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.

To Do: Take Care of Yourself

Ever find yourself overwhelmed, tired, barely keeping up?  For myself, it’s easy to just brush it off and blame it on the facts of life that are part of being a working parent.  But it’s important to look a little deeper and make sure it isn’t something else.

About 6 weeks ago, I finally recognized that the way I was feeling just couldn’t be the new normal.  I’m terrible about going to see my doctor.  Why?  Heaven forbid I allow myself to take time away from work.  (I do this to myself.  This has nothing to do with where I work or who my manager is.)  My doctor recently opened a clinic that is open until 10pm so one day after work, I went in.

Well, something was wrong.  Nothing big.  Nothing life threatening but something was definitely wrong.  My issue was causing me to be extremely anemic.  And when you’re anemic, you’re tired.  VERY tired.  The kind of tired that makes it incredibly hard to get up in the morning, give your kids the attention they need and be a star at work.

The root cause of my anemia has been addressed and I’m on a 3 month iron regimen that will eventually get my system back to normal.  As my energy is starting to return, I’m feeling more equipped to give my family what they need, perform at work and enjoy the ride!

So for all those busy parents out there who may be feeling “off”, when was the last time you had a check up with your doctor?  It may be worth the trip.  As we are so busy taking care of our families, we need to remember to take care of ourselves, too.

Making the Summer Day Camp Commitment

A friend of mine signed up her 10 year old daughter, Emma, for a one week soccer camp.  But Emma hates sports.  So why on earth would she do such a thing?!

Somewhere along the way, between working full time, taking care of her aging parents, along with a divorce, years of being a single parent and then getting re-married, the idea of getting Emma involved in sports was lost.

A few months back, Emma stated, “I don’t do sports.”

In that moment, my friend felt like she’d really failed Emma.  It’s not that being part of a sport in and of itself is the most important thing.  It just made her sad to think that at only 10 years of age, her daughter had already ruled out this entire arena of life that can be so very fulfilling.

When summer camp sign ups came along, my friend sat her daughter down and talked to her about what they could do this summer in terms of camp options.  She told her, “I want you to try out some sports camps, just to see what it’s like.  You can’t say you don’t like something that you’ve never tried.”  Emma reluctantly agreed.

A week of soccer camp was up first.  As the day approached, Emma was dreading it.  She even cried a couple of times over this.  My friend bought Emma a pink pair of shoes she can actually run in along with some athletic gear.  Emma already loves to shop, just like her mom, and this seemed to take the edge off.

Well, today was the first day.  My friend dropped Emma off.  After the drop off, my friend texted me, “Looked like 10-12 kids.  All boys but one.  It might be a tough evening.”

My heart ached for my friend and for Emma.  At least there was one other girl.  But I knew my friend would spend a day of second guessing herself while trying to stay focused at work.

At lunch, I touched based with my friend to see how she was doing.  She recognized that it’s one week.  It’s only 5 days.  There are children all over this world who truly suffer.  Being forced to attend soccer camp for 5 days cannot be considered suffering.  And maybe a little suffering will build some character?  Needless to say, it had already a long day for her.

Just before the afternoon sitter was to pick up Emma, her mom texted Emma and asked her daughter to text a selfie with an update on her day.  20 minutes later, a selfie of a smiling girl,

“My eyes burn!! I forgot my water bottle today too!! It was also tiring and fun”

My friend was elated, “Fun!  She had fun.  I’m so glad she had fun.  I’m so relieved she had fun!”

Her goal was for Emma to SEE herself as a girl who can do sports.  Over dinner, Emma was non-stop chatter which isn’t typical for her.  She talked all about the things she had learned and how someone said she was a good kicker and on and on.  Emma found a water bottle and her mom got Emma some sunscreen that wouldn’t be so hard on her eyes when she got sweaty again tomorrow.  Emma picked out her outfit for the next day and even packed her lunch!

My friend didn’t know where this may lead but this process brought back some options today that had been ruled out a few months ago.  All thanks to summer day camps and being willing to make a commitment…for 5 full days.

On deck for Emma this summer:  Volleyball camp, Biking/Cycling Camp, Science Camp, some summer school, a couple of vacations and even one week of more traditional day camp.  I’m excited to see how Emma and her mom comes out the other side of this.

