Shinybass journal entry 03/25/19

‘Special needs’

What a broad, sweeping term. We probably all have something going on, to varying degrees, yet there is a classification for folks who maybe need a bit more help than others. No one really knows where to draw a line on the whole thing (and does it need one?) There are Deaf folks who compose great music and Blind people who are amazing artists. There are lots of challenged adults that defy the odds and work, live, create, and do more to contribute to society than other (dare I use the word) ‘normal’ adults.

And what is normal anymore? Let’s just throw that out of the window. I understand there is diagnosis, treatment, awareness, and assistance. Again, I think we all sort of need that. What was treatment 100 years ago is now considered cruel and inhumane, and luckily our diagnosis for so many issues is getting more precise, leading to better treatment.

Why are we discussing this topic in here? Well, because the term ‘special needs’ hits close to home for me, now in a whole new way. As some of you may know, our boy Miles was born with hearing loss in both ears. We are navigating a lot of uncharted (for us at least) waters with hearing aids, a cochlear implant (revision – now two implants), speech therapy, having to move to a new TN county for better schooling benefits, etc., and the list seems to continue to grow weekly. It’s a lot, for sure, but nothing that we can’t handle. (more details on all this below…)

I have more than a  little experience with this. My older brother Chris is ‘special needs’. He was diagnosed as a baby as having learning developments, and the doctors told my Mom to just send him away. The fighter that she is, she didn’t want to accept that. There was a short stint that Chris was sent to special school for a short time away from home (again, the treatments have become much better than in the 60’s), however, as hard as it was, our family was truly a family when Chris was home.

Chris is spectacular. Anyone that has met him knows that he is kind, affectionate, and doesn’t have a mean bone in his body. As sweet as he is, raising him wasn’t a picnic. As we teach toddlers things like please and hello, Chris was delayed in everything. He went to and graduated from school, and still lives in Virginia Beach in a home with other adults with varying levels of disability.

In some ways, our son Miles is the same way. To use the words of my younger brother, he commands attention when he enters the room, and the amount of sweetness this child possesses cannot be measured by even the most advanced scientific instruments. Miles comforts his older brother Henry when Henry gets sad, and Miles’ hugs would stop a World War. Miles doesn’t have any cognitive issues, and although he’s been delayed at some points in his developments (we suspect due to the hearing loss), he is a very bright boy and picks up on everything. And he’s a bit of a smart aleck. Wonder where he gets that…?

In all 50 states, there is a newborn hearing screening test before the child leaves the hospital. Miles passed one ear, but not the other, which prompted another test before we left, then another two weeks later. After more testing, it was determined his ears weren’t up to snuff, and long story short he was fitted with hearing aids.

I am not sure if you have had children, however, keeping hearing aids in a child for 10 hours a day is damn near impossible, especially when we are just figuring out, well, everything with him. We tried caps, and that was somewhat effective. He is much better about keeping his hearing aids in now that he is a little older, however, his ears have moved into a different classification, called ‘profound hearing loss’ in his right hear, and ‘moderate to severe’ in his left.

So what are the options? Well, he could essentially be raised as a deaf child, still using his hearing aids, however, we would hover in that ‘in between’ area with the hearing aids only being mildly effective. Or we can grasp technology and go for the double cochlear implant.

That is what we are going to do.

What does that mean? It means that we have a LONG road ahead of us, with therapists, adjustments, and daily training to get Miles ramped up so he can join the band. What does this mean for his family? It means that we will only be stronger in our journey together, and big changes are ahead.

The fun part is the rollercoaster we’ve been on the past 12 months. Here in Nashville, there is a wonderful school called Mama Lere Hearing School that Miles can attend. It’s at Vanderbilt, and we feel it’s the best shot for Miles to get ramped up quickly. In order for us to send him there for free, we have to move into a new county. So our quiet country suburban oasis is up for sale, we found a new house that will be our new home, and we are hoping all the stars align in the coming weeks to make it all happen. Like I said, big changes ahead.

Why are we typing about all this personal goings on a usually lighthearted blog? Well, maybe, just maybe, there is someone out there going through something similar. Maybe your baby didn’t pass newborn screening. Maybe there are more serious developmental issues going on. Maybe you have felt like my wife and I, which is the feeling of sailing a rudderless ship (or that broken Hobie Cat in Jamaica, right honey?) and need some help, guidance, or just a shoulder to lean on. Well, talk to me if you need. And I may need to talk back. That’s why we’re here.

My Mom, with her years of experience in counseling, is (naturally) especially keen in the ways of parenting a special needs child. She has written several books on the subject, and has just published yet another. This one hits one of the challenge that we sometimes forget: Forever parenting. If you like, give it a look see on Amazon here:

https://www.amazon.com/Forever-Parenting-Voices-Parents-Special/dp/1973638541/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=1553032744&sr=8-1

Now, back to that Hobie Cat…

Here’s the story I never hear the end of. On vacation in Jamaica, I convinced Maegan to let me take her out on a Hobie Cat into the bay off our resort. It was a fine sail, and as we zigged and zagged, we had fun, but then realized we had an excursion appointment and had to get back to shore. Now, I owned a sailboat and knew what I was doing, but for some reason, this Cat wasn’t going in.

I looked up, and the sail was torn and the rigging was a mess. I certainly didn’t hot dog it to the point of breaking, and as I looked it over, there really wasn’t anything I could do. I tried and tried to get us at least close to our launch point. Finally I just pushed it home. Instead of hitting our resort, I pointed the craft toward the closest resort and we made land. (and made our excursion). Yes, it was 3 resorts down, but dammit, we made it.

It’s not the best analogy, however the point is two fold: Even a broken ship can make land, and everything will be OK. Miles has had a heck of a start, but as we know, it’s not how you begin, it’s how you finish. And we are going to sail those uncharted waters, and touch all the sands, and see (and hear) all the wonders. We’ll keep you posted as things progress.

I hope you are all having a wonderful Monday, and you make the most of this beautiful day.

See you on the road!