Tuesday, November 30, 2010

Hello and Goodbye

Transition -- a passage from one state, change, subject or place to another: change

Ethan's in school now. He was whisked off by his teacher yesterday almost before I had a chance to say goodbye. I am happy; excited for him. I'm looking forward to having some time to do things I've been meaning to do for, well, three years. I have a goal to take in more work on freelance projects, get reconnected with some people, start offering my input on the special needs ministry we're starting at church. I'm ready to go, but I'm still saying goodbye.

I've joked before that saying goodbye has always been such a miserable thing for me. I once had a crush on this guy who joined the Coast Guard. I spent the summer of 1989 writing letters to him that I knew I would never send. Whenever managers would get transfered from my job at McDonalds (McDonalds!) I would get all weepy and melancholy. When I left Baystate I had the song by Green Day running in my head for weeks (Another turning point a fork stuck in the road/time grabs you by the wrist, directs you where to go...). When Dan left for college you'd think he'd gone to study abroad rather at UMass. And when I had Ethan I mourned the loss of time I had with Anna, the change, the different-ness of it all. I'm the queen of turning change into a made-for-TV movie, like the Hallmark film on the other night, but this time it's different.

I'm saying goodbye to a whole way of life, and it's making me feel, well, old. Both of my kids are in school now. My days with very little children, with wailing, spitting-up, gummy-grinned, drooly babies and toddlers are done. This isn't so bad in itself...but there aren't many friends I know who are not in quite the same place. Most of them are a few years younger. Their kids are still at home and they're on their last baby. Or they don't have kids or their kids are older, but we're not close anymore. I hear this little voice saying sometimes, "Do you know what you're doing with your life?"

The voice attempts to scare me, but I don't go that route. I have Ethan to thank. I was thinking the other day of a Max Lucado book that I've never read. I love the title, though: "The Cure for the Common Life." This is yet another gift my son has given me. Sometimes I think where I would be if he were a typical kid, and I almost want to shudder. Maybe that sounds horrible. I don't want him to have autism and I don't want him to experience the many hurts that are out there in this world. But Ethan...well, he helped me stop seeing autism as something to run from. He helped open my eyes in a way I wish I had long ago. Without Ethan, I can see myself playing some sort of suburban game, cushioned from the realities of life, doing everything in my power to create my perfect world rather than longing to bring help and healing to this hurting world. I think of all the people I've met, lives I've discovered, the rich moments that have filled up my heart in the past year or so. Life somehow seems more real, if that makes any sense. I'm not playing games anymore. I'm not seeing through such clouded eyes anymore. I feel a sense of purpose that's more deep and fulfilling than the things I once dreamed of.

It's just...the purpose hasn't fully taken shape yet. And I still feel raw from the goodbyes, the change, the drawing close to age 36, the chapters in my life that have ended and doors that have closed. I keep taking looks back, even while I'm stepping forward. It reminds me of one of my favorite old songs by Sara Groves, "Painting Pictures of Egypt," which has been dancing in my mind often recently. I will end with this:

I don't want to leave here
I don't want to stay
It feels like pinching to me either way
And the places I long for the most are the places where I've been
They are calling after me like a long lost friend

It's not about losing faith
It's not about trust
It's all about comfortable when you move so much
The place I was wasn't perfect but I had found a way to live
No it wasn't milk or honey but then neither is this

I've been paining pictures of Egypt
But leaving out what it lacks
Cause the future feels so hard and I want to go back
But the places that used to fit me cannot hold the things I've learned
Those roads were closed off to me while my back was turned

The past is so tangible
I know it by heart
Familiar things are never easy to discard
I was dying for some freedom but now I hesitate to go
I am caught between the promise and the things I know

I've been painting pictures of Egypt
But leaving out what it lacks
Cause the future feels so hard and I want to go back
But the places that used to fit me cannot hold the things I've learned
Those roads were closed off to me while my back was turned

If it comes too quick I may not appreciate it
Is that the reason behind all this time and sand?
If it comes too quick I may not recognize it
Is that the reason behind all this time and sand?

Friday, November 26, 2010


Ethan woke up from his nap early yesterday afternoon. That morning we had said our goodbyes to Jessica and Birth to 3. Somehow the house felt empty. I looked outside and saw the sun and the wind whipping the trees and told the kids to get their coats, we were going outside to play while there was still daylight.