‘Cause I Want to Decide Between Survival and Bliss

 

Great lyrics from a great song* that has helped me through a pretty big decision about our daughter’s education.

‘Cause I want to decide between survival and bliss

And though I know who I’m not, I still don’t know who I am

But I know I won’t keep on playing the victim

We’ve decided to pull our daughter out of public school and have her attend a private school that focuses on teaching children who are challenged with Dyslexia; children who are visual learners.

We’ve figured out who we are not.  She is not a verbal learner.  We’ve been limping along for the last 2 years.  Our daughter was put on a 504 plan in the 3rd grade.  This helped.  Extra time on tests and modified assignments seemed to get her through.  Her 5th grade year has been a lot tougher – and her grades reflected the reality that I was witnessing in the daily struggles of homework.

When that first report card came home, we decided to keep our daughter home from her own parent teacher conference so we could have a candid conversation about how poorly she was showing up on the report card.  This lead to evaluations and more evidence of her learning style and the impact it is having.  2 key data points popped out at me:

1. 99th percentile for math concepts such as geometry–anything truly conceptual, spacial or visual

2. 8th percentile for anything fluency related – reading, writing, math

If a concept is taught using visual aids, no problem.  But if a concept is taught with verbal instruction, which is exactly how a 5th grade classroom of 30 kids is set up, disaster.  As my daughter would work on assignments, the teacher HAD provided a checklist of the elements that needed to be covered or a worksheet with a written summary of the assignment.  But when asked about the details that had been explained in class about each element, all was hazy.  The devil is in the details and those details were being lost.

The impact on our daughter went well beyond the homework table or the classroom.  Her confidence was destroyed.  She withdrew more and more.  This resulted in problems with developing healthy friendships at school and the inability to ask her teachers or her peers for help when she needed it.  She was falling victim to a vicious cycle.

Evaluations brought us to the conclusion that an IEP would be required. I’ve been managing an IEP for my son for over 10 years.  Honestly, I didn’t have it in me to manage another one.  We’ve been able to make things work for him and he is thriving.  But as I looked at what this would mean for my daughter, it just didn’t make sense.

This bright, creative young lady who can make her own dolls clothes without a pattern and put a piece of furniture from IKEA together with little assistance is in a school system that treats her learning style as a problem.  They are not set up to understand or handle the fact that it’s just different.

And this is what the decision came down to.  Do we spend the next few years just “surviving” within the school system and feeling like a victim of it?  Or do we choose another path where she has the opportunity to potentially thrive, to find some “bliss” in her education?

Having BOTH of my children drop out of the typical school system is daunting, overwhelming.  But for the first time in a long time, I am optimistic for her and her future.

She had the opportunity to attend her new school before we made our final decision.  In the car ride home, I saw an optimism in her that I haven’t seen in a while.  She said the other kids “read out loud like her and struggled with a few words here and there like her”.  At her other school, as her turn would approach to read out loud, she said she would get very nervous, so nervous that she would start sweating.  Several other examples of the anxiety she experiences every day at school came pouring out of her.  And she believes she won’t experience this in her new school and that she will be able to learn a lot.

I’m grateful that I have the ability to work with my ex-husband to provide this opportunity for our daughter.  And I’m glad my husband and I have the ability to handle the expense and extra logistics involved.  We are lucky.  I hope other kids in this situation can be as lucky as we are.

*song: Precious Illusions by Alanis Morissette

An Automated Home on a Budget

I love the idea and promise of having an automated home.  But when you start really looking into it, it’s pretty expensive and the more affordable options are hard to set up and clunky to use at best.  But there are still some easy, affordable things you can do that will make your home feel a bit more automated – and they will help you manage your home and family as well.

Outlet Timers

I set a few lights here and there on timers.  When I come home from work, I’m never walking into a dark house.  This is not only welcoming, but it’s a security feature.  Even if I’m traveling for work and my kids are with their dad, my house still appears as if I’m home.

I also set up a timer on a small light in my bedroom.  It comes on right around the time my alarm is set to go off.  I struggle to get myself up at 5:30am.  The extra light helps, even if it’s just a little.  This is also a great idea for your teenager who needs to also get up at the crack of dawn.  There are also outlets that can connect to your WiFi and be set to a schedule so you don’t need to remember to turn off the light so you can sleep in on Saturday morning.

