school and my son’s middle school.  I know the routine.  I understand how the special ed program at the middle school is supporting my son’s IEP and how it ties in with our Autism program at home.  Next year, more heavy lifting as my daughter enters a middle school I don’t know (as my son is at a different school that has an Autism program) and my son enters high school.  Yikes!

The topics I blog about often focus on how I manage our family calendar.  More and more, I’m trying to teach my kids how to manage their own schedule.  It’s a skill they need to learn.  And as I shift responsibility from me to them, it helps me focus more on my career as needed.

This year, my son is on the tennis team for the first time.  Instead of emailing the coach for the schedule, I’ve been pushing my son to bring the schedule to me.  This has been hard for me.  After 2 weeks of practice, tournaments had to be starting soon.  But I trust my son can problem solve if something goes wrong.  Well, we tested that today.

4:54 pm, a very alarming text message from my babysitter (and new babysitter in training who starts next week) came in:

Tennis Text

OK, I admit I felt some panic first. 🙂  But logic quickly found me and I thought:  “the first tennis tournament is today”.

My resilient babysitter found someone and got the information on which school the tournament was at.  It happened to be the school closests to where I was so I headed over.

As I reached the school, the coach and remaining kids were leaving the tournament.  I introduced myself to the coach and turned to my son and said, “You’re in trouble.”

I turned back to the coach and asked him if he had a schedule.  He told me he sent one home with the kids yesterday.  I tunred back to my son as he was pulling the schedule out of his backpack.  “You needed to give me the schedule.  We went to your school and when you weren’t there, we were VERY worried.  I’ve been asking you for your schedule all week.  This is why you need to give me the schedule.”

When my son and I got home, we put the tournaments into our family calendar so he could see it on his phone and we talked some more about why he needs to show me papers from school — an ongoing problem that I think MANY parents face.

Needless to say, it was a rocky afternoon but mistakes are moments we learn from.  I think my son understands the worry he caused.  And if his current track record is a good indicator of the future, he won’t make this mistake again. 🙂  And we’re now set up to manage the crazy logistics of the tennis team schedule.

My Son’s Autism Makes Me a Better Mom

Mother’s Day is here.  And every year, this “holiday” is always a time when I remember why I’m so grateful that I have a son who has Autism.

Grateful?  Yes, grateful.  Through all of the challenges we’ve already faced and the unknown that lies ahead, I feel grateful.  If it wasn’t for my son and this different world we find ourselves in, I think I would have been a TERRIBLE mother.  Let me explain.

Root problems:  I’m a control freak, a perfectionist.  I’m convinced that if I’d had typical children, I would have tried to control everything and expect perfection in everything.  And I would have made myself and my family miserable in the process.  My son has given me so many gifts through these challenges.  I’ll just describe a few.

Forget Perfection

When my son was a toddler, “perfection” was the opposite of the world I was living in.  One of the biggest challenges that I had to overcome was letting go of what others thought of me.  For example, I remember being in a child’s furniture store.  Early on, I got very good at entering a new place and finding the “triggers” that would set my son off so I could try to avoid them.  But I wasn’t always successful.  We walked into the store and I saw a wooden train set on a child size table.  There was another little boy playing with it.  I knew my son would barge in, take over and make this kid cry.  OR, if this kids was bold enough to stand up for himself, my son would have a melt down.  We successfully avoided the train table and moved to the back of the store.  I watched my son like a hawk but during a split second distraction, he found his way to the table.  He tried to grab the train.  The parents of the child were annoyed.  I intervened, calmly saying, “this little boy was playing with this first”.  Let the melt down begin!

At this point in my journey as a mother of a child with Autism, I’d already given up the notion that I would ever be the perfect parent of the perfect child.  I adjusted my goal to this:  I will be a parent who is handling my situation the very best that I can.  If other people see me as out of control as my son, judgment will come.  But if they see that I’m handling a difficult situation the best way possible, I may get empathy instead.

The parents of the little boy with the train actually wanted to give the train over to my son.  I calmly picked up my son, tantrum and all, and said, “Thank you so much but I don’t want to reward his bad behavior by letting him have the train.”  I remained calm and I left the store.  People turned to see this screaming child.  My job was to stay in control and be calm.

Believe

I’m a planner.  I’m a program manager.  I think if I had typical kids, I would have had “a plan” for them as well.  Early on, many professionals told me of things that my son would never be able to do.  And this information was just not acceptable to me.  I couldn’t make a “life plan” on something so negative.  Coming from my project manager perspective, I plan projects, identify risks and come up with mitigation plans.  As I looked at my son’s projected future, I was overwhelmed.

I had to throw out any semblance of having a plan and just take things one day at a time.  “He’ll never learn to read.”  Well, we need to try.  One day at a time.  He not only reads but he communicates with me via text message now.  “He may never be independent.”  As I write this, he just started a load of his own laundry.  He gets up to his own alarm, prepares his own lunches, and gets himself to his own school bus on time.  “A main stream classroom may not be enough. He may need to attend a special school for kids with Autism.” He’s in a regular middle school, managing a schedule of 6 classes with 6 different teachers on his own.  He can use a calendar, follow a schedule and learn routines.  Sure, many of those classes are special education classes but Guitar and PE are typical classes that are opportunities for him to be around typical peers, learn from them and be successful. We set a goal and we BELIEVE he will get there.  If you don’t believe something will happen, it won’t.  Sure, we’ve had failures.  But we’ve had far more successes.

Do Your Best

My son has Autism.  My daughter has dyslexia.  4.0’s and straight A’s are likely NOT part of our future.  So we focus on doing our best.  Math tests, piano recitals, guitar recitals, book reports.  We focus on doing our best.  And then when the grades come, if we know we did our best, we celebrate it.  And then talk about how we can do better next time.  And great grades DO come every now and then.

I must admit, when I’m around a parent in a more “typical” situation who is getting upset with the school or a teacher (as opposed to their child) because their child got a B+ instead of an A, or because their child didn’t get the lead in the school play, I feel bad for them.  Have they lost sight of the bigger picture because of this crazy world that we live in?  Parents of typical kids have some crazy and unrealistic pressures on them.  I can’t be part of that world so I’m not swallowed up by it.  Typical parents have to work hard to NOT be swallowed alive by it.

I’ll always be a control freak and long for perfection.  I’ll always wish I had a long term plan I was working towards.  But the severity of dealing with Autism was what I needed to get some perspective, to get a clue, to focus on today and appreciate the successes as they come.  And I’m a better person for it.  I’m so thankful to be a mom, for all the things my children teach me, everyday.

Happy Mother’s Day