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.

Missing Mom

So, I feel very out of touch with myself this week. Some things in my life are coming full circle, others are breaking down, and some are just...there. I was getting my backpack ready last night to leave for Pracs. For those of you who don't know, its a medical study where they pay you to draw your blood. I do these from time to time to pay for things Chandler needs, or we need as a family. I watched him playing with his blue lizard, and he wasn't looking at me, but I said "Channy, mom is going to leave for two days and Grandma will be here and Luke, and I will be home Thursday." He looked up briefly and then ignored me to attend to his lizard. I just sighed and kept packing. I always wonder if he knows I'm gone, or wonders where I am.
Today, I got alted out of the study (they have several alternate people), and left an hour or two after checking in. I opened the front door and hear my toddlers yelling "Mommy! Mommy's here!" And we talked and I make a burrito and a coffee. I go downstairs to sit on the couch for a minute and talk to Grandma who is folding laundry. Chandler comes down the hall and sees me and giggles and climbs onto my lap. He said over and over "Mamamamama....and wrapped his arm around my neck in the one armed hug that is his trademark embrace. He kissed my face and could not stop giggling. I held him and held him, and he looked at Grandma and said "Buh bye". He really does miss me when I'm gone, and that both scares and delights me at the same time. But mostly it makes me cry and laugh and hug him tighter, and we sat for a long time without saying anything, but it was pure love and joy. Nothing else.

The tornado and the cookies...

I love fall, and I love this time of year. Halloween, thanksgiving, Christmas. Scarves, and shopping, and cider, and snowflakes. I am a Holiday nerd. I wear Merry Christmas pants on November 1st. I breathe in and sigh at coffee shops when I smell peppermint, and I cry when I hear carols. But the scariest, most heart stopping thing to me is that Chandler's birthday in January. Another year has come and gone, and my baby still doesn't talk. He will be eight years old. Don't get me wrong. I am fiercely proud of him. This year he stopped wearing pull ups. This year he started requesting more things. But as my friend's ASD children move forward, I watch them moving faster than Chandler. I know, I know, its not a race. Not a competition. Then why do I feel like I am standing in the eye of the storm? It's silent in here. I can see out, through the debris and the 90 mile an hour winds. I don't want to leave this spot. I know that we all have so many common threads, but sometimes I am so jealous I secretly am angry at them. I love their children and I am proud of them for each and every milestone.....but do I beg God to let me hear him say a sentence. Every year. I put that on my list. And it never comes. Tears spill down my face every year when he half opens his gifts and throws them aside.
I thought of that the other day, while I was making the boy's lists for Grandpa. I was wondering what to put on his list....and Chandler kept bringing me a bag of cookie mix. I was shaking my head, signing, and saying "No, baby, they aren't in the bag. You have to...."....maybe he already knows that.... Why am I assuming he doesn't know that this is a mix? Maybe speaking is not the most important gift to ask for. I put down the catalog, and in my messy kitchen, with my pajamas on, in the morning, we made Chocolate chip cookies. He poured in the butter, he made a horrible face at the egg, and I had to ask him to come back and stir three times. But we did it, it was a very short lived experience, but one of the funnest. We each had three and a huge glass of milk. Christmas cookies, here we come.

A Bad breakfast....

Daylight savings time. You ruiner of daylight, and other things. Most people circle this day on their calendar with a big red circle or heart in anticipation of one extra hour of sleep. My red circle is a glaring warning of dread. Because Chandler is on a body clock, like his own little autism circadian rhythm, I HATE daylight savings time. The corps have done studies saying that it saves .5% in energy. (big freakin deal), and it increases revenue for companies. Ah, there it is. All about the benjamins. Fine. I guess if it makes Walmart a few more bucks its okay to f#$% with my life. So, now that my rant is over, let me tell you about the beginning of the next two weeks. Last night Chandler was running up and down the stairs, climbing on the wall ledge in the basement, and lifting up the filter door on the fish aquarium to watch the wheel spin. He was still coming to "visit" me at 11p.m.  Normally, he is in bed at nine. I tried a snack, a story, a movie, retucking him in. Well, it didn't work and he was up at 7 (so 6 really), and he wanted breakfast. His normal two poptarts and glass of milk was presented and refused with a fire engine scream. As was a bowl of graham squares, a bowl of trix, and a final bowl of Capt. Crunch. In the midst of repeated screaming, and trying to get breakfast for my now awake two toddlers, my emotions started the familiar out of control spin. I was trying to stay positive but having episodic tears and threatening time outs to all three of them. I took a deep breath and a bowl of cinnabon cereal and went to my room. I cried by myself for like the two millionth time, and he came in running and screaming and threw himself on my bed.  He wouldn't come near me or give me a hug because I had gotten angry with him. It took five minutes for me to convince him to let me hold him for a half a second.  After watching his brothers fight for a few minutes, it was forgotten, and he giggled, and began to "stim" and rock back and forth so much, he was moving my bed. Please stop. I just stared at him. I hate autism today more than I hate Daylight ST, I hate it more than I hate shoveling the snow in 40 degree weather, but I love my son. I lose my patience again with the bed rocking, and say STOP it please. (Even though I know he can't), and he stares me down. Eye contact but not in a way that I would like. If he could speak, he might be telling me to muster all the strength I can because its gonna be a long two weeks-the amount of time it takes to reregulate. My annoyance becomes sadness and guilt. I'm sorry again my baby. I'm sorry I can't understand, I'm sorry I forget.