Appliances with Timers

When my kids were really young, I would get up and get myself ready first so I had the time I needed to focus on them, get us all breakfast and get all of us out the door on time.  I’d set up my coffee maker the night before and set the timer for the time when I really needed to be ready and the kids needed to get up.  It helped keep my on schedule in the morning as the sound of the coffee grinder basically said, “wrap it up and get these kids out of bed”.  And it felt like someone made me my morning coffee since I didn’t need to do anything but pour it into the cup since I’d done all the work the night before.

If you really want to over achieve, set up your bread maker to have fresh bread ready to go right when the coffee is made!  This is especially nice on a Sunday morning when you need to get up early but have a little extra time to enjoy a more leisurely breakfast.

Crocks pots are also a life saver for a working parent.  Walking in the door to warm lights and the smell of dinner ready to go after a very long day is more than welcome.

Using the timer on your washing machine is also a great trick to keeping the laundry moving along.  I don’t know about you, but I had this terrible habit of starting laundry before leaving for work (knowing that you should never do this in the event of some water disaster) and then forgetting the wet clothes for a day or two and needing to start the process all over again.  Now, I set up the clothes in the morning and set the delay start timer so the cycle starts after my sitter is home with the kids but timed to finish a little bit after I arrive home so I hear the “ding” that tells me it’s time to move the clothes into the dryer.

Appliances with Programmable Schedules

A programmable thermostat.  This is an absolute must!  Waking up to a house that is already warmed up.  Saving on utilities while you’re at work and the kids are at school but still coming home to a warm home.  Like I said, if you do nothing else, get this set up.

Sprinkler systems.  I’ve lived in many homes that didn’t have a sprinkler system.  I bought timers that are designed to be set up with a hose.  I set up a water hose and I was set for the summer.  One less chore to remember (until the grass starts to die).  It was a little extra trouble for the front yard since I didn’t want to leave the ugly hoses and sprinklers out but for the backyard, it was a real time (and lawn) saver!

Yes, there’s still a lot of manual process here.  But setting these little systems up smooths out your day more than you’d ever realize, not to mention saves you a lot of time when you need it.  And the smell of freshly brewed coffee in the morning with no work involved isn’t a way to get your day started on the right foot.

 

The Most Important 20 Minutes of the Day

My son had a basketball game today for his middle school team.  He’s on the C team (which comes after the B team which comes after  the A team) so we’re not talking a glamorous, high profile game.  But when I walked into the door, saw his face light up and then proceeded to witness his game and his constant looking over at me, I knew the 20 minutes of play time he got today were the most important 20 minutes of my day.

For working parents, being able to attend these events is hard.  Looking around today, there weren’t that many parents at the game. I’m sure every parent who was NOT in attendance had very good reasons and it had ZERO reflection on how much they love their child.

My son has Autism so communication, verbal communication, is really hard.  He doesn’t like to have conversations.  He’s not capable of sharing his feelings verbally.  When I try to tell him how I feel about him, he doesn’t want to have that conversation either.  As I’m connecting with more and more parents of typical kids, I’ve learned that my teen with Autism isn’t so different than a typical teenage boy.  My ACTIONS need to be the way I tell him how much I care about him.  Today, I was able to tell him I love him by attending his game.  And he was able to tell me that he’s glad I’m his mom.

But making this 20 minutes happen took a lot of planning and preparation.  I’m hoping that sharing how I accomplished this helps another parent get the same 20 minutes I got today.

Block Your Calendar

When I got the basketball schedule, I added the games to my work calendar along with travel time.  This way, when others are trying to schedule time with me, they know that I’m busy during this time so they can find a better time that works for both of us.

Set Expectations

I’ve let my manager and my team know that attending these games is important to me.  I try to structure my work so it’s about what I’m delivering each week rather than how much time I spend at the office.  This helps.  I set goals based on a full workload for the week and then juggle the time as necessary to meet all of my commitments for both work and home.

Carve Out Time

Even when you block your calendar and set expectations, it’s still hard to find the time to do it all.  Sometimes I get up early so I can start on my work day earlier.  Commute time takes up at least 45 minutes each way.  Today, I worked from home and got 90 minutes back.  I got my full workday in AND made it to the game.  I also reduced travel time by staying closer to home for the day.

