Nobody Died

A couple years ago, I read a very interesting article.  It was from a counselor who had a child with special needs.  His article posits (and I'm paraphrasing here) that parents of SN children are in a continual state of grief and it's various stages.  Unlike death, which happens once, a SN parent must continually deal with the death of expectations as the child grows older.  For example, a Kindergartener is expected to write their alphabet and be potty-trained.  So when a SN child is unable or extremely late to meet those expectations, a parent grieves the loss of what their child can't do.  When their child hits the teenage years, most people expect dates and proms and friends.  When that doesn't happen, parents grieve again.  When a child becomes 18, most people think jobs or college.  And when that doesn't happen, there are more things for parents to process.  Of course, all of the above are just snapshots of different "expectations" in life.  Usually it is always on-going.  The divide grows wider and parents can't really finish processing the grief as age-based expectations keep on moving.

I think it hit me harder this year.  They are still in elementary school, but kids are expected to know so much more than what we learned.  Essay writing, bits of geometry, reading chapter books and non-fiction topics such as the growth of Chinese immigrants during the mid 1800's and how Chinatowns formed while the Anti-Immigration Act went on.  My tiger mom senses are starting to dull.

My grief and struggle is that I don't know how much longer I can keep them in a mainstream classroom.  But if I put either of them in a special education setting, I think, that will probably signify the death of any college hopes.  (And for me, that is something worse than death.)  Is it to their benefit to stay in a mainstream class?  Their classmates are good to them.  It's the work.  They are not failing, but am I ruining them by waiting until they are completely failing in everything?  Before, I would have stuck with my tiger mom senses and no way would I let them fail at school things.  Their feelings do not matter on this issue.  Even now there are days where it seems like they are doing well, but other days creep in more frequently when I look at what they need to do and I start feeling exasperation/sadness/anger welling up.  Some days we trudge through it all.  Now we have days where I just give up and we go eat ice cream and everyone is happy for the moment.       

I am still processing, still grappling with what is best for them.

I think I should find a counselor and have him or her on speed dial...

How It All Began... (Part II)

Funny, it seemed so easy a few weeks back to write stuff.  I had several drafts of different ideas and different posts, but I knew I had to finish Part II.  I started it, but then it got hard.  Then I just couldn't bear to publish a post for the past few weeks and last night I realized why- I would have to talk about when it started to become bad.  Another revelation last night-  I don't want to talk about it.

 I guess this part I want to keep private. 

How It All Began...

I never really wanted to have kids.  They were kind of messy and I was a teacher, so I got my fill of kids at school (so I thought).  My husband and I even married with the expectation that there might not be any little mini-me's running around.  That was to the distress of my mother-in-law who gave me a "you don't know what love is until you have kids" talk before we got married.  She is a great-mother-in-law, so she never pushed, but she tried hard to convince me of all the joys I was going to miss out on.  

I guess that all changed in my later twenties.  Seeing everybody have babies and being married for six years, I started to want someone around other than my hubby (and I mean that in the nicest way). Being very practical, my husband and I talked about all the things we wanted to do before the kids came.  So he joined the army and I went to law school.  In hindsight, it seems more like we were gluttons for punishment than fulfilling our dreams, but that's another story.

My plans were solid.  Finish law school, have kids, then go on to have a fulfilling career while raising wonderful/perfect children.  Well, it didn't happen quite that way.  I was so stressed from both working and going to school full-time that getting pregnant was not the easiest thing to do.  I even went to a fertility specialist.  She told me to try for one more year and then sent me away.  "You should have lied so she would give you the drugs!" my spouse half joked.  That's O.K. because after I passed the bar, I got pregnant.  Two even!  Wow, talk about hitting the lotto!

After trying for so long, of course I was going to make this the Perfect Pregnancy.  I ate and ate and ate (and gained 80+ lbs).  My sisters took me to eat at weird hours of the night (thank you, K and C).  But I was in great shape for someone with two.  No lack of iron deficiency, no pre-eclampsia, nothing really.  The doctor put me on bed rest not because I needed it, but just so I can relax before the chaos of kids.  I waddled a lot and went to the pool a lot so the weight would be bearable.  I also used about a gallon of cocoa butter lotion to try and prevent stretch marks (didn't work).

