Just popping in real quick here to let y’all know that I was featured on Five Minutes for Special Needs this weekend! Woohoo! Unfortunately, I was a little too wordy. Who me? Well, yes, apparently so. They had to edit me down a little, therefore, I have posted the entire interview here, for those of you who are interested. And here we have it…
Tell me a little about yourself and your family. You may include you name if you wish, and where you live (generically is fine). My name is Kristen, and I am David’s wife. I am mommy to Kate (7—almost 8!), William (6.5), Henry (4.5) and Ella (1.25) J. David and I “grew up” together…we’ve been together for over 20 years now, more than half our lives. I have always lived here in Virginia, and I love it. I am a SAHM, and right now, I am living my dream life. This is what I wanted. I just didn’t know it would be so challenging, and so very profoundly beautiful.
Tell me more about child/children’s disabilities. Did you know when they were born/adopted that they had disabilities. If not, how did you feel when you discovered it? Henry has severe sensorineural hearing loss bilaterally. He also has been diagnosed as having a neuropathic component to his hearing problems (Auditory Neuropathy, or AN). This, in a nutshell, means that there is something going on with his auditory nerve—it is scrambling the signals from the cochlea. So that theoretically, even if he didn’t have the sensorineural hearing loss, he wouldn’t be able to comprehend sound. We have found, however, that this neuropathic component has not played a major role, if any, in Henry’s hearing issues (other than confusing the heck out of us in the beginning!). But we are keeping an eye on it for the future.
We did not know about his hearing problems when he was born. Virginia has mandatory hearing screenings at birth. He passed. We had no idea there was a problem until his language failed to progress. When Henry didn’t appear to recognize his name at 18 months, I was concerned and began “testing” him with noises. I’d sneak up on him from behind and make a noise and see if he would hear it. Yes, he heard the noises, but in retrospect, I realize he should have been startled when pots were clanged together behind his head. But he would simply turn around and look at me like I was absurd. I’m sure he was wondering why I was banging on pots behind him. He was not even two years old at the time, but already recognized my absurdity. J
Even though he passed my very scientific pot-banging tests, I had the nagging feeling that something wasn’t right. The fact that he didn’t recognize his name really bothered me. And there was a lot of frustration in our home over the difficulty in communicating with each other. So I had him evaluated and they were seriously concerned about his language comprehension, or lack thereof. So concerned in fact, that it actually frightened me. No one had ever looked at my child and told me something was wrong with him. They didn’t feel that his hearing was a problem, but that we should get him tested to officially rule it out. So at their recommendation, I had his hearing tested and was sure he would pass. Until we got in that booth. And then I fell apart inside as I watched him ignore most of the tones that he was supposed to hear. How did I feel when I found out? In a word…Crushed. Or maybe…Trampled. Or…Alone. Then there was Angry. And Sad. And Hopeful. And Proud. And so began our journey…
You blog a lot about your children’s issues, and that is so valuable to me and I’m sure, to others that read your blog. How did you go about making the decision to blog about them? What do you personally get out of blogging about them and their issues?
My blog came about as a way to document my life, my journey as a mother. I tend to blog about things that happen in my daily life…pervasive thoughts in my mind. Of course, Henry’s disability tends to be front and center of a lot of what goes on around here, and what goes on in my mind. His problems consume me with worry and guilt, but also with pride in what he has accomplished, and hope for the future. Because I consider this blog to be my journal – a sort of memory book – it was an easy decision to blog about Henry. I am writing for me, so that I can remember all of the little things that would most likely be forgotten as the years pass. That said, I have gotten an enormous amount of enjoyment out of writing, and knowing that I could, in some small way, affect change in readers, their perspectives, or the way they go about life. And I like the comments. I like to know when someone finds me just terribly funny. Because I am just terribly funny, you know. And I like to know when something I’ve written has moved them.
What is a typical day like for you and your family?
