Wednesday, August 19, 2015

First Grade Mommy Blues

Walked Mr B into his first grade class today.  He walked to find his seat.  He didn't cry, get upset, or flip out that mommy wasn't staying.  He just went.  It's what he was supposed to do.  It's what I was supposed to hope he would do.  But dang it...

He has a paraprofessional this year, we are very excited about this.  He is pretty spot on when it comes to doing his work and following directions, but he has a mischievous side and very little fear or concept of real danger.  We are hoping he doesn't need her much and the teacher even introduced her as a class aide.  And we don't want him dependent on someone else.  But so so so so glad to have an extra set of eyes on him, and the help if or when he needs it.

He is in good hands.  Everyone on campus knows B.  They all were mentioning how excited they were to see his little fedora again.  I had to break hearts and say that ship has sailed.  It broke mine too when he stopped wearing them, about two months ago.  That's how things always go with him though.  He does things just long enough for mommy to get used to it and then BAM over it.

I imagine that's what life will be like for us though.  Get used to one way of doing things and then have to learn a whole new way.  And that's okay.  Change is good.

But my baby is in first grade.  And today is a perfect day to be blue.  I will figure out how to not miss him for full days later.  Can't wait to pick him up!!!

Sunday, August 16, 2015

The Best of Intentions.....

With the good messages of people needing help, guidance, and advice I have received messages I wish never got sent.  People don't mean to be offensive, and if they do that is what the block button is for, but sometimes things hurt.  

I am talking about the people who want to know how to fix, or prevent, their kid from getting autism.  Yes.... this exists, and more than you would believe.

"I don't want to take medicine while pregnant because I am afraid my kid will get autism." "We don't watch television because I am afraid my kid will get autism" "we don't vaccinate because I'm afraid my kid will get autism" ( I won't start a vaccine debate, and most of the people I know that don't do not have autism on the list of reasons why they don't).

Even people blaming themselves for a diagnosis can hurt.

"It's my fault because I had an epidural"  "It's my fault because I ate sushi while pregnant" "it's my fault because we eat gluten"

And the list could go on forever, and is just as ridiculous as it all sounds. 

A new study is released every 5 seconds(my study that never took place resulted this fact) that claims to know what causes autism, and so who could blame people for the worry.  And they read it on the internet so it must be true.

But it hurts.  And why does it hurt?  Because for people to be afraid of it there must be something wrong with it.  Something wrong with our kids who have the diagnosis.  And as a mom, he is perfect. 

One I recently started getting from a lot of well meaning people is if I worry about his future.  What mom doesn't?  Your kid does not have to be on the spectrum to elicit mom worry genes.  It's what we do best.  We do, unfortunately, have a little added worry.  And if these people are messaging me for answers I have none.  The same with his little sisters I don't know what they will grow into.  

I hope he can become a productive member of society.  I hope he can learn to drive a car and pass the driving exam.  I hope he will continue to excel at scholastic activities and graduate high school and college, if he should chose to go.  I hope that he makes deep, long-lasting friendships.  I don't only hope these things, but expect them.  I hold him just as high, maybe even a little higher, to standards of things I know he is capable of doing.  We may need to take extra time to achieve these goals, we may need extra help, but he will do these things.

And to the people so bent up on preventing autism, or curing it, there are worse things.  It is not a death sentence, it is not a limit on possibilities, it is not what defines you or your child, it is not a burden for the parents.

Part of autism awareness is helping shape the world to accept our quirky kids, not change them to fit in better.  Looking at the world differently doesn't make them wrong or less of a part of our world.  And in this family we celebrate differences.  Normal is just a dryer setting anyways.

Friday, August 14, 2015

The People Who Came Before Us

I get messages all the time about people who know people who have had a kid diagnosed with autism, or people concerned their kid isn't developing in some way that they should be.  I reached out when we first thought things were coming to a diagnosis, and the people who reached back, we call them first responders. It is my pleasure to be that to other people.  So please keep the messages coming.

I am very open about our travels on this journey to do exactly that, help new parents that are faced with this stuff.  I don't want to make B a sideshow, far from it.  I love being the example to people of where we were and where we are now.

That being said we are all afraid as parents and social media has made it even more frightening since we can now keep up with all the baby Einsteins and Rembrandts of the preschool yard.  Worrying your kid won't get in to Harvard is one thing, but when you start to notice little things and see all the autism this and autism that flashing around it's easy for that to jump into your thoughts.  It is totally acceptable to contact a parent who is open about their diagnosis and, most likely, willing to help.  Mostly we are going to offer you some sort of pep talk about how you are doing the right thing and recommend talking to your pediatrician about your concerns.  We can handle your emotional guidance and share our stories, but the expert on your child is you!!

If you are worried and your doc shrugs you off then keep pushing.  Mommy gut is one of the strongest compasses I have.  It has led me down the right path WAY more times than the wrong, and heaven help a doctor who is going against momma bear instinct.

All the studies push for early interventions.  The earlier the signs of autism are noticed the earlier you can start therapies and the higher success rate they have.  I say this one because there are parents who take doctor advice and shrug it off.  If they want to test Johnny for autism let them, what does it hurt?  It can only help him/her.

And the whole point of this nonsense is if you are feeling lonely you aren't.  There may not be a neighbor or close friend who gets you, but there is a group of people somewhere who does.  Whether they just understand that it sucks sometimes or their little crazy kiddo does laundry incessantly like your little crazy kiddo.  Whether they get the isolation autism can brings or they understand how nonverbal does not mean quiet.  Someone gets it.  There are so many people who have already traveled this path, and they are paving the way. This is going to be me someday, and then it will be the people who have kids diagnosed in the future.  We are a family.  One big crazy protective family.

Wednesday, August 12, 2015

I'm Back... ish

Family visits, strep, weird random virus, middle child UTI, and meningitis have kept us busy this summer.  We snuck in play dates when we could and had a lot of fun.

B had his eval for speech therapy and was recommended for twice a week therapy.  We are still waiting on ABA and OT evals.  That seems to be the game.  Hurry up and wait.  Everyone pushes early intervention and then it feels so easy to get lost on wait lists.

He has made leaps and bounds this summer even without therapy.  It has been astounding to sit on the sidelines and watch things happen.  And I am excitedly nervous for school to start back up.  I want everyone to see what he has done.  I want to show him off.  I want people who know who he was just a few months ago to see who he is becoming.  And, quite selfishly, I want validation.  I want someone to tell me I am not just imagining things.  That he really has started coming out of his "shell" a bit more.  Moms are allowed to be selfish!

I am also nervous, as with every beginning of the school year, if we have done enough.  I know it's too late to go back in time and find more programs to stuff him into.  It isn't a thing we can do, and I'm not sure our summer could have handled much more.  But the mom guilt is always there.

On top of the guilt is the worry, and every mom has it too not just reserved for autism moms, of how the kids will treat him, and how he will do with his new surroundings.  Will he be picked on?  Will he make friends?  Will he learn at the pace he needs to?  Will his new teacher be as kick ass as the old one?  Will she know what autism is and what it means to us and that he is not a person to be pitied but to be challenged as she would challenge every other child in the class?  Please God let her be up for the challenge.  Give her patience and understanding.  She is a first grade teacher after all so she should be full of these things.

And I hope so bad again that the decision to pick up and move here for the schools was the right one.  I really can't say enough good things about last year, and I am praying for a repeat.

Only time will tell.