A Mother's Intuition

I found out about mother's intuition pretty early on.

My oldest son was born with heart defects.  We didn't know about it during the pregnancy so you can imagine the shock when during delivery his heart rate dropped and the happy hospital room suddenly became an emergency nightmare.

He had to be forcibly removed from the birth canal. The nurses strategically blocked me from seeing my son who was quickly whisked from my room . I remember not hearing him cry. The worry in my mother's eyes gave it all away.  She later told me he was blue and lifeless. I later learned he was given an Apgar score of a one, his barely there heartbeat got him that one measly point.

Five days later we were released with a quiet, sleepy, but content little boy. We were told he had heart defects but they weren't pressing in the world of heart defects. He would thrive, we were to check in in two weeks, he may need surgery but in all likeliness the hole would heal on it's own.

Four days later I knew something was wrong. He couldn't get through a feeding without passing out in exhaustion.  When he was awake he was cranky and inconsolable.  I googled signs of heart distress because the doctor was so sure in Corbin's good prognosis he hadn't given me signs to watch for. I was 20 years old. I argued with myself. I told myself that babies were meant to be cranky at times and I had just been lucky up to this day that he was so easy to care for. I called our family doctor and the nurse laughed politely as she gently welcomed me to motherhood.

An hour after calling I looked at him sleeping and knew his breathing was off. I put him in his car seat and sped to the medical center. I stormed in, demanding them to see my son. An eye roll and 15 minutes later and he was on the table.

The doctor who had known me since I was 10 smiled and laughed as he undressed my son, placating me with a quick evaluation.  His demeanor quickly changed when literally two minutes later my son turned blue.

At nine days old my son was in congestive heart failure.

I still shudder to this day when I think what would have happened if I hadn't listened to my gut. If I had still been sitting at home letting him sleep the day away when he turned blue.

You hear a lot about mother's intuition if you spend any time with moms of children on the spectrum. I don't know how many times I've heard the tale of a mother telling the pediatrician that something was wrong. And the pediatrician looking back at them and telling them that all children develop differently and to stop worrying.  That's also my tale.

Or the tale of a Mom whose child just screamed for days after a vaccination and she called the clinic asking what was wrong to be told that it was just a normal reaction.  Then for her child to regress.  That's also my tale.

Where did this train of though come from?  With kids on the spectrum, no matter how long we've been in this game, no matter how far our kids come, we still come to crossroads where we have to choose our gut over what professionals say.

Sometimes we start to feel a bit lost, still in that effin' mindset that they are doctors or teachers or what-have-you, and we must listen to them because they had more formal education in this particular area.  I call bullshit.  No one knows their children like mothers do.  And when our kids are nonverbal we have to listen to their behaviors, to their nonverbal communication, and to our guts.  

I was stuck for a little bit this summer on how to move forward.  Then I stopped listening to everyone and started listening to my son again and I knew what to do.  And he's happy and thriving and reading and talking and laughing.  And that's what matters.

It Embarrasses Me.

We were standing in line to check out at the grocery store.

Brian was flapping and laughing as he usually does in the checkout lane, when Corbin hissed to him, "Stop doing that, Brian".

I gave Corbin a look and told him that Brian wasn't doing anything wrong.

Corbin hung his head, looking ashamed, but whispering under his breath, "It embarrasses me when people look at him and think he's a weirdo."

Corbin is an amazing big brother, we all know that.  He has stepped up to the plate many times over the years.  He has educated his peers, he has stood up for his brother, he has bent to his will many times over.

But he's a child.  A child going into middle school.  A child who is suddenly becoming aware of societal norms and wanting to "fit in".  A child who already has his own social anxieties and difficulties.

I didn't educate him in the moment but we talked later at home.  He went on and told me that he really wants friends in middle school and he is worried that in middle school kids are meaner and won't like him if he has a brother who is "weird" in their eyes.  I asked him where he got such notions and he replied, "I watch TV, Mom and middle school kids are bullies" (thanks TV!).

We talked about not wanting friends who would be mean to other kids who are different.  We talked about the fact that most of the kids in middle school are the same ones he has grown up with and they already know and love Brian and are already his friends.  We talked about how Brian can't help his stimming and he's doing his best to fit in as well and he needs our support and love.