The maple in our backyard, always the last holdout each fall, was finally almost bare. I looked past the swingset, up the hill and into the wind that was wrestling the last of the leaves to the ground and a picture flashed in my mind. I saw Jessica and I standing in this same spot almost exactly a year before, feet crunching in the leaves, watching Ethan push his wagon up the hill. We had been talking about something, I guess about Ethan and the way he played outside, and suddenly I started crying. My heart felt broken as I described how tired I was of chasing Ethan out there, that he thought it was a big game to run around the house -- and how I kept remembering the days Anna and I would play back there when she was small, how she had had my undivided attention and now with everything happening I felt I had let her down. I had failed her, and I wondered: would it ever get better?

That was a year ago, I thought. Was that possible?

"Okay guys!" I shouted. "It's freezing out here. Let's play chase to warm up. One, two, three, come catch me!"

I took off across the yard, and there was Anna shrieking behind me and Ethan behind her. They followed me up the hill and under the tree now free of leaves, Anna's magical fairyland tree in the summer, under which the lily of the valleys grow in the spring. My kids caught me and gave me hugs, Ethan unceremoniously wiping his dripping nose on me in the process.

"Now catch ME!" Anna screamed, and was off, and so was I, and Ethan, yes Ethan was following us and not just pushing his lawnmower around or trying to disappear around the house.

We sat on the swings, trying to catch our breath, rubbing our hands together in the cold, knowing we'd need to go in soon. "Push higher mom!" Ethan commanded. Anna wanted to make up another game about her bratty imaginary enemies. "Can we play Prune Girls?" she pleaded.

It's been a year, I kept thinking. Fall, winter, spring, summer, and fall again. In my mind's eye I saw water fights with the hose and taking the sleds down the hill in perfect glittering snow and breezy summer afternoons under the shade of the maple, swinging and looking up at the big blue sky. I saw the faces of every person that had been a part of our lives and a part of our family in the past year, helping us begin this journey with Ethan and autism. That was all? I almosted wanted to ask. They're really gone now?

Anna grabbed a piece of sidewalk chalk and began drawing all over the patio. "Do you want to draw too?" I asked Ethan, and joy of joys, he took a piece of chalk and started coloring...and coloring...and coloring. More than five minutes of coloring, for a boy who typically views it as a necessary evil. Anna was drawing a baby with the word "goo" coming out of her mouth. Then she got mad when Ethan scribbled over the baby's face, and I probably should have been more stern with Ethan but was so glad to just see him enjoying the chalk for the first time ever. But I did give Anna more time to draw another baby even though we needed to get inside, if that counts for anything.

Somehow in that moment I truly felt as if my heart would burst, just splatter right there on the patio. A year had gone by. My son still had autism but the little boy with the big grin chasing his sister and his mom around the backyard was not the same person. Neither was I. A year had gone by in a blink and there was no denying my children were marching past the sweet years of childhood at a startling pace. I wanted to stop time and somehow simultaneously push them to fly. I wanted to hold on to this way of life I'd grown comfortable with yet let it all go and see what would happen next. If it's possible to feel profoundly grateful, sad, and joyful in a single moment, well, I was.

You can do this, a voice whispered as I ushered the kids inside. I was reminded of my time at Baystate, creating videos about babies born way too early, whose parents watched over them for months in the NICU and grew to know and love the staff there like a second family. When it was time for their little one to finally go home, parents would always tell me, a part of them didn't want to go. A part of them was afraid to leave everything they'd known behind and take their child out of that protective bubble. But in the end their joy always overran the trepidation.

Darkness was coming. Thanksgiving was coming. I wanted to wrap my kids in my arms and squeeze them in the kind of hug that makes it difficult to breathe. I wanted to thank everyone I'd already thanked. I wanted to dance, but it was Anna who needed to get to ballet class, literally. While we drove we looked for Christmas lights; those bright spots in the darkness, hinting of beautiful things to come.

"There is a time for everything, and a season for every activity under heaven." -- Ecclesisastes 3:1

Wednesday, November 24, 2010

On Giving Thanks

I used to hate November. I disliked the dreariness, the heavy feeling of darkness so early in the evenings, the trees stripped bare. November and March left a bad taste in my mouth, but at least March had the promise of spring.

