Yelling at Your Kids

Ok, you parents out there, are there any of you who never yell at their kids?  That was a rhetorical question.  If that's you, I don't want to know.

Actually, there was a time when I did wonder how mature, thoughtful, spiritual people could ever yell at their kids.  When Josh was about three years old, I remember talking to a fellow mom who was really struggling with yelling at her kids.  She was a little depressed and her husband travelled a lot.  She confided in me, assuming that all parents struggle with yelling at their kids, or losing their patience in their own way, now and then.  At that moment, I realized (but didn't say to my friend) that I had never yelled at Josh.  Sure, I cried, I despaired, I stressed, and I yelled at my husband but I never yelled at Josh.  It seemed impossible to yell at a severely intellectually disabled child.  Yes, he frustrated me plenty but he has such an aura of not being able to help himself that I found it easier to not let my frustration out on him.  And not having ever yelled at my only child, it was easy to think that I was just not "a yeller" and never would be.  After all I loved my child and was committed to compassionate, sensitive parenting in a safe, calm environment.

Then I had typically developing children.

My daughters are lovely people.  They are bright, charming and often delightful.  However, typically developing children have "normal" characteristics that Josh just never developed.  They try to manipulate situations.  They experiment with lying.  They speak disrespectfully.  They blame and compete with each other.  It turns out that these are things that take quite a bit of intellectual capacity to be able to do.

I've realized these are some of the things that really push my buttons and cause me to lose my cool when I am stressed. I am definitely no longer someone who has never yelled at their kids.  I don't think I'm a chronic, out-of-control yeller but I definitely could work on my tone just as much as my girls need to work on theirs.

Recently, I've been trying something that seems to be helping me.  I just respond to everything they say with "I'm not sure.  I'm going to have to think about that."  Or I just say, "I don't know."

"Mommy, you promised that we could watch TV!"

"I'm not sure."

"Moooommmm, Hope took my toy!  I want it back!"

"I don't know...."

Jim and Dr. Charles Fey, of the Love and Logic institute, call it "going brain dead" and it's one of the strategies that they suggest to help parents to stay calm in the midst of stressful situations.  They tell you to find a simple, neutral mantra like "that's so sad" and just say it over and over again, especially if your child is trying to draw you into arguing with them.

My girls don't love it when I respond that way but at least I am not adding my own emotional fuel to the fire.  It creates some space and some time for everyone (including me) to mellow out and not argue or yell.  Most times, coming up with a good argument only amps the situation more whereas a statement like "I don't know" slows things down in a helpful way.

I think that it's ironic that what I am finding useful in my parenting to me is to become a little bit like Josh and be intellectually impaired (or at least, disengaged) so that I might be emotionally wiser.  And the truth is, when things are heated, I often really don't know what to say or do.  But I do know that creating a brain break for all of us is a gift.

Everyone Else

It all began as a simple conversation about summer camps for kids with special needs.  The other moms that were standing around with me at the birthday party for a child in Josh's special education class began sharing about various day camps for special needs kids that they had absolutely loved.  When I asked more about them I realized why I had not tried them.  These camps were way beyond my price range.

This should not have surprised me because all of our kids are 1:1 type of kids.  That is, they each need a full time, dedicated adult to be around them at all times.  Our kids can't be at regular camps where they have a teen counselor for every 5 or 8 or 10 kids.  No, many of our kids have seizures or would wander off or would have no way of participating in most activities without constant attention and guidance.  Higher ratio of adult to kid means higher cost.

In that moment, I realized that there are a lot of resources out there for kids like Josh.  I just can't afford them.  And these moms could.  I looked around and realized that every child at this party had come with a parent and a full time nanny.  One boy had come with two nannies (one for himself and one for his typically developing sibling).  I started imagining the freedom that I could have if I had a full time nanny.  And a nanny for Josh's sisters. . . what would THAT be like?

Among the guests at the party were the aides or therapists from the school classroom.  Apparently, the birthday girl's family had hired several of them to work with her at home, for private pay.  I had no idea that you could do that but I could guess that their time came at a significant (for us) cost.

