Monday, March 11, 2013

Let's start at the very beginning!


I sit at my desk, wound tight with nervous energy. Tomorrow morning I will board a plane and fly through Denver to Portland, OR. I will get into a rental car, drive to my hotel and then wait.

What am I waiting for? Well, let me start at the beginning.  In November 2010, our son JJ was diagnosed with Autism. JJ had a normal infancy (despite being born 6 weeks prematurely) and toddlerhood until he turned 15 months of age. That was when we moved from Hunter Army Airfield in Savannah, GA to Fort Carson in Colorado Springs. His daddy deployed shortly after arriving at Ft. Carson and I noticed JJs words disappear. He resorted to screaming and tantrums when I couldn’t understand what he wanted. He was violent, dangerous (to himself) and had absolutely no sense of safety. JJ’s pediatrician suggested a developmental assessment, I said let’s wait until Daddy comes home in case the deployment is the cause. It wasn’t. 

Our world got very small. We stopped going places; JJ didn’t even come to his Daddy’s homecoming from Afghanistan because I knew deep down (even without a diagnosis yet) that he couldn’t handle the crowds and the noise. We began to withdraw and saw very few people and always in very small groups. We stopped visiting friends, instead they came to see us if they were interested. JJ was impulsive, loud, non-verbal and a big handful. He never played with toys appropriately, lined blocks up by color and was devastated if anyone messed up his work. We kept to ourselves and got a babysitter to take care of JJ even for a family event because he was too hard to handle without additional hands, or he stayed at home with the sitter and Josh and I went out.

It was exhausting. It was emotionally draining to have no one understand what our life was really like. I was holding it together on the outside and dying inside. Constantly feeling like I had to explain JJ’s behavior or why he wouldn’t talk to people was becoming overwhelming. It’s really hard to have a life outside of hours and hours of therapy, even when the therapy helped. Slowly JJ began to regain words. His first word came back at 2.5 years of age when he said “Ball”. I cried. But I felt like there were some things that his therapists couldn’t teach him.

In January 2011, while cruising around the internet I stumbled across a website for Autism Service Dogs of America (ASDA). I had never thought a service dog could be beneficial to our son. I began to research the idea a little more and found a couple other organizations that trained Service Dogs for children with Autism. Autism Service Dogs of America however is the only one that specializes in Autism Service Dogs. They do not train for any other disabilities. I felt hope. I felt that there might be way for our family to rejoin the world around us, to attend functions and even the playground without fear.

After much discussion and voicing concern about the price tag of a service dog, we decided to apply. So we filled out the application, got letters from doctors and therapists outlining some of JJ’s needs, made our home video (a video to show the physical home of the family, introduce the family members and showing the recipient child interacting with a dog) and sent the package off.

In April 2011, we were approved by ASDA for a dog for JJ and began gathering ideas for fundraising to help with the cost of the dog. We had friends make T-shirts that we sold for 20.00 each, we held a garage sale for “Happy Tails for JJ”. We had very generous family, friends and church family too. We raised $11,500 of the $13,500 cost within 8 months and the final $2,000 came as a grant from ACT Today for military families in California. We had applied for a grant from them in late summer 2011 and it was given to us in December 2011.

We were done! It was an incredible feeling to have that much amazing support from family and friends and perfect strangers! Now came the really hard part.

We had to wait.

ASDA generally does not place a service animal with a child under the age of 5. When we finished fundraising JJ was only 3.5 years old. So we knew we were in for the long haul. ASDA did agree to make an exception for us and JJ would receive his service dog between the age of 4.5 years and 5 years of age.
During our waiting period, we began discussions with JJ’s school district about the service dog’s arrival and attendance at school. An Autism Service Dog is deemed a service animal under the Americans with Disabilities Act (ADA) and we knew that the dog would be permitted access to JJ’s classroom, however we knew some families through ASDA had to fight in court to have their child’s school district comply with the provisions in the ADA. We are grateful that our school district was willing to comply, to quote a school official “The ADA is a very BIG law; we have no desire to challenge it”. The delicate dance came in protecting JJ’s rights but also protecting the rights of the other children in the classroom. Thankfully again, all sides were reasonable in this and agreements were reached with no difficulty. 

We continued to wait.

The wait list for a service dog from ASDA is inching closer to 2 years long now for placement; you cannot be placed on the placement waitlist until the fundraising is completed. ASDA trains small classes of dogs (5-6 dogs per class) and classes generally are spaced about 6 months apart. ASDA typically uses three different breeds of dogs, Labrador retrievers, Golden retrievers and Labradoodles for service dogs. These breeds are often used for service animals because of their temperament, trainability and the general desire of the dog to please their trainer. The classes are named based on the alphabet, for example, the J class and so on; each dogs name starts with the letter of their class. The dogs begin training around 8-10 weeks of age. They live with puppy raisers who are in charge of their day to day training. From 8-10 weeks on, they are in the community every day learning to interact with people, handle unpredictable situations and often loud, startling noises. Over time they graduate to higher training and eventually reach the advanced phase where they train in the most difficult skills to qualify as a service dog. This is the final phase before training with the primary parent from their new family and on the last night of that week of training, is the service dog’s graduation dinner with all of the puppy raisers that have trained the dog, the primary caregiver for the child receiving the dog and the program coordinator and placement specialist for ASDA.

In January 2013, we got the phone call we had been waiting for. Placement dates were set and we finally would learn who JJ’s service dog would be. We were so excited to learn that a 2 year old Golden Retriever named Hazel (part of the “H” class), would be joining our family in March 2013.

I fly to Portland alone tomorrow, as the parent that spends the most time with JJ (the primary caregiver); it is my responsibility to be the primary handler for Hazel. I am excited for the time away on my own but know that it will be challenging to be away from my family for an entire week. This is the first real separation ever for me from the boys and I know it will be full of ups and downs for me but I’m looking forward to learning new skills and bonding with the dog that will become my son’s best friend.

So tonight I sit here full of nerves yet excited for all the possibilities to come for our family. I know the next week will be full of lessons and testing to make sure that Hazel is fully qualified as a service dog and that I am fully capable of being her handler. I look forward to learning all these new skills and cannot wait to bring Hazel home to JJ.

No comments:

Post a Comment