The dog blog...

So we have never had a dog. Chandler is afraid of them, or so I thought. He has been around several breeds and it is never different. He cries, runs away, or best case scenario, he acts indifferent. Last April, of course being autism awareness month, we spoke on local radio stations about Autism, and community awareness. During a radio spot at KFGO, I had the pleasure of meeting a woman who raised puppies for a company called CCI (Canine Companions for Independence). I had never heard of autism service dogs, and to be honest, I wasn't sure I was sold on what they could do. Sure, some children with autism could use a friend, a companion who won't walk away when they meltdown over no chocolate poptarts, but I was sure many children with autism would just be too scared, too indifferent.
But this dog was pretty, and extremely well behaved. Nora. A beautiful yellow lab, who was so sweet and calm. I asked Karen if maybe she could bring Nora to my house to visit Chandler, and she was more than happy to. Not expecting too much from Chandler, we just let him lead. And in shock, I watched as he went from being simply curious to moving closer, and closer until he reached out to Nora and touched her. He said puppy and smiled. I was elated. I was confused. I didn't know what to do. Could I handle going through this rigorous process and what if we made it through step 1, 2, 3, and 4 only to find out we would be turned down? I asked a barrage of questions, and Karen patiently answered them all, and she had this confidence about these dogs that I could not ignore. Her support, the support of Bob Harris of KFGO, my autism mom friends, they all had been so helpful, and they wanted this for Chandler as much as I did. So I took the plunge and applied......fast forward
After the app, the forms from therapists, doctors, and us, and photos of our family, and our story, we got an email, then a phone interview, and then an invitation for a personal interview in Ohio. OHIO. A 16 hour drive with my autistic child. My heart sank. I still had to tell my husband.  Did I mention they gave us two weeks to make plans?
I took a deep breath and broke the news to Travis. He was wonderful! He took PL days off work, and checked the whole truck from oil to taillights, packed a cooler, and a pile of blankets, books, and toys, and we were off. I have never been east of Minnesota, so we talked and laughed at all the cheese stores mingled with the adult novelty shops in WI, the huge industry of Gary, IN, and the gorgeous skyline of Chicago. We marveled over all the tolls on the 80/90 tollway, and tried out the Oasis (roadside reststops but with gas, coffee, and food, right off and back on the interstate) so Chandler could have an ice cream. We missed swimming at the hotel by ten minutes, and dinner and ate candy bars from the vending machine for dinner. We ate at a very "countrified" KFC and Chandler stared in wonder/horror at a life sized statue of the colonel. Travis and I held hands, and I felt connected to him more than I had in a long time. We used GPS more in three days than in our whole lives. We made it to Delaware, OH, and the CCI building loomed in front of me. I swallowed, hard, and I could feel the anxiousness and the worry creeping in. I will skip to the end of the four hours, after the demos, the tours, and get right down to the personal interview. I remember staring across the room at the wall, the pictures of the graduates, the photos blurring from my watery eyes. I heard "its harder to get funding for autism dogs"...."We try really hard...", "We just aren't set up to deal with kids with severe autism in this facility...". My mind wandered to the fiasco that was Travis, me, and Chandler during the training demo with the dogs, we couldn't figure out where to stand, keep the leash in Chandlers hand.....But didn't you see him?! I wanted to scream. He doesn't talk. He said SIT, and GOOD, and PUPPY!! He reached for the leash on his OWN!! I could feel a huge lump in my throat. She kept asking questions, and my confidence was dissipating. I mumbled a "It was nice to meet you..",  and it felt like slow motion as Travis moved to get Chandler toward the door. Chandler was currently angry about the stack of sodas he saw by the door, and was adamant that he get a mountain dew right this second. When we were in the car, and buckled in, I broke down sobbing. I said, "They aren't going to take him are they?" And Travis said, "Not a chance. I'm so sorry honey." I watched Chandler giggling and bouncing in his chair and playing with his purple squid I bought him on our trip to Underwater world last month. I sobbed harder. After venting all the reasons they were wrong not to take him, and justifying the trip in my head, the mood was more somber on the way home. We shopped, and stayed in a hotel (we would NOT miss swimming hours this time!) And went out for pizza. Everyone asked how it went. Texts, facebook, phone calls. All I could say was we had to wait to hear, we would let everyone know....fast forward.
Sunny day, and I was on the phone with Kate complaining about school, and picking through the mail while driving. (Its multitasking!) Ah! My autism moms calendar came! I tossed all the other mail onto the passenger seat of the car, and out of the corner of my eye I could see a little piece of yellow and bright blue. The CCI symbol. Oh my God. I tore the envelope open and the letter fell in my lap.
As based on your interview, we have decided you may benefit from a skilled companion dog from CCI.....
Kate! He made it! sob...He made it! sob....They took him! CCI! sob...sob...sob...I...sob. My heart was filled. This will undoubtedly change our lives. My beautiful, joyful, wonderful son will have his friend. There are angels among us. Karen. Bob. Nora. All my other angels. I live a life full of challenges, amazement, and wonder....and I would never trade it.