About 15 years ago, however, I realized how much I really love Thanksgiving. I have to say it's my favorite holiday. Thanksgiving has nothing to do with the expectations, the gifts that someone didn't like, the family Christmas gathering that wasn't exactly (or even close) to the Hallmark commercial. Thanksgiving was about well, thankfulness, first and foremost. Imagine that: the beauty of a day set aside to reflect and be grateful. Over time I've embraced everything about Thanksgiving with open arms -- the long walks we used to take in Forest Park before the meal, the hokeyness of the Macy's parade, the deliciousness of green bean casserole. Thanksgiving makes me smile.

How fitting it is that my little boy was born this time of year. He wasn't supposed to be. Ethan was due on December 13, just a few days before my birthday. "ANOTHER Christmas baby?" I had groaned (Dan's birthday is Dec. 22). But no, Ethan was a Thanksgiving baby. Thanksgiving was early the year he was born, but at some point his birthday will be on actual Thanksgiving.

My water broke with Ethan in the parking lot of Barnes & Noble. The November morning was partly cloudy and unseasonably warm. By the afternoon Dan and I were heading to Saint Frances, while my mom played with Anna in the leaves outside.

Dan and I argued about whether to name the baby Ethan or Jacob, if we had a boy (we were playing the guessing game, this time). Both names were so popular but it was all we could agree on. I liked Ethan ("firm, strong, steadfast," said the definition in the Baby Names book). In my room we watched reruns for hours, waiting for labor to hit. Day turned to night. November 27 turned to November 28, and then in the wee hours of the morning, we heard those words: "It's a...boy!" Ethan Daniel.

He was such a tiny, hunched little thing. He was so, so sleepy. Was it being 15 days early, or the jaundice, or something, anything to do with his eventual autism? He seemed so helpless, even more so than Anna at birth, if that makes any sense.

I didn't fall asleep until about 2 or 3am the night he was born, and woke up before sunrise. I remember getting up and looking out the window over the mostly sleeping city of Hartford. The sky was growing pink. A flock of birds soared overhead. There was a beauty in the stark silouhettes of maples, in the neighborhoods coming to life. November was beautiful. Somehow, for the first time I saw the beauty in the still and emptiness.

Thanksgiving is coming, Ethan's birthday is coming, and I am thankful. I am thankful for my little boy, for all of my family. I can't say I'm thankful for autism, but I am thankful for all it's brought me: an appreciation for the small things. An outright joy at every milestone reached. A newfound peserverance. A firsthand witness of God's provision. An ongoing lesson in unconditional love. And yes, even the revelation of ugly things within that needed and need to go. November can be beautiful, if we choose to see it that way. There are so many treasures we see when the leaves are gone, when summer is just a wisp of memory.

Thanksgiving is tomorrow. Ethan's birthday is in four days, and I'm giving thanks. I'm celebrating.

Wednesday, November 17, 2010


In the spring, I did a Beth Moore Bible study at church called "The Inheritance." One of the major themes of the study was that our life experiences are part of our inheritance from God, just as much a part as our talents, our physical possessions and so on. We can picture them as a field, and the question is, what will we do with it? While not everything that happens to us originated from God, it can all be redeemed. Do we have the courage to face those things, to overcome evil with good? Will we take the field we've been given, even the rocky, thorny parts, and allow it to be transformed into something beautiful and fruitful?

After the study I felt compelled to write our pastor a letter. This might not seem like a big deal, but to me it was. We go to a big church. I don't really know the pastors and the few interactions I've had with them have been quite formal. And to be honest, I have a hard time completely trusting and opening up my heart to pastors, after some bad church experiences. But there I went, gushing things out to the pastor, having no idea how he would take it. I thanked him for his ministry, and in particular for preaching about healing when he has struggled himself with a chronic health issue for years. I told him how much it had blessed me, to see his wife working during the service with a special needs child, due to my past history with pastors long ago who were insensitive to my brother's autism. And then I went all out and referenced Beth Moore's study and how I felt a part of my inheritance, of allowing God to redeem past experiences, would be help to help be a part of a special needs ministry at our church. He had just told us in a sermon a few weeks before, if we wanted to start a ministry, go for it! Don't just wait for the pastor. So I sent the letter, and then I heard nothing.

