Tough Parenting Moments

Monday, after school, in a fit of frustration, my son declared, “I am sick of Fremont and Clarmar.  Why can’t I be anyone’s best friend?”

I paused, knowing he can be sensitive, knowing that he had a bad day/week/month, knowing that maybe it will be better tomorrow.  “What happened?”

“Well, sometimes it feels like the kids are mean.  They don’t really want to play with me.  They don’t want me on their team.”

“Why don’t they want you on your team?  Do you think you can relax about rules on the playground?  Can’t you let some rules slide, and it be OK?”  I asked him.  I know he can be hard to get along with.  I understand that playground rules are different from real life rules.  I know the kids have forgotten that he struggles with this, and it makes sense since they are 7.

“I try.  I try to be nice.  I try to change and act like them.  I try to treat them the way they want to be treated, but no one really likes me.”

In that moment, I pause, I want to cry.  I am sad and I am feeling like a terrible mom.  We are constantly helping our son change.  We are teaching him social skills and trying to help him understand how others think.  He works on it daily.  He tries.  Even when he doesn’t ‘get it’ he still tries.  I know kids get frustrated with him at times, and he knows it too.  He is trying and trying.

The thing I feel bad about: When do others have to change?  Why should he go through life wanting and trying to be different to act like someone else?  If we want him to feel good about being a person with Asperger’s, then we have to accept him, quirks and all.  Kids have to accept him, and others do too.  It shouldn’t be a one way road for this 7-year-old.

After my flood of thoughts and pause, I said, “Well if you are treating others the way you want to be treated, then that is all you can do.  You can’t control others and how they treat you, but you can control yourself and how you treat others.  If kids at your school can’t see that, and accept you for WHO YOU ARE, then they are not worth it.  You are a nice boy, who is trying very hard.”

“I wish that was easy,” he sighed.

“Me too, I wish it would get easier, but that is life, Buddy.  It’s just a stinky part of life.”

Upon hearing the word stinky, he smiled and laughed.  Toilet humor took over and our conversation was paused.  However, I can’t stop thinking about it.

I pray that I can successfully guide these two kids through life.  I pray they know they are loved and accepted just the way God made them, without letting their little quirks be excuses.  No one ever said that raising kids was easy, and unfortunately, I don’t think the lessons will get any easier.

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What Aspergers Means to McCartney

On Tuesday, I am going to a special presentation in my son’s classroom.  The guidance counselor is going to teach the class about Aspergers.  Once the counselor is finished, I will get a chance to talk to his class too.  It will be a chance to educate the kids, and let them ask questions.  We are hoping for a better level of understanding amongst his classmates.  Aspergers is invisible; a child with it, appears to be typical, but behaves a little bit differently than other “typical” peers.  While we don’t want Asperger’s to be an excuse for our son, we want others to know some reasons behind his personality.  I have reservations about sharing information that feels private, but I am hopeful that my son will feel more comfortable in his own skin after.

This weekend, McCartney and I discussed what he wanted me to tell his class about his Aspergers.  This is our list:

* His brain works differently than ours.  He knows things that we learn.  For example, no one taught him how to read.  Around 3 years old, he started identifying words like December, Sunday, cat, dog, etc in the grocery store.

* He has to learn things that we all know.  He is learning how socialize with people.  He doesn’t always think to look at a person’s face or body to see what their whole message is.  He often just listens to your words.

* He also had to learn how to use his imagination, where most of us know how to pretend without anyone teaching us.

*  He doesn’t lie, so he assumes others don’t either.  He takes what you say as the truth.  For example, if you are mad at him and say, “I won’t ever play with you again.”  He thinks you REALLY mean it.

* He likes to follow the rules when playing a game.  Rules make sense to him.  He doesn’t understand when kids change the rules to games.  He gets frustrated.

* He can’t always tell when a person is joking.  Often times, he needs time to think about if a person’s words are true or if it’s a joke.

* Because the social world is very complicated, he doesn’t trust people easily.  He often thinks that others are deceiving him on purpose.  We are not trying to confuse him, but he doesn’t always understand that.

* When he is interested in a topic, he wants to know EVERYTHING about it, and will study it until he does.

* He wants to have friends and be included.

I admit, I very nervous about this presentation, but I am open to trying new ideas, when the current ideas aren’t working.

Why it was Time to Tell Our 7 Year-Old about Asperger’s

Yesterday, I received a phone call from the principal at my kids’ school.  My son made a really bad choice at recess, and it landed him in heap of trouble.  He regretted it, but it didn’t take it back, nonetheless.  My first reaction was anger: How could he do that? The anger quickly turned into frustration, worry, and finally empathy.

“The kids call me weird.”  “I don’t have any friends.”  “Why don’t they like me?”  “When will I make a friend at school?”  “Being around the other kids can be so hard!”