Today I played a Jembe...

Not sure if you know what a jembe is, but its a drum. I don't consider myself as having time to do a number of hobbies that I would like to attempt, or continue. To ascertain a skill takes considerable effort...usually. Today all my effort was, was the simply rhythm of a drum. I attended one of the most beautiful days that takes place during my year. October. It is a mother's rest and rejuv at a church in the north part of the city. A large group of moms, all caregivers of a special needs child get to come and be honored, and pampered. We get brunch, and a coffee bar, and there is baskets of chocolate at every corner. There is laughing, and crying, and time to reflect. There is always an inspiring speaker that makes you tilt your life's perspective, and there is dessert, and massage, and I wish this was a national holiday. But today. Today I got to try something different. Music therapy for mothers. What a concept. I envisioned we would all be holding hands singing Farmer in the Dell (the song I most often hear Chandler humming after music therapy). I laughed inside when she passed around the bag of egg shakers. But then she asked us to stand. What's that? You want us to make a circle? Oh dear. Song time with little plastic eggs...I feared the chanting. But I was mistaken. We passed them with one hand out, to receive our neighbors egg shaker. It was rhythm, and your eyes are closed, and it feels..peaceful. Faster and faster you go, until some of the eggs are dropped and there is laughter and a light mood in the air, so we sit now with our instruments. Whichever we choose. A drum, a cow bell, a wood block, and we played "build a groove". You play what you are feeling and turn to look to your neighbor to pass on the music, and they add their own beat. It is one of the coolest things I have ever heard. I was so taken with the feeling of the music, I didn't stop to think about how my kids were getting along with the babysitter. Or how many homework assignments were looming over me. Your body moves without thinking, unintentional rhythm. Is this how it is when my son is in music therapy? Feeling the music without a care in the world? Letting it take him to his happiest place? I hope so, Chandler. I hope you are moved and motivated by the songs, and the beats. This is not the musical therapy I was picturing. Every day my eyes are open a little bit more. The code is cracked just a little bit more, and I got a glimpse of your world today, and what you love. Priceless.

Please stop stimming...please stop stimming..please stop stimming...

