Realizations

I have been in Vegas all week. I hate leaving Chandler, I know he misses me. He acts different at school, he asks Grandma "Mom? Mom?" and its hard. I was so excited to see him that even though it was his dad's weekend, I picked him up for lunch. I brought Luke, and we went to the Pizza Ranch. I was nervous seeing the parking lot because it was full, and busy restaurants are tough, but at noon on a Saturday what choice did we have? He didn't get upset at all walking in saying "Pizza! Pizza!" We found a table in a back corner with just one table behind us, and about 5 surrounding us. One family was getting up to leave. We got our food from the buffett, and Chandler was happy to see pepperoni, and vanilla pudding. He was quite "flappy" and of course its because he hasn't seen me in a few days combined with the music playing a little more loudly than normal. One family walked toward the empty table, and as the mother carrying her baby saw Chandler jumping and squealing, she steered her husband back to the busy middle of the restaurant. Chew. chew. chew. Along comes an elderly couple who choose the table behind us. She sits down with her soda, and as Chandler's pizza touches his pudding, and he spits out a bite and cries. One tiny little outburst, as if to say, MOM! Seriously? I send Luke to get new pizza, and the woman whispers to her husband and they are off to find another seat. After twenty minutes, this super packed restaurant has one empty wing. We are like an island. My eyes were filled with tears, and I look over at Chandler happily munching his fourth pack of saltines because the pizza sucks now, and my very keen teenager says "Mom, I noticed too, and its okay." He smiled, and shrugged. In my head I stood up and yelled "What the hell is wrong with you assholes?! He's not a freak. He's my SON! And he's wonderful. He likes art, and cars, and music. His name is Chandler." But it is because of my teenager, that I hold my head back up and continue with the meal.

Letter BORED

I am all out of sorts today trying to reflect. Lets start with the desperate feeling that creeps in when you caught in a limbo during a conversation you have with your child's teachers at school. I know what I would do, but do I trust they know best as educators or that I do as a parent? After disengaging and time in the car to reflect-Perhaps, neither of us know best, but rather we know differently. Okay, so identify the issue. He hates reading time. Is he bored? Does he already know the words? Is he distracted? Enter mom visiting school for reading time today.
As Chandler sat for his word lesson, I could see how distracted he was today. Today there was lightly falling snow outside the window, I know because I followed his gaze. It really is beautiful. I quietly watched his teacher try to engage him with the words. Horse. A. Car. He was breaking eye contact, turning his head away from the page. Touching her newly manicured fingernails because he is fascinated with nails. He has been working on horse. a. car. yellow. see . all year long. My gut feeling is that he is bored senseless. On to edmark, a computer based word program. The pleasant voice speaking out "Find the word ball" and Chandlers hand travels to ball. "Find the word yello.." He pushes it abruptly and turns away. He is pushing them before they finish speaking. He knows these words. All of them.
Here's the problem. He is not consistent. They cannot say he "knows" them for certain. How are they ever going to assess that? Ever? Should they move on to other words? I don't know. I just don't know.

Fast forward. Email from my college professor, who mentioned to me that I was consistently late to class. And apparently I sighed coming in loudly last Friday. (To clarify-I live 75 miles away, and its every Thurs and Fri. and I had to run all the way to class) An excerpt:
"...it seems like you are in a constant state of overwhelm.  I would really recommend that you consider some self-care to help you develop better coping skills for managing stress and widening your homeostasis.  You could consider seeing someone privately, or I could set you up for some coaching with X (free for students).  I recognize that your stress related to your child isn't going to go away, yet your ability to manage your responsibilities, your time, and your relationships with those around you are always "improve-able."  From what you've said, it sounds like you've become a kind of "island unto yourself" and wonder if you could use some self-care to improve your life.  A balanced mom is much more able to care for her loved ones than a stressed one - I know this from experience."


I was unsure whether I should laugh or cry. I really like her as an instructor, but she doesn't know me as well as I had assumed. I wish to God she knew me five years ago. My reply was this:
Thanks for writing me back! I didn't realize I was coming in loudly, I will pay attention to that (I think the sigh is due to relief that I made it at all after running to class, and its "getting my bearings"), but I will check that. I don't mind you stepping out on a limb to give me feedback, I welcome that actually. I really do have some time for self care, (normally my respite care time during the week, and zumba class, and of course support group). I agree that I come off as overwhelmed, but really tend to be a dramatic speaker, which is improving after all these conflict classes. I have seen a private therapist because the stress load can get overwhelming. I know when my homeostatis is off. It's not just taking care of Chandler, I take on advocacy, working on changing school policies, etc. more than I should. My mother has severe MS, and as the oldest child, my father and I have daily conversations about moving her to a nursing home,  and my husband's job schedule with the railroad is unknown day to day (that is permanent).  I am a pretty good multi-tasker, and everything has worked out for me until these past few months. I don't have enough hours in the day, or days in the week to cram everything in, and I know how much I take on. I am really working on taking on less outside responsibilities, but its hard to let go, that means dropping some of my support group stuff.  I actually feel like I do an exceptional job of balancing responsibilities, but this is my last year of school and that entails picking up all these "extras" like classes at 3 colleges, and bits and pieces. I don't feel too overwhelmed, but I recognize that is how I am perceived. I grew up in a home where catastrophized speech was the status quo, and although I see it, that is what comes naturally. I also naturally run on hyperdrive, its how I get things done. But  I will practice slowing down my vibe, althought I will disagree with you a little bit, that sometimes appearing in a constant state of busy, can look like "overwhelmed' when you are an outloud thinker! Have a good one. Nicole


