Hammock Guilt

Recently, the mega million lottery was up to 50 million or 500 million or something ridiculously huge that would allow the winner to buy pretty much whatever they wanted. I didn't bother buying a ticket but I did play the What If game with my family.  My first thought was that I would start an orphanage or help my church, perhaps buy a building with a roof that didn't leak for my children's school.  My husband looked at me and asked, but what about for you? What would you buy?  My answer was instant.  I would buy a hammock.  That's it, I just want a hammock. I love hammocks, I have always wanted one.  Once I bought one for about 10 dollars in Mexico.  I never had a place to hang it.  It got dragged around from apartment to apartment  a sad tangled mess waiting for a place to hang.  Finally I gave up my hammock dream and it went in the garage sale pile.   Now I live in a yard with no good trees, the hammock stand seems to me a bit fake, or so I tell myself because that ads an extra price to the entire thing. 
Really though, are they THAT expensive?  I could get one for 100 dollars with a stand on amazon.  I just checked.  So, what really is my reason for not getting one.  I think it's because it would feel selfish.  After all, what is a hammock for?  It is for relaxing, being lazy, reading a book all day long, taking a nap.  Buying one is like announcing to the world "I DESERVE A BREAK! I AM TAKING A BREAK!"  (Also, I live in Oregon, it rains like all the time. So not practical)  Not to mention I would be spending 100 bucks on myself.   Some women have no trouble at all buying themselves something that cost over 10 dollars.  If that is you don't feel bad, I wish I could let go of that feeling of guilt, of unworthiness.   My husband is the main money maker so maybe that is why.  He would never care, he encourages me to get myself things.  But that guilt, it's there no matter what.   Recently though I discovered, while doing the taxes that he had spent quite a bit of money on video games.  Now, it wash;t a big secret, and really I didn't care all all.  He works hard, and totally deserves it, but to think that he can do that and I can't make myself buy a freakin hammock!?

Now, here is the kicker, my son is in Occupational Therapy for sensory integration issues (that is another story) but his favorite OT activity is a lycra hammock.  When he gets to rocking back and forth it brings him down to a good level of energy and he can focus better.   So, of course I start looking at the thing, googling the price (500 bucks! REALLY?!)  and figuring out how I might make one myself.   All within an hour I am planning how to get a hammock for my son, so he can relax, so he can focus, and find a calm in himself.

Why can I do this for him so easily, why is his focus and his calm more valuable than my own to me?  I don't think this was the way we were meant to be wired as mothers.  I know that when I am calm my children are calm.  The days when I am out of control it's obvious that they are effected.  What if I put my calm slightly ahead in the family priority list, or at least at the same level?   I wonder if that would balance everyone else just a bit more and make for happier days?  It could be worth a try if I can ditch the guilt and order the stupid hammock.   Plus a stand of course...because of my lack of trees.

Mamas, we must remember this lesson.  Our calm has value, our calm has influence on everyone else in our home.  Our calm must be protected.  Our calm must be given opportunity to grow.

Often times I am totally worn down, I am tired, and I also feel like I am juggling, no, more like tightrope walking, or maybe fire dancing or perhaps riding a motorcycle in a cage with my husband on the other bike while the kids are standing in the middle.  Something that takes effort, concentration, planning, but also has enjoyment and thrill.  Something that  could go horribly wrong at any second.

That is how I feel preparing to go to the store with my kids, especially if I have more than one place to go.  How  I feel when we are going to have kids come to our house to play, or a dreaded, but also happily anticipated Birthday party invitation.  The worst is when it isn't planned, like if I am picking the kids up from school and realize I must stop and buy X ingredient for dinner or we have nothing to eat.  The fire dance begins and I have to pray I don't miss a move, and that I set everything up as best as I could for success.
It's all a fire dance and on a lot of days it goes just fine, but when it doesn't...LOOKOUT!

