Thankful

Today, we are thankful for diagnosis.

This past March, Philip was definitively diagnosed with Aspergers. Just a few short months later however, we have found a whole new world of promise, hope, and encouragement through the support of each other, family, and community. We have taken part in our state PieceWalk, and are now taking part in organizing the walk for 2011. We have been through both the red tape and fabulousness of an IEP. We have seen great growth in Philip, and the growth of a guardian and protector in his little sister, Evelyn.

We have rejoiced and chuckled at his wonder and excitement for learning, and marveled at the things his young mind can comprehend. ...And sure, we've cried when a leap forward meant three huge steps backward in other areas.

Philip and Evie, we are so proud of you. And we are so thankful we have resources and answers to give you, Philip, and Evie, tools to be a helpful sister and understand. WE LOVE YOU.

Happy Thanksgiving!

Quote for the Day

Philip, "Mom... When is God going to make a new flavor of Rolo's?"

News

Thursday, Philip's speech pathologist said they had completed all the goals they had written for the IEP this year. While this is very good news, it's distressing too, because she mentioned she wouldn't be working with him as much anymore, and that they IEP won't be rewritten until the 1st grade, which means a whole year and a half without new goals.

Yes, he's corrected his L's and is looking at people when he speaks with lilt in his voice. But there are still SO MANY THINGS going on. And once one piece is improved, another piece of the puzzle moves out of place and we're essentially back to square one.

Please send prayers, thoughts and good juju we're on the right path. Because now, I'm nervous.

I Will NEVER Know Where This Came From...

Me: Philip, go wash your hands before we leave for school.

Philip: (furious, and yelling) Well, you're just all pride and valiance, aren't you! UGH.

...Um....Wait....What? Huh?

The Sophisticated Party

Philip turns five in just a few weeks and plans for his party are underway. These are some of the conversation snips that have left me a little off my game in the planning department, and illustrate Philip and his amazing mind!

Me: Philip, what kind of cake would you like?

Philip: The Periodic Table

Me: What flavor do you want it to be?

Philip: Well...eggnog. Because that's my favorite.

Me: (BLANK STARE) I'll...um.... (dialing) "Mom? How do you make an eggnog cake???"

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Me: What kinds of games do you want at the party or activity?

Philip: Science experiments. And I want each kid to be a different element.

Me: (BLANK STARE) I'll....try...I.... (click click GOOGLE click click)

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Me: What kind of sacks do you want for the goodie bags?

Philip: I want them to have an element on each sack for each kid.

Me: I can do that one! I can do that one! HOORAY!!

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*****Read, then see below.

Me: Do you want the 5 candle, or the sparkler "P"?

Philip: My name is Philip. It isn't 5 or "P". It should say Philip. Or "My name is Philip."

Me: Well, the people at the party will know your name is Philip. So let's just put Philip, not "my name is."

*****Philip DOES NOT like nicknames. He does not like abbreviations. And this came off of having spoken to his Speech Pathologist the week before who told me she had been working with him and said, "What would you do if someone called you a bad name?" Since he takes all questions at face value he said very simply. "Well, why would someone call me a bad name? My name is Philip." She said, "Well, what if they said, 'You're dumb!' or something like that." He smiled. "Well, that's just silly. They would call me Philip because that is my name." She said she really had to work not to smile because she thought it was so sweet.

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Philip: Mom?

Me: Yes?

Philip: ...I really like my treat sacks. And I like that you did the element Pd for me. Because my name is Philip Deaton.

Me: (Hugging him) Yes, I thought you'd like that (smiling).

Removed

Philip has been working 80 minutes a week with his speech pathologist at school (set through our IEP - Individualized Education Plan - this summer). He loves her, and the progress I have seen in just a few short weeks is nothing short of miracle status to me. Philip has begun instigating conversations. He is looking people directly in the eye. He has also begun to attempt vocal inflection, which is very sweet and interesting to hear, especially given the weight of his natural voice.