At 38 weeks, nothing seemed to be happening.  I was just gaining more mass and starting to resemble Jabba the Hut lying in bed.  So the doctor told me I should be induced.  They were pretty much full-term.  Leaving them in might cause more problems, he warned.  So I agreed and went to Cedars-Sinai at midnight on March 26, 2004. 

All I can say was that it was a l-o-n-g night.  I was drugged with whatever it is they use to get babies to come out.  But the drugs also caused me to have high blood pressure, so I had drugs to try and lower it.  I personally think it was that combination that made NOTHING happen.  I tried to push, but as the morning was turning to the afternoon, all I wanted to do was take a nap (which I couldn't because I was giving birth).  So the doctor said let's do a C-section.  You mean, I can just lie there and everything will be done?  O.K.!

And so they were born.  S at 6 lbs 15 oz and N at 17 lbs 1 oz.  Wonderfully big babies that didn't seem affected by any of the drugs (they usually come out in a stupor, was what the nurse said).  They let me hold N while my husband held S.  N was crying, but stopped when he saw me.  He recognized me!  All the mommy-child bonding stuff they say is really true!  And at that moment, I was the happiest mommy in the world. 

     

Can We Be In the Same Group?

A couple weeks ago, I went to a parent meeting for Cub Scouts with another mom. Growing up with all sisters, I really had no idea of what goes on with Cub Scouts.  I'd just assumed it probably had something to do with camping, tying knots and earning badges.  I went to the parent meeting.  Two meetings a month.  An hour each meeting.  One for the pack (all ages) and one for their grade level.  Parents must accompany them.  Whole families are welcomed so if siblings want to come, the more, the merrier, was what the troop seemed to say.  Sounds great to me.

"It's kind of presumptious that they expect us to join when we haven't even met their kids," the other mom told me.  "What do you mean?"  I guess I was a little dense.  I didn't realize she meant she wanted to make sure the troop had "good" kids.  Eventually, she decided not to join this particular group, but for other reasons.

For me, I guess I had looked at it a little bit differently.  All the parents seemed like nice, responsible people.  Heck, if the parents' idea of a good time on Friday night is to go to a Cub Scout meeting with their whole family at a church, it's safe to say that their sons are probably upstanding citizens.  I don't think there is much room for a bully (at least not with their parents around).

I guess my friend's comment bothered me because I am fearful my sons are the "bad" kids.  It's hard enough to see children shy away from mine because of their autistic behaviors.  But to think that parents would also disapprove of their children being in the same group as mine goes to a whole new level.

No, I haven't been told or heard comments from parents about S and N.  But sometimes I wonder.  When we try to meet with other families with kids the same age and they don't seem interested.  Or when parents talk about being happy that their children are starting to hang out with the smart/cool/athletic kids.  I know I should be happy for them, but I guess it only reminds me that my kids are not the smart/cool/athletic kids that they're talking about.  It feels like groups and reputations are forming and I am panicking because again, my kids are lacking in people's eyes.

I think about my own preferences for who I want my kids to hang out with.  Though part of me wants to say "anybody,"  I know that is not true.  I think, my only wish is that their peers be...kind.  The type of kids I want S and N to be around do not have to be the top of their class or the most coordinated.  Just kids that will treat others well.  No matter the others' ethnicity, beliefs, physical looks or speech.  No bullying or belittlement against my sons or any one else. 

What do you think?  Do you think that is too much for me to ask? 
 

 

What's Easy?

So later that night, I was telling N that I was so proud of him for working so hard on his homework and working so hard at school.  He responded, "Homework is hard."   I'm not sure whether he understood my compliments to him or whether I understood what he meant, but his answer made me want to explore what he feels is easy for him.

"What is easy for you?"
"Drawing,"  he was pretty fast in his response to that. 
"What else?"
"Playground," he said after a few seconds (which I'm sure he meant "playing.")
"Is there anything else that is easy?"
He seems to think a little and then says "No."

I then asked him, "What is hard for you?" 
"School," he instantaneously says. 
"Which part?"
"All of it."

