Friday, April 27, 2007

A Sobering Reality

I am not perfect. I don't even come close. I am so far flung from that reality, I don't think I can even see it from here. My world seems so separate from everyone else's that I feel as if I am the visitor here. An outsider than can barely speak the language. What's ironic about the whole situation is that it has nothing to do with Autism, this feeling of being alone. Because, for a brief moment in time I felt like my world could actually be the same world as other people I came in contact with when Autism was first introduced. Together, myself and these other mothers, could make a connection, that was real, had substance. Autism gave me that. It gave me an in with other mothers, who felt lost, saddened, stressed and still hopeful that amongst it all they could still be there for their child. But, the loneliness is still there for me, even after the curtains pulled to the side for the final act. Before the applause was to happen, the standing ovation for all the dedication, love, heart and soul that I have poured selfishly into my child, I stand alone. Maybe it was never Gabe, but really all me.

Somewhere along the way, his world separated like mine, drifting away from the one where every seemed to be headed. How am I to provide for my son what he needs if I can not even manage it for myself? I don't even speak the same language. It is all so foreign to me. The Kate Spade handbags, casual conversations about nothing, diamonds that sparkle as their heads turn. I am so far out from where everyone seems to be. Like I missed Adulthood 101 "This is how you act". I am having a really hard time.

I didn't know that you are to dress up when you go to McDonald's. Really? That heals are not meant only for anniversaries, the theatre, and Galas, but should be worn when picking Gabe up from school, grocery shopping and (how stupid of me) to greasy fastfood places where your kids socks turn a swamp black as they run through the germ infested play area. Who knew? That proper protocol was to only wear something that Ann Taylor, North Face, Ralph Lauren or anything else (Thank God no one was actually wearing BeBe) that could be purchased at The Somerset Collection. You don't just wear a shirt and pants, but an ensemble.

Gabe and I were invited to meet a friend and her kids at McDonald's this afternoon to play in the play place. (Can I just let out a big 'EEEEWWW!' about the condition that our play area is in). I go, because I really would like to spend some time chatting with this friend, I am trying to continue and hopefully maintain at least some friends from before Gabe's diagnosis. I live in a small town and all these moms know each other and they know me or at least "about" me. They know little about Gabe, most have no clue what our lives truly entailed the last two years.

Our worlds collided, these moms and I, it was awkward and the lack of interest was palpable. Did I tell you that the friend that I was meeting to spend time with also called most of the moms that I have, deliberately, chosen not to talk to to meet us there? Did she know? Probably not. I was just hoping that she was as interested in getting together to talk with me as I was her. I am so way off in most of my friendships, it blows my mind every time. I am constantly being slapped in the face with this reality. That perhaps the store clerk who rang my groceries may not want be my Maid of Honor at my wedding? Am I that far off? No, but it sure feels that way sometimes.

So, I would normally handle this 'rejection' by not talking to any of them again and starting over from scratch, in hopes to find more people like me. But, you can not run far enough away here. It is high school all over again. I liked that comparison. Funny enough, that was how my 'friend' described it too. I guess it will be a first in my life that I will have to stick it out. It's killing me. There is no bright light at the end, no rainbows after the storm, just me being an outsider, occasionally asked to join a few select functions. Mostly birthday parties and the rare play date. I hate saying this about myself. I know it can't all be me, but when you are the only one left waiting on the side lines and everyone else is out playing the game, scoring touchdowns for their kids, yeah, it's kind've a rude awakening, a painful one at that. Oh, and my neighbor of 5 years, that I just had over for a play date not but a week ago, leaned over and told me," Yeah, 'L' (my friend) called and invited me and "J' and 'K' too, I thought about calling you, but you know...." and her voice trailed off. Not because she was embarrassed or had an epiphany about her blatant disregard not to invite me, but because she knew, just as I did, that I don't belong. Not here, not in this group. I could feel the corners of my mouth drop as she was talking to me, by the end I pulled a smile and turned around, sinking quietly in my chair. "Why was there?" I thought.

Gabe had a really rough time at McDonald's. There was hitting, lots of sweat, pee in his pants and a lot of screams bellowing "No Thank You!". I had to carry him out to the car when we finally left. We sat there together, quietly. Gabe was protesting the car seat and I wanting to just drive away to anywhere that did not have golden arches.

I haven't felt so trapped in myself in a long time. I was trapped in a car, outside the McDonalds in sight of the play place. My 'friend' grabbed my bag for me and Gabe's coat when I said I had to go, because he was having a hard time. After unlocking the door, frantically watching as Gabe started walking away in the parking lot with just socks on, my 'friend' throws my stuff in the front seat, turns waves and says goodbye. If I didn't know better, I would think that I have just been voted off this world.

It's OK if you have that icky feeling after reading this. The sourness in your stomach that reminds you, Thank God you're not her. I have it too, but unfortunately I am her.