As a mother, however, I feel like an idiot in the middle of all this success. In the past few weeks, Philip has become extremely attached to me, to the point he has asked me not to leave the premises of the school while he is in class. He wants me to sit in the lobby, or wait in my car, for the two hours he is in the building. When I have tried to explain this is not an option while I am trying to scoot him down the hallway to his classroom...he is screaming, sobbing, holding onto me. And on a few occasions, I have gone outside, begun to pull out of the parking lot and have seen him run out of the building screaming trying to find me. Now, I have learned I must wait for five minutes after I get him in his room to make sure he doesn't pop back out.

This is also a massive blow because the last thing we wanted was for his classmates to have any excuse to find him any more different than he already is. Not only has HIS class seen this (all 19 other kids), so has the kindergarten class next door, as well as the entire DD program across the hall, and the 4th grade class that walks by to switch classes when his pre-k class is convening. There have even been occasions where other teachers from various classes have come in search of the screaming. Including office staff and his SP, who stayed with me for 10 minutes trying to calm him.

There is also the fact his little sister, who is 3, is with me unless she is at her Mother's Day Out. It's stressful for her, too. She does what she can trying to calm him down, too.

So what is my feeling of failure? ...HOW DID I MISS THIS IS ALL STRESS FROM THE CHANGES HE IS MAKING THROUGH HIS SP THERAPY???????

He's stressed out! It doesn't matter if he loves school or loves his SP classes. Change is HARD for some Aspergians. And here he is 80 minutes a week going through tons of it. He is also so bright, I know this plagues him. I can see Philip correcting himself and saying things over, trying to get inflection or volume different. He has even begun saying "girl" correctly, instead of "grel." But I can see him really have to stop and think before the word comes out.

I'm the constant. And we are only apart for 2 hours a day, Monday through Friday. I get it now. He needs me to be there to make sure nothing else falls apart or changes. He keeps saying he doesn't know what happens to me or what I do when I leave the school. I get it now. What if I changed?? He changes while he's there, what if I do the same?

Philip has always had this when he goes away. Even when he was 18 months at his first Mother's Day Out program, when I would bring him back home after school, he would do a lap around the house to make sure it was still the same, and have to count or review all of his toys.

Sometimes I think I just can't remove myself from my own situations enough to see clearly. I wish I could. The last few weeks would have gone easier.

A Costume That Conceals Nothing

My son and I had several discussions on the matter of dressing for Halloween. This has proven a tedious subject, with carefully chosen wording on my part, as not to distress him by using words that can sometimes be confusing. One word in particular, "Funny."

Since public schools are no longer allowed to have "Halloween" parties, they have adopted the "Fall Party," themed, allowing children to still dress in costumes. I made the mistake in preparation for the Toy Story party at his elementary school of saying, "Dress as Big Baby. Everyone would think it was so funny."

"Funny" did not translate as "evoking humor from the movie and making people enjoy the way you are dressed." More like the scene from Carrie where the mother keeps saying, "They're all gonna laugh at you!!! They're all gonna laugh at you!!!" Sheer and utter horror for my son.

Our task from then on was to find a costume that in no way would make anyone smile, laugh, or have any fond memories of any movies. I didn't know what I was going to do because of this.

Philip, as usual, concocted the answer all on his own; one that suited him to perfection. "I want to go as Electromagnetism."

The book fair had a series of books by Simon Basher and Dan Green (www.basherbooks.com) that had Philip unable to calm down, he was so inspired. I allowed him to purchase four of the six books displayed (which was the start of LOUD arguing on Philip's part), one titled Physics: Why Matter Matters. In it, there is a section titled "Electromagnetism, Electric Cuties" with an illustrated picture of Electromagnetism. That is what he decided he needed to be. To him, this was better than any licensed character. And I agreed.