Sometimes, as mothers in this lifestyle, we are so used to being this way, we forget about perceptions of us, and are surprised when people are wrong. Dead wrong. I know I seem stressed out and overwhelmed sometimes, but I love my crazy life. I thrive on this. One minute I am humming Farmer in the Dell so Chandler will put on his shirt, and the next I am answering a phone call from my who knows who trying to schedule in more things in my already packed week. But I see Chandler make eye contact with me and say "MOMMY, MOMMAY". It's not overwhelming stress, its passion.

Chandler's 8th birthday, the toy store, and the worst toy ever...

Toys R Us is a like an alternate universe in a childhood dream. They have things I would have begged for as a child, given up all my piggy bank's insides for, and stared longly at while passing by hundreds of shelves of gorgeously dressed dolls with golden curls and velvet dresses, glistening red fire trucks with real sirens, puppies with soft fur that bark, and shiny boxes of colorful wonder everywhere. The lights, colors, and textures would have been overwhelming in an incredibly exciting way. This is not my sons experience, nor is it mine any longer. I am no longer transported back to my youth, now I am a shrewd critic, weeding through everything in despair and disgust, with just a sliver of desperate hope that I might find something he will "play" with.
I was mindlessly wandering the aisles for his birthday present, discarding this thing and that, maybe a book, maybe a puzzle, OH MY LORD!!! NOT this puzzle! They sell a puzzle I find appalling for any child, and it happens to be a hook and latch board. Now, for the naysayers that might read this, I get that it might be used for fine motor skills, but do I really want to help my children open hook and latches, and dead bolts?!! I think not. Shaking my head and staring in humorous disbelief, I was about to give up, and I rounded the corner. Aqua sand. Well......this gift is going to his dads...It was the "polar playground" and it has little penguins that go down a slide with a pump you push to make a real waterfall! Cool. Done deal. I made my purchase, and left this frustration center.
Fast forward to after dinner. Going out for ice cream instead of cake has become tradition for Chandler and I love to watch him enjoying a typical kid moment, trying to lick the drips from the cone. My sweet, perfect angel. Where have eight years gone? Is this little boy really the baby that wouldn't stop screaming, the toddler who carried only balls for toys around, and made me read goodnight moon 30 times a day? The preschooler that I was sure would never grasp potty training or say my name? The same little boy that had words that just sat on his lips without coming forth? Fighting tears, I watched him smile and offer the cone to his dad, to me, and use his napkin, and say "all done". I don't have enough blog room to detail all the progress he has made over eight years. He is growing up to be a very handsome boy, and he has this aura around him, that makes people notice him. He is sensitive, and sweet and knows when I am feeling sad or sick.  I hope people take the time to get to know my son, he is amazing with a kind heart, and a beautiful spirit.
Fast forward to play time with the polar playground....I called dad to see how it went, and he said it was a semi, short lived success. One of the penguins was missing, and he was quite certain Chandler made off with one to squirrel away in his hiding places. For that I am glad. So my gift was loved not for the cool waterfall, and colorful sand, but for the tiny black and white smiling penguin wearing sunglasses.....Perfect. I love you Chandler. I will never stop advocating for you, educating for you, and being proud of you no matter what. I am not wanting you living up to my dreams or expectations, but creating your own. Teach me, and we will show the world that what they think about autism is wrong. Happy Birthday to my amazing child!

Sticky wicket

A sticky wicket is a term used in the game of cricket. Basically if the pitch is altered by rain or moisture, it creates a spot where the ball bounces erratically or in an unpredictable way. The metaphorical use is to describe a difficult situation. I will now explain my SW story.