I looked around the house that belonged to the family that was hosting the party and realized that it was a lovely, lovely home.  I heard that they were in the midst of moving to a larger (probably lovelier) home in our same city.  I saw the nice cars that the other guests drove to this party and imagined that they, too, lived in lovely, spacious homes where their children experienced excellent developmental therapies in tidy, well-organized rooms.

My attention turned to how these moms were dressed.  Their clothes were expensive and stylish.  Somehow, they seemed to have had time to do their hair and put on make up (maybe while those nannies were watching their children?)  I glanced at a mirror momentarily while following Josh around the house.   The tired looking person who looked back at me was wearing a stained t-shirt and $5 flip flops. Her ponytail begged to be redone.

It was in this context that I started down the path of covetous thinking.  Specifically, I began to entertain thoughts like, "Everyone else has a lot more help with their kids than I do."  I began to suspect that "everyone else" can afford developmentally fantastic camps for their special needs kids and that "everyone else" must have plenty of space and resources to take care of yourself and look fabulous at all times.

Now, the problem with "everyone else" thinking is that it's usually formed in the midst of jealousy of a specific group of people that you are focused on and without very much perspective on the bigger picture.  For example, do I really think that all parents of special needs kids have plenty of help?  Does every family have a lovely, spacious home?  Of course not!  In fact, not every family in Josh's class has tons of resources.  It just happened that the folks who had gathered at this party did.

When I am in my right mind, I know that I have been blessed with a lot of support and resources.  It's like when my girls come home and declare that "everyone else" is going to Hawaii or Disneyland for spring break.  There is no objectivity, only desire together with a sense of having been slighted and a good dose of ungratefulness.  Also, there is the refusal to consider and factor in the people who have more suffering and fewer blessings than we do.

Our hearts get to the place of wanting things that others have and we add fuel to the fire by believing, even temporarily, that "everyone else" has them.  The fruit of this, of course, is unhappiness and self pity.  Have you ever hung out with a bitter person who is convinced that they always get the short end of the stick and that "everyone else" has it better?  Not fun, I tell you.  Personally, I'd rather dig ditches in the hot sun.  God, please don't let me be like that!

So, today I am purging myself of "everyone else" thinking.  I am asking God to help me to accept that my life is my life and that He knows what He is doing in laying down the boundaries of my life in the right places.  I am going to continue to put my all into making my life what I want it to be but I don't want to be distracted by (my perspective on) the lives of other people.  I want to be a joyful, grateful person and I'm convinced that covetousness and comparison are not my friends in that journey.

What's your thing that you are tempted to think that "everyone else" has?  How do you need to lay it down today?

Battling Fear

As I write this, my husband is driving Joshua to the emergency room.  Josh has had a fever off and on for two days but this evening he started throwing up and could not keep his meds down.  Josh has a diabetes-like disorder (called panhypopituitarism) which necessitates that he takes a shot and many pills every day, throughout the day.  If he is not able to keep his pills down, he has to be taken to the hospital so that he can get them via an IV.  Thus, we are not allowed to ever be very far from a hospital.  No camping in the backwoods for our family... ever.

I am at home with my girls, with my cell phone charged and close, waiting for a call.  How am I doing?  I realize as I mechanically do some laundry that I am filled with fear.  Dark scenarios of something really bad happening are shooting through my adrenaline filled brain.  I think about how if he dies tonight, my last interaction with my son will be him explosively throwing up all over me.  Was I compassionate to him in the moment?  Was I mean because I was stressed?  I can't remember.

Why do I go there?  Why does a bout of mere fever and vomiting lead me to thoughts about my son's death?

One reason is that when Josh was first diagnosed with Septo-Optic Dysplasia, his primary diagnosis, we asked a service provider if this was something that could threaten his life.

"Has anyone died of this?" we asked.

The woman was taken aback by our question but answered us honestly. She had recently heard of another young child with Septo-Optic Dysplasia who had passed away because she had the flu, was not able to keep her meds down, and had an adrenal crisis.  It's hard to forget stories like that.

