When I speak in conversations about my medically complex kid the listener's eye automatically drifts to the little girl in a ponytail and wheelchair at my side and nods knowingly.
What they fail to identify is the young boy running around and hanging upside down.
Sure, I'll give Cary Lynn her due. She's not easy. But even with her rarer diagnosis of Diabetes Inspidus and Dysautonomia, we are still able to treat her and keep her comfortable most days. I have meds from here to Timbucktoo that we give her, but they work.
Last week I took my son to our Developmental Ped. I adore her. She's thorough, spends hours with you, and really hears what you have to say. This was Marvin's first visit to her but because he's seen her in action with CL he was good to go.
She spent three hours with us. In that three hours she uncovered a few more issues that we will see more Dr.s about. Sigh...... But when you are trying to put the pieces of a unique puzzle together you do what it takes.
The one thing she was concerned about was Marvin's migraines. He's had really bad ones on a regular basis. Her words were, "I know you said you really aren't wanting more medication, but I have one that is tolerated very well. I think you may want to think about trying it to see if we can help him feel better."
Ahhhh, my Achilles' heel! When we have our children all we want to do is protect them. Watching them hurt or suffer makes a mom feel helpless and miserable. Bottom line we just don't want our kids to hurt and will move mountains to make it stop.
"I don't know", I murmured, "he just doesn't do well with medication. We've had so many side effects." But I was wavering. I wanted something, just this once, to work. Marvin was already starting to rub his head, a telltale sign.
"Tell you what, you can half the dose!" With those words, fate was sealed and I took the prescription home. Half a dose may work OK. I won't know unless we try, right?
Wrong!! Marvin took the dose before bed as directed. The next morning I waited for him to get up at his normal time. No sound. I sat down in a weirdly quiet kitchen and sipped my tea trying to ignore the tendrils of fear that were starting to rise in my head. I sat down at the table stubbornly. I scolded myself. Why can't I stop worrying?! This is ridiculous! You are a grown woman, behave!!!
That lasted about 5 minutes. I decided just to peek in and see what was going on. When I came in the dog started making her "Timmy is in the well noises". When she makes that sound I pay attention. I came over to the bed. Marvin was pale and glassy. "I don't feel good mama. My chest hurts." With an elevated pulse I started making calls fast. Shannon came in and sat with Marvin. My world was shaken once again.
Shannon took Marvin to the Drs right away. I got Cary Lynn's supplies and followed behind. I remember making a call to my mother-in-law and a friend, but don't remember much else. Except crying.
We were lucky. Not that this is a huge shock, but Marvin is allergic to this medication as well. It caused a rare side effect. His heart was skipping beats. So he's not able to take this or any medication that falls in this class. After a quiet weekend and lots of resting, legos, and good books most of the med seems to be out of his system and he's back to his normal self.
I don't think I am though. It seems like I eternally hope for a magic bullet. Something that can help him feel better, reduce pain, and bring world peace. Not too much to ask for, right? But after this go around I realized that I may need to start thinking a little more outside the box.
There is no magic bullet. Marvin is unique. His therapists describe him as a unique exception to the rules of his disabilities. His Drs describe him as unique. While I'm always good with marching to our own rhythms, just once it would be great if he were an average joe in one department. But since Marvin isn't going to change, I'm the one who has to. I'm going to have to step out of the bounds and find different ways to work with what is going on. To find a unique way to handle the unique situation we are in.
What I do know is that Marvin is resilient. His ability to bounce back from the situations life throws at him make him a tough cookie. We will figure this one out and together we will move that mountain.
My Family
Monday, June 26, 2017
Sunday, June 11, 2017
Shades of Grey
The human brain has 100 billion neurons, each neuron connected to 10 thousand other neurons. Sitting on your shoulders is the most complicated object in the known universe.- Michio Kaku
Tell me about it...... The brain is complex. Add to it one child who on the surface look deceptively "normal" and you have a recipe for disaster.
"He doesn't have ADHD, all boys act that way"
"He can't have Autism, he's social"
"He doesn't have food allergies, let him eat whatever"
"He'll just outgrow that."
"He doesn't have mental illness."
On and on the advice went and still goes. For children with hidden disabilities life can be more challenging than a child with an obvious one. Services are openly showered on my daughter but it is like prying a crocodile's mouth open with food in it to get help for my son.
It started young. I had lots of worries. I would watch him like a hawk. Something wasn't right. I was assured that he didn't have ADHD. That another child in the class did but not him. By a teacher misdiagnosing my child valuable time was wasted in getting services. That's what happened year after year, time after time. Concerns were brushed aside.
But I persisted and I insisted. Guess what, people were wrong. As time passed testing was done. Now that my son is 10 he finally has the services and team in place that he so desperately needed back when he came home at 18 months old. They say it's never too late, but in some ways it is. And if it's not late it's going to be harder to correct things.