Chandler is wandering around the living room verbally stimming, and I am about to lose it. My body gets all itchy, tense, and restless when I've had enough. He makes strange noises, beeps, and semi-words at all kinds of volumes, and he is spinning his mardi-gras type beaded necklace around and around in his hand, while jumping and turning in circles. He's on auto-pilot. I want him to come and sit by me so bad. I want him to respond when I say, "Chan, sit by mama." He might randomly whisk past me saying "hi" and then onto the kitchen and I hear a strange melody repeat for a minute, followed by a slapping noise and he hits the counter. Now he is sitting on the couch arm, making popping noises with his lips, and a noise like "eh eh eh..." I feel like I am having an anxiety attack. What do I do? Follow him, stop him, ignore him, distract him. I have done all of these things, and sometimes they have a place, and sometimes I have success. I am paralyzed today. Weary, autism worn, and lost. He won't stop to read a story with me, he wants nothing to do with a snack today. This is one of what I call the "lost days". We don't have a connection, and I let my hope slip a little. The noise, the noise.....It's giving me a headache, and there are tears leaking out faster than I can fight them back. You're in there somewhere kiddo. You were here for awhile earlier when I got a flash of your brilliant smile, and you flung one arm around my neck and said "Huh"- (hug), and bounced away. I am having a dialogue with...myself.. about the state of the house, my homework...I hear the little brothers barge up the steps, and Elliott yells, holding a Merlin (for those of you old enough to remember the light up handheld game with the flashing red buttons and robotic tone), "My 3000 GAMOTE!!" and Sawyer throws himself on the nearest cat, screeching, "My KITTY", and Chandler finally comes and leans against my body, and he is crying. He can't take the noise....I throw my arms around him for the millionth time in life, and the other boys run down the hall and we sit in silence....

Butter Side down..

In watching Chandler eat food, I almost get anxious to the point of making myself sick. What happens to little bodies that don't eat any fruit or vegetables? Not one. No apples, bananas, grapes. None. What kind of deficiency is he harboring in that skinny little frame? What kind of disease or cancer is waiting to flourish in his little cells?  Every glass of juice he pushes back at me, and every time he turns his nose up at a new food, I am disheartened, sad to the point of tears. How long can he eat pop tarts and peanut butter sandwiches and not get sick? Doctors are idiots. "He's at a healthy weight."......sigh, so are some crack addicts. Channy doesn't have many "OCD autism characteristics." By that I mean, no lining up, no rigid routines. However, I study the manner in which he eats. Toast is always butter side down.  Yellow Cheez-its are yummy, White Cheez-its are yucky. We don't eat cut up spaghetti, we must twirl it long with only Prego Ricotta Parmesan sauce on it. I am becoming a master of being a sneaky chef. I have purchased and perused books, and I have made tiny gains like baby food veggies in the spaghetti sauce (thank you Kate). So my crafty mother in law made a chocolate cake with bananas in the mix. PERFECT, right? Uh...yeah, nice try. He licked of the icing and dumped the piece of cake in the garbage. So much for step 2. SIGH.

Pizza incident at Rainforest Cafe

SO....my adventure to the cities for the Autism Walk started off beautifully. Overcast day with some sun peeking through, fantastic resource fair, the kids were sweet and well behaved, and they got to play games to win prizes and jump in the inflatable house. The atmosphere was brimming with inspiration and hope. We were being recharged! Good thing too, because we left the walk to go the infamous Mall of America. I know what you're thinking...really? Are you new to autism lady? Could there be a more viciously overstimulating arena? But I made a carefully executable plan! I wanted to eat quickly and then proceed to Underwater world to walk harmoniously next to the sea turtles, and ponder the strange jellyfish as they lazily float by. Yeah Nice Pipe Dream Nicole. That is NOT what happened. The parking attendants were bossing people around like mob bosses, and when we finally found a spot in P4 Arizona (aka really far away), I pulled a crying Chandler from the back and talked him into calm as we made our way through Nordstroms. We had to take several escalators and reroutes down, and I almost bit the hostess's head off when she said, "Party of 6? That will be one hour." with a giant false smile. That would make lunch at 2:16. So we staved off hunger with a donut, and went to the least sensory offending stores I could find. We get seated at 2:15, and I manage to piss off employee 2 by requesting a rectangle table rather than a round one in the middle of a crowd of people, and I finally order PIZZA. Chandler loves pizza no matter where, when, or how. I calmed my nerves slightly by ordering a Pink parrot lemonade (it involves alcohol). I know, strike two for parent of the year. Fueled by sensory overload and hunger, he starts getting antsy, tossing silverware down to make it bang on the table, pushing away from his place to wander to the fish aquariums in the cafe, and toss his crayons in an angry manner. I feel a huge sense of relief when I see the waitress and she sets down his pizza, and I am excited and thinking to myself, "That wasn't so bad. Foods here! Time to relax!" As she was setting down the frog plate with the weird looking circular pie that looked yellower, flatter, and thinner than pizza we normally encounter, he violently shoved the plate and stared at me like I had betrayed him! He began to fight sitting in that chair for fear I would make him taste the offending entree with all the strength of an Ultimate fighter in training. He started screaming and one by one I could feel the pairs of eyes falling on him, and on me as my patience hit its limit, and I forcefully escorted a gasping, sobbing boy of 7 through all the tables full of people to the complete opposite side of the restaurant to the bathroom. I almost couldn't take it. I was so angry, so frustrated, but when I got him in the bathroom, what was I supposed to do? I fell to my knees in tears and yelled "You cannot act like this!" and threw my arms around his shaking little body. He was frustrated too. The place was loud and abrasive and he had put up with a lot, only to have something unfamiliar and unappetizing set down in front of his face. I let him cry while I held him, but tried to explain that we could not outburst like this. We eventually rejoined the table, and he allowed me to quickly eat half my sandwich, and we waited for the bill by the fish tank. The table behind us, near the tank, had a couple that had been there about the same time as we had, and I said in a very small voice, "I'm sorry if we interrupted your meal." They looked surprised and then the man said "No! You guys did not interrupt us at all! Please don't think that!" His wife or girlfriend shaking her head, very seriously, in agreement, "Not at all." My tears stopped me from choking out a proper thank you, and I was glad that for once I felt accepted, but had I not been brave enough to speak up, I would have walked out thinking every last table hated us. Maybe some did, but that's okay. My heart was lighter, and by the time we got in to see the Underwater world sea turtles, and amazon beauties swimming along, Chandler was calm again and grinning while we watched the jellyfish float and sway.