I think that the other reason that I am filled with fear is that all parents struggle with fear about our children.  They are these phenomenally precious, wonderful gifts in our lives and we are responsible to keep them alive (and then some).  Something terrible happening to our children is unfathomable but it seems like there is a role for fear in that it helps us to wake up and forces us to give our best to protecting them.

Yet, no parent can live in fear for the long term.  It makes us crazy, cranky and gives us ulcers.  Ultimately, I think it keeps us from being good parents.  At some point, we have to put fear to bed and snuggle up with trust.  What do we put our trust in?  Right now I am trying really hard to put my trust in a God who loves me and loves my son more than I could possibly imagine.  Secondly, I'm choosing to trust that my husband will take the right steps in advocating for Josh and explaining his really complicated diagnoses to the staff at the ER.  Finally, I am trusting that being a good parent does not depend on my being constantly anxious, perfect and vigilant but in doing the best job that I can do according to who God has made me to be.

Well, okay.  Those are my thoughts for this moment.  Now, I'm going to go back to the mountain of laundry.

Being Defensive and Saving the Planet

A high school girl with the biggest blue eyes I had ever seen, accentuated with a massive amount of black mascara, walked over to me with a desperate, serious look on her face. Her ponytail bobbed up and down and she walked over to my car with a quick determination.  I had been on the phone with my mother so I quickly signed off with her and turned my car on so that I could roll down my electronically powered window to see what was the matter.  She looked like she needed my help.

"Excuse me, were you idling your car?"

"What?"  I replied, confused.

"Your car.  Were you sitting here with it on?"

"Uh, I don't think so.  I think I just left my lights on.  Well, I'm not sure. . . Why?"

She took a quick breath and said, with utter conviction, "Because idling cars, especially near schools, is a horrible cause of pollution and it's so avoidable and it looked like you were just sitting her with your car on and I just wanted to ask if you could turn it off if you are going to sit here because, like, I really care about the planet.  I mean, you could also ride your bike to pick up your kids, right?"

In the span of about 2 seconds, the following speech went through my mind.  "Listen Missy.  You have no idea about my life.  Do you know what happens when I walk or bike to pick up my girls at this school in the afternoons?  I will be late to pick up my autistic son off his bus back at my house and he will be a screaming mess and will be hitting himself on his head or biting his hand until it bleeds."

"Um.  O-k.  I don't think I was idling my car . . ." was what came out of my mouth.

Perky-enviro girl and I stood there looking at each other, awkwardly and with unspoken hostility.  We were definitely not connecting.  She asked me to just "keep it in mind"and bounced back across the street.

Yes, I felt defensive.  I was being talked down to by a person at least two and a half decades younger than me.  This girl had taken action on her convictions and, for that, I was a little bit proud of her in the midst of being massively annoyed.  But the larger emotional reality was that she had judged me without knowing anything about the context of my life.  And she started with an assumption that she had correctly observed that I had been idling my car, which I was pretty sure I had not been doing.

This is why judgemental evangelism of any sort does not work.  When people feel wrongly and negatively evaluated, they don't tend to respond well.  Why don't people of conviction understand that?

On a deeper level, I realized that this girl had tapped into a current of guilt in me.  I do actually care about how car emissions are effecting the environment.  I want to be free to walk or bike my girls to school.  I don't want to be ruled by the fear of my son's strange reactions.  Yet, I'm stuck in this ridiculous reality of driving 8 blocks down the street every afternoon so that I can avoid a Josh tantrum situation.  Sometimes I see parents who are biking, who live much further away from our school than I do and I feel sad and embarrassed.  I want to explain to them, as I wanted to explain to this teenager, that I have to drive or else my child with special needs will start his afternoon off with having a big, sad problem coming off of the bus and I just can't have that right now.  So, yes, I feel guilty about driving my girls home from school but I have no good alternative right now.