I like to think that I have a lot of fantastic people in my life that are angels, helping me out on my journey with autism. Some are hidden, and some are in plain sight.  I put a lot of faith and trust in the people that teach and work with my son. I haven't had a lot of problems with therapy or school because we all seem to be on the same page. Encouraging and giving a gentle push here and there, and we all celebrate when Chandler reaches a milestone, no matter the size. Last week was a scheduling nightmare. I returned to school, and the kids were on week two back from Christmas break, and the weather was snow, and more snow and cold. Everyone was just out of sorts.  I found myself on edge, snapping at the kids, my husband, the remote for not channeling the way I wanted because I'm entirely sure I pushed the right button in my rage. I was at least ten minutes late to every class I went to, but Friday finally came and I rushed out of the house after my shower with wet hair because I needed to go to Zumba. Ah Zumba. My 50 minutes of letting the music control my body and clear my mind. I can let the power of Salsa, Merengue, and Cumbia take all my stress and replace it with joy, clarity, and calm.
I left Zumba feeling like I had my brain back. I was centered and energized. I got to my monthly Autism support group just in time, and as usual, the room was inviting and buzzing with familiar voices. I poured a coffee with hazelnut cream and bit into a macadamia nut cookie (so much for the calorie burning). I heard my name and looked around. Another mom with a child in my sons class was calling me over. She looked serious when she asked if she could talk to me. Her concern was a story about our children's class and a para who had apparently been not taking my son outside, texting while caring for him, and basically letting him "do his own thing". The coffee tasted bitter in my mouth, and I must have looked more upset than I thought because she was apologizing and telling me she didn't know what to do, but she felt she had to tell me what she knew. My concentration now broken, and although I always love listening to the parents in group talk, my thoughts kept going back to Chandler and this para professional. Why wasn't he going outside with the other kids? Don't they have policies about texting? What was he learning or doing with her? Why was she robbing my baby of his education and his opportunities for growth? What kind of training does she even have? I felt betrayed. Heartbroken that my son comes home every day and I ask him "How was school baby?" and he can't tell me. He can't say "I didn't go outside today mom", or ask me why he wasn't doing things the other kids were doing. The worst thought popped into my head. Does she even talk to him? I held back hot tears until I was in my car, and they fell in streams. I trust you with my son! He is locked in his own body, and might be crying out to communicate with you, and you are texting, and acting like this isn't the worst thing you can do by not engaging my son. What makes this even tougher on the mind, is that I am not even supposed to know this information. I might never have known.
As of now I haven't met with the school, or the para, or even spoken with them over this long weekend. I am glad I have the time to consider what I will say. But my rose colored glasses about school have been shattered. My wonderful experience thus far has been tarnished, and I am a cricket ball bouncing unpredictably on a sticky wicket.

I...want...

When Chandler first started speech, he was less than two years old. He wasn't talking, we knew something was wrong, but we didn't have "the diagnosis". When it came, I convinced myself he would talk by three. Four. Five. Six.....I slowly let my death grip on hope slip away. I remembered days of sitting in front of him with flashcards, reading the words slowly and turning his little face to mine. "CAT"..."BOAT"..."TREE"...and he would smile and turn away. Or on worse days, he would scream and tear the cards out of my hand. He had tears falling, I had tears pouring, and I threw the cards down in frustration. I walked him into speech therapy, down the elevator, sat in the waiting room every week waiting....waiting...hearing he did "okay", he did "fine today".
We finally had a breakthrough or two, but it was such slow progress, that last year when he began to use one word requests like "Milk" and "Bath", I was satisfied. It hurt me because I knew how hard they were working, and I always wondered if they thought it was hopeless, but I could never bring myself to ask. This rudimentary communication was going to be our lives, and I sadly accepted this with a stiff upper lip, and vowed to work as hard as I could to improve his multimodal skills. We got the IPAD, I enrolled in ASL (sign language course), and I began to talk to him more, and enunciate my words, and speak louder, anything I could think of.  I watched him work for others, in speech, in school...he was improving, wasn't he? Was it me? Am I not doing enough? I heard the calm, stern voice of his speech teacher, his para at school, my voice, my husbands voice....we were all working with him, it wasn't really fair to beat myself up over and over for it, but I just...can't...help it.
So Tuesday afternoon, December 14th, 2010. I was typing an email on my laptop with a pen in my mouth, my hair up in a snowband, and my feet on the coffee table when Chandler walked over to the fridge and pulled out a snack pack. He walked over to me and held it. I stared and was about to start with some prompting and ask what it was that he needed. His mouth opened and I heard slowly and painstakingly "I.....wah....puh-ing"...the pen fell out of my mouth, my eyes quickly welled up with tears, and a ragged breath and a little squeak was all that came out of my mouth. "YES! You want pudding?!" I jumped up and held him, trying not to scare him with all the tears. I laughed and he laughed, and we got spoons and ate double snack packs. My early Christmas present. My heart overflowing with emotion. My son, I have waited so long. SO LONG to hear your first unprompted sentence, and if it never comes again, I will be happy. God, I will never let my hope waver again. Hope is sometimes all we have.