When it does go fine though, people on the outside don't realize all the preparation that has been done.  Like watching a circus, it looks so easy, effortless even. I am feeling a bit silly this week though, because I do work hard to produce smooth days and then I will get a compliment about how kind and sweet my daughter is.  Now, this feels good to hear, great even! But something inside me is screaming YOU HAVE NO IDEA!!! or "That is because we went over a list of rules and practiced a script before we came to this party and we will be leaving the moment things turn sour, but before you notice." 
Of course, I don't say these things.  I say "Thank you." Because I know that these people mean well, and really do truly think my daughter is wonderful, and because they are right.  She is sweet, and kind, she is amazing.  I think it's human nature to want recognition for the things that we do.  If we clean the kitchen we want somebody to notice how sparkly it is.  If we prepare a big meal that took 4 hours to make, we want people to know how long we worked. 
I have read about parents of children with Aspergers saying that they almost wish there child had a wheelchair so that everyone would know how hard they are working.  Because a wheelchair, or other physical disability is obvious, it's in your face, people know you are challenged daily.  They might even ask how they can help you, bring a meal over, or pray for you.   Personally, I haven't wished my daughter had a more obvious challenge, I do see where they are coming from though.   I have a friend who's son is the same age as my daughter.  He has been fighting for his life for nine years, he cannot talk, and he is in a wheelchair. My friend  has been fighting right with him.  When I think about my friend and her son I feel totally stupid and petty for my desire for people to know I am tired and working hard.  How blessed I am that my daughter can talk, and walk and how dare I feel this way.  Yet, these feelings still come up, and I will keep trying to push them away, 

Sometimes beauty, sometimes a punch in the face.

Some days there are beautiful moments where I am totally amazed and in awe of how my daughter perceives the world.  Like when she plays the piano and tells me that the song is purple with streaks of yellow and tastes like cherries.  (She has synesthesia a trait some aspies have.)  Sounds have color and also tastes.  I mean, can you imagine tasting your favorite song and having a color show to go along with?  It has to be incredible.
 
Then there are the moments where Aspergers punches me right in the face.  Tonight was one of those moments.  
It was bedtime, the routine is well known:
Vitamins
Pajamas
Brush Teeth ... wait, we didn't get there yet...back up

Brother is in the doorway, Sister wants to shut the door so that the cat doesn't eat the fish that are swimming merrily in the protection of the bedroom.  Sister shoves brother out of the way, maybe it was a gentle push, it doesn't matter.  Brother hits his back on the door frame and falls over crying.  Brother rarely cries, he is hypo-sensitive and doesn't feel pain like a typical kid.  He is hurting for sure.  Sister says sorry in a very brisk manner and head to the bathroom making funny sounds with her mouth as happy as a clam. 
This is not yet the part where I get punched in the face. 
Maybe she doesn't know he is hurt?  Maybe she didn't hear him crying? 

Me: "Your brother is crying."
Her: "I didn't mean to knock him over and I said I was sorry."
Meanwhile Brother is very upset and glaring at her, clearly feeling the lack of empathy.
Me: "Please look at your brother's face and say you are sorry and give him a hug."
Her: "sorry."  A quick flash of eye contact, a very plain, quick sorry, a fleeting hug with barely any closeness, followed by immediate whistling and back brushing her teeth.  After all, that is the next step of the routine.

****PUNCH IN THE FACE*****
Seeing my son hurting and bewildered by why she isn't rushing over and loving on him is the worst pain for me.  He is too young to understand why she does this. 

I can't fix it, I can train her like some sort of puppy to behave right but that instinct just isn't there and it kills me. 

Fairy takes the stage...

