“If only I knew then what I know now…” Isn’t that the catch phrase? Where do we look? Where do we find help, encouragement, support and acknowledgement on how hard our task is? Where do we find the strength in the moments when we feel alone? Lots of times we have family and friends who have said the wrong things –who have made us feel bad instead of better. We have had people stare or question us in ways that seem ridiculous. To each of these I have met the challenge, stepped up and taken action.
My daughter just turned four last week. Our community, which is 50 miles east of Denver, is a small one and service providers can sometimes be stumped by a child who has a special need, let alone a child with multiple challenges. Savannah was diagnosed prenatally with Down syndrome. What a task it was to learn in 7-8 months time as much as I could, and try to be prepared and educate myself to be a better mother and advocate for our daughter. When Savannah was born, I learned she had a unilateral hearing loss. At that time I was trying to deal with all the other health issues and concerns, bringing a newborn home and taking care of my other children. I was very unprepared to learn about her hearing loss. I sat with her at the second newborn hearing screening thinking to myself she would pass. I was informed she failed again and I needed to take her to Children’s Hospital Colorado for follow up. I sat in the lobby with my precious bundle of joy and all I knew to do was cry.
I had the very best early intervention team. Within three months of Savannah’s birth I had a whole team willing to teach me about her hearing loss, her other needs and support me. It was so reassuring and I eventually felt secure with the team. As Savannah grew, I was still learning but felt I was beginning to understand it all. I knew the months were counting down until her third birthday when she would transition from early intervention to preschool within the local school district.
I was preparing for the first steps of an Individualized Education Plan (IEP). I was just proud of her being able to sit, crawl, starting to stand and walk. Now we were being turned over to a new team that did not even know my daughter, let alone understand the dual-diagnosis of Down syndrome and unilateral hearing loss. When I took Savannah into the school to be evaluated for services prior to the IEP, it was not what I expected. I felt as though the professionals were discussing her needs and I was sitting in another room listening. The large group of educators were telling me not what they could do with Savannah, but how behind she was. They actually started out the IEP by telling me that their evaluations showed that Savannah was below the seventh percentile for her age group. I was devastated that they would say that to me. Instantly, I was emotional that individuals had put a percentile on my child. I was overwhelmed with close to 25 people in the room. I could not keep straight what each title was let alone how to understand each page of the IEP... I tried to give input. But my input was “mother-style” – not given to fit how I now understand the law and my daughter’s rights. I didn’t comprehend at the time that my input was equal to the importance of the other IEP team members.
The first struggle was that they only offered my child two days a week in preschool. Savannah had more contact hours per week between EI services and a toddler hearing group at Children’s Hospital Colorado than what they offered after she turned three. So I refused to sign the IEP. I was asked to provide documentation from all the providers that Savannah would regress without more service time. I gathered that, and a small victory occurred: Savannah was offered four days a week in preschool.
Another area we focused on in that first IEP was Savannah's access to communication. This access was so essential to her learning. The school offered me a para if they could find one to sign with Savannah, which they did. Quickly I learned that she needed to have the title Interpreter / paraprofessional in order to participate as a member of the IEP team. which we were able to accomplish. Her input was more valuable for Savannah that any other team member, in my opinion. She worked with my child four days a week every minute she was at school. What an incredible asset she has been.
Did I have moments when I cried? Did I feel defeated more than once? Yes, but I just told myself I needed to take a break and come back to the IEP process the next day. Did I feel as if I was the only person that felt this way? Yes. As I look into all of Savannah’s accomplishments no matter how big or small, I kept telling myself I needed to make sure I surrounded myself with people with more knowledge than I had, in both areas of Down syndrome and Unilateral Hearing Loss.
I asked lots of questions. I went to as many conferences in the Metro area that I could find. I decided that advocating was right up my alley. I attended the Hands & Voices ASTRa Training. I filed everything I learned away in my mind so I could recall it later when needed. I started to understand the law. I bought special education law books. I asked for more than one advocate to help me. If I did know the answer to a question, I searched till I found it.
I knew this challenge was bigger than I am. I needed to ask for help (which I am not good at) and be able to depend on others and try to learn. All of this took me out of my comfort zone. Funny how something small seemed to open so many doors. I looked for opportunities to make a difference and to help another, knowing that in each moment it gave me strength. It made me meet the challenge, being empowered by my sweet Savannah.
As a family, we never focus on what Savannah cannot do, or about her being delayed, as much as we celebrate all her accomplishments; the first time she signed “Mom" or sat up, or walked; the time she signed a song, or knew every child’s name in her preschool class in sign language. I do not sit idle waiting for someone else to tell me how she is doing, or what she can achieve or accomplish. I take the reins to show those around me what she can do! I learned to set her goals and standards HIGH. And even greater than that, to set mine even higher.
If we but only knew each thought, action, expression, laugh, gesture, sign, look, or desire our children have… We would be able to raise the standard of education along with social acceptance above all measures that have been predetermined by others.
What is success? To me it is to know each day that I choose to help others, whether that impacts Savannah directly or not. No matter how small of a task - by answering a question, or helping a parent in my community to advocate for their own child. To help a teacher understand how to approach my daughter or simply by stopping in each aisle of the grocery store for Savannah to be acknowledged as she yells “Hi” to each person that goes by. Success is truly determined by the waking of this child happy, joyful, attentive, thriving on her meaningful routines, ready for school, accomplishing all that is put in front of her each day. She does this on her schedule and nobody else’s. And each night her sweet smiles, loves and giggles spur us on as she gets ready for bed to wake and do it all over again.
The Communicator welcomes parents and professionals to submit articles on any aspect of D/HH Plus and help us unwrap the gift. Please contact Sara Kennedy at editor@handsandvoices.org.
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