Autism Walk

So today I am talking fundraisers. The race we are all running to procure the desperately missing funds to bring something to the strange world of Autism...... Research. Cures. Causes. Reasons. This is a sad fight I see so many women struggling with. All the talk. Too much talk. I could blame vaccines and harbor that guilt and hate my clinic, or I could doubt my DNA or wonder if its because I didn't eat organic food, maybe it was the water, or air I breathe, maybe I did something I should not have done! But that isn't going to give me a typical 7 year old boy who sulks when I say no more Spongebob, or eat your broccoli, or no you can't have a go cart, or walk to the park alone.....Instead I say, no you can't stack all those things to climb up and eat the entire box of pop tarts, you can't keep making those noises at 5 a.m, you can't try to run out the front door into the street, you can't have a 7th bath today, and you can't take the cookies out of the box in the store...Chandler is my normal. I have come to enjoy some of our little routines. I laugh when he teases me and says its bedtime at 2 in the afternoon. Do I want to know WHY. Yes, of course I do. Do I wish he didn't have to struggle to speak, and wonder about things he doesn't understand, and I didn't have to hurt and wonder about his future? A resounding YES. But if I keep asking why without doing anything about it, it will drive me insane knowing I may never get the answers. So we will continue to fundraise for education, for awareness, so that every new person I ask for a donation gets a little taste of autism. Gets one little piece of information. I will keep talking about it until I have no voice left, because I AM my son's voice. I will reach out to everyone I meet. Do I really care if the money goes to treatments, research, or cures? Not so much. I do it for the awareness. I do it for me. But most of all, when I am holding my baby's hand and walking with him alongside the other moms who look and me and we share the smile of understanding, it doesn't matter. For a few minutes we get to be all together- walking in support of one another. For one morning, we KNOW we will feel the support, the joy, the hope, -without saying a single word.

My angels....

Today was beautiful. With a rough start, and a never ending pile of garbage falling on me-windy, rainy weather, yawning errands, crabby children, household chaos, unwritten papers for school, grocery lists getting longer, a strep throat stricken spouse, and creeping, sneaking exhaustion...for me a typical Friday. Most people are posting TGIF, and planning Friday night happy hour trips, or movie dates....ah the good life, right? Well, my "good life" was the return of support group. September through May, one friday a month,  I get to sit around for two hours with fellow parents of children on the spectrum while wonderful volunteers chase after my children. I can cry, vent, laugh, or just sit there in silence. One year ago, I was very alone. I had people to talk to, but the bond of truly understanding was something I desperately waited for and it never came. I prayed and prayed for angels to help me, and I got them. Amanda. My sweet, tender-hearted, friend who has an eye for beauty in nature and an empathy for humanity that I admire. Kate. My strong, fiery, and hilarious friend, who has the energy of 6 moms, and the ability to laugh when life is unbearable. Kristin. My passionate, artistic friend, who has a spiritual side that allows me to look deeper within myself. Christine. My wise and witty friend who can make peace with the tough things in life, and teaches me to do things with grace. If you didn't know it, you have brought something to my life that I was missing. My Chandler, who the world says is missing a piece (or as I prefer to say, has an extra piece) of the puzzle, was not missing nearly the pieces that I was. Chandler was the angel who led me to the rest of you. My journey with him has given me friendships to cherish and has brought more meaning into my life than I ever imagined I would be blessed with. As our group will widen and we will bring more amazing people into this circle, I feel more confident, more at peace, and stronger than ever. We can change our lives, our families, and our communities by joining together for the same purpose. I love you all.