Recently our daughter was asked to be in a comedy skit with a couple college students for a Parent Night  at her school.  I was nervous for her but also excited as she had expressed interest in acting before.  It turns out that acting comes very naturally to her.  She was able to memorize, improv, and was totally hilarious.  Everyone had a fun night watching the show and my daughter totally lit up.  She is often a quite little mouse at school (so I am told by the staff,) but not on stage.  On stage she is bold, and strong, and joyful.  It was wonderful to see her this way and I knew we needed to make sure she had other opportunities for drama.
 As luck would have it, the place that she goes to for social group was having a play.  Not just any play, a Shakespeare play (one of her current special interests.)  We signed her up and the play isn't for months but she is LOVING it.  She was casts for two parts, one being a fairy.  Totally perfect for her.
It isn't just my daughter who makes a great actress.  As I have learned from Tony Attwood's book, and from talking to my husband that aspies act all the time.
 People with Aspergers often take the role of a person who they think would be most successful in the current social situation and "act" that character.   I was shocked when I realized that my husband did this, but it made sense.  He would go from being in a totally tired and solitary mood to being the most boisterous person in the room with a crowd of people around him.   He looks the part of a happy go lucky social butterfly when really he is deeply craving to go back into his solitude.  Not that he doesn't enjoy this time, but it tires him greatly.   He turns on an "act" of what people want in this situation and acting is tiring.  Not to mention constantly sizing up the mood of the crowd, am I too funny? not funny enough?  What does that face she is making mean?  All of this runs through the mind of an aspie while they are having a normal conversation.   It's no wonder that many of them choose acting as a career.  They have been practicing their entire lives for the role. 
I am glad my daughter has found something that makes her light up, something she is good at, and in the process I have discovered more about they people in my life that I love so dearly.  

So you CAN learn from Television

Last Fall I began my guilty pleasure of watching some shows on Hulu.  We don't have cable, but I find watching them on my own time via the computer to be much more convenient anyway.   I was watching the usual things for me, Desperate Housewives, The Office, and then a couple new shows. Modern Family for hilarious laughs, and Parenthood
.
Now, I have to go back in time for a moment with this post.  When I was pregnant with my daughter I fell in love with a beautiful satin bassinet that I was obsessed with.  I imagined putting her in it, my first baby, my little girl laying there looking beautiful.   My Mother lovingly gave me as a gift. 
Years later we were living in L.A. in a tiny apartment with no storage, my son had been born, briefly spent a time in it, and quickly outgrew it.   We planned to have no more babies so I put it on Craigslist.  The bassinet ended up being purchased by a Stage Prop Designer who said that it would be used for a Pilot and eventually put into the Universal Studio warehouse to be rented by anyone in Hollywood.  He said, if you ever see one on a TV show or movie that looks like it, chances are it is it.    

OK fast forward ... I am Watching the Parenthood, and  in the beginning of the show each week is a baby in my daughters bassinet. (At least it looks JUST like it, and I think it is.)  I hadn't seen it show up in anything before and so  I decided to watch it again the next week, and I kept watching again and again but no longer for that reason... it was a great show.

  Parenthood features a boy around age 10 who has Asperger's.  I had no idea what that was, other than something to do with Autism and I thought a friend of mine who's son I was suspicious of might learn a few things.  Yep, I posted a link to the show to facebook thinking SHE needs to watch this show.

About a month later I went to a pumpkin patch with my family and my mom came along.   We did a wagon ride, picked a pumpkin, and then let the kids play in the hay.   My husband and I carefully watching our daughter for signs of over-stimulation. She can only last so long during outings before things begin to unravel and for everyone's sanity we have gotten good looking out for this.  My husband and I were talking, plotting our exit at the first sign of melt down.  My mom overhearing us said something like, "You remind me of the parents of that boy on Parenthood."
My mom had started watching the show because I had told her about it a few times, about how the bassinet she bought for us was in the show, and before long she was hooked.

My reply was something defensive and totally clueless. I believe it may have been "What are you saying, She has Aspergers!!!???"  The thought stuck with me though, and the more I watched episodes, the more I realized how much my daughter was reflected in this character.  The character, Max has a more severe case, and also Asperger's presents a bit differently with boys.  They tend to be more violent, where my daughter would draw up plans for the demise of her taunters silently. The similarities were there though, enough to make me take start talking to a psychologist, and eventually her pediatrician. 

Months later, after doctors, psychologist, and lots of reading it became very clear that my daughter did indeed have Asperger's Syndrome. We haven't taken her in for the full medical evaluation with the team of a billion people but every professional I have spoke with is in agreement. 
The realization was overwhelming at first, and then it was a relief.  I now knew what type of books to read to help with issues that other parents just were not having.  I also could let go of this idea I had for her.  That part is hard, I kept thinking that as she got older she would somehow grow into a chatty little lady that would want to hang out with me.  From the age of 2 she would ask me to leave her alone so she could play by herself.  I expected that at age 16, but not from the time she could speak.  Now it makes so much sense to me.   I am letting that go of the expectations that I had for her, as hard as it is.  I still get sad when I see other kids interacting in the neurotypical way but through the books on Asperger's I am learning ways to communicate with her that she does respond to. 