If you had asked me before school started, the answer would look something like this: wake up, work, clean something/do laundry, break up a squabble, feed the kids, play with the kids, break up a squabble, feed the kids, break up a squabble, eat supper together, read books with the kids, snuggle, bedtime. J
Now things run a lot more smoothly. I wake up at 5:00am to work on accounting for an hour or two. After a shower, my husband and I get the kids off to school. Then Ella and I can run errands, and take walks, and play until noon, when we pick Henry up. Then Henry and I have some time to play while Ella naps. I find myself trying to sneak in little auditory verbal tasks while we play. He tends to catch on to that pretty quickly and lets me know he’s not interested. He’s a smarty, that boy.
Then of course the other kids get home from school, we have snack and the mad dash to activities…dance, soccer, baseball, religion class. Homework, Supper, baths, reading, snuggles, sleep. Mama tries to blog, and then crashes. J At this point, it is a relatively “normal” day, now that Henry has graduated from Auditory Verbal Therapy, and receives services at school through his IEP.
How have your child’s/children’s disabilities affected you as a person and as a mother?
What did you do right? What do you wish you had done differently?
As a person, I am much less quick to judge a child’s behavior (or a parent’s response to that behavior). I remember getting the look (y’all know the one…the look of disapproval…the “why doesn’t she do something about that boy” look) from other parents when Henry was little. He just didn’t understand my words…he didn’t hear them. And when he was diagnosed, still I’d get those looks, and I thought to myself that if only they knew what was going on, maybe they’d cut me (and him) a little slack. Maybe not, but maybe.
Henry is my second child that has gone through a significant struggle. My son William had a stroke when he was 15 months old, and required months and months of physical therapy. Both experiences strengthened me as a mother, and also as a person. You learn how to advocate for your child, and you learn that the experts are not always right.
Oh, and I’ve learned to take help from friends. I tried, boy did I try, to do it all myself. But I got to a point where I realized that I just couldn’t handle it all anymore. I needed people. That is a vulnerable feeling–to need help–but once I accepted it, I found that my true friends really did want to help.
As far as what I’ve done right…I think the jury is still out on that! I think we chose the correct type of therapy for Henry (Auditory Verbal). His language is age-appropriate now. I think I have tried to treat him exactly the same as the other children, which is sometimes good, but sometimes not. He has different skills, and different struggles. I do have the same expectations for what he can achieve, what he can be when he grows up. And I expect him to give his best, just like the others. But sometimes we have to go about getting to that place of success by a different route.
I wish I had followed my instincts that something was wrong with the language development a lot sooner.
And I could (still) have more patience.
And I could have embraced the path God was taking me down rather than questioning and being angry about the fact that I wasn’t travelling the path I had planned. Life is all about the journey. You want to get from point A to point B, but you’ve got to enjoy the experiences along the way. When Henry was first diagnosed, and I was overwhelmed with sadness and anger, I read “Welcome to Holland.” Boy did that bring me to my knees. I still read it now and then, because I think it is a good analogy. And because I want to remember how beautiful my life with Henry is. Because really, it is beautiful.
What do you want other parents fighting the same fight to know?
I would encourage you to follow your instincts. You know your child more than anyone else. A wonderful doctor once told me that *I* am the expert on Henry, and that I should have a little more confidence in myself and not be afraid that I’m doing the wrong thing. That was a valuable piece of information. Of course you want to seek out opinions from experts, but you must also learn to think of yourself as an important piece of the “expert puzzle.” Without you, the puzzle is incomplete.
Also, hang in there. You will find angels along the way that God seems to drop in your life at just the right moment. They come in many forms, whether it is a teacher, or a doctor, a friend or a child. I know I have been touched by these angels.
Is there anything else you would like to share?
I think we have to remember that those of us that have a child with a disability have been given a true gift. It is sometimes hard to see it that way, when your child is in pain, or is suffering in some way. It is difficult to look upon a struggle as a gift. But we will never take for granted a child’s first steps, or a child’s first word, or a smile, or the feeling of our baby’s breath on our necks. We will recognize that learning to read, or skip or ride a bicycle is a triumph. We will never forget that each new day with our children is a miracle.
And now you have the rest of the story!