People Suck

I want so badly to believe that the time I invest in advocating for my son is paying off. I love the rainbow and flowers idea that the world is a better place because they have someone as committed and educational as I. But just when I think I am getting somewhere. BAM! The door hits me right in the face, and I sit there, on the ground,  stunned for a moment.  The news story I watched today:

:http://www.cnn.com/video/#/video/us/2010/09/09/pkg.screaming.kids.sign.autism.wect?iref=allsearch

This woman will not allow screaming, crying, or whining children in her restaurant in North Carolina. This, of course includes children who scream or cry because they have autism. An angry mother is speaking out against her disgusting policy, and this old hag feels "sorry for the mom with son who is autistic", she "can't believe she brings him out in public" and my favorite, thinks the mom is angry because "God or mother nature gave her an autistic child and she is angry."
OH NO YOU DIDN'T! Calm down, Nikki, I think, this woman is an ignorant old fool who has never had children or grandchildren. Think. Nah, crazy old bat. My inner self is screaming at you and kicking you in the face, and painting Olde Shitty's over the Olde Salty's sign outside your door.
See, these are the times I can't get it under control. My decorum is shelved. My etiquette? Screw it. On the one hand, I can see it is pointless to get worked up about. Hell I'm not visiting North Carolina anytime soon. But you know what? The comments that follow from supporters of this piece of trash are just as bad and worse. They think we are preaching, soapbox moms up on our horses of high telling the world they need to make way for our disabled children, never minding what they do, and let us take over the place. They are dead wrong. If I thought like you Brenda Armes, owner of Olde Salty's, then I would ask all the ignorant people to get out of my city, so I can enjoy it Asshole free. Since I can't, and I have to listen to your crotchety old voice saying with a smile "You're one of the few moms that would bring your autistic child out in public.", I will lift my mood by envisioning the day when several moms bring their beautiful, silent, children with autism and she walks over to the table and says "What a lovely well behaved family." And a child, silent as can be, throws a plate of greasy hushpuppies directly at her repulsive, sour face.

Panic

I read another heart wrenching story today about a little boy with autism named Mason. Just over a month ago, he got out of a window while his big sister was watching him, and his parents were at work. He ran across the street to a pond. He drowned. His mother is now on a national mission to get the Mason alert going. Similar to the Amber alert, but for children and adults with autism who have but few precious minutes before finding themselves in dangers unknown. Her post included this paragraph:    

‎"They will walk into a busy intersection, despite traffic. They will walk through an open front door, not knowing if a predator is on the other side. They will hide in tight, enclosed spaces, not realizing the danger of suffocation or heat stroke. They will walk down a mile of railroad tracks, not realizing the train they love so much can kill them, and they will wade into the middle of a muddy pond, never thinking that they can't breathe the muddy water."...Sheila Medlam


It took my breath away, and tears welled up in my eyes for another countless time.  My son has escaped from our house with me in it. My friend Kate's darling Emily has taken off the split second her mom turned her eyes away. Smart little Logan has figured out how to undo his parents precautions. I love all these children, I cry over them, I am anxious over their well being. But my darkest, most paralyzing fear is that he will drown. He loves water. Loves it. He loves the motion of it, the feel, and in all forms. Soft rain, a warm bath, rushing rivers, still lakes and ponds. I can hear it pouring outside, and my mind wanders to the geese pond a few blocks away. The culverts down the street.  I get up and check and recheck the locks. Most parents will never know the restless sleep that moms with children with autism suffer. Every noise violently jars us awake, each noise taking away our very breath, the panic that takes over until you lay eyes on them, and you take an enormous breath in, and let out a ragged sigh of relief. I will never stop thinking about Shiela Medlam and the terror, anger, and pain she must have felt in that moment, and the agony she is going through now.
What I can do, and what I did do, was sneak down to Chandler's room and take the toy from his clenched fist, and set it on the nightstand. Take the small, rough planet pillow from under his head and replace it with a soft, fluffy pillow and run my fingers over his blonde, spiky hair. Feel his back moving rhythmically with his breathing, kiss the warmth of his angelic face, and wipe the tears from my eyes and whisper "I love you baby". I know I am not God. I have made deals with him to protect my son. I have given podium style lectures to my teenager and his friends.  I have shouted from my mountaintop the importance of safety and autism, and wonder if it's ever going to be enough....To protect him, to make me feel more secure...well, my friends it is one thirty in the morning and sleep won't be gracious tonight.