Those phrases, that my son has said over and over the past two years, floated around in my head.  I imagined my son, playing at recess, wanting to follow the rules of a schoolyard game.  I imagined the unfair calls, his arguing with the boys, the possible look of glee on the other boys’ faces when they saw that they were a team against my son.  I imagined the loneliness that my son felt in that moment when in the heat of passion he struck out against the boys, which is something he has NEVER done before.  I imagined his immediate regret and the feeling of dread as he walked inside to face the consequences of his bad choice.

I am not condoning misbehavior, or saying my son was right at doing what he did.  Scott and I like peace. We like calm.  We like clear heads.  However, in the middle of the busy playground, where McCartney was overwhelmed, I wanted to understand what would bring him to a place he has never gone before.

As the principal and I talked, I got emotional, I cried.  I tried to explain my son and his history.  I emphasized that this year has to be good, or our family is going to make some serious changes.  I tried to make a professional understand my child and who he is.  I also stated my concerns about his well-being and how he feels at school.  At one point, she didn’t want to hear excuses.  I didn’t care.  “I am not making excuses for my child.  I am explaining him to you and telling you things that I told the principal before.  I am hoping you will hear me,” I replied.

Upon picking up my kids, I had a tough job on my shoulders: I had to discuss this with my son, trying to emphasize that we are not happy with him, while also making sure he understands that he is not alone.  How does one support and discipline at the same time?  It’s not as easy as it sounds.  Oh, it doesn’t sound easy, well it’s even harder than it sounds too.

First, I hugged him and said, “We need to talk.”  I asked for his side of the story.  He told me, his head bowed.  We discussed it and wrote out what else he could have done and how would those things change the outcome of his day?  Second, I asked for his advice on how we should deal with this at home?  He threw the book at himself and came up with consequences far worse than Scott or I would have decided.  Finally, I hugged him again, and told him that I am worried.  I also let him know that I am here for him, I understand, and I am going to do everything I can to help him.  That’s when the tears fell down both of our cheeks and the emotions came out.

Of course, we had scheduled a community service project for an hour after school got out.  People were counting on us, and we showed up.  He served his community with a selfless heart and asked to do it again next week.  He is not a bad person.  He is smart and caring and compassionate, although he does not understand people the way other 7 year-olds do.

Later, Scott and I knew it was time.  Time to tell him that he is NOT weird.  Time to explain to him how amazing his brain is.  We told him, “Did you know there are other people like you that have a hard time understanding social skills?”

No one is like me,” he replied.

“Yes, there are people who have a hard time being with other people and knowing the right thing to say.  They are called people with Asperger’s.  You might have heart the word autism before.  You have Asperger’s.”

“There’s a name for people like me?”  For a second he smiled.  It was time to tell him, that yes, there is a name and that name is NOT weird.

Toys: Sadness and Acceptance

Ah, toys.  If you have known me through the parenting the years, then you know about my big quest as a mother.  You know about the endless searches, Facebook inquiries, status updates, inquiries, and more money than I care to actually add up invested in THE toy that my child will actually play with.  I have said for years, “If we can find the toy that McCartney will play with, I will buy it, no matter how much it costs.”

So, let’s begin with the whole, “If you give a kid a toy, the kid will want to play with the box” myth.  Yes, I said myth.  As a new parent, I thought it was the truth.  Everyone said that was true.  So on his first birthday when my son screamed bloody murder at the loud sound of the wrapping paper being torn and then continued to ignore his toys, my husband and I thought he was being normal.  When he returned to his hours of opening and closing the kitchen cabinets, once again, we thought he was being NORMAL.  Because while kids play with boxes, containers, and other household items, no one told us that they also eventually take their toys into the box or cabinet with them.

Anyway, our journey with toys, it has been some journey the past 7 years.  In his first year of life, toys came and went.  Moosey was his first special toy, given to my son at 6 months and is still with us today.  (In case you were wondering, Moosey is a stuffed moose.)  The rest of the special toys McCartney loved as a baby needed batteries.  Basically, if it had the label Leapfrog on it and was for sale in 2005, my son had it, played with it and loved it.  At some point, my husband and I decided that he needed to be interested in toys that were quiet, or that did not require batteries, and that is when our toy heartbreak began.

Honestly, I don’t know why we decided that.  Was it because we were kids who loved the outdoors and books?  Was it because our house was small and our kids were loud enough?  Was it because doctors were preaching no more than 2 hours of screen time a day or your child is doomed to a life time of obesity? Was it because other kids (including our typical child) were falling love with Legos, blocks, books, Little People, and our child with autism was still drawn to repetitive toys that required academic thinking, but no imagination?  Or was it because despite his quirks, lack of interest in toys, he still did not look and act like any other child with autism that I had ever met so we actually could not, would not and did not accept that he ACTUALLY had the highest form of barely diagnosable autism, and there had to be SOME toy out there on the market that would prove this?

Flash forward, to kindergarten, and he fell in love with Disney.  He  had obsessions with movies, and collected numerous toys from said movies, and spent time reenacting scenes.  He has saved allowances, bought tracks, train sets, action figures, books, games, hundreds of toys, and has wanted an adult to play with him with every. single. one.  Ana tried to play with him, but his play is pretty structured and has lots of rules, so over time, her imagination lost interest.  He would stay busy, but not really.  Toys are not fun alone and he wanted not another kid, but a grown up to play with him.

