“In the race of life, you need self confidence, courage and faith in your abilities to win the race.”
― Lailah Gifty Akita, Think Great: Be Great
We need all of the above plus a dash of humor to get through seasons when times are tough.
Our family has been busy with our own race. The kids are each sprinting through at their own pace and moving towards an uncertain finish line.
Cary Lynn has had a bunch of hurdles, rocks, and bumps thrown on her race way. Her race has been harder, but you can't keep this girl down. We had been noticing some concerning symptoms and since she has a shunt we needed to get it checked out. Her old neurosurgeon is back and we were excited to get in quickly with him.
He pulled up pictures of her from when she came to the hospital until now. While the good news is her shunt seems to be working and doing it's job, the bad news is that her brain isn't. When you are born with significant challenges and have need of intensive intervention to live you are going to see damage. Cary Lynn's brain has had time to adjust to the trauma that it went through and due to it's severity, some of her brain has died off and disappeared. So where there used to be brain, fluid has taken it's spot, because you need something there. Also her gyri and sulci (brain folds) have taken a beating as well. They used to be bumpier and are now smoothing out.
What this means, well it means she has brain damage. It can also impact her life, functions, and longevity. Along with a new diagnosis of mitochondrial defect, it really threw me for a loop. I know things can be hard for her, but why do they have to be this hard??? It's frustrating for me because I just don't think she needs one more thing thrown at her.
For Cary Lynn it's another day at the ranch. The kid doesn't let anyone or anything define her. She's continuing to rock her at home therapy program, demand books about birds, and annoy her brother by kicking him and screeching at him every time he venture near her turf. For a mom who has long ago decided that normal is a setting on the dryer, these moments of regular family life are desperately appreciated.
Marvin's race seems to have hit a smoother path and my runner is taking life in stride. He's started school again. We were all really hesitant, but Marvin is thriving. The school has gone above and beyond my expectations. They listened to his diagnosis, have adapted to his needs, and are helping him become more independent. This is the first school that he's been at that I don't worry about him during the day. His team has noticed a marked difference as well. My only regret is that we didn't find this school last year.
Marvin is having genetic testing done as well. With a diagnosis of Autism you can have some other problems, like Fragile X syndrome. His Dr. wants to rule out some things. Marvin was hoping it would get him out of chores, but no such luck on that, HA! He insists if he has it he will be an X-Man and really, there isn't any arguing with him so I just say whatever and move on.
We'll keep on running. My kids run their races like a boss and it's all I can do to keep up. With their strength and independence they are going to give it all they've got and cross the finish line champions.
My Family
Sunday, December 17, 2017
Sunday, November 12, 2017
National Adoption Month
I rarely regret my action but I often regret my inaction ― Avina Celeste
How often do we regret being inactive. To be silent may be the easier road but it's not often the right one. Today is Orphan Sunday and National Adoption Month. Every year I take time to reflect on our family and how adoption impacted us.
Adoption has changed us. It's changed the way we see the world. It's brought us challenges, hardship, and heartaches. It's also brought more joy than I can fathom.
Adopt, change a life one child at a time.
How often do we regret being inactive. To be silent may be the easier road but it's not often the right one. Today is Orphan Sunday and National Adoption Month. Every year I take time to reflect on our family and how adoption impacted us.
Adoption has changed us. It's changed the way we see the world. It's brought us challenges, hardship, and heartaches. It's also brought more joy than I can fathom.
These kids have rocked my world. I could go on and on. But at the end of the day, they are lucky. They won't have to worry about where there next meal comes from, where they will sleep tonight, if they will get medical care, and who loves them.
Today in Virginia there are 1,400 children who don't know these things. Our state is ranked the worst in the country for the adoption of older children (yay us!). This year 500 teens will age out without being adopted. One in four will have involvement in the justice system. One in five will be homeless. Nearly 1/2 will drop out of school.
These children feel alone, abandoned, and scared. Family means everything. It is our past, present and future rolled into one. Without having a safe place to fall the future is pretty grim for these kids.
There is a pretty powerful video put out by The Children's Home Society. You can watch it here. Listen to what these kids have to say. Listen as a kid sits huddled and says that her dad's punches hurt, but his words hurt more. Listen as the story says that for children who are abused, neglected, and abandoned a safe, loving family is just a dream.