Sigh.  I am sad.   For myself because as a former "A" student and teacher, this was such a big part of what I remember and wanting to share the same zeal with him.  On another level, I'm even more sad for him that 9-10 hours (this includes homework time) of his day is spent doing something he does not like.  But I think school is not everybody's cup of tea.  And I think, in the larger picture, life is hard.  Which part?  All of it.  For me it has been and probably for most other people too.

I hope that both of my sons can keep up their perseverance and me too.  We have different battles, but I realize that we all need to keep on going.  I hope that it gets easier...   

       

Little Heroes

So I was quizzing N the other night on his times tables.  My other son has them down pretty good, but N needs work.  Their school requires 48 correct in 5 minutes in order to go on to the next level.  N has been stuck on the threes for the past two weeks because he can't write them down fast enough to finish all 48.

"3 x 12 is..." I say, prompting an answer.
"3 x 12 is...hard," he says back.

I laugh a little.  Such an honest answer! 

Then it gets me thinking.  I think that if I had to go through a day where 98% of my day were difficult demands, I would have a nervous breakdown sooner or later.

But yet, here N was, trying his hardest to fit into our world where for him, there is always too much noise, too much talking, too much of a lot of things for him to bear.  He dutifully spends two plus hours doing his homework every night.  He tries to listen when we instruct him to stop talking to himself and then instruct him on how to talk.  Instead of anger, he is always quick to forgive me when I yell.  I apologize and he instantly responds "that's O.K."  He loves his brother to death, unwilling to lay down the Skip A Turn card in Uno because he does not want his brother to lose a turn.

I had forgotten how much love N has or how hard he works in our quest for him to be "typical."  He is just a wonderful little boy.   

I think I have a new hero. 

A Congratulatory Gift

So an article I co-wrote about estate planning for calestateplanning.com came out in the local newspaper today.  I showed one of the boys my picture and story.  "Why are you in the newspaper, Mommy?"

"Because I wrote an article."

"Congratulations!  Good job!" (Wow, it must be all those ABA therapy sessions where you get praised for doing something right)

He runs off and comes back with something in his hand.

"Here's a light mace for you because you were in the newspaper."  He hands me something he's made and had been playing with.  It's a piece of paper that he had rolled up, attached some yarn to one end, and to the other yarn end had attached a plastic silver thingamajig.  For those of you who need a refresher in Middle Age weapons, a mace is usually a club with spikes on it or in my case,  a small club attached to a chain and a giant ball full of spikes on it.

"You said a mace is  your favorite weapon."

It made my day that one of my little boys was so happy for me and gave me one of his favorite playthings.

A Backpack and a Rifle

S wants to run away today. He had a bad day at school. He screamed in class because he lost a math game. So I told him he couldn’t go with his brother to see some baby rabbits I had promised we’d visit tonight.

“I’m running away!” S tearfully yells as we come in the door. “O.K., go ahead,” I say calmly. (Moms are supposed to be calm at all times). He runs into his room and starts packing. 

While he packs, I wonder, how the heck am I supposed to handle this? I could call his bluff by letting him go, but he might actually keep on walking. (That’s the thing about autistic kids: they never bluff. Or at least mine don't.) I could try and reason with him, but I don't want to appear weak and back down from my decision. 

He walks out of his room with his backpack on and his toy rifle sticking out from it. I see it's stuffed full and he is starting to put his shoes on.

“I’m not a part of this family any more!”

“So, where are you going to live?” 

“I’ll live outside up in the tree!”

“But who will take care of you?”

“I can take care of myself, I’m big now!” (Maybe I should stop telling him he’s a big boy.)

“I’ll miss you.”  I say with a serious face. “Especially when we go camping for summer vacation and make s’mores over a fire.”

That starts to change his determined look. “I’ll miss my family too,” S says, and starts crying. I know he is looking for a way to wiggle back into our family camping trip.

“I bet Daddy and N will miss you too.” By now he is slumped on the sofa. Half crying and half excited about camping. “Do you want to calm down and join our family again?”

“Yes,” S says, and starts a fresh round of crying. I know he wants to end this episode with dignity, and not seem like a baby who changes his mind easily.     

