There was no clear way to diagnose it and we had no idea it was even a consideration. But, as is often the case, it was discovered through a routine process of elimination and had nothing to do with the original symptoms.
See, it was the third ear infection in a row for my daughter. And even as I’m typing this, I’m exhausted by thinking about simply recounting the whole, three-month process that led to her diagnosis of Strep. The trips to the doctor; the first medication that didn’t work and having to go back to the doctor to get a different one; the one medication that required her not eating dairy (when putting medication in her cheese is one of the main ways we get it down her – yeah …that was interesting) …all of it …is just stuff we don’t talk about most of the time.
The truth is we don’t talk about a lot of stuff that has to do with our daughter, most of the time. Honestly, we’re just too tired to re-live it to anyone. It’s over. She’s well. We’re fine. Let’s have a glass of wine and talk about YOU. You don’t want to know the actual details of our day. Trust me …you don’t.
Anyone who has children knows how much time they consume, especially when they’re small. All parents understand the struggle of raising kids. But what if your two-year-old never turned three? What if they kept growing physically …but not mentally? How would that look when they turned twelve? Or nineteen? Or thirty?
At the moment mine is fifteen, and I can tell you exactly how it looks and exactly how it feels.
My daughter is as intelligent as anyone her age. But she can only express and react at about a two-year-old level.
See, even though going to the doctor is a drag for anyone, it’s still a routine thing for most kids. For my kid, it requires two people (who are on their game), a de-activated iPhone, hair that is easily managed, clothes that aren’t too fussy, no jewelry, no hats, a waiting room that isn’t too crowded, without too many distractions in it, and a wait time that is under 10 minutes and a doctor that is cool with getting slapped at and having his or her hair grabbed. It also helps if the nurse is nimble enough to get vitals while someone is biting at the instruments and trying to kick him or her. When it comes to doctor visits, my wife manages the “doctor stuff” and I manage my daughter.
Without both of us, a simple doctor visit is almost impossible. We cannot get up and leave our daughter unattended. We can’t fill out paper work without her grabbing for the pen and paper and trying to throw them. We can’t let her sit next to anyone because she will (not might …WILL) pull their hair or grab their clothes or yank their glasses off or throw their purse. We are constantly on guard to make sure our 5’4’’, 135 lb. daughter doesn’t find a baby she wants to play with. At her size now, she could literally kill the child by just trying to be nice to it.
On “normal” days, my wife and I start our day at 5:45 am. One of us gets our daughter up and changes her diaper (we alternate days). Then, we clean her and take her to the bathroom (this is not always as easy as it sounds). We get her on the couch and make breakfast. Then we feed it to her, with all the proper medications going in at just the right times. Then we brush her teeth and brush her hair for her, take her to the bathroom again and put all of her school clothes on her …for her …while she’s flailing her arms and grabbing our hair and beating our backs and sometimes trying to run away. Usually, by the time she’s dressed, we’re in a full sweat.
We walk her onto the special needs bus at 7 am, and hold her arms from hitting other kids and aids until she’s strapped in and settles down. Then, we send her off to school and pray that she learns to move one inch further ahead today than she did yesterday. And we hope she doesn’t hurt someone. And we are terrified that she will be hurt. There is no time during our day that we aren’t concerned for her safety and the safety of those around her.
The bus returns at 3 pm, where one of us gets her off the bus and walks her in the house for a bath and some down time before dinner (IF she’ll settle down). If one of us isn’t there to get her off the bus, they will take her back to the school and notify the authorities. She cannot survive alone.
Once off the bus, we will check her notes from school then check her body for any bruises, bumps or cuts (as she cannot tell us about such things). Then we take her back to the bathroom (again) and help her relieve herself (this can take a long time) then we put her into the tub. After her bath (which is a physical work out and can be very hazardous), she will quietly (and mercifully) play on her iPad for a while until dinner.
Her meals have to be given at the same time every day. And we feed her similar calorie counts. Since she cannot tell us if she’s hungry or not, we have to guess. And since a bout of any stomach issue could result in a week’s worth of drama, we make sure her diet is fairly bland and predictable.
While eating we always encourage her to use the fork or spoon. She can do it, unless she decides it would be funny to sling the food onto the floor. And according to her …that is always funny.
Once dinner (and cleanup) is over, she can watch TV or play on her iPad a little more before bed. That’s if she doesn’t decide to take off through the house opening drawers and throwing all the clothes out or yanking the sheets off of beds or ripping phone chargers out of our phones. Some nights I take her to the mall to walk for exercise. The terrain is even and it is well lit. These are all serious considerations when walking with my daughter. A pothole could break her leg because she can’t adjust to such things the way everyone else can. She doesn’t have the natural impulse to break her own fall. Watching her navigate stairs is terrifying. And her brother is still traumatized by seeing her fall down them, that one day.