I thought about next steps. I thought about who to talk to and all of the chains of command. I spoke with a few people connected to the higher ups and heard little snippets of this and that. I wondered if the whole thing was just going to die. I knew there had been other families who had been hoping, praying for something to happen at the church for much longer than I had. Other people had the same passion and desire, other people had asked, and something was percolating, but it was hard to tell just what.

I saw the pastors at the church picnic but couldn't bring myself to bring it up. I wondered if he'd even gotten the letter, and why I had written so much, and if I wasn't just foolish. Sometimes I can be too transparent. Worse than that, I was struggling to believe the best, to not walk around with an attitude, to keep the faith. When you've had at least three pastors and churches let you down, this is harder than it sounds.

So I put it aside, or opened up those arms and let it go, at least for awhile, as I focused on Ethan and the whole preschool transition process. And then the other day I received an email from a woman at church who teaches children with autism as part of her "day job. Part of it read:

I’d like to invite you to an informational meeting regarding the beginnings of a special needs ministry at our church. As many of you know, this need has been ‘in the works’ for some time now. During this meeting I plan to listen to your hearts and ideas and share with you my vision and plans. I know that some of you have had to be very patient but I believe that the time is now and God’s blessing is on it. I’ve been able to discuss this with Pastor Dave Mullin and Pastor Dave Waite and they have extended their blessing and recognize the need.

I read the words and wanted to dance for joy, but I needed to get to my MOPS meeting. As I put Ethan in the car and started driving, I realized I was crying. Everytime I tried to stop, I kept crying. I have always been a crier, but there haven't been too many times in life that I haven't been able to stop happy crying.

I couldn't help it. As I drove down 291 in the November sunshine, I cried while so many pictures flashed in front of me. I saw my 1o-year-old self, outside Pioneer Valley up on the hill near the woods, watching Andy alone while the service went on inside. I saw Joy Church and Andy running out of the nursery and flipping off the lights on the congregation, and little hunched over sweet Grace wanting to help Andy but not being able to handle him, as time went by, and big-hearted Dennis who used to offer to help out, at New Life. I thought of Betty in the nursery at CLG, telling me about the soft spot she had for Ethan and the boy with autism she used to watch 20 years ago, who still writes her letters.

In my mind's eye I saw the wearied faces of parents of special needs kids, the woman who told me she has never left her son because he is completely non-verbal and she doesn't trust anyone to watch him, another one with four kids on the spectrum. I thought of people at the autism support group with their resigned kind of humor and acceptance and people I have never met who don't go to church or have left church because there was nothing there for their kids, especially understanding and compassion...these precious people who so desperately need a break, a revival of their spirits, and their children who so desperately need someone to see them for who they truly are.

I thought all of this, and I cried, because I was thinking with all of my heart that yes, this is what Jesus would do. This He would make a priority. And I was accepting that others do care. Others have a heart for these kids and their families. And that made my heart heal in many places.

Tuesday, November 16, 2010

A Good Day in First Grade

Ah, to be six again. Anna came home from school yesterday bouncing all over the place because of all of the incredible things that had happened. They are as follows:

-- Won 10 free tokens to Chuck E Cheeses for being one of the students to remain very quiet during seatwork time
-- Was chosen to be custodian's helper this week, which meant she got to go back with Mr. B to a secret room with a door marked "No Children Allowed" to get some trash bags
-- Her team this week, the "Waterfalls," won first place (70 points!) and she got to pick a prize from the prize box
-- Made it to the highest level ever on Space Out, a math game in the library.

I'll say it again: Ahhh, to be six once again.

Thursday, November 11, 2010

Dr. Milanese, Take 2

A year (and six weeks) later, and everything was different. Even the location, as the developmental pediatrics department had moved from inside CCMC to a building down the street.

At 9am Dr. Milanese and Jen, the speech pathologist, came to get us, and brought us to a room much like last year with the same spread of toys laid out. For a moment, Ethan didn't want to go in and when we did get in he clung to me. Then, he saw the same Sesame Street toy from last year on the table and began playing with it. From there, I was delightfully bombarded by the improvements he's made, one after another.

Last year: would only play with the Sesame Street toy. In fact, mostly he wanted to play with one button on the Sesame Street toy. He may have briefly looked at something else Jen introduced for a moment, but then it was back to the toy. When we took the toy away, he lay on the floor and cried.