There will be no disguising who my son is this Halloween. If this is not proof of his brilliance, and resilience, I do not know what is. He proudly wears on the outside his difference. And man, this is all a mother could hope for. "You are perfect the way God made you" is a lesson he has taken to heart.

I love you, Philip.

Observatory

My son has been telling me all about the planets, what he likes and doesn't about the various gas masses billions of miles away in the sky. Mercury is a source of disgust for void of color and landscaping, while Jupiter evokes a soft spot for aesthetic quality. We've been discussing the purchase of a telescope after our recent trip to the Planetarium, having spent an hour observing stars and planets in their natural dark habitat, illuminated for us to see.

And just one day later I found the pair of us at our Mother's Day Out where Philip attends and I teach in a different classroom. We ended up in the same gymnasium time this week, a rare occurrence, and I was able to see my Star with a number of other busy constellations running in all sorts of directions. Yet my Star was anchored to the bleachers, fixed on the top row like the North Star, stationary in the midst of such chaos. No matter what direction the others traveled, my little Star sat still. Frowning. Crying. Confused at how to join in and studying me for what to do next. It was a painful observation session.

It got me thinking about Mercury and why he has a strong dislike for it: Similarity. You are who you are, and sometimes you just can't change it, no matter how colorful or rocky you wish you were. Some are just smooth and colorless, some just don't have the range others do. And when you are fixed in position to just stare at the variations... It's going to turn you cold and colorless deep inside, not just on the surface. You are, isolated, in the midst of the galaxy.

This week, we are going to get a book from the library on Mercury, and discover all the good points and rarities about this planet. I for one have always preferred gray to other colors. You always know what you are going to get, and the shades are predictable. There is something to be said for dependancy. I like knowing who I can count on.

The Waiting Game

The button is pushed in. You know it's working, because it lit up when you pushed it. For some reason, you push it again, thinking the more you push the button, the faster the elevator will appear, open up to you and let you inside.

But the longer you stand there, the more you push the button, the more frustrated you get, and still no answer from the elevator. You can see that it's going to all other floors but yours. Other numbers light up. Just not your floor. And still you wait. If you take the stairs, you could miss it. You could miss your opportunity for this ride that is going to make the waiting worth it.

This is what I told the child psychologist as I explained my concern Philip could have Asperger Syndrome. That I could "feel" his responses and not see them. He said, "Write this down. Because it's the best explanation of Asperger's I've heard."

Six months ago, life went diagonal, and I took the stairs so I could meet my precious Elevator. While my husband and I have always known our child did not fit the standard mold we told ourselves he was unique. And so he is. More so than being unique, however, is the clear distinction that he and other children are clearly not following the same developmental patterns. We told ourselves he was an academic, that he preferred to learn over imaginary play and probably even congratulated ourselves on such a fete having a child with such a lusty penchant for learning.

Then in October, we had to face what we didn't want to: There is a problem. No matter how bright or thirsty for education, our child does not relate to other children. Crying is the standard while at school, tears owning 75% of his day. Frustration fuels him as random switching of activities throughout the day leave him reeling for a schedule, resulting in a rage-filled fit in the bathroom punching doors. Then there is the covering of his ears and screaming while entering a fetal position in the gymnasium for lack of being able to focus. It's unbearable to hear the reports, especially since he can read on a 3rd grade level, study and understand maps, understand the entire structure (inside and out) of the human body, and loves medical science. You would think school is the place he should be.

Our son is only 4.

Watching this tiny, sweet, hilarious man turn to a frustrated pile of nerves is a horror any parent would want to tackle to the ground and abolish for life.

So begins my training as my son's champion. After months of waiting for appointments and answers, our journey began one month ago upon receiving the definitive diagnosis our son has Asperger Syndrome. For those of you beginning your journey, for those lost in the waves of paperwork waiting for diagnosis, this is for you. A step-by-step of our process to find Philip in the puzzle of Autism and the sweet, funny, tearful, trying moments we encounter as the Elevator Goes Up.