30 minutes before bed, she gets another snack to make sure her blood sugar is balanced for the night. Medications are given, her teeth are brushed and I change her into an overnight diaper (I usually do it now, because she’s too heavy for my wife to manage this part of the routine). Then her special-made sleep onesie is put on. She’s placed in her custom built bed and given melatonin to help her get to sleep. If nothing out-of-the-ordinary happens (and that’s a BIG “if”), she will sleep until 5:45 the next morning. And we start the whole process over again. Anything that my wife and I are going to do; any work that needs to get done; any projects that are unfinished; any money that is going to be made; any connections with friends that are going to happen; any time spent with our son, will have to be done in the hours in between my daughter waking, getting home from school and going to bed.
If ONE step in this routine is off by an inch, an entire day could go up in smoke. Once, my wife and I tried to go out on a date. A care giver put the night diaper on just slightly wrong enough that when we came home, we spent the next three hours washing sheets and settling my daughter down enough to get her back to sleep, at 1 in the morning. We both agreed …the date wasn’t worth it. We haven’t been out together since. That was two years ago.
My routine and life isn’t bad. It’s not as difficult as some people’s …not by a long shot. But it is ABSOLUTELY mandatory. Either me or my wife MUST be there …every second …of every minute …of every day. Because we basically live a young woman’s life for her.
My daughter can go anywhere we want to go. But when we get there, one of us will be “on duty” for the entire duration of the visit. That means we will be right on her, watching and attending her every move. We will be restraining her arms from hitting and grabbing and pulling. We will be blocking things she wants to put in her mouth. We will be guarding fragile items, such as anything glass. My daughter’s greatest joy in life is to watch things break. It makes her laugh uncontrollably. So she’s always in the mood to break something. People don’t like their things being broken. So, honestly? We don’t take our daughter out as much as we would like and probably not as much as we should. Quite frankly …it’s just too much work.
Folks often say, “hey bring your kids! You guys can relax.” That’s such a nice thought. But one of my kids is a full time job. I love her with every fiber of my being and she’s one of the best people I’ve ever known. But as long as she is in the room …I cannot relax. And I never will.
I think the world is full of good hearted people who want to help. So many times we are offered …well …something. People don’t know what to do or how to help. But they want to. And it’s always touching to us when they do. But the truth is there’s not much anyone can do. It would take weeks to train someone in how to manage ONE DAY with my daughter. And we’re both so exhausted, the thought of doing that makes us more exhausted. We also know that when they see what they’re going to have to actually DO? Well, some things are simply too much to ask of anyone. So, we smile and say “thank you” and know that we will be out of mind as soon as we are out of sight. And that’s actually ok.
The life we live isn’t the kind of life anyone wants to live. Everyone likes to pretend that nobody has to live this way. When we see those beleaguered parents in the grocery store, you know the ones …with their 30-something-year-old son, who is flapping his arms and giggling like a toddler, we whisper our prayers and walk away, relieved we don’t have to get too involved. I totally get that. I’m that way, myself. I like to run free. And people like my daughter are heavy weights strapped to your feet. No matter how strong you are, you’re just going to be slower than everyone else.
I probably have friends who get miffed at me because I can’t just run out and grab a beer whenever they call, like I used to. My live shows and travel plans have to be meticulously designed and curated so that I’m not gone from home too long. Because handling one regular day in my house, alone, is almost impossible. If something unexpected happens …it’s totally impossible.
“So, what do you want from me?” is probably your next, obvious question. Truthfully, nothing. My family, and in fact, MOST special needs families, don’t want anything from anyone. What we could use is some mercy from time to time. If I don’t get back to you as soon as you would’ve liked, I always hope you’ll understand. Everything else in the world (including ME) is way down on my priority list.
If my wife calls you on the phone and breaks down in tears a little too quickly for your taste, just go with it and let her rant. She needs to do it.
And maybe hesitate when you are about to drop some life-changing advice on us as to how to manage a situation you know nothing about. I’ll guarantee you there are issues with whatever you have read online, that we’ve already explored and ruled out for 5 or 6 different reasons. The only thing more frustrating to special needs families than the friends who have simply decided this isn’t happening and they can’t engage on your terms anymore, is the people who show up once every six months and try to help fix it for you. It’s well meaning, to be sure. But the deal is this …
The real issue with raising someone with special needs is, it is EVERY. DAY. There are no days off when you’re caring for someone who cannot care for themselves. Zero. And while everyone else can go back to a semi-normal house and re-charge after dealing with a special child, care giving parents cannot.
I guess all I’m trying to say is this: if you have someone in your life who has a child with a disability, grant them some grace. Their yard might not look like you want it to. Grant grace. They might have a short temper sometimes. Grant grace. They might be disheveled and not quite with you in the meeting. Grant grace. They may have forgotten a birthday or a school play or a scout activity. Grant grace.
And maybe instead of your church or school raising sixty thousand dollars to send some kids to Guatemala, to build a youth center (which is a great thing to do), think about that family with that special kid no one knows quite how to be around, and send them on a date night. Or invite their siblings to the movies. And if their siblings are a little weird to you or on edge or a bit awkward …well …try to understand that they live in a very different world and have a daily front row seat for a very difficult side of humanity.
And if you find yourself reading a blog that is too personal, too self-conscious, too self-indulgent and too long …maybe let the blogger off the hook just this once.
PS – And DON’T PARK IN THE HANDICAPPED SPACE IF YOU’RE NOT HANDICAPPED!