Scared, lost, and confounded..but finding my voice.

I look at them, these children of mine. Each so different..so complex..so absolutely divine. I think about autism...and that three of mine are on the spectrum....each in different places..different needs..different people.

I think about my oldest, Sammy. How when he was a year old..he seemed to disappear..slowly going into his own world..a world without eye contact..a world without speech. I think about how scared I was..and lost..and utterly confounded. About how to get him back. I remember when I realized that he had never left..that he was always there...always listening. Always hearing..my voice. How important my voice was.

I think about Oscar..who for so long could not speak..could not ask..could not tell. I remember when it seemed that all he could do was scream..And again I was scared..and lost...and utterly confounded. I remember thinking I can not do this..and then thinking if not me then who? I remember when he discovered music..and could find peace. I remember rocking him to that music and his heart beating next to mine. I remember sharing that peace. I remember when I was his sole voice and realizing he was the voice of my soul. I remember how important my voice has been.


I think about Lily who is not on the spectrum. Whose voice and opinion are both so loud. I remember looking at her and thinking how do I do this-she is not like them. How scared I was and lost and confounded. How would I raise this girly girl next to brothers who are so different?
I remember looking at her, playing alongside her brothers..adoring them and simultaneously driving them crazy. I listen to her tell company "this is my brother Oscar...sometimes he says "eeeeeee"!" There is no shame, no contempt. It is what it is and it suits her. I recognize in her, my voice. I realize its importance...its impact.


I think about my baby girl Zoe. Who just now is in the process of being diagnosed. This time, I am not so scared, nor lost, nor confounded. I just have to look at my other three and see that there is nothing to be afraid of. I think about how overwhelmed she gets in crowds with noise and change. I think about how she looks to me to keep her safe...how she will snuggle in close to hear only my voice. I think about how important my voice is...


I think about the post on AoA..in which a mother speaks of death, and hatred, and disgust..I think about her child. I think about the voice that she hears..and I am confounded and she is so lost. I think about using my voice..to silence this vitriol.

Mostly, I think about my children..and what a privilege it is to be their mother..and an honor and a joy. Through them, I have found my voice...and I am no longer scared.

The circus is coming...RUN!

"There's nothing funny about a clown in the moonlight"
Lon Chaney

The circus was in town-and I just don't like the circus. The noise, the costumes ...the clowns. ick...I shudder thinking about it. For ten years I have avoided taking my children to the circus. I have driven different routes just to bypass any billboards advertising them...I have removed ads from the local paper....thrown out fliers..and if that failed, and one of my kids happened to notice...I did what every parent does in times of great stress-I flat out lied. "Oh, we missed it...it was last week".."I tried to get us tickets, but they were all sold out..sorry-maybe next time."

This year....this year was different. This year they handed out free passes at summer rec. Yeah, summer rec. The place that I had thought of as salvation. The place I had once counted on to keep my kids safe..but no more. They had backed me into a corner..I could avoid it no longer...my ten year grace period was up. There would be no more lies. No more half truths..I had no other choice. I had to take them to the circus.

It wasn't a regular circus either..it was a small town, family owned, one ring affair. It was the kind of circus you would see in a fever dream....or a Stephen King movie. Garish peeling paint..the sparkles not so sparkly, ill fitting costumes and geriatric animals. The people working it were just plain unhappy....sullen even. And the "refreshments"? The cotton candy (4.00) pre-packaged, the popcorn(3.00) pre-popped..the lemonade(3.00) pre-watered down. It was depressing. My kids being how kids are, noticed none of that. They though it was fabulous.

We watched a dog act...in which five different dogs ran from one platform to the other..while jumping through a hoop. An acrobat who contorted her body while hanging on to a ring fifty feet in the air...lifting her legs in such a way, that every male in the audience let out a collective "Whoa.." (including my ten year old son). And then there was the clown....He wasn't your regular sort of clown..not much makeup..he wore a plaid suit and a pointy hat.. He was not a happy guy, although he worked hard at convincing people he was. Now, I am afraid of clowns. Really afraid, and this clown was big on audience participation...so I spent a sweaty fifteen minutes silently chanting "don't make eye contact...don't make eye contact. It worked-until he started walking around selling coloring books.Which my kids really wanted..so I had to talk to him..even though I begged my husband to do it for me..it was a fast transaction-I kept my face averted..I was afraid he would steal my soul with his mad clown eyes...or talk to me.

