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.
Saturday, October 16, 2010
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.
Tuesday, October 5, 2010
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....