These kids aren't someone else's responsibility. They are OUR responsibility. We can't just hope that someone else will step up to the plate.
I want you to take a good look at these kids. They are at this time some of the many children waiting. Waiting for a mama who will bake cookies with them, to read to them, to be there for them. For a daddy who will walk them down the aisle, listen to their day, toss a ball around. They don't want a perfect parent, they just want A parent.
It's not an easy road, but I can say that it's a journey that you won't regret.
If you want to learn more about Virginia's waiting children and how you can change a life by adoption contact Children's Home Society. Click here to find out more.
Adopt, change a life one child at a time.
Saturday, September 9, 2017
I didn't think about your daughter
In our house you will find that we are a blend of options in discovering what works best for our kids. You will see things you are used to seeing like medications, equipment, that sort of stuff. Along side of that you will also see some non-traditional things as well. Essential oils, my giant textbooks of herbal medicines, and maybe some familiar equipment used in different ways.
You see, I've had to stretch and grow to figure out what works for my kids. We don't all come out of the same cereal box and things that work for others don't always work for us. Things aren't always black and white. They are often various shades of grey.
Recently my son was accepted into a unique study. A worldwide research project is being conducted to see if a unique treatment can be beneficial for kids like Marvin. It would help with some of his dietary woes and we were excited to try it. The practitioner had recently relocated and gave me her new address. When we arrived this is what we saw.
You see, I've had to stretch and grow to figure out what works for my kids. We don't all come out of the same cereal box and things that work for others don't always work for us. Things aren't always black and white. They are often various shades of grey.
Recently my son was accepted into a unique study. A worldwide research project is being conducted to see if a unique treatment can be beneficial for kids like Marvin. It would help with some of his dietary woes and we were excited to try it. The practitioner had recently relocated and gave me her new address. When we arrived this is what we saw.
I drove around the building thinking this was a joke. There wasn't a handicapped accessible spot anywhere. So I called the provider and let them know we were here and the building had NO ACCESS!
They came down and their first words were, "I wasn't thinking about your daughter." Their last location was accessible and we were able to get Cary Lynn up and down. Despite the fact that we had seen this person in their previous location numerous times and my daughter was with me every time for some reason it escaped this person's attention that my child was in a wheelchair.
The next words weren't much better, that this was a pro bono treatment. Maybe I could find someone who needed community service hours to help with one kid. They didn't want to treat in their home because that was their me time. I was rather steamed and wanted to offer a shovel while they were burying themselves.
Look, I feel like we need to have a conversation here. You may not think about my daughter or the 2.2 million people in wheelchairs or the 6.5 million people who use walkers, canes, or crutches to get around but maybe you should.
I'm not saying that every home needs to rush out and become accessible but I would like you to think about how it feels not to be included. How hard it is on our family and others like us because our kids can't go places. You may not be able to fix your home but how about finding a place that everyone can go to.
If you are practicing medicine or holistic treatments think of the large population you are limiting. The people who would probably benefit the most from your treatments have no access to you. Clients that would pay you for your services if they could reach you will take their dollars and go someplace else.
Bottom line, it's not OK and no amount of apologizing is going to fix that piece of my heart that just got a little more battered. It's not OK to justify the lack of accessibility by saying that this is a pro-bono service. Free does not mean that you can get away with whatever you want. That would be the equivalent of me saying I could rob your home and take your valuables because I am giving you free babysitting. It's a ludicrous argument.
We drove for a while in silence. Marvin piped up, "Mama are you upset?" I told him I was, but I would try to think about our options. "Well, I don't really need to do this. I'd rather go someplace that is nice to my sister. Maybe we can find something more fun to do, like legos!"
The study would have been awesome, but you know what? My kid already is awesome. Both of them are. If people can't see that then they are the ones with the real handicap.
Sunday, September 3, 2017
Mountain Highs and Valley Lows
There is no black-and-white situation. It's all part of life. Highs, lows, middles. -Van Morrison
That is the truth. When you parent special needs kids you ride that high/low wave. This past month has been full of mountain highs and valley lows for us. While I was in church I spent a lot of time thinking about the past month. The good, the bad, and the downright frustrating.
We've been dealing with our school system. It hasn't