Thursday, April 26, 2007

The Group, The Diagnosis, The Million Dollar Question

I made the long drive today to Gabe's doctor. What used to be a 10 minute drive, is now an hour from our house. It was so conveniently close to our former house, going to the doctors couldn't have been any easier. We have tried switching, but doctors are really funny about letting you join their "patient club". You are snubbed appointments, until you can prove yourself worthy. I just don't have time to play that game. Our doctor has never turned us away, we have never had to wait an obscene amount of time in a waiting room or examining room, and he always greats us with a smile. So, what's a little scenic drive now and then?

There have been times that our beloved doctor is not in and we have to reluctantly see one of the other doctors in the group. I will describe them as follows....

The Head of the Practice- Doctor "I know everything and you know nothing"
He was snubbed once by parents with a child who has Autism, because they wanted to try Chelation and he obviously thought they were wrong. He takes up all his issues about Autism with me, much to my chagrin.
We see him only under the most extreme circumstances.

Doctor #1- She has a great accent ( I always envision a beautiful countryside in some far away place when she talks), but she is a terrible listener and can be a tad bit condescending.
Boo was born Frank Breech. She was the only doctor to advise getting X-rays of her hips to make sure they were OK. I can't help but have a place in my heart for her.

Doctor #2- She loves to reference books, talks really fast, but still not a bad alternative. She was the first doctor to visit me in the hospital when Boo was born.

Doctor #3- First doctor we interviewed in the practice, but she never really takes a close enough look for me. Just didn't jive with her, so we switched to our current doctor in the group.

Doctor# 4- Doctor P., our doctor now. He's funny, the kids love him, not too shabby to look at and is smart in a non condescending way. I wish he knew more about the specifics about Autism.He told me once that," being a doctor feels wonderful when you can help someone, but there are times when you can't and that's hard to take."
I felt like hugging him after that comment. We had just found out Gabe had Autism. He was the first (and only) doctor to admit that he didn't know everything.

Doctor #5- She has read all the research, keeps up on all the journals and could possibly cure a disease in her spare time. She is all business. No time for all the niceties.

The last doctor is who we saw today, Doctor #5 (Please do not attempt small talk). Doctor P. was not in today. I asked again about the rash on Gabe's face and, much to my surprise, received another possible diagnosis...Keratosis Pilaris. Huh.....not Contact Dermatitis, because it is persistent. Yet, still no affective treatment.

Our main reason for being there was due to the appearance of some bumps by Gabe's wrist and on his legs. We had spent the entire weekend outside and I had just thought it was bug bites. I saw him swatting in the air the other day as we played outside saying, "Go Away! Go away!" arms swinging wildly. Isn't it odd how the people that hate bugs the most get swarmed 9 out of 10 times? Gabe's itching lasted for days and a few more bumps joined the already present ones.

SD swells when he gets bitten by mosquito's. I thought maybe Gabe was also very sensitive to the bites. By the third day, SD told me it could be Poison Ivy. We both thought, where would he have come in contact with Poison Ivy? Our trees do not even have leaves yet. Maybe a dried up leaf from the fall? Come to find out, Gabe must have come in contact with something he was allergic to, tree pollen, maybe grass, and scratched himself, letting the allergen under his skin and "TaDa!" instant reaction. The bumps aren't infected, so no Staph infection. (Gabe is more prone to those kinds of infections due to his excema) Whew!

I kept asking him (as he was itching) "Do you want some itchy medicine?" (Hydrocortizone or chewable Benadryl-both not bad in his book)

Gabe kept saying, as he was itching wildly, "No, I'm OK."

"Doesn't it itch?" I say sympathetically.

"No." he responds.

"Gabe, then why are you itching? It must really itch. Are you sure? Let's get some medicine." Two seconds later, he is fully medicated and itch free.

How come he just can't tell me?
Where is the connection not being made?

This has become a huge mystery for me lately. So many things have clicked with him lately that I am completely blown away everyday. But, this, telling me he needs help when it comes to his body is just not coming together.
What is preventing him from making that connection?

He asks me all day to help him with his marbles, choosing a video to watch, what to eat, and so on...just not with his own body.

What am I missing?
Or better yet, what is Gabe missing?

Tuesday, April 24, 2007

My Third Start

I have actually had a few things to talk about, but after I purged them out onto my cyber canvas, they didn't seem to be able to sustain the dimensions of the page. They just fell flat, sprawled out, taking up space. So, that left me here with these random thoughts that have been floating around in my mind lately...

What classifies something as an epidemic? defines it as something that is extremely prevalent and widespread. So, with that in mind, even with the argument that just more children are being labeled as "on the spectrum" due only to diagnosis criteria, isn't Autism still an epidemic? I read a parenting magazine yesterday, while waiting in an office, that was clearly trying to convince parents not to buy the hype. What is that magazine trying to sell? That Autism is just a figment of some people's imagination and it doesn't normally happen to good people that read their magazine?


I still love to walk. I walk as much as I can, because it keeps me sane and a whole lot less anxious. One thing I have noticed is I have great toned legs that I can now flex and show an impressive muscle. However, that same muscle that helps also to tighten the rear is still resting under *ahem* a few extra pounds . These unwelcomed pounds are making my pants tighter and less forgiving. God has a sick sense of humor when it comes to my body.



