Years ago, someone told me, "It's a marathon, not a sprint." Our Audiologist also told me, when Audrena was little, she wished she could show me what things would be like by the time Audrena reached middle school, to show me that it would all be ok. I have forgotten about this blog over the years. Life has a way of happening. The road meanders, and it takes you in different directions, but sometimes you find your way back. Today, I found my way back to this blog.
This time of year is always so exciting. School gets out for the summer next week. High school graduation is this weekend. This morning, I read a Facebook post from a friend whose son has bilateral cochlear implants and is graduating high school next week. This young man is a great success. He owns his own construction company and does home remodeling projects for clients. You read that right. He is graduating high school, and he already owns a construction company. He has forged his own successful path despite his hearing loss. His mom shared a scrapbook page from when he was a newborn, with the following poem on the page:
Our Perfect Baby
Oof. That one hit right in the heart. It's amazing how raw the emotions still are after all these years. Audrena is 12. Twelve. And it's still raw. Yet, it's so comforting to be where we are today vs. where we were 11 years ago. Dr. M. was right. Audrena starts middle school in the fall, and everything is ok.
Don't get me wrong, we still work on language and vocabulary. Grammar can be a little troublesome. At some point, we burned out as parents, or at least I did. We got tired. We slacked off on some of the hard work we were doing at home. I think that's normal. Just don't stop completely. We kept slogging away with therapy after school and in school. Progress didn't stop. Just keep swimming the best you can.
Every three years we go for IEP evaluations at SD Services for the Deaf (FKA SD School for the Deaf). It's hard to admit, but every time, I get horrible anxiety. Horrible. It's almost debilitating, and I lose sleep. I tell you this because I want to be real. No one likes to hear that their child is behind. We wish our children to be "normal." I get caught up in the scores rather than the progress. The most recent evaluations were no different, except I had to be out of town for work, so Randy handled them. It took a lot of anxiety off of me, but when we got the reports, I still had to take a moment to breath. And you know what? When I read them, I cried, the same as always. I have cried every single time since day one. Only this time, they were happy tears. Every score was within the normal range except the language evaluation, and there was a note in the report from the evaluator, someone who has known Audrena from the beginning. The note essentially said it was not an accurate evaluation as Audrena was tired, hungry, and just done. I know that evaluation would have, under different circumstances, been normal range as well. I cried happy tears because Dr. M. was right. All that hard work has paid off. Audrena might have a little work to do with language, grammar, and vocabulary, but I'll take it. She gets good grades, she is a social butterfly, she has friends, and she is happy. She is thriving. What more can I ask for? I tell you this because I want you to have hope, and I want you to know that it WILL be ok.
But what about the child? I joined a webinar style workshop a few weeks ago, and there was a panel with a lot of successful people who have varying hearing levels. Randy and I watched it from our living room. I submitted the question, "What is one piece of advice you would give to a deaf or hard-of-hearing child today?" Rachel Arfa said, "It will get better." Lance Allred said, "The world has a million ways to break your heart, but keep it open." At some point, Audrena noticed she hears differently than other kids. At some point, they all notice. Kids asked questions. She got tired of it. She didn't want to be different. We had lots of conversations about how everyone is unique. Some people wear glasses. Some people use walkers or wheelchairs. There is nothing wrong with being unique. We have managed this by introducing Audrena to opportunities where she can be around other kids with varying hearing levels. We go to gatherings through Hands & Voices, Advanced Bionics, SD Services for the Deaf, and other such organizations. There are summer camps for kids with different levels of hearing loss. Audrena has attended one for the past two years, and it has been the most wonderful experience. She has learned a little sign language, made friends, and looks forward to going back. If your child is approaching or is in that phase where they don't want to be "different," I encourage you to involve them in things like this to show them they are perfect just the way they are, and there are many other kids just like them who are also perfect.
I also encourage you to find a way to educate their schoolmates and teachers. SD Services for the Deaf has done a wonderful job of helping us in that department. Each year, they have done something different to help educate her class. It started with the Outreach Consultant giving a fun, interactive presentation about how the ear works, or doesn't work, and how cochlear implants or hearing aids help when it doesn't work. As Audrena has gotten older, it has evolved into helping Audrena create a presentation for her to give in front of her class. She will give that presentation for the second time this month. The first was in front of her class, and the second will be in front of the middle school teachers. It's a great opportunity for her to advocate for herself going into middle school and to introduce the teachers to her unique needs in the classroom. Self advocacy is such an important skill to teach these kids as they grow.
I'm not sure when I will get back to this blog. (You see how long it has been since the last post.) If you're finding this for the first time, my advice is to find your people. Create your network of healthcare professionals, educators, friends, and family. You will need them over the years, and you will grow to love them more and more. (Eleven years later, we still see our professionals at University of South Dakota, University of Iowa, Boys Town, and SD Services for the Deaf.) Work closely with your child's school. Never be afraid to advocate for your child. Occasionally, you will have to be the "tough guy," and that's ok because only you know what is best for your child. Teach your child to advocate for themselves. Give your child all the opportunities you would give any other child, plus introduce them to peers who also have hearing loss. They will thrive. Everything will be ok. I promise.