The other day Hope informed me that we should never drive our car anywhere anymore because we are killing the penguins by using cars.  Her class had been doing a unit on penguins and had talked about how global warming was affecting their habitat.  This was very upsetting to her.  I told her, "Sweetie, sometimes we just need to do what we need to do.  That doesn't mean that we don't care about the earth and about penguins but we need to try to be mindful of things while living in the culture that we're in.  In our culture, we drive cars and, sometimes, I have to drive mine."  Hope seemed to accept this explanation, especially since we were driving to the library to pick up a book that she was waiting for.

The morning after the encounter with the teenager, I chose to have us ride bikes.  That afternoon, as expected, we were late coming back to meet Josh's bus, which was already waiting for us outside of my house (idling it's large engine).  While the bus driver seemed irritated at our tardiness, Josh was oddly and deliriously happy.  He was busy clapping his hands like crazy and laughing.

"Want ice cream.  Want popsicle." he said, as I rushed to get him off the bus.

"Yes, Josh."  I replied, deciding to enter into the moment of grace.  "Today there will be popsicles for everyone."

Josh the Bridge

Two homeless people that I recognized from church were drinking coffee and smoking outside of the coffee shop that I had just walked out of.  My van was parked right in front of them so I stopped and said, "hello".  One of them recognized me and introduced me to his friend.  I thought that it was very interesting that, despite the fact that I am married to the lead pastor, he referred to me as "the mom of that boy... you've probably seen him around church".

His friend immediately knew who he was talking about.  "Oh yeah.  I've seen him.  He . . . uh, whaddaya call it?  He walks in circles, right?"

"He has autism."  I offered, trying to be helpful.

"Right, right.  Autism."

They were both very pleased to have the right word and did not seem at all uncomfortable about talking about my son.  They asked how he was doing and offered the observation that he seemed to be more calm on Sunday mornings.  We had a lengthy, pleasant conversation about special needs, and kids and our community.  To them, knowing that I was Joshua's mom seemed to make them more at ease with me, like we had an unspoken understanding of what it is to have hardship in your life.  It was a surprisingly warm and connective conversation given how little we knew each other and how dissimilar our lives are in many ways.

I've noticed that Josh has this effect on many others who live a different sort of life than most people.  A young teen in our church, who is a foster child, seems to have a natural affinity for Josh and offers to help out with him on Sunday mornings whenever he can.  Another woman, who has mental health issues, has approached me and has told me that she feels like she relates to Josh in having a different kind of brain.  She tells me that she sees the love of God in Josh as she watches him interact around the bagel and doughnut table.

For me, Josh is like a bridge to many different types of people, especially people who are marginalized.  It's almost as if I have some sort of instant credibility or trust that I, too, live an alternative and difficult life even though I'm a minivan driving suburban mom. This brings a richness and a diversity of people to my life that I treasure.

Enrichment and the Josh Factor

The other day, I was trying to schedule a playdate for my 7 year old daughter with a friend from her class at school.  The conversation went like this:

"How about Monday?"

"Oh, Monday is Jenny's voice class rehearsal.  She can't miss because she has a performance this weekend."

"And Tuesday?"

"Hmmm.  Tuesday is Girl Scouts then skating . . . and I know that we both have Mandarin after school on Wednesday."

"How about if I drop her off after piano on Thursday?"

"Sorry, Hope's brother has autism therapy on Thursday."

"Darn, we have something on Friday afternoon this week.  How about next week?"

 I live in a community where many of the children are engaged in dizzying array of "enriching activities".  The city in which I live is fairly affluent and filled with highly talented and educated people.  We also attend a school where the majority of the parents are really involved in the school.  The result of such realities is that parents are highly invested in the enrichment of their kids.  It is not uncommon for children to have at least one enriching activity every day of the week.

Foreign languages, sports, social clubs, music lessons.  These things often begin in kindergarten and only get more intense as kids grow older.  By the later elementary or middle school years, many kids choose into a more high level, competitive version of their activity such as travel teams for sports or city orchestras.  In order to get there by, say, age 10, the child has to begin those activities (with some amount of commitment and focus) by early elementary school.  The other day, Hope said to me that she wanted to become like Gaby Douglass, her hero.  I had the cynical (though unspoken) thought, "It's too late for you, kid.  You're already in first grade and you don't even take gynmastics lessons."