This year: Gravited to that prefered toy first, but was quickly distracted when Jen asked him to look at something else. He was looking at her, smiling, laughing, requesting.

Last year: Ignored every toy she had layed out in the corner of the room to entice him.

This year: Ethan quickly found the truck and pushed it around, rolled around and threw several of the little balls, and played with the Jack in the Box type toy.

Last year: Ethan didn't look at either of them at all and used a couple of words to request something from me.

This year: While eye contact is still an issue, it was much improved and he used many words and short sentences/phrases to request and comment.

Last year: If we got to the imitation portion of the assessment, I either don't remember it or it didn't go well.

This year: He imitated bouncing a toy frog, pushing a car and making a car noise, and pushing a wooden block as if it were a car.

Last year: I KNOW we didn't get to pretend play.

This year: He pretended to take a drink, and helped Jen put "birthday candles" on a cake for the baby doll, blow them out, and give baby a piece of cake. He even pretended to wipe up when Jen asked him to because the "baby spilled her juice." And he kind of pretended to put the baby to sleep, before he decided he was done with all of that.

I sat there through all of this, marveling and wondering. I marveled at all of the building blocks to child development and how the pieces fit together. I marveled at how far Ethan has come and wondered just what it was that made the biggest difference: Just time and maturity? All of the therapy? God's divine hand? An interplay of the three?

I said as much to Dr. Milanese, in relation to the "sensory diet" she had recommended in her original report. She had thought it would greatly benefit Ethan, and we certainly tried different things. Nothing really worked. Certain techniques provided maybe a little bit of help, but there was no holy grail.

"I keep wondering what exactly it is that's helped him improve in some areas," I told her. In my mind I was referring especially to his affinity for opening and closing doors and flipping light switches, particularly at other people's houses. "I just wonder if it was something we did or if his brain just needed to make some new connections or it was just time." Dr. Milanese acknowledge that was the nature of autism and in particular the sensory issues -- they can make recommendations but they don't work for every child and they even can work differently at different times.

At the end of the appointment they mentioned how different he seemed from last time and the many strides he's made. While I didn't expect them to tell me his autism diagnosis had magically fallen off of him, they did say he's less symptomatic of autism.

I wrote about that after on Facebook and then started thinking. If someone had cancer and the doctor had told them the chemo was shrinking it, they'd report it and it'd be a wonderful thing. But autism is woven into a person. It's part of their complete makeup. Maybe I'm overanalyzing here, but I hated to think I sounded as if we were just trying to wipe it off of him. It's not what I meant.

I'm at the point now where the big thing to me is not the diagnosis. I know there are parents out there who out of the pain and desperation do everything in their power to see if they can help their child lose that diagnosis before the so-called "critical" age of 5 or 6. I've kind of given all of that part over to God. There are some amazing things about autism, and there are good things about autism, for both Ethan and for all of us. For me, when I wrote about the "symptoms," it's more the relating part. That's what has always been hardest for me, with autism in general. It's seeing someone who acts like they don't care or want to relate to you, and believing that actually they do but just don't know how. We've spent a lot of time in the past year encouraging Ethan to engage, not run in the other room and play the keyboard while we're all in the other room playing, for example. Maybe if I knew he was a natural introvert who really just wanted to do that, it'd be different. But what has gotten to me is that the more we encourage him gently, and the more he progresses, we see that he WANTS to be with us. When he's prodded just a little bit, a big grin spreads across his face and he runs to us. He follows Anna all over the place now. He spends much less time alone when it's just our family (bigger gatherings still stress him).

So to me, that was the joy I was feeling. Not that he had less autism per se, but that he was coming out of his shell. He wasn't stressed and miserable in the room but actually a little playful. His little personality is coming out more and more and we see he actually kind of likes attention, kind of likes people and really longs for someone to draw him out. Certain barriers that had prevented him from relating are beginning to melt away.

I don't know what this means for the future. But I deeply appreciate being able to relate to my son, and that other people are beginning to see what's in there.

Thursday, November 4, 2010

Two Dreams

Last night I couldn't sleep for awhile. Right before morning I began to drift off, and as often happens during those pre-dawn hours I plunged into several very vivid dreams.

