Before giving an update on the girls' week I wanted to talk a little bit about Mike.  Its Father's Day, of course and it made me think that, while Mike and I talk an awful lot about the girls we don't often talk about each other's experience in raising them.

When Safi was a little, well before her autism diagnosis, every evening we used to have music time.  We'd play music that Mike and I liked and rock out with Safi.  There's a song by the band Cake, Mexico....I had a match/ But she had a lighter/ I had a flame/ But she had a fire/ I was bright/ But she was much brighter/ I was high/ But she was the sky.....  Mike used to come home from work, still in his undershirt and uniform pants, scoop Safi up off of the floor and twirl her around to that song.  We used to say that this would be the song for the father/daughter dance at her wedding.  Safi would giggle, it was really special.

Once Safi's delays caught up with her she was furious all of the time.  Furious that her little body couldn't keep up with her mind.  That's when we first took her to Regional Center for evaluation.  From then on everything changed.  Mike would come home from work, tired, frustrated, drained...and the music was gone.  I used to wait for the sound of the garage door to open so I could meet him in the driveway, often crying, to tell him about the latest horror of the day.  Safi was banging her head so hard that she was all bruised up, she screamed for 2 or more hours straight and didn't nap, she pulled out a chunk of my hair, I had to get on the ground and restrain her to keep her from hurting herself, the early intervention people aren't helping but seem to agitate her more, etc.  When he would walk through the door, regardless of whether the day had improved before his return, Safi would immediately meltdown.  The transition of him coming home from work would send her into a good 30 minute or more meltdown.

Nixi came along and it was more of the same with Safi for her first year of life.  Things didn't turn around for her until she was 3 and we stopped intensive ABA.  Nixi was this little ball of fear, anxiety, terror.  Everything startled her.  Everything overwhelmed her.  She startled at everything and never seemed to habituate to that which startled her.  I threw away all of my boots with a hard sole because of the clicking noise they made when I walked through the house.  Bathing terrified her.  After a bath she would scream and scream, not a pain scream but a fear scream.  Mike would have to hold her really tight and rock her extremely hard back and forth in a wrought iron spring chair we had....so hard that we broke two.  Only then would she stop.  And she would stop mid-scream and just go limp.  We would check to make sure she was breathing because it was always so sudden.  Other than that, there wasn't much that Mike could do to comfort Nixi because she would not allow it.  She wouldn't allow him to wear her in a carrier, she wouldn't just hang out with him or be walked around by him.  The first time she held her arms up to him for comfort when she was upset was when she was 18 months old.  He used to say to, "She hates my guts."  Of course, she did not, but I could understand why he felt that way.  It was so bad that there were times when I resented her for rejecting him because it was so baseless, and making me the only person who could take care of her was absolutely draining.  Draining, but not hurtful.

I cannot imagine what Mike's experience has been, and is, as a parent to these girls.  He seems to accept things much quicker than I.  He seems much less in denial.  Whenever we have to fill out questionnaires for evaluations of the girls I always ask him to do one separate from mine because more often than not he sees the girls more clearly than I do.  His information is often more valid and more helpful.  Though, on a day to day basis he often seems overly dramatic to me, catastrophizing, fatalistic.  But when I have those opportunities to take a step back and look at his answers compared to others who work with the girls several days a week and my answers, his match up with the unbiased reporters and I am always a horrible under reported.  I make excuses for things, or think of the rationale behind a behavior or symptom...if it makes sense to me, I give it a pass.  Mike sees things with such clarity that I can't begin to understand the depth of pain that must cause him.  Denial is functional.  While I don't engage in it intentionally, it does allow me to live with some measure of peace and/or hope.  Mike lives in reality.

I don't know how he does it day in and day out, always coming back for more.  Though, I have noticed that his rapid acceptance of the girls' reality seems to give him a peace that is far more enduring than my denial based peace.  He has the ability to move on.  Sure, he can get mired down in the sheer weight of this life we're leading...and he does.  But he also accepts that this is our life and its going to be our life forever and we either live it or we die.  I simultaneously admire and detest this quality.

For example, when we go to bed...he with Nixi and me and with Safi I believe he actually goes to sleep.  Sometimes I can hear him snoring away in the other room and I'm so envious that I explode.  I go into the bedroom that Safi and I share with my iPhone and my ear buds.  I research schizophrenia.  I've taken to watching YouTube videos made by those living with schizophrenia for additional insight.  They are amazing, by the way.  I used to do this with autism the first year or so that Safi was diagnosed.  I study current research, review scholarly books and memoirs and order them, I just can't shut off.

We need Mike, I need Mike.  He balances us out and anchors the ship.  I believe that he allows me to be the captain because he trusts that my education and experience makes me the most qualified person for the post...but without the anchor we would sink.  As the captain I am prone to wild fits of jerking the wheel this way and that in search of new lands and undiscovered treasures.  He keeps me from capsizing us all.  He takes the role with little thanks and little glory, though its quite possibly the most important role of all.  He will be the one to keep us steady so that we actually reach our destination.

It is my greatest wish that when we get there he will have the opportunity to see how very much he was and is loved by his girls.  That he is the magic, the silliness, and in many ways the heart of this operation.  It is my deepest desire that he will dance with his daughters at their graduation, marriage, or just around our living room again and feel as free as he did in what seems like decades ago.  That is my Father's Day wish for Mike this Father's Day and always.

Now, a brief update.  We started summer school, which was awesome!  Safi gets to go to a local school for Occupational Therapy on Tuesdays and she and Nixi had a blast hanging out with one of Safi's friends from speech, Zachary.  My mom came up for a visit that got off to a rocky start with Safi feeling left out and hurt but ended very well.  Nixi is currently extremely psychotic on the heels of the visit.  We've realized that her meds do a ton for her disorganized thinking, not so much for the hallucinations and delusions.  Yesterday voices were telling her to beat me up and to dunk her own head under the water in the pool.  I'll talk to the psychiatrist tomorrow.

Summer school fun....

Nana visit......

Rockin' fun OT.......

Sarah