I'm definitely not immune to the temptation and the allure of lots of enriching activities for my kids.  Who doesn't want their child to be multi-talented and super skilled?  Besides, music, sports, languages . . . these are good for brain development and emotional health, right?

Yes, but the result can be a culture of very entitled and exhausted kids.  

The other day, I heard one kid from my daughter's class say with a sad frown on his face, "I don't want to do basketball and baseball.  I'm doing too many sports."  We've all heard about kids who have acquired a lot of skills but haven't had the time to just lay around, be bored, and be forced to be creative.  

But here's the thing that I've realized.  My girls have a secret weapon to battle the culture of over-scheduledness and over-enrichment: their brother.

The reality is that Joshua simply cannot handle a complicated schedule.  I have tried dragging Josh along to take the girls to mid-week swimming or gymnastics lessons.  Honestly, it's a gamble.  There are days where he is relatively compliant (especially if I bring along plenty of snacks).  However, there days when he will get completely upset and throw a huge tantrum in lobby of the YMCA.  Or there was also the day at the library when we were taking too long so Josh went up to a random middle aged lady and slapped her on her bottom.  (She was pissed and didn't speak enough English to understand my frantic explanation.)

Josh also has more than his share of doctors appointments, which the girls often have to come along for.  Finally, Josh has autism therapy at home several afternoons a week which means that we can't leave the house.

So, the reality is that my girls do far fewer scheduled activities than most of their peers.  They do not play piano.  We have never gone ice skating.  We choose one sport a year.  There have been many days where I feel very guilty about this.  However, today, I am realizing that this is a blessing.  The highlight of our afternoon today was sitting around and eating popsicles in our driveway.  We greeted people who walked by and enjoyed watching Josh walk in circles.  We read books and checked to see how our pumpkin seedlings are growing. Hope and Anna are very good at making up stories while playing with mud in the backyard.  They also play games like "squashing up ladybugs to make jam" (a pretend game).  It's not super duper "enriching" but I'm trusting that this is the reality of the life that God has given to us and it's good.

The Magic of Joshua's Classroom

My son's classroom is a magical, beautiful, loud, chaotic, overwhelming and profound place.  8 adults (an amazing teacher and 7 assistants) spend the day together trying to educate 9 children   who have varying disabilities. Most of these children are non-verbal and several are non-ambulatory.  Most of them wear diapers. Two of them have many seizures throughout the day. Each of them have an IEP (individualized education plan) so the cirriculum seems to be as diverse and complex as each of these kids.  A myriad of specialists, such as an occupational therapist, a speech therapist, an adaptive physical education teacher, a vision therapist, an orientation and mobility specialist and a music therapist, come in and out of the class (or pull kids out to work in other rooms) at various points in the day.

Conducting this crazy symphony is Suzanne, the teacher. Suzanne is one of the most hard working, dedicated teachers I have ever encountered.  I get emails from her at 5:45am and I know that she's already at work.  Not only does she know what's going on for each child, she also manages and trains each of the aides in the class.  Everyone agrees that she does a fabulous job.  Personally, I think that special education teachers deserve an all-expense paid trip to Hawaii every summer.  I wish that our society valued these hard working maestros appropriately.

The most amazing thing to me is that, in the midst of such high challenges, these kids are, indeed, learning. Life skills are being acquired.  A caring community has formed.  Milestones are celebrated together.  A routine has been developed and embraced.  Josh has come such a long way this year in terms of acquiring many skills for learning and independence.  Every morning, he comes in, puts his jacket and backpack away in his cubby, puts his lunchbox on a cart, and checks his daily schedule so he can get to work.  A well-run special education class room is a thing of mysterious beauty.

A few weeks ago, one of the aides, Junior, became a US citizen so the class threw him a party.  All of the kids dressed in red, white and blue.  I don't think that the kids quite understood what was going on but they were excited and happy.  I think that the kids pick up on the sense of belonging and unity that pervades this class.

Soon, I will attend a meeting to plan Joshua's transition to middle school next year (!)  As I reflect on the education that Josh has received this year, I find myself filled with gratefulness.