That moment of him being embarrassed of his brother hurt my heart a little.  However, I know this stage Corbin is entering is a hard one and we need to support him as well.  I try to remember myself at that age.  I remember how desperately I wanted to fit in and for the most part I assume I was fairly typical.  Corbin already has many social and communication deficits that meet an Aspergers diagnosis as well as having a brother who is very different from his peers.  It has to be hard for a ten-year-old to take in.

I want Corbin to grow up to be a person who is compassionate, empathetic, and secure enough in his own skin to realize he doesn't need or want other people's judgments.  I want Corbin to grow up knowing that his needs are just as important as his brother's.  I want him to be heard.  I want him to get through this upcoming tween and teen stage with as little hurt as possible and come out of it with a strong voice and sense of self.

Tricky waters ahead.

Summer School

We're into our third week of summer school now.  He goes three days a week, three hours a day.

The first week when I reminded Brian he was going to be starting summer school he smiled and laughed.  He got ready to go INDEPENDENTLY and stood in front of the door BEFORE I was even ready to go.  Usage of capital letters in that last sentence are needed.  This child hates transitioning with a passion.

I drove him to school and he skipped and giggled all the way in.  The remainder of the three-day week continued on like that.

The following week we got a note that Brian had swore when he was frustrated.  I have to admit, at first I laughed.  It was kind of funny that my child who uses so little language had decided to use a swear in a meaningful context.  I let it slide.

The next day I got a note that he swore, bit his wrists, and cried a lot.

Every day since the notes have been the same.

He doesn't want to go to school anymore.  Last Thursday when I told him it was time to go to school he started running around the house, throwing himself into the walls and the floors while screaming.

At first I blamed the school.  What are they doing to make him so upset?

Then after witnessing a huge meltdown on a Friday, a day of no school, I began to wonder what is making him not feel well?

Then I came full circle when I watched his Saturday, Sunday, and Monday be incredibly good.  Watched him go to gigs, appointments, have a house full of people, sit with me and work on academic skills without a single meltdown.  And then watched him go back to school on Tuesday to get a note that says, "Swore a lot.  Pounding his fists on the floor.  Seemed very sad, cried a lot."

I don't ever want to be that parent that blames everyone but my own child for behaviors.  However, it is so odd that he is swearing (and by the way, it's the "F" word) every day at school but no one else in his life has ever heard him say it (besides last fall when he was singing "fu-kay, fu-kay, fu-kay").  It is so odd that I can make him sit and work on sight words over and over again without more than whining.

It's hard when your child can't tell you for sure what is going on.  What could make it easier.

Summer school seems sort of like a joke at this point.  I'm sending him and he is obviously going into his fight or flight response every day so what real learning can be done?  What real learning can be done when it's a new teacher that just met him and probably won't really start to understand how he works until the six weeks are over anyways, no matter how wonderful and true her intentions are?  What real learning can happen when he's not getting 1:1 attention that is written in his IEP or his mandatory sensory breaks?

We're finishing up the week and then reassessing...

Moments of Normalcy

I just opened up a bag of chips when Brian bounded into the kitchen.

"Hey, what you doing?"

"I'm eating some chips."

"Oh, okay."

"Do you want some?"

"Yes!"


I live for these little moments.

Functional Langauge

On a daily basis I feel good if Brian answers five of my questions correctly.  That's with a "yes" or a "no" or repeating one of the choices I gave him (not just the last thing I say).

We still get a whole lot of "yes"s for things we know he doesn't really want to answer in the affirmative.  For example, "Do you want brussel sprouts for dinner?".

However, he has hundreds and hundreds of words up there.

If he's in the right mood he can label everything, EVERYTHING, you ask of him.

He can differentiate a macaw from other birds and a tree frog from all the other varieties.

He can come in after making a mud pit in our driveway, catch a glimpse of his dirty reflection, and exclaim "This is not any good".

He can struggle with pulling up shorts that are way too small for him and then sing a song after he succeeds.

But we still can't get him to converse with people.

He can't tell us what's wrong.