You have no fear, but I am afraid.

There are repetitive moments in life when you feel like you are back to square one. The days when giving up something seems like the only choice. Quit your diet, quit school, quit your job, quit...normal. Normal trivial day to day life happenstance is stressful for most people without the addition of the heightened sense of awareness that comes along with having kids, and keener still when you have a child with autism. A wanderer. A daredevil. A child without fear. The fear they don't possess becomes your own.
Today started rough-toddler with a fever, me late for class, Luke late for band, trying to cook dinner with two crying, (one whining) children and then I burnt the grilled cheese, and had to throw it out. We had cereal and fries. My teenage son was allowed to grill himself a hotdog on the patio, and I watched him watching me. A silent message back and forth between us of knowing. The stress mounting, the tired, burnt out faces we often wear. I was wiping up some of the mess in the kitchen-melted cheese, blackened crumbs, grease drips.....OH DEAR GOD. There was Chandler -standing on the end table on the high patio jumping up and down next to the railing. High over it, with one misstep he would fall and break his neck. Or worse. A silent scream escaped my lips and I felt like I was in slow motion as I took 3 strides to the door. I grasped the back of his Tshirt and pushed him through the open screen door to the kitchen in one fell swoop. I covered my face and ran past my ketchup faced, wide-eyed babies to the bathroom where I fell to my knees and threw up. I could hear my two year old crying for me. I could do nothing but go to my room and sob. Stare and the ceiling, lay on my bed, and sob.
Chandler came in a few minutes later and said "hug", and sat on my bed. He seems to know when I am in the most need of something. Reassurance. I begin to type, his face peering over my computer screen to see what I am typing. I tell him that I am sad. Scared. That he scared me! And that we DON'T jump on the furniture on the patio. He giggles, and I vow to remove every piece of that furniture immediately as I watch him navigating the edge of the footboard of my bed.  I am defeated. I am broken. I feel like less of a good parent than I ever have.....I need this minute. To write, bury my face in my pillow, cry and scream, and then get back up and do it again. Fight my way back to my super parent status. My comfort zone...And I am afraid.

The time limbo....

I sometimes wonder about the process of autism. Is the progress I see from sheer age, or is it correlated with what I am doing and what others are doing to help Chandler? Some days I feel smarter than his teachers, and I feel like I am leaving my child, my blank canvas, to some blundering novice painters. (Don't take offense if you are a teacher, past or present) This doesn't mean I don't appreciate all of the effort they put in, but because autism is (in large part) guess work, I wonder. I'm a blundering novice some days too. Why can't I just feel the right thing to do? Son-rise, ABA, Rapid Prompting, Floor Time, Play Therapy, Video Modeling....all of these choices and I have researched each one. I have read and reread, decided and redecided. I have given him vitamins, B supplements, homeopathic supplements, tried Gluten free diets, I have tried Horse Therapy, Water therapy, Assistive Communication, and the fear that I am going down the wrong path, or traveling too slowly, or not discovering some new therapy or treatment keeps me awake every night. Communication is key, and I will never stop searching. However, pathways in autism elude me. Why did he suddenly play ball with me for 20 minutes after years of only playing for 2 minutes at the most? Why, when telling him to get off the back of the chair, did he reach out and hug me and say "love you" spontaneously after months and years of me begging him to repeat it? Is it stubbornness? Is it simply his inner struggle to get these messages out?
Chandler chose..CHOSE..a truck at the store instead of a stim toy (sensory toy like a stress ball, pin cushion toy, stretchy dinosaur, etc.) and I put it back on the shelf to see what would happen, and he picked it up again. He wanted a truck. A regular, age appropriate toy. A ten dollar item that was more priceless to me than any blu-ray player, ipod, 60inch flatscreen...anything you could every give me.Time stopped. All I could do was stare at him.  I don't have all the answers, his teachers don't, his doctors don't...just God. I was never a very spiritual person until I got to watch miracles unfold. Until I got to feel the powerful hold that comes along with watching this child break down so many things I thought to be true about life, about happiness, about love.

I wish I was two people...or ten....

