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.