Isn't that special?!?

Remember the blog project I did last year with three other women? Well, Froggie decided to resurrect it with me and we each got to invite another friend to join us. She invited a mutual friend (someone I met through her) and I invited a friend whose blog I really enjoy reading. So now it's Froggie, Mom of Many, Moma Rock and Merrylandgirl. Hope you enjoy the topics that we'll be exploring!

This week, Froggie picked the topic: Walking a mile in someone else's shoes: Talk about a time you experienced circumstances you never had before, which helped you understand what someone else was going through. (What effect did that experience have - Were you more sympathetic towards that person? More humbled? Or, did it not change your opinion at all?)

Before reading ahead, first see what everyone else had to say on this topic:
Froggie
Mom of Many
Moma Rock

When you have a new baby, the biggest concerns are when they'll crawl, walk, talk, grow teeth, eat solids and sleep through the night. However, those concerns become sidelined when the main focus is about how to keep them from eating their hearing aid.

That is just one point of concern in a sea of many others when it comes to raising a child with special needs. When I was asked if I had walked in someone else's shoes, this was the first thing I could think of. I majored in special education in college before switching to psychology. During that time, I learned how to write IEPs (Individualized Education Plans) and even had hands on experience working with both kids and adults who have special needs. At the time, I didn't think much of what was going through the minds of their parents. When my first child was born with hearing loss, I instantly became a parent of a child with special needs. Although the needs are different from the needs of the children I worked with in the past (and for my sake, thankfully a lot easier), there were (and still are) a lot of things that go along with those needs.

I've written in the past about how the Italy vs. Holland concept figures into my life. I heard the passage again at an inservice program from my work this past summer and teared up from it. While going to Holland does have a lot of unexpected treats and rewards, as a parent, I have to admit that I was expecting to land in Italy. The first time around was more of a shock. The second time around (present day) was more of an expectation and I was prepared (even as much as having my first child's hearing aids still available). However, there are the little things that throw me off track, like my baby's hearing aid shutting down completely while we were out of town. And this new development of having to watch her like a hawk so that she doesn't accidentally swallow her hearing aid or dislodge the battery into her mouth. I don't know many other parents who have this kind of worry. Along with landing in Holland, there are the aforementioned treats...the people I get to meet that I may not have met otherwise. I absolutely love my older son's pre-K teachers. I never would have met them if he had been at my younger son's school. I also met a woman who wrote a book about her cochlear implant experiences. I wouldn't have thought to read the book or even contact her if I hadn't needed the implants for my kids. It's besherte in a way.

There are also a lot of decisions to be made and sometimes I get judged on what route I choose to take. Getting a cochlear implant for my children is a huge decision. In the hearing community, it's accepted in the same way that Lasik is accepted for correcting vision. In the deaf culture, I'm seen as a pariah...at least by those who are not open to the idea of cochlear implants. Anyway, along with that decision is a surgery. Doing this surgery on a four year-old was not that tough, other than going into the operating room with him and seeing him be sedated. However, it seems scarier for me to do it on a baby, even though this will help her in the long run. She can't tell me when something's bothering her, other than by crying.

Then there's the decision about schooling. While it's obvious that my daughter will go where my son has been going, being in a community where almost all the children go to a Jewish day school makes it more stressful for us. We have to find other ways to fulfill their Jewish education. And since our middle child is hearing but we don't want to play favorites, we're planning to give him a public school education as well, and are working on sending him to the same school as his siblings when he starts kindergarten. I'm sure that won't be questioned at all. (Pardon the sarcasm.)

Another factor is the extra stuff. Therapy, for instance. Also, lots of hearing tests (or mappings in the case of children with CIs). We go to Johns Hopkins in Baltimore for a lot of this, which is an hour's drive in both directions. However, it's worth it in order to get our children the best services possible. The cochlear implant surgeon there is one of the best in the nation. People come from the other side of the country to have him do their childrens' surgery. The audiology department is also amazing. We're still trying to work out speech therapy services for our baby though. We have someone coming from Early Intervention, but that's only twice a month and only a half hour each time, which is spent partially by tinkering with her hearing aids. There are no speech therapy centers in the nearby area. We'd have to go to Hopkins every week or to some place in Virginia. With both of us working, it's hard to manage that kind of schedule. When we lived in the previous two states, I was able to go somewhere nearby to get our older son to speech therapy services. Again, the drive was sometimes longer than the therapy.

Finally, there are the questions. Questions we have for ourselves and for other people, as well as the questions people have for us. The biggest one is about genetics. Where did our kids get their hearing loss from? How come we haven't been genetically tested? Do our older son and the baby have the same condition? (We hope to have that answer soon.) Why does one of our children hear just fine? Does he have the same condition and we don't know it yet? Why did we wait till our older son was 4 before getting the implant but we're not waiting as long for the baby? We've answered these kinds of questions many times and even asked them of ourselves at times.

For all parents who have been down this road already, I know how they feel. For all parents who are new to this situation, I can tell them I've walked a million miles already and they'll be following me on that path. I can only hope to make it easier for them. I am always offering myself as a contact for parents who are just finding out that their kids have hearing loss. I know it's specific, but it's the only special need with which I really have any personal experience. If I can make someone else's journey easier, it will have been worth walking all these miles. Then again, my kids make the journey worth it every day!

Side note on the theme: I found out yesterday about a baby that has gone missing. I can't say that I've experienced the same thing, but I also know how her mother feels because I can relate as a mother, thinking about how scared she must be feeling and the despair she must be going through. My older son disappeared in a toy store for two minutes and those were the worst two minutes of my life, so thinking about a possible lifetime of being unable to find your own child is dreadful and heart wrenching. I hope she is able to find her and that the baby is alive and safe.

Having said that, I don't always have to walk a mile in someone's shoes to feel sympathy for them. I read stories or even hear firsthand about bad things that happen to people and I cry for them anyway. I don't want to ever be in their shoes, but it doesn't mean that I don't care about what they're going through.