Along came the sports obsession.  Now, those are some great toys!  This is an obsession that has lasted the longest and that is not going anywhere anytime soon.  He loves sports, all sports.  He talks about sports, plays sports, watches sports, and most of all, dreams about sports.  We sign him up for leagues and we have yet to find a sport he doesn’t REALLY enjoy.  Along comes his birthday, and he BEGS for a basketball hoop. He has a basketball that he plays with quite a bit; he even has an indoor hoop that he has spent HOURS playing with in our basement for over a year now.  I hesitate, because in the end, basketball hoops are expensive and they are toys, but….

I remember last summer and the endless hours of my son not knowing what to do.  I remember him begging for attention, laying on the floor.  I remember the refusal to read, the hatred of playing, the constant struggle of last summer.  I dream of this hoop being THE toy that my son will play with, engage with.  THE toy that will be worth extra money, the big price tag, the HOURS spent assembling it.  I dream about having a toy that we have to beg my son to tear himself away from…. My husband and I spend the month of March researching hoops.  We splurge.  We find him the perfect one.  We spend over 3 hours the night before his birthday putting it together, in the dark.  It is a labor of love.  But it is THE toy, so it is worth it.

On this birthday, he loves it.  He plays with it for about 10 minutes, but he has a busy day, so it’s ok.  The hoop sits on our patio.  Throughout the first week, a friend comes over and the boys play here and there.  I am excited!  Yay!  A week later, the hoop sits.  Baseball and soccer start, the hoop sits.  Saturdays and Sundays come and go, we stay home and the hoop sits.  Whenever he looks bored, we suggest he use the hoop he WANTED for his birthday, he asks us, “How long? Can you set a timer?”  Those are the questions he asks us when we MAKE him do something he doesn’t want to do….

School has been out for almost two weeks.  We have been keeping busy, but have been home for hours and hours, but the hoop has remained untouched…my heart is sad.  It is NOT the toy.  THE toy does NOT exist.  Last week, I got mad and said, “How hard is it to outside and play with your hoop?  Why isn’t that fun for you???  Why do you love video games so much?”  He replied, “Why don’t you just love me the way I am? I don’t know why God made me this way!”  Part of me feels like it’s a manipulation to get more video game time, but my heart hears the truth behind his question.  It continues to weigh on my heart as his mom.

My child has autism, no matter what he looks or acts like, or how typical he can behave. He does NOT like toys.  He will not keep himself busy the conventional way.  It is not who he is.  I SEE this.  I think I am finally starting to fully ACCEPT what it means.  The three of us have decided to sell his basketball hoop, and I am the only one that is sad about it.  The sadness is not about the hoop, but about the end of my search for the perfect, non-battery operated toy.  It is over.  I truly mean it.  I am done searching for the toy that DOES NOT EXIST.

How Far We Have Come and Where We are Heading…

April 2, 2012

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Autism is a word our family knows well.  Not so long ago, I was obsessed with this word and what it meant for our family.  I read books about treatments, behavior plans, sensory activities, social stories, therapies, cures, diets, stories of families. You name it, I read it, digested and tried it.  If I wasn’t doing EVERYTHING those books recommended, I felt like I was failing my kid.  What if my child does not move forward?  Somehow, I felt responsible.  If our lives were hard, and they weren’t getting better, then I was NOT doing something.  The hardest part was finding that magic something that could make our lives better.  It was a slippery lonely slope, and I pray to never feel like that again.

We did, in fact, find out what our child needed.  Our child needed TIME.  TIME for therapies to work, TIME for us to make a family routine, TIME to grow, TIME to learn the social world, TIME to navigate through social skills.  I also needed time.  I needed to learn to try, fail, try again and be patient when it didn’t work.  I needed to learn to accept help, swallow my pride, and accept that my child’s struggles weren’t a REFLECTION on ME, but on where my child was at that point in time. 

Do I regret all of the hours I spent on finding a fix for my kid?  ABSOLUTELY NOT.  I believe it was the knowledge I gained that help teachers, friends, and family members respond to our situation.  SOMETHING other than time did work, we just don’t know EXACTLY what it is.  At this point, it just doesn’t matter.

Today is World Autism Awareness Day.  I am dedicating this post to the families who are affected by it.  We have to be aware.  We have to know that 1 in 88 people have a form of it.  We have to know that the numbers are rising.  We have to know that a child/baby can engage with their parents and still have Autism.  We have to be aware that we are all made unique and how to reach out to those who develop differently than the masses.

Our family is lucky.  We have a story, it is moving, and we are moving forward.  Our story has a happy middle, and WILL have a happy ending years from now.  I have to admit, I barely think about Autism any more.  While my child is not cured, we have to learned how to help our child and regulate the symptoms.  Most of all, we have learned to accept Autism, but not let it rule our family.  I pray for a “cure,” not for us, but for others.  We are lucky, not everyone’s story is as happy as ours.