In the first, I was walking with a group of friends. Most were Soup Group friends that I've gotten to know over the past few years...Lyssa, Christine, Suzanne, Sheila, Kelly. My friend Jen from my teenage years was there, too. In recent years in both real life and the dream Jen has drfited away and become a different person, and I've yearned for the way things used to be. In the dream as we walked I began to fall behind. I felt as if I were dragging and it was my heart rather than my legs that were heavy. I felt weighted down with sadness, wanting to connect with them, feeling as if they weren't ignoring me but just preoccupied and having fun in conversation. All of my sadness about Ethan and feeling alone made me start crying as I walked. Tears were streaming down my face as I looked down at my feet, wondering why I was wearing sandals when it was cold. My friend Jen was the closest and I began wishing she would see me, come back to me, and reach out to me. I was crying so hard I couldn't see. Then I felt a hand on my shoulder, but it wasn't Jen. It was Kelly. Kelly looked at me with these compassionate eyes, Kelly who had lost a baby daughter in a horrible way, and we made a connection. Next thing I knew she was ushering my ahead to join the others. I forgot all about the fact that my oldest friend had ignored me. It was time to move ahead from that and join people who did care about me.

I woke up not crying for real but breathing in that way as if I had been sobbing, in the dream.

In the next dream Dan and I lived in this apartment in Cannon Circle, next to my parents who still lived in the apartment where we'd lived when I was younger. There was a neighborhood right nearby though and we had been considering buying a certain house. We looked into it and things just didn't seem right, but suddenly we found out the house next to it, which was even better suited to us, was for sale. In this whirlwind over a couple of hours we looked around inside the house and talked to the owners and learned they were ready to start the selling process right then and there. I found myself so overwhelmed, in a good way but just thinking it was happening so fast and maybe I wasn't quite sure if we were doing the right thing. Suddenly my parents were there and Al and Debbie, friends of ours from the church we used to attend. "It's scary but so worth it when you go an take the plunge!" Debbie was saying. Al and Debbie have adopted three children from Africa. In the dream she was showing me a school picture of one of her adopted boys. He was beautiful. "I'm so proud of him," she was saying.

My parents were encouraging us, too. My mom knew I was struggling. I don't know what I said to her, but the last thing she said to me in the dream, which I think was in reference to sending Andy off to Higashi school was, "That's what dad and I did. We had to say goodbye first."

We had to say goodbye first. I woke up with a start. A good kind of jolt. Suddenly I understood everything that had happened Monday a little better. These kind and qualified teachers were offering us more services than I'd hoped for. They were saying they believed in my son and his potential. But I was so overwhelmed, mostly because I hadn't said goodbye yet.

Not goodbye to Ethan's potential. Not goodbye to a good future. But goodbye to the exact way he was going to get there. I hadn't completely adopted new expectations. With all of this you can think you're doing so well, until (not unlike a child with ASD) the situation changes and it's all new and well, there can be adjustment problems. If as a parent you haven't said goodbye first. If you haven't said goodbye to the cocoon of birth to 3 where you can pretend your son just needs a little extra help and then he's going to catch up. Goodbye to the idea of fixing him to make him tyical. Is it saying goodbye to some dreams? Maybe. But I don't think we need to let go of every single one all at once. As Dan has said, "Let him show us how far he can go." Is it saying goodbye to expectations? Again, I say emphatically NO. But I have to let go of him being just like everyone else. (Just like I have to let go of ME being just like everyone else). I have to release him from that and see how he soars. I have to adopt this new way of thinking and seeing my son. A way that still for sure fills my heart with pride and love.

Suddenly, I can't wait for Ethan to start school.

Tuesday, November 2, 2010

Stream of Consciousness at the IEP meeting

We've waited forever for this and here we are. Am I nervous? I don't feel nervous so much as relived that we are finally sitting in this room stuffy with dry heat and getting on with the whole thing. There's Patty the school psychologist and Diane the special ed. teacher and Rita who does speech. There's the ice princess...I mean, the principal.

Okay, this is going well. They "get" him. They understand that he's a quick learner, that he just picked up potty training over the course of a few days, that he flies through things and doesn't need flashcards and trials and programs. Everything they're saying is so accurate, it's wild because these people spent a mere half-hour with him on two occasions.