Chandler and the Christmas Party aka Girl Scouts Autism Awareness Day

So, every December in our community there is something called the Winter Fling. It's basically a special needs children's Christmas party where there are girl scout volunteers that are paired with a child. They have a gym filled with activities and rooms for Arts and Crafts, Music Therapy, and Santa and Mrs. Claus is available to see. This is a bittersweet day for me every year. First of all, I love the girl scouts for doing this, they are adorable, sweet, and questioning girls but when Chandler was paired up and they handed him the "gathering your crafts, prizes and treats" bag he promptly dropped it at her feet and covered his ears. She looked at me with huge eyes and asked "Why is he covering his ears?" Oh my dear girl, meet autism. Autism means he won't respond to you when you say "Chandler, lets make a Christmas card!" My friend Kate, and her daughter Emily were being paired up too and I heard her girl say,"Emily, first we can decorate cookies, and then we will make a pipe cleaner candy cane." (I must say when we were finished and Kate told her husband that story, I'm not sure which one of us was giggling harder). Their intentions are wonderful and my heart breaks because they are unprepared and the experience is dulled for both the volunteer and the recipient. She looked nervous when Chandler used a third of the green sparkles to decorate his cookie, and made only dots on his Christmas card by smashing the red marker tip into the paper with vigor.  We move on to music therapy time (a favorite for so many children there). Chandler has two favorite instruments that he will ONLY play, and Emily is assuring that all children have their appropriate mallet. Something angers her, and one drum goes flying across the room. "Emily's here!" I see the therapist say with a big smile. She is familiar with many of our children. The girls kept deflecting to us with unsure smiles and sweeping attempts to keep the interest of their charge. I pulled out my camera to keep Emily from her excited, full bore running scan of the room, and I wrapped Chandler in my arms to play Tom-tom drum on the floor while he admonished me with an angry noise for holding his hands. It is a beautiful and amusing moment for me. Kate looks stressed, but is laughing at Emily announcing "Attention, attention" to the room from a podium at the back. Our quirky, loving, gorgeous children are having fun THEIR way, and its just fine.
Time for Santa! This year my eyes fill with tears as Chandler actually sits on Santas lap. I help drag out the words I...Waa (want)...and I wait...(we practiced saying video game). He said ...Pop Tarts. Santa looks up and me and says with a grin "Pop Tarts! Okay!" (Thank you Santa) and he hands Chandler a gift bag. Chandler frowns. (This is not a pop tart). And we gather our things to leave. I give him an extra hug for being brave today, and walk out into the snow piles and try to keep them from plowing through them on the way to the car. Dear Girl Scouts, I have made it a promise to come visit you and explain what I can to help you understand so that this can be the experience for you that it should be. May it be half as beautiful and inspiring as it is for me. Mom to Chandler, Autism Educator

Thanks and Giving....

I have so many things to be thankful for. I cannot tell you how many times my eyes have filled with tears today. Happy and sad. Travis got called to work tonight, so we all stood in the window and watched him go, and I vowed to make Thanksgiving dinner better than our plan B (which is turkey roll, stovetop, and a feeble attempt at a pie). Working for the railroad is a thankless job sometimes. You miss many holidays, weekends, birthdays, and ordinary moments other take for granted. So, I put on my game face and braved the snow packed roads to drive to Target to buy new Christmas lights for the tree. Luke and I separated the branches and we got as far as untangling and stringing the new multi-colored strands that are now wound around the tree, and we placed the metal snowman-star on the top. Ornaments can wait.
Chandler is spending tonight at his dads house. I am always intrigued by his reaction to the tree, I wonder if in a years time it will be different. Excited this time? Indifferent? My babies ran around it yelling "It's beautiful! A big tree, a big one!" My mind forever wanders to the year Channy was four and he kept taking all the red bulb ornaments off my parent's tree. They were not pleased, and I followed him around for hours, replacing bulb after bulb. He likes circles and balls. And they were a brilliant shiny, red. I don't blame him.
Holidays are stressful for us, but we have come so far. He is comfortable enough to go along to any of his relative's homes for holidays. We may have to adjust the meal, he may not sit with the family long enough to eat his odd holiday dinner of peanut butter sandwiches and a sausage breakfast pocket (he hates turkey, mashed potatoes, pie, or anything usual to turkey day), and we might only stay for a little while. But we are together. My sons are healthy, and happy, and I wish nothing more than for them to feel a little holiday magic, with the love and togetherness, and importantly a mom who is caring, and upbeat, and makes the most of any available day that we can just enjoy being a family.