Energy

I have none.  Nada. Zip. Ziltch.  The center of a doughnut.  The money in my wallet. 
The trust in my heart.

None.

Winter is long. Sunlight is scarce.  The house and all who live here have a serious case of the midwinter blahs.  J-man in particular has been restless, itching to have action and activity.  And Mommy's energy level is not helping matters.  A little bit too much TV has been watched.  A little bit too much IPad time.  Not enough to do, and not enough energy to do it. 

So, as you may already know, we decided to start OT again. 

We took an OT break for about a year and just focused on speech.  It was a good plan.  And it saved Mommy from having to deal with two sets of therapies at the same time.  But with the long, slow winter creeping along, OT would help J-man work on some of his motor issues, endurance issues and play skills.  And... let's face it... OT is FUN.

The trade off is time.  My time.  And miles on the car.  My car. 

Because I have some pretty solid opinions on philosophy and approach for therapy (ahem), I ended up choosing a OT clinic about 30 minutes away from our home.  And, ironically, it is also 30 minutes away from our speech therapist.... who is 30 minutes away from our home.  Think of it as a perfect triangle.  Or the Bermuda triangle.  Whatever.

And since we essentially have back-to-back therapy twice a week, I am getting to know this triangle very, very well.  Add in one additional speech therapy day once a week.  And preschool twice a week. And at home therapy time, J-man and Mommy style, all the time (at least it is suppose to be!).  And work (mostly evening shifts, 3-11:30p) two to three times a week and every third weekend (12 hours shifts no less!)...  which is also (you guessed it) 30 minutes away. 

I wonder why I am tired?  And my house is a wreck?  And I don't have friends? Or a life?

But I will say that I think the sacrifice of my time, sanity, and re-sale value of my car might just pay off. 

On Monday, Miss OT suggested that we try some aquatic therapy with J-man at the next session.  I was excited and nervous at the same time.  J-man would either LOVE IT or HATE IT.  Since he has trust issues (just like his mom), I wasn't sure how he would feel about going into a scary pool with a new person.  J-man loves water... sometimes... but has a healthy anxiety about it.  That, coupled with the "new person" anxiety might be too much for success.  Or not. 

Never know until you try.  So we tried.

It took him about 10 minutes to get him near the stairs where he threw lot of ducks and fish and balls and lizards into the water to be fished out.  And slowly but surely, he creeped further in.  Trust grew.  Pretty soon complete joy ensued.  By the end, he was jumping into Miss OT's arms from the side and into the water full force.

When we got home, I showed J-man and Daddy the pictures.  J-man was riveted to the photos.  "Water" he said (with sign).  "Wimming" he said (with sign).  Over and over.  Later that evening he pulled the photos up on the IPad again.  He said water and swimming and go as he pulled me to the door... to go swimming.

Ah, no.

Let's try the tub.

A Letter to Myself and Others Like Me

You are not 'just the parent'.

It is easy to feel that way.  Like you are 'just the parent'.

In the beginning, you bought the books.  There are a lot of books.  Books about baby care, books about development.  Books about sleeping and eating and pooping.  Books about raising children.  And those books told you about normal.  About typical. You took some classes, joined some new parent groups.  You felt prepared.  Ready to take on the challenge of parenthood, to love and raise your beautiful child.  And you learned what you needed to learn.  How to change diapers, how to feed your child, how to soothe him. You were building your story together.

But then at some point you discovered you were not dealing with typical.  With 'normal'.

And the Fear and the Doubt set in.  You went out and found the experts.  Doctors, therapists, teachers, all well-educated, all professionals, and all very well meaning.  Experts.  And they are filled with Knowledge.  They know what to do.  They might suggest, imply that you don't.  That you can't, because you don't have their Knowledge.  You are 'just the parent'.   They'd take it from here.  Or maybe you feel you can't help.  The Fear and the Doubt have made you feel Powerless.

But I am here to tell you:   You are not 'just the parent'.

You are the Expert on your child!

You are!  You have been there from the beginning.  You know her smiles, his frowns, the things that bring her joy and what brings on his fear, sadness, or withdrawal.  You are keenly aware of her strengths and his challenges.  You are the keeper of her history and the foundation for his future.  You love, and because you love, you mean more to your child than any other professional can possibly mean. You must trust yourself.  Trust your instincts, that inner voice that calls to you. 

Now, you might need to read new books.  You might need to learn new skills, skills other parents don't have to learn.  You might need to parent a little differently.  Or a lot differently.  And the professionals you bring in to learn these new skills are there to serve you.  To foster your relationship.  To support you and your child, together.  The good, the very best professionals will do that. They will listen.  They will work with you.  They will hear what you have to say, and respect your opinion. You will be included. Cherish these people, because they are worth their weight in gold.

And don't let the others ... the ones to presume to know better than you... take away who you really are.

You are not 'just the parent'. 

You are the Expert on your child!

A Little Confession

I am a logical, rational person. I embrace science. I respect research. I believe that medicine intends to do good, or at least do no harm.

But when we realized J-man might have ‘issues’, I fell down the rabbit hole a little bit.

In Autismland, there are TONS of “complementary” or “alternative” therapies. Some of them are interesting, some benign, some crazy, and some downright scary. I explored them. I read books. We even tried a few of the less expensive/least invasive ones, with the reasoning being “well, it can’t hurt”. Despite the lack of supporting research, I pursued these options because when you are a parent, and you are sooo afraid, you will try anything. (For those interested in a great discussion on this issue, check out this blog)

However, we left those options a long while ago, and now stay rooted in philosophies with more empirical support. It feels better. It feels right.

But there has been one hanger-on that stuck.

We stopped immunizing J-man after his 15 month vaccines.

He had all of the standard vaccines prior to 15 months old, including his MMR. But at that point, I stopped.

I am rational, logical, love science, know research, believe in research. I don’t believe vaccines caused his issues, and I am highly, highly skeptical that it has anything to do with autism (although I allow a least reasonable doubt about it the very rarest of cases).

But I just couldn’t do it. The fear was just too great.

Until this week.

J-man has a toe nail infection. Nothing major, but his big toe got pretty inflamed and I realized he might need a hit of antibiotics. So off to the pediatrician we went. Our Dr. knows all about J-man’s issues, and has been very respectful of my decisions regarding progressing with immunizations. We discussed it at length, and since he had coverage for the major ones, he supported a ‘hold’ on vaccines until I was more comfortable. And since J-man is also crazy healthy (we hardly ever have to take him in!!), it has been off the radar for a while.

But when I took him in for his “toe-llio”, the other not-so-favorite pediatrician saw him and did the (disrespectful) double eyebrow raise when he saw on our chart.  We were behind. I almost told him to bugger off because of those eyebrows.

But I was ready.

So much to J-man’s dismay, he got two shots in the thigh.

And survived. And said “Pizz-ahhh YAH!” the next day…

I try to respect other people’s fears and choices because of my own trip down the rabbit hole. In such a confusing, scary, distrustful time… when no one can give you answers… it is so easy to distrust ‘the system’ who cannot help, and trust those who hand out answers and promises like candy. Hope is a drug.

But I believe in science, in medicine, and in research. And I believe in trusting my own mind.