Okay, it's hard to hear about my son's deficits. Even if it is prettied up with the fancy language of test scores and assessments. I looked in the back of the book so I know what it means to only score a Level 1 on the VB-MAPP in some areas. I know what a CARS score means. Ugh. Medical diagnosis. I hate these terms. I hate being clinical even if we have to for a bit.

Oh, this is good. More speech and OT than I thought. Yes! We don't have to fight. Even a speech consult in class in addition to the pull-out. They recognize exactly what his deficits in language are. I won't have to figure out how to put on my OT hat at home because he scores to well to qualify for any through school.

They what? Ugh, okay I wasn't ready to hear that. They want him to start in the autism room. They don't want to do the integrated classroom yet. They want him to work toward it. What do you want to say about this? How do you really feel about this? What does Dan think? I can feel him next to me but not see his expression. Jessica is at the end of the table and there's no need to look at her anyway. She's representing Birth to 3 and can't say a thing.

What do I do? How do I feel? Say something. Talk about the gains his made, even in the past month. Talk about how peer interaction is so important and how he can learn from his peers, how having him in that kind of environment is so important.

Okay good. No emotions here, just facts. The principal is talking down to me, but it's not in a personal way, just seems like her standard lines she throws out at all parents. Blah, blah, blah. You don't know who you're talking to, lady.

What do I do? What do I say? My head wants to argue more, to put my foot down and fight for the integrated classroom, but something in my heart is stopping me. There is truth to what they're saying. His weakest areas have always been the areas that are most important for school...receptive language, listening in a group, following directions, sitting still and focusing. But I know interaction with peers is important too. What do I do when we're both right? What about least restrictive environment? What about what Amy said, what about what Amber said?

But they are telling me he'll move quickly through their program, that they're not sitting him at a table and doing flashcards. No discrete trials for him. They know this. He can do free play with the other class first thing in the morning. We will talk about further expanding that. How do I get that into the IEP? Where is the IEP? Are they going to give me something to sign today? Something I'm NOT signing yet?

Do I say more? Do I give in? What is my heart truly telling me? My heart says to give this a chance but it means trusting teachers who seem to mean well. I must separate the teachers from ice princess. They seem to understand my son. The principal sees us as a number, a block on her schedule.

I have to trust now. We can ammend things. I have the right to re-assess, to call another meeting. Can I trust? I don't want to fail my son.

We're getting up and walking down to see the rooms. There's the 3's class where I eventually want Ethan to be. No kids in there now...so cute, a typical preschool room. Now across the hall to the autism classroom. A few kids in there who require full day. Got to remember that. It looks like a preschool room but a little more stark. One kid is making noises. Another kid seems more like Ethan. They say last year he started in this room and this year he's integrated in the morning and comes there in the afternoon. Could he be Ethan next year? Please God. Oh God, I don't want to cry. I'm geting teary. Okay we've known this for a year but my son is going into special ed. Oh God I'm horrible because I didn't think he'd end up with "those" kids. Oh God these kids have moms and dads who adore them just as I adore Ethan and my son is no better than them. They are all precious. They are all your children, God. I need the ugly parts of me changed.

But still I just thought maybe a tiny piece of me that he could go in the integrated room and everything would just be okay, that it's not so bad. Reality is here and even if he goes in there he has challenges and he is different and oh my God this is just the beginning and will I be strong enough to do this.

Do not cry, even though I'm starting to feel like I'm underwater. No Diane I don't have any more questions because I can't think right now. I hope I did the right thing and I hope they are true to their word and I hope...I hope...I hope I can keep going with a positive attitude and believe this is just the beginning and Ethan is going to make great gains. They all think this. I do too but still the weight is there...did you do the right thing? All the whispers are there about least restrictive environment and me being his advocate and what if...what if any one of a million bad possibilities?

Okay said my goodbyes and I wait to start crying until I'm in the car with Dan and he tells me it's okay, all the reassuring things, and he means them, and he's so level-headed and I'm so incredibly grateful because I am not. I wipe my eyes and breathe and begin to tell myself we can do this. I can do this. We have a path. We have chosen a certain way and my job now is to make sure the path is headed in the right direction. Our decisions may not have been perfect but God is bigger than that. This mamma will be ready to fight. And if I need to, God will be fighting battles for me and with me.

Everything's gonna be all right...Everything's gonna be all right...

Everything's gonna be all right.

November 1, 2010