When we started the adoption process for Cary Lynn, I knew we would have to fight for her. What I failed to realize is how much I would have to fight. So much so, that I jokingly asked for boxing gloves for Christmas. It started with attempting to arrange Early Intervention (EI) services. When we brought our daughter home, we were told that services simply were not available. Early Intervention (EI) said they were “too busy to see her” and we should “be thankful” we were at least on the waiting list. Finally, with help from our hospital’s medical team and disability advocates who knew the law; Cary Lynn was assigned a visual services worker (vision specialist).
Getting Services & The Run Around
Once visual services were finally obtained, our first vision specialist rarely showed up. Appointments were canceled for a variety of reasons and my frustrations grew. My prior experience had helped me to find “my” voice and I knew I had to advocate for my daughter. I quickly learned the laws and how to file complaints. Thankfully, after many conversations with our case coordinator, we finally ended up receiving a wonderful vision specialist who worked with Cary Lynn. However, we continued to encounter additional problems with some of her other service providers. After much consideration, my family chose to end our services with Early Intervention (EI) in search of better alternatives.
A Strained System & Asking For Materials
In our area, we have “one” case coordinator who’s sole responsibility is managing services for blind and visually impaired children. With a case load of close to 100 clients, getting this coordinator’s attention is difficult. The process of getting my daughter anything is both hard and frustrating. We’ve had to fight for supplies and vision learning materials.
In the beginning Cary Lynn was only provided with a light box and a few other supplies. I then learned that we could ask for more. Even though I’ve had to struggle to get a majority of these materials; we are now the proud owners of books and other sensory items that my daughter loves to utilize.
My heart goes out to other families who may not know how to begin the process of attaining services. As I type this, I realize just how far we’ve come. However, when you have a child with a visual impairment, you know there remains such a long way to go.
My daughter gets a whopping 30 minutes of consultative vision services every month… and that is sad. It means that my daughter doesn’t get what she needs. It also means that other children don’t get what they need as well. As a mother, I find that unacceptable.
Lessons Learned from the Fight & Gaining Support:
With every cloud of frustration, there comes silver lining. Throughout this process, my family and I have been connected with an amazing community of VI families. I was able to network and located a support group where I can talk, vent, and share my feelings. The group’s facilitator has done an amazing job of helping me become a better advocate for my daughter’s needs.
My fellow group members go above and beyond the call of duty. They listen. They advise. We support one another through every battle. Because they have empowered me; I feel my experience may help other families.
I know I may never have all the answers when it comes to my daughter’s vision loss. I’m pretty sure life will remain an uphill battle. My daughter is worth every obstacle and opponent. I’ll gladly put on those boxing gloves and fight for her until my last breath.
Pictured: Amy pictured with her husband, son and daughter (Cary Lynn) on a blanket in the park.
Editor’s Note: It is imperative to find your voice as an advocate for your blind or visually impaired child. The term “Early Intervention” refers to the services provided to assist your child in meeting their developmental milestones. Under the Individuals with Disabilities Education Act (IDEA), infants and toddlers with disabilities and their families are entitled to receive early intervention services from the time the child is born until his third birthday. The rules governing early intervention programs are found in a section of IDEA known as Part C, so you may hear them referred to as “Part C programs.”
If you are currently unsatisfied with you child’s current services provided by Early Intervention, contact your case’s Service Coordinator immediately. If you still remain unhappy with the response, call your area’s central office and ask to speak with a Supervisor. For more information, visit the Center for Parent Information & Resources.