It Goes Both Ways

Often, spending time at a school event in the afternoon means I need to focus on work in the evening–and miss that time with my family.  I try to use this to teach my kids about trade offs and balance.  I want them to be hard workers when they have jobs.  I want them to see that when I leave work early, that time needs to be made up somewhere.  It’s a good lesson to teach them.

Let’s face it, we’re all very busy.  It’s easy for the pressures of work, meetings, deadlines and commuting to cause us to miss opportunities to really connect with our kids.  But with a little planning and preparation, we’ve got a better chance of catching some of the precious moments before we lose track of where all our time went and our kids grow up faster than we could have ever imagined.

Bring All of Your Calendars into One Place

Do you find yourself having too many calendars?  There’s your work calendar, your family calendar, and maybe even a personal calendar.  Even if you’ve got all of these calendars in electronic form, you can still find yourself in a situation where you need to check in multiple places to make sure you’re free.  And with multiple places to look, mistakes are bound to happen.

It’s pretty easy to bring all of your calendars together on any mobile phone, but it’s hard to see and plan from such a small screen.  Depending on how strict your workplace is, it may be harder to bring all of your calendars together at work.  I just started a job at a company that takes security around personal laptops very seriously.  I can’t install any old app or plug in onto my computer.  When it came to my calendar, this was leaving me very frustrated because I wasn’t allowed to add my personal account to Outlook.  If you’re in the same boat, here’s how you can easily get around this problem.

I’ve got a family calendar in Cozi.  And a personal calendar in Hotmail (Outlook.com). In my case, as I was trying to coordinate my work schedule against something as simple as attending my son’s basketball game or making sure I left work on time for an evening school meeting, I had to check my work calendar, Cozi.com and Outlook.com.  That was just too much for my brain to keep track of in 3 different views.

We’re using Outlook at work.  We happen to be using the 2010 version but what I’m about to describe also works in 2013 or Office 365. From most calendar programs, Google, Outlook.com, Cozi, you can share your calendar as a calendar “feed” or as a link.  This generates a URL that you can use to access this “calendar feed”.

From inside Outlook, under the home tab, choose “Open Calendar”, then choose “From Internet”.

Outlook Open From Internet
Outlook Import Calendar Feed Menu

After this, you’ll get a dialog box that lets you copy the URL you got from your other calendar program.  Once you paste that in, that calendar will be added to your calendar list.  In my case, I’ve got my personal calendar that I named “Doreen Hotmail” and my family calendar from Cozi.

Outlook Calendar List
Outlook Calendar List including Hotmail Calendar

Now, you can see all of your calendars overlay-ed with one another.  This helps you keep from double-booking yourself and helps you more easily manage family commitments against your work commitments.  The best part is that you can keep your work calendar as the “active” calendar and the other calendars really appear to be sitting in the background, not distracting you but helping you avoid creating conflicts across work and home.

Outlook Multiple Calendar View
Multiple Calendars Overlay-ed in Outlook 2010

Note:  I’ve shaded out the names of my kids and co-workers to protect their privacy

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.

Meal Planning with a Magazine

We all know that if we plan our meals ahead of time, we eat healthier and the work week is a lot less hectic.  But this is much easier said than done!  Saturday morning soccer games, Sunday football, and all kinds of weekend activities make it hard to find the time to do meal planning, let alone grocery shopping.

I struggle with this myself sometime so today, I’m trying something new.  I’m already a subscriber to Cooking Light magazine – but any cooking magazine or your favorite website will do.  This morning, I didn’t need to be anywhere until noon and I found myself in a quiet house, kids doing their own thing and a warm cup of coffee in my hand.  I decided to get my meal planning done for the week.

After I picked my meals for the week and captured my list on my favorite phone app, I was on a roll, so I kept going! As I found a recipe that I wanted to eventually make, I just picked a day in my calendar and added it along with info on which magazine and what page it’s on.

I’m hoping that by doing this, next week, when I’m possibly less motivated to get my meal planning done, I’ll see these recipes in my calendar and I have a lot less thinking and planning to do.  I just need to pull my weekly shopping list together.

Also, by capturing the magazine details, I can quickly open up the magazine to look at the recipe.  I love all the recipe apps out there but I keep going back to my recipe magazines and cook books.  There’s something about the paper and not worrying about the screen timing out that I just like.  Call me “old school” I guess.

Here’s to a chaos free week ahead – and healthy dinner on the table after a long day at work!

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.