Tuesday, August 20, 2013

I Got Your Back, Max.

If you are connected, in any shape or form, to the autism community than I am guessing you have seen and read the horrific anonymous letter that was delivered to the family of a child with autism.  When I first saw it in my news feed I was certain it was a fake.  However, I quickly found the news story and my heart sank with the reality. 

To Max's family,

I can't imagine what it felt like to hold that letter in your hands and read those words about your child.  My heart broke for you and I cried tears for you.  I cried tears for my son.  I cried tears for humanity.

Please share this image created by the National Autism Association
I just want you to know that that individual is a minority in this world.  I have to believe that.  For every one like that there are thousands wanting to express their love and acceptance with you.  Don't put any stock in her words.  Choose to listen instead to the outpouring of support that I have witnessed through all the social medias.

I have never met Max but I can tell you that he is a beautiful boy.  He has a kind soul that has probably never known hate for a single person.  He finds joy in the simplest of things and really appreciates those things and people that he loves.  I watched him giving high fives to the members of your community and his happiness exuded so much that I laughed on the other side of this screen.  My boy does the same exact jump and flap when he's excited.  Max's worth shouldn't be questioned ever.  His ability to love and accept and not hate makes his place in this world so much more important than the perpetrator of this hate crime (because that's what this is).

You are doing an amazing job as a family, it is clear in the joy that Max was radiating.  Stay strong and remember that you have an entire amazing supportive autism community that has your back.

Heather, fellow autism mother

Sunday, August 18, 2013

Back To School Prep

Back to school time!  With that comes clothes shopping, buying supplies, and figuring out all the steps of reacclimating your child to school.

Every year we plan visits prior to school starting for Brian to see his new classroom, meet his new teacher, and peruse the halls without any other children there.

I meet privately with the new special ed teacher (yes, new, as the role seems to be as cursed as the Professor of Defense Against the Dark Arts in the Harry Potter books) and explain all the Ins and Outs of Brian.

And every August I update the document I made years ago, "Unlocking the Puzzle of Brian".

I have a number of personal "friends" going into Kindergarten this year with the autism diagnosis and a lot of questions from their parents about what they need to do.  Some would say my document is a bit lengthy or a bit bossy....however, over the years I have learned that I can't merely trust that the professionals in my child's life will understand the intricacies of autism.  I need to put it all out there, no matter how obvious I think it may be.

So far I haven't seemed to get any attitude about it (unless it's behind my back) and I've had outside evaluators comment in their evaluations that they had an excellent, thorough document given to them (mine).  I copy this every year and give it to EVERYONE on Brian's team- another thing I've learned through the years- you can't trust that they will all share information with each other.  So one goes to the ed tech, the special ed teacher, the regular ed teacher, the OT, the speech therapist, etc.

I'm including the link today for the document I made last year.  It's not updated for this school year yet as I'm a procrastinator and will probably be working on it the night before the first day of school. As I'm reading it I'm happily realizing he has made a lot of progress this past year, another bonus of having a yearly document.


I'm hoping this link will help some of those just starting this journey of autism and public education.  If you've already been there and done that, what works for you and your family?

Tuesday, August 13, 2013

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.

Monday, August 5, 2013

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.