He can't tell me about his day.

He usually can't tell me what he wants unless he can actually see what it is he wants, the visual connection seems to help his apraxic autistic brain.

I want all of those words he has stored up there to come out in streams.  I want them to be used functionally.  I want him to not have to struggle so much to pull those words out of the complexities of his brain.

He will grab my cheeks and look in my eyes to convey what he's feeling, but I still long to hear those words.

However, those little bursts of song, those little scripted lines that he uses in the perfect context...they give me hope.  

At one point I was told the language  that Brian had at five years old would be indicative of his language ability for life.  Obviously that was a lie.  One of the many stupid things I've heard from a range of professionals.  Brian continues to grow all the time and my hope will never falter that there will be MORE for him.  More language, More happiness, More health, More connection, More hope.

Just A Taste of Why He's Amazing

I may have checked out the past couple of weeks.  We got new diagnoses and with that came the self-doubt and the guilt and the questions.  Should I be doing something different?  Am I not pushing enough?  Am I pushing too hard?

In the meantime, he keeps blossoming into this amazing person.

Two nights ago he broke down into tears.  Because he couldn't eat the rice on his plate.  Yes, he has a harder time at mealtime than his brother.  Yet, it wasn't something that needed tears.  The tears grow into other emotional problems and then he starts breathing so hard that I'm worried he'll have an anxiety attack.

The problem was that we were having ice cream for dessert.  And it's not a rule we budge on.  If you don't eat your dinner, you don't get dessert.  But we don't have dessert very often so when it's available it's a big deal.

He did end up going to bed with no dessert and we were able to dry up those tears and get some hugs and laughs before bed after an hour or so of the tears.

Last night, Brian was the one struggling with dinner.  We had potato salad and he is not a fan.  Corbin finished his up in no time.  Brian was screaming at me because he knew there was ice cream and he didn't want to eat the potato salad.

Part of me expected Corbin to be a bit smug.  Just the night before Brian had had ice cream and he had had none.  Quite honestly I thought that may be a typical response.

However, Corbin stopped playing his game and came and sat next to his brother who was still sitting at the table trying to coerce me to give in.  Corbin patted his back and started talking to him in a nice slow voice telling him he could do it.  He then leaned in and picked up one piece of potato and said, "Here, I'll help you, but that's all I'm eating because I know you can do it".

Brian ended up eating all of his dinner and both boys enjoyed ice cream together.

So yes, we may have learned last week that Corbin has a bit more struggles than I thought.  Or maybe it was just it seems more now that it has labels...but regardless, he is an amazing person growing up with all of the attributes I find to be important in people.  He is simply wonderful.

To Be Anonymous Or Not

I have enjoyed blogging thoroughly throughout the years.  I do find that it evolves and comes around full circle at times, the amount I need to do it.  It has been my lifeline at times as I craved to hear someone else tell me that they've been there, they've done that, and they've survived.

Early on I asked myself whether I should blog anonymously or not.  At the time I didn't feel like I had anything to hide.

Quite honestly I never thought I'd get to the point where I had to worry about Brian's peers finding my blog and teasing him about it.  Yes, there are always going to be those ignorant little brats that will make fun of him for no reason.  But as the whole his differences are huge enough that kids are tolerable.

Does that make sense?

In a way I think kids that have just little quirks, that can talk but can't figure out social communication, that can keep up cognitively (maybe even better than typical peers) have it harder as far as bullying situations go.

As Corbin gets older we continue to see his little quirks magnified.  At the same time I just keep seeing how much more amazing he is.  He keeps getting new diagnoses thrown at us and I want to blog about it so DAMN bad.  I want to blog about raising two kids with very different needs in one household.  I want to blog about how Corbin breaks the mold.  I want to blog about how, that even though they both have these diagnoses, how different I worry about their futures (and how I feel like I can spread some light on this whole Acceptance battle in the ASD world).

But he's one of those kids.  One of those kids that may actually read this blog in the future.  One of those kids whose peers will read it and not read it to understand but read it to pick on him.  And he's one of those kids that will care what his peers think of him, unlike my other son.

And I'm stuck.

Wishing that five years ago I started this anonymously.