“Why don’t you go into Mommy’s room and calm down?”

“O.K.”  In my room he talks about really wanting to see the bunnies and how he couldn’t control himself because he hates losing. I go through the familiar spiel for frustrations: It’s/just/a/game./Sometimes/you/win/sometimes/you/lose./Mommy/and/Daddy/lose/and/we/don’t/cry./What/do/you/think/the/other/kids/and/teacher/are/thinking/when/you/are/screaming?/Let’s/try/better/next/time.

“Will you take pictures of the bunnies for me?” S pleads. “And don’t tell Daddy what happened.”

The next day before school, he empties out his backpack on the sofa so he can take it to school. He kinda looks at me, but doesn’t say anything.

I see what he packed: several of his favorite Beyblade tops, some Bakugans, a bead bracelet he made that spelled his name, all three robot Hex bugs, a couple of his drawings, his toy rifle, and his jacket. All his worldly treasures. 

I am both annoyed and happy. Annoyed that most of the toys are commercialized playthings that he wanted because he saw them on T.V.  But also happy because they are still toys and things that he made or drew that he was proud of.  He is still a child completely content with his playthings.  I am happy because he is still a little boy who was still willing to return home to join his family.    

Saturday Night Fever and Mr. Roboto

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It's Saturday night and I am dancing at a wedding. Not bad for someone who would rather get shots/see the dentist/clean the bathrooms than dance.

You see, I'm the kind of person who would rather read a book and disappear into a crowd. Or I might say something to a crowd, but only after I have rehearsed it a thousand times (even then I might chicken out). Spontaneity is not my thing.

But here I find myself actually dancing and enjoying it for the first time in my life. And I owe it to my sons N and S, who are on the autistic spectrum.  And although I am their mother who is suppose to teach them, I find that they are often times teaching me about life.

For those who don't know, my sons are twins and they are eight years old. I thought I had the perfect pregnancy -- I carried them for 38 weeks until the doctor insisted that my labor be induced. I didn’t suffer any difficult effects of pregnancy (just 80 lbs. hanging from my gut and barely able to stand). They didn’t even seem to suffer any effects from the induction medicines and were born at healthy weights: exactly 6 lbs., 15 oz. and 7 lbs., 1 oz. respectively. But about two years later they were diagnosed (I'll save that story for another time). Since then, my whole life has revolved around therapies, doctors, and above all, it seems-- trying to make them act more neuro-typical (or as some unaware people would say, normal).

Both S and N are better dancers and swimmers than I am because of autism.

We started them on swim lessons when they were barely three, both for water safety reasons and for the therapeutic effects of water. N loves to just sit underwater, where I think all the noises of the world are drowned out and he has more control of his body.  He sits cross-legged and just kinda watches things through his goggles.

We also started the boys with dancing because there was some research (and a DVD) that promised a unique sensory integration breakthrough program for young people with autism.  They liked it perhaps the first three times, and then hated it. Then my sister (thanks Auntie K!) gave us Dance Dance Revolution (DDR) for the Wii and they LOVED it. I don't know if it was the music, or being able to choose your dancers, or what, but they would spend hours dancing to techno with three Japanese Anime-looking characters.  The routines on DDR are more like cheer sequences, but hey, that's more rhythm than I ever had.

For better or worse, most autistic kids don't really give a darn about what people think. This is one of autism's curses. Conversations tend to be about themselves or fragmented talks about things that make perfect sense in their own minds, even though the other person has no idea what they're talking about. For my kids, they start quoting Annoying Orange or screaming bloody murder when they lose at cards. While I am mortified that everybody is staring and backing away, they just continue unaware.   
                   

But tonight, they want to dance with their mom on the dance floor. I recognize their steps as they start doing their routines from DDR to the music. They do their Saturday Night finger-pointing imitation and Mr. Roboto moves. Not bad. S even tries to dip me. I see N's serious face, but I know he is having fun. For two little boys who have gone through so much, they are not held back by any fears here. I am so proud of them and admire them. I can only respond by throwing my own fears away for the evening. This time, it is my turn to try and be like them - dancing, living in the moment, and being happy.