Gabe is still doing great, in fact we have left the "ABA trial table". I work on his programs incidentally throughout the day through books, play and general conversation. His last day in his speech based preschool will be in June. In the fall he will attend a regular preschool. I have begun to create a flyer to give to the teachers about some Gabe-isms.




Some Gabe-isms
1) Sometimes I repeat what people say when I don't know what to say. Just ask me another way. There are times I may need a little extra help.

2) When I am hurt, I may not tell you. Sometimes I say "No, I'm OK" even when I am not. If you ask me very specific questions like "Does your knee hurt? I will be able to tell you. I may even give a little hug.

3) I am allergic to many foods. I am also a pretty picky eater. I don't mind only eating what mom sends from home. She also packs special treats in my bag in case someone brings in a special treat I can not have.

4) There are times I get so excited about something that I may ask for it over and over. Mom reminds me what she said and then lets me know if I ask again I may not get what I am asking for. I have to admit, this technique works well with me.

Those are a few that I have thought of. I don't want to mention that he is Autistic, although they already know, for the simple fact that I believe people see the word Autism and think of its stereotype before seeing Gabe.

Here are some more thoughts....

With Melissa's great advice, I am going to call and make an appointment for my thyroid this week. Thanks Melissa!

We have had quite a few schools on lockdown since Virgina Tech's shootings, because of similar threats. The school locks all the doors, outside and in, the teachers remain with the students in the classroom, while police officers search the school. It can be very scary, real or not. SD is a school teacher. Everyday now I wonder if he will be coming home. What has happened to our world?

So, there you have it, my current state of mind.

Tuesday, April 10, 2007


Did I mention that change is difficult for me sometimes? Even though, I know it is inevitable? That it is happening even when I swear it isn't? That I am so hell bent to keep this fast pace of therapy for Gabe that I missed the flags declaring the last lap of the race?

-Gabe is age appropriate for his ABLLS -R (Assessment for Basic Language and learning Skills- Revised).

is age appropriate!

He walks, talks and acts like a soon to be 4 year old.

He is picking up things at lightning speed. Gabe is filling in a lot of the gaps all on his own-no program, no fruit snack reinforcers....just Gabe putting all the pieces together. He has not completed the ABLLS, but he is on his way!

*Bring in the band! *
*Swedish Fish for everyone!*

I wonder, silently (selfishly?), where does that leave me? What I mean is, what role will I play now? I obviously will still be Gabe's mom, but his needs are different. It feels like a shift, movement of the earth's plates, similar to your child entering the years of being a teenager. The years where what you thought was right, could be so very wrong. How do you navigate that world?

I left the NT world 2 years ago. I left the phony friendships that were based on where you live, what kind of house you have and the image of being the "perfect" mom. I was scared, but somewhat relieved. I was losing that race quickly, I was more interested on where I was going with my kids then who was running next to me and if they were wearing the "right outfit".
In return, after venturing forward in a completely different direction, I was then unconditionally embraced by this Autism Ring and other parents with children on the spectrum. I found a world that revolved around what it truly meant to be a parent, especially a mother. I have felt more of a connection to the amazing women and men through our Autismring, than neighbors I have lived next to for the past five years. I have cheered, cried and sent good vibes to many who have posted ideas and thoughts about their children that have enabled me to push through another day. I will forever be grateful.
When I am asked about what I think are the first things a parent with a child newly diagnosed ASD, I always say, get the best evaluation you can afford, write everything down (everything) and read blogs or journals by other parents with children who have ASD. You can begin to feel very alone and just reading other parents thoughts can be very comforting. The world of ASD doesn't have to always have horrible connotations. I have found that doorways exist here that would've never been opened anywhere else. I have had many doors closed with the mere mention of ASD, painfully, right in front of me. There were also many more opened for me by another caring parent who just knew what it was I was going through with Gabe, because ASD had touched their lives too.

My son is ready to move on. He is ready to explore beyond the world that I have created. He is dipping his sweet, little toes in the crisp, cool, spring puddles. He is dancing around the edges, laughing at his reflection, admiring the ripples created by the gentle tap of his foot. I, however, can't help but hover, anxiously, arms poised to catch each and every possible fall. I am on the sides, trying to cover the puddles with my coat, hand within reaching distance, hoping to guide him safely around them. I am still the mother that worried about her son night and day, spent late evenings reading anything and everything about Autism, called doctors and pursed answers. I can't just flip the switch to off and leave that person behind. I can't seem to even dim the light.

Am I out of my mind?

This is the path Gabe has created. This is where he needs to go. All his therapy has lead him here. Isn't this the road I created? Shouldn't I be skipping, running towards the end?

I am.
I am overjoyed.
I am estactic.

With it comes anxiety (Can it be true?) Hope that seems so fragile (How long will it last?) Self doubt (Will I recognize when he is having trouble again?)

I know that we are heading in the right direction. The world just looks different. Sunnier perhaps? More flowers? More smiles?

Change is hard for me, but it seems to really work for Gabe