I am pleased to say that the coloring book was the only souvenir that we bought them. Which was no mean feat, considering that they would announce things for sale between every two acts or so. They even had an intermission in order that people could go and visit the gift stands "located at the front end of the tent." They spent an awful lot of time trying to sell you crap. My kids of course wanted everything...and not all of them understood why they couldn't have it. It made for a few rather tense moments.

The last straw, was the chimpanzees. Chimpanzees in western wear. Riding ponies. Old ponies. How freakish is that? They looked like long time residents of a psych ward, let out for an afternoon shuffle-(I wouldn't have been at all surprised if they had pulled out a pack of Marlborough reds and started smoking).... The chains around there necks only added to the image. It was just plain creepy, masquerading as fun.

At the end of the show, they once again "suggested" stopping by the souvenir stands on the way out. They also said that they looked forward to coming back next year. My kids can't wait. I plan to be out of town.

Crazy comes to Kathleen

"My head hurts, my feet stink, and I don't love Jesus"
Jimmy Buffet

It has been an odd week. We have gone from ceaseless rain to suddenly sunshine back to ceaseless rain..My restless herd has started their summer recreation program..order has been restored-for the most part. We are starting to get into the swing of summer. A different schedule, different activities..different sleep schedule. The kids are doing great-I seem to be the one having the problems..issues..trouble.

Journal entry: "It is now the 19th day of summer vacation and with the exception of about two hours..it has been raining and cold. I am afraid of my basement...I think that I am growing mold..on my body. Will there be no end to this miserable weather? Will I never feel the suns warm rays beating down on my exposed skin..causing untold damage with its U.V. rays? I don't think I can take it anymore. I may have to kill one of the dogs."

The weather has been playing havoc with my mood...tap dancing on my last nerve. Causing me to behave in a manner not quite appropriate for public consumption. I am scatter brained- restless....and very impatient. I can't seem to hold my tongue-when I should be. It is causing me problems..Especially in situations where being an adult is of the utmost importance. Situations like, getting your child evaluated.

We are currently working on having our youngest evaluated..We had already had her screened at child development services and they suggested aspergers..But it is summer time..so in order to get the ball rolling-we have to go with single evaluations..(i.e. speech, o.t.,etc.) until the fall when we can get a team diagnosis. So, we set up our first appointment with the speech therapist. I should have known it wasn't going to go well when-instead of calling me to cancel the appointment, she left a note for me at her office with her home phone number on it. Asking that I give her a call. It seems that she doesn't work on Thursdays...and was currently at home. You know "home"..the place I had driven thirty miles AWAY from to get to her office? She said that she felt bad-so she arranged a visit at my house for later that day. Gosh! How considerate...now I had to clean. So I rushed around...dusting, vacuuming...making sure there was toilet paper. Oh I hate the home visit! Given the particular mood I have been in, I should have rescheduled..

The speech therapist arrived-on time..and proceeded to work with my girly girl. Asking her questions..doing puzzles, looking at pictures. My girl complied...in her own way(i.e. no eye contact..no words except for what was necessary) So far so good..Until the speech therapist decides-that well, because she "KNOWS" autism..and she HAS worked with REALLY "autistic" people..in a "HOME"..she is going to try something a little different.( O.K, my alarm bells are going off...but I hold my tongue. The point is to get my daughter some help..maybe she knows something I don't..) She takes my girls hand and says " look at my eyes, follow them, and tell me, what I am seeing." and proceeds to walk around the house gazing left and right. Huh? My girl doesn't know what to make of this(and neither do I), and begins to just name things in the general direction that the speech therapist is looking. WTF? Is this some new form of diagnosing? Dowsing for autism? It made no sense! The therapist, seeing how my girl is answering, stops and says... "well, she is not severe...probably more moderate...or, she could just be shy." and it was "going to be up to us parents...the ball was in our court as to what to do for her." What??!! O.K..I had been nice to that point.. I had served coffee. But this was just too much. I couldn't help myself...really...I just blurted out.."ARE YOU OUT OF YOUR F***ing MIND? I think I scared her with my stellar diction and perfect enunciation. Because, our meeting ended rather quickly after that. Although, I did thank her and wish her a nice afternoon. I can be well mannered.

We meet with the occupational therapist next week. I hope it is not raining. I hope she is not friends with the speech therapist.