Our Journey with Matthew
After moving our family to Colorado three years ago, my wife and I were shocked to learn about our son's rare skeletal disorder. Matthew was nearly two. From this diagnosis, our doctor recommended having his hearing and vision checked. After many appointments at Children's Hospital, we learned that Matthew did have a hearing loss as well. His first diagnosis was a bit hard to swallow, but a hearing loss? My wife and I found comfort in this and felt completely at peace. We can handle that. I have been deaf since birth, and my wife is a certified ASL interpreter. It was clear to us that Matthew was such a gift, a blessing for our family and perfectly meant for us . and so our journey began.
After Matthew's diagnosis, we were instantly in touch with a myriad of great agencies in the state. Matthew had in-home speech therapy, and we quickly developed his first family IEP plan. My wife has a background in special education and knew the ins and outs of what Matthew deserved. Everything to this point was going smoothly-we now look back and can see it was just the calm before the storm.
Our school district had completely different ideas about what Matthew deserved. They instantly called Matthew "theirs" and said that their way was the right way a child with a hearing loss was taught. he would be in a program where he would learn to speak, as this was the way to be a successful child.
This was a huge surprise to me. I am a profoundly deaf adult, and my native language is ASL. I do not speak, maybe to get my wife's attention sometimes, but I was completely insulted at our school district's lack of respect toward children that are deaf or hard of hearing. I am a successful human being with a disability. I have talents, intelligence, and love to offer to the world, and I do all of this through American Sign Language. Who were they to tell me that MY son would not be successful unless he only spoke English? Our smooth journey was suddenly a very rocky path.
After a preliminary meeting, and then learning that our school district had drastically different plans for our son's education, we sought advice from Hands & Voices. Our journey seemed so rocky and unpredictable, but Hands & Voices was there to guide our way. We knew in the depths of our hearts that Matthew deserved better, and the school placement they were insisting on was not right for our family. We were ready to fight for him, for his education, for his social life, for the simple fact that he is a funny and loving little boy who has a God-given right to communication.
At our first formal IEP meeting, we had an advocate with us. She was such a blessing. She informed us before we even entered the building that the IEP team had already been meeting and planning for our son. During the very emotional meeting I was enraged at the fact that my wife and I were not looked at as part of the IEP team. They had already planned Matthew's education and wanted us to sign on the dotted line. I expressed how hurt I was that we had been so rudely left out of the decision making process. I was overcome with tears as I explained that all of my life, as a Deaf person in a hearing world, I was left out. I was appalled that even as an adult, here I sat across the table from these people that supposedly had my child's best interest at heart and was being left out of a critical discussion about my very own son. I had been there before. Born in the Philippines , I was blessed to be in a school with all deaf children, but when we moved to California and I was in middle school, I was the only student that couldn't hear. I know how it is not to understand what everyone in class is laughing about, not to have 100% access to communication, to be picked last for the team.I would not allow my own son to go through what I did.
My wife and I fought for Matthew. We learned the laws that govern Colorado , especially the Deaf Child's Bill of Rights. We were supported by our family, friends, and Hands & Voices, and it was finally decided that Matthew would not go to school in our home district, but in another district that fit his needs!
Imagine that, fighting for your child's basic needs? For access to communication. For peers who use the same mode of communication. For teachers who have fluent sign language and total communication skills. I know these fights far too well. Our world is not perfect. Our school systems do not always do what is best for our children. That was our goal: to do what was best for our child, our gift, our Matthew.
Our journey is once again smooth, but unfortunately, as IEP's go, at the end of every school year things seem to get a little bumpy again. We have been blessed to keep Matthew placed outside of our home district for two years now. To all of you parents: Fight for what is right for your child, for what is right for your family.