I can't be everywhere all the time. As much as I want to be with Chandler always, I know that I will miss some experiences and some will be wonderful moments when he is with his dad, or respite care staff, or his grandparents, or at school. I may miss a new word, or a newly learned skill, and that saddens me. Some moments won't be wonderful. Some of the people that care for Chandler will have struggles, and have to deal with meltdowns, but worst of all they will have to deal with ignorance in the community.
     Tonight Chandler went to the park with Tracey, his respite staff. It was such a gorgeous night, barely any wind, the sun warming your face. Chandler loves the feeling of swinging and bouncing. The sensory input for him must be delightful, since it one of the moments I see him with his big, beautiful smile. He went straight to the bridge that bounces when you walk across it. Of course Chandler didn't notice, there were two young girls attempting to cross. Their mother immediately yelled at Chandler "You don't jump like that! Can't you see the two little girls that are smaller than you?!" In fear, Chandler slid through the side to the ground and walked away. Tracey didn't miss a beat. She went straight to the woman and explained that he didn't understand, and he was non verbal.  The women didn't really apologize, she made excuses for what she said like it was no big deal. She didn't say another word however. I hope she felt ashamed of herself. I hope she thinks before she speaks the next time.
 Most importantly, these experiences renew my faith that I am not alone. His caregivers feel the frustration and anger that I do, and they look out for my son when I can't be there. I love that I can send him with her and feel confident that she will protect him, and watch out for him as I would. Thank you Tracey for not letting him be invisible, thank you for standing up for him in a world that can be terrifying and sometimes cruel.

First Day of School....

Running around the week before school starts is enough stress to make me break down, sob, and not get out of my pajamas. Instead, I stock up on coffee, school snacks, and emergency Chips Ahoy for me when I have a really bad day. I had Chandler's supplies all pack and his outfit picked out- a red polo, khakis,... and he looked so handsome waiting with his brand new Buzz Lightyear backpack on. He ran out to the bus like we hadn't been on break at all, and I waved and smiled as the bus pulled away. My thoughts raced and ran into each other in my head. Will he be better this year at talking? Will he be learning? Do they know he can use the bathroom alone? Will he tell them? Do they know he hates bananas and loves spaghetti again? Does he miss me?....
I did stop at school later this morning with his bag of things for lunches that was too big for his backpack. He wasn't happy to see me. He was sitting on the couch reading with his para. He looked up when he heard my voice and went back to watching the story. I asked him for a hug, and he stood and backed up to me in an awkward, backwards hug, and said "Bye." I guess that was my cue to leave. I am glad he is content, but as I pull away, I see his "neurotypical" class on the playground. They are running up to each other and giggling and talking about their summers. My eyes fill with tears....Will they ask him what he did? Will they say hello to him and remember his birthday party from last year and how much fun they all had? On back to school night, a little girl said hello to him and his dad tried to get Chandler to respond. "It's okay," she said softly, "I know he doesn't talk." I hope they keep trying. I hope they can see he is there too. Please make friends Chandler. I know they will see how beautiful you are, and how sweet....please...

Chandler and the Umbrella.....

Chandler wants to go outside always. It can be raining, snowing, or mid lightening storm, and he will pull me by the hand and lead me to the patio door and say "Ow-sigh", and I will look into his sad blue eyes and say "No baby its raining", or "We can't today, its too wet." Today he did not cry or scream, he smiled and said again "Ow-sigh", and put on his shoes. So I stared a moment and made that clicking sound with my toungue, and got the umbrella. I just bought this beautiful new rainbow umbrella with a big U shaped handle. It reminds me of lovely photographs where Marilyn Monroe looking moms shade themselves and smile with their blonde babies on a beach somewhere.
Chandler can't hold an umbrella, he doesn't know how I realized as I handed it to him. The weather was humid and sticky and the rain warm. He let it fall to the ground. I pulled it upright, and it softly drifted downward again. He stood there in the rain looking at me, and my tears mixed with the droplets. I said "Chandler up", and stood under the umbrella and showed him that the rain wasn't touching us. Then I stood out in the rain while he stayed under the cover of the rainbow fabric. He saw I was getting wet and I said out loud "Channy, look, mom's all wet now!" and he smiled, and gave me a little giggle. I jumped under and smiled and said "Now I'm NOT getting rained on!" We practiced and practiced and he finally stiffened his grip and the umbrella no longer fell. He walked all over the yard, this huge umbrella covering his head, with feet under the water pouring out of the drainspout, and tip toeing across the soft grass. Round and round, and mom stood watching in the yard, dripping from head to toe. Sometimes words aren't necessary. It is the experience and getting your hands in there that teaches the child who cannot speak. Go out in the rain. Brave the snow. Brave the mall. Do whatever it takes! He teaches me all the time he can learn. I have to let him.