How does it feel to be the parent of your child?
Amazing. Johnny is a brilliant boy. Yes, there are challenges to being a parent, and there are times when I wonder if I could just lock him in his room for an hour while I recuperate from whatever shenanigans he has planned for the day (yesterday it was duct taping his little brother to the wall). I have had to put up a lot of fights at the school and in the community to get Johnny the extra assistance and support he needs. Classrooms, lunchrooms, movie theaters and such are not always designed with the deaf or hard of hearing in mind. It has been a struggle for our family to offer Johnny a similar lifestyle to his brothers, friends, and neighbors.
How is your child developmentally the same or different from other children at the various ages?
Although Johnny's deafness has been a challenge to his growth and development as a human being, we don't treat him any different than his hearing siblings. Johnny is held to the same academic standards and moral obligations as his brothers, and he is required to invest the same amount of energy into household chores and participation in after school activities. He is reading and writing at a lower level than many of his classmates, but that seems to be typical of a student that is deaf or hard of hearing. We don't want his condition to define what he can and can't do, so he invests more time than many of his peers in learning material and completing assignments. Johnny is of average height and weight compared with his same aged peers, and he has unusually good balance for a person who is deaf. He is even to play on the same baseball team as his older brother!
What professionals/agencies do you deal with? What services are available to you and your child?
Every year Johnny's father and I meet with teachers and counselors for his IEP. This is always a time of turmoil, as the school is not fully equipped to meet all of Johnny's needs, and I am not willing to let him stand on the sidelines and watch his classmates thrive while he falls behind. We have a tutor that has a background in working with children who are deaf and hard of hearing, but this only helps him to retain prior knowledge; it does not fill in the gap between what he gets out of school compared to his classmates. Medically speaking, Johnny sees an audiologist/ear, nose, and throat doctor as needed. Because he is a child and still growing he needs to continually be measured for new hearing aids. He loves his doctor, and doesn't mind giving up some after-school playtime to see her.
How did you find out about the above services?
When Johnny failed his newborn hearing screening test, the doctors and nurses at the hospital were great in providing us with pamphlets and newsletters full of references. Living in a small town and not having to have deal with deafness in a newborn, they were not very well versed in answering my and my husband's questions. However, we were able use the resources they gave as a starting point, and we found a great audiologist that worked with newborns and children. She put us in touch with the important people we would need to talk to when Johnny started school, and the rest is history.
What financial burden, if any, are you experiencing?
Fortunately for us, we have a great medical plan through my husband's employer. We have been very lucky to only have a minimal copay for each doctors visit and hearing device that has been purchased over the years. Our school PTA has been very helpful in using some of the funds they raise to improve the classroom acoustics, and we chose to purchase a wireless microphone headset for use between Johnny and his teacher in the classroom.
What other information do you want to share?
I just want to let other parents of children who are deaf or hard of hearing out there know that there is light at the end of the tunnel. When we first found out about Johnny, it was hard. All we could think about was all of the ways that his life would be limited by his inability to hear. In time, we learned that Johnny had all of the same needs and requirements as any other child. Yes, we do have to make accommodations to meet the specific demands of his limited communication, but it is worth it. The help and support is out there, you just have to use it. Be an advocate for your child, stand up for child, and teach them how to stand up for themselves. Most importantly, don't treat your child as a victim. They can and will thrive in a society that does not cater to the hearing impaired if you only teach them how.
Link to glogster: http://aprilsauce.glogster.com/deafness/
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