I was born with Stickler Syndrome, a primarily genetic collagen deficiency. I say primarily because I’m one of the lucky few to be the first generation with this syndrome in my family. Here is the short answer to those who don’t know what it is(which is 99% of the people I meet): Stickler Syndrome is a progressive connective tissue disorder that affects my hearing, vision, and joints. To elaborate a bit more – I am severely nearsighted, at very high risk of retinal detachment(which I have thankfully avoided so far), I lack collagen in my joints which results in widespread, daily, chronic pain that I honestly don’t know what’s going to hurt day to day. Finally I have moderate/severe bilateral sensorineural hearing loss that can progress at any time.
Now that there is a bit of a backstory to me more about my service dog, Debbie. I started research into obtaining a service dog 6-7 years ago when I was about 18 and took several years debating if it was a good idea for me. I worried if I was disabled enough to qualify, would one truly help me, could I care for a dog myself, so many things discouraged me from applying for several years. Finally, at 21 I really took a good look at my life and one thing that really struck me was I was truly scared to be alone. My hearing loss made being anywhere without someone with me something I dreaded. I may be able to hear fairly well with my hearing aids in but only if the person is looking at me and I’m not distracted. I have no sound directional awareness, I may hear someone call me, or a car beep or an emergency vehicle coming but where that noise comes from is what I can’t figure out and that can be dangerous. In my research, I found NEADS, based in Princeton, MA. Once I came across their site I knew I found who I was looking for and I hoped they could help me.
A hearing dog has the ability to quite literally be ears that actually work for the handler. Debbie alerts me to everything a person with normal hearing may take for granted that they can hear. She tells me when someone is trying to get my attention when a car is coming up behind me, when the fire alarm goes off, when I drop my keys and don’t hear it, and many other ways. Due to my chronic pain, Debbie was also continued with some basic assistance dog work as well as her hearing dog work. She is able to pick up my debit card/money or my cell phone if I drop it, or press the handicap door button if needed. There are not many things she can’t do!!
NEADS is truly an amazing organization from the second I submitted my application and still through today, 2 1/2 years after I brought Debbie home. What truly drew me to them was that they provide service dogs to veterans and victims of the Boston Marathon Bombing for no charge at all. Being from Boston the fact that they helped the victims of that atrocious crime really stuck with me and I knew that they were an organization I could and would love. They also use local prisons to help train the puppies that go through the program, and as part of team training on campus, we have the option to formally meet the inmate handler. This opportunity was truly amazing and I’m so proud to have a dog from this program, especially after seeing the pride and joy all of the inmates expressed when I met them.
The process I went through:
- 12-15 page application submitted online, which detailed what my need was, medical documentation that I had the disability I claimed, and character letters from someone who knew me.
- After my application was accepted I had to go to the NEADS campus for an in-person interview that was several hours long. We went over my original application and what my needs truly were. I was officially accepted that day and the wait began.
- I received an email detailing who my dog would be and to set up what two weeks I could come to the campus to do team training.
- In person, team training was two weeks long. I lived on campus for that time with three other women who also were training with their new service dogs. We had group training every day and by midweek had the dogs full time. Having those other three women was truly amazing we are still all friends today and they are the reason I was able to get through my first year with Debbie as easily as I did.
- The final step in this process is graduation! NEADS holds a formal graduation for all successful teams 2 times a year. While Debbie was already working for me having graduation as an official way to say yes we can do this is priceless.
Having a service dog is not perfect, there are days that Debbie has an off day – she is a dog after all! People still do not understand that a young, seemingly healthy (to them) woman who is not blind may need a service dog for another reason. The laws have not caught up to the new craze to claim your pet is a working dog and there are stores that I am not comfortable going into alone just Debbie and me because fake service dogs are not told to leave. But despite all of these negatives making the choice to get Debbie has been the best one I’ve ever made. I can now confidently go out alone, be home alone and move out on my own and feel safe. I know that I will ALWAYS be told when someone is at the door when the fire alarm is going off when a car is coming up behind me if someone is trying to talk to me. Debbie truly is ears that actually work for me and I am beyond thankful for her and the life she has given me!