It's also hard to know where he fits in. He "passes" in so many things. He is able to blend in. When we go places most praise him for being a good big brother. He plays with the other kids in a game.
But over the years he's learned how to play the game called life. He puts on a good show. The outside world doesn't see what happens. They don't see the child who melts down after spending a day at a family reunion because he's so overwhelmed. The teachers don't see him come home from school and look at his spelling notebook and watch him cry because he doesn't understand the instructions (to be fair dad and I didn't get what they wanted him to do either. When I was growing up we brought home a list and studied it. You know, when dinosaurs roamed the earth.... Now we had to choose from A la Cart activities?!?!). Or how we've had to teach him to look at labels in all the foods he picks up so he can avoid making himself sick.
I could keep going, but it makes me mad and a bit sad too. I've long ago come to the conclusion that it's really hard to budge people who aren't willing to look outside the box. Who are trapped in their notions. You can't break through glass with a feather.
But it's worth the fight. I'm thankful for Children's Home Society. They were the first people to step in and really hear what I had to say. The ball started rolling. I'm thankful to the sharp GI doctor in Norfolk who was looking over my daughter and saw my son double over in pain. The visit that was supposed to be about her weight rapidly shifted to a little boy who stood with tears in his eye and a Dr. who told me, this isn't normal. For the UVA team who spent days testing him and came back with answers. For his psychologist who is on speed dial on my phone. Who helps me understand how to parent a child who has lived through trauma and who gives our family hope. For his ABA team. We have the cool Mr. Gabe who comes and plays with him and slips in activities that force him to think about things a different way. So we keep on fighting, hoping that we can make it better for other parents who come after us.
I'm mostly thankful for my son. Without him I probably would have gone through life being one of those people who think inside their happy box. He takes everything I thought I knew about parenting and shakes it and turns it upside down. Then he burps. Because there are some things that fall within the realm of normal boyhood. I don't quite know what the future holds, but I'm happy I get to be along for the journey.
Tell me about it...... The brain is complex. Add to it one child who on the surface look deceptively "normal" and you have a recipe for disaster.
"He doesn't have ADHD, all boys act that way"
"He can't have Autism, he's social"
"He doesn't have food allergies, let him eat whatever"
"He'll just outgrow that."
"He doesn't have mental illness."
On and on the advice went and still goes. For children with hidden disabilities life can be more challenging than a child with an obvious one. Services are openly showered on my daughter but it is like prying a crocodile's mouth open with food in it to get help for my son.
It started young. I had lots of worries. I would watch him like a hawk. Something wasn't right. I was assured that he didn't have ADHD. That another child in the class did but not him. By a teacher misdiagnosing my child valuable time was wasted in getting services. That's what happened year after year, time after time. Concerns were brushed aside.
But I persisted and I insisted. Guess what, people were wrong. As time passed testing was done. Now that my son is 10 he finally has the services and team in place that he so desperately needed back when he came home at 18 months old. They say it's never too late, but in some ways it is. And if it's not late it's going to be harder to correct things.
It's also hard to know where he fits in. He "passes" in so many things. He is able to blend in. When we go places most praise him for being a good big brother. He plays with the other kids in a game.
But over the years he's learned how to play the game called life. He puts on a good show. The outside world doesn't see what happens. They don't see the child who melts down after spending a day at a family reunion because he's so overwhelmed. The teachers don't see him come home from school and look at his spelling notebook and watch him cry because he doesn't understand the instructions (to be fair dad and I didn't get what they wanted him to do either. When I was growing up we brought home a list and studied it. You know, when dinosaurs roamed the earth.... Now we had to choose from A la Cart activities?!?!). Or how we've had to teach him to look at labels in all the foods he picks up so he can avoid making himself sick.
I could keep going, but it makes me mad and a bit sad too. I've long ago come to the conclusion that it's really hard to budge people who aren't willing to look outside the box. Who are trapped in their notions. You can't break through glass with a feather.
But it's worth the fight. I'm thankful for Children's Home Society. They were the first people to step in and really hear what I had to say. The ball started rolling. I'm thankful to the sharp GI doctor in Norfolk who was looking over my daughter and saw my son double over in pain. The visit that was supposed to be about her weight rapidly shifted to a little boy who stood with tears in his eye and a Dr. who told me, this isn't normal. For the UVA team who spent days testing him and came back with answers. For his psychologist who is on speed dial on my phone. Who helps me understand how to parent a child who has lived through trauma and who gives our family hope. For his ABA team. We have the cool Mr. Gabe who comes and plays with him and slips in activities that force him to think about things a different way. So we keep on fighting, hoping that we can make it better for other parents who come after us.
I'm mostly thankful for my son. Without him I probably would have gone through life being one of those people who think inside their happy box. He takes everything I thought I knew about parenting and shakes it and turns it upside down. Then he burps. Because there are some things that fall within the realm of normal boyhood. I don't quite know what the future holds, but I'm happy I get to be along for the journey.
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