My daughter is amazing though, she notices things nobody else sees, she tells jokes that nobody else would think of, and when she lets me into her world I am always entertained and awed.   Now I watch parenthood and laugh, sometimes cry, but mostly feel less alone.  This is my normal and though I have been living it for eight years it's just sinking in that it's here to stay.

I realize now that even when she was growing inside of me this was planned.  She has always been meant to be exactly the way that she is and I have been guided to understand her better.  Through the bassinet that I fell in love with, my mom purchasing it, selling it to the set designer, and finding the tv show, it was all lined up for our family to make a discovery that would help us.  Not just my daughter but also my husband and his family.  So many things are unfolding because of this discovery.  

I honestly do not think anyone would have made this connection. Asperger's in girls goes undiagnosed all the time.  They are not as "in your face" to outsiders as boys are.  My daughter has had so many troubles with anxiety, transition, friends, empathy.  Before the discovery I always felt lost and helpless, the parenting books I read were no help, the methods would backfire.  Now I have books that speak to me on my child, now she is part of a social skills group for children on the autism spectrum.  We have help, we have guidance, and it isn't so overwhelming anymore. 

^"For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future"  Jeremiah 29:11

A poem written years ago

Soon I will have a daughter

She will be born into an ocean of hatred

And I will spin around her creating a whirlpool of love.

I will teach her that she is a fairy and how to use her wings

to fly away from enemies and fly toward her dreams.

I will show her how to ignore the music around her and listen to the music within her.

There will be some who will try to crush her wings and smother her music.

I will help her build strong wings and tell her to sing loud. 

I wrote that poem years ago when my daughter was growing inside me and today I look back at it and tears fill my eyes as I realize just how true it turned out to be.  My daughter is 8 years old and just this past year she was diagnosed with Asperger's Syndrome.   The line in the poem that get's me the most is about ignoring the music around her and listening to the music within her.  That is exactly what she does, but I never had to show her how, she has always been inside herself, giving the rest of us only glimpses of the magic within.

When I thought of having a daughter I imagined her snuggling with me for hours, having tea parties, going shopping together, wonderful conversations and giggling on a girls night out.  The reality didn't follow that plan.  At first it was not having a snuggly baby, then it was having an independent toddler.  When she was only 2 1/2 years old she told me to "go away" while she did her highly complicated puzzle.  There I was, shut out of her room, surprised, and confused.  I had expected toddlers to want their mothers around.  

At playgrounds she didn't play with the other children, she simply watched them from the highest point she could climb to and occasionally engaged near the end of our visit.  She didn't behave in a shy sort of way, there was no hiding behind my leg or refusing to say "hi."  She simply didn't care to engage in play with the other children.  She was happy alone in her world.  This continued on and is still true today although she has wanted "friends" more in the past two years.  

My daughter never wanted to go shopping with me, later we realized that she doesn't like transitions and shopping is nothing but a transition.  In the car, out of the car, in the store, drive to another store.  It overwhelmed and exhaust her so that by the time we finish she is feeling sick and almost in tears.   I tried fun things like getting a treat while we were out, letting her pick her own stuff, going to a fun store like Claire's.  Now I understand her better and instead we shop online or only plan for one store and make it quick.  

So many things I thought my life with her would look like are not at all what I expected.  Part of that makes me sad, but another part is very curious and ready to embrace the life that is emerging.  Getting the diagnosis was a good thing for me.  I feel like I have answers to questions I wasn't even sure how to ask.   We haven't told her yet but that will come soon.  I want to be in a grounded and centered place before I talk to her about it.  My hope is that through this blog I get to that place quicker.  I also hope it can be useful to other families with aspie daughters who happen to find my blog.  There is not a huge percentage of girls with Asperger's and I think it's great for us to find each other.  One thing I learned in all of this is that it presents differently in girls then it does boys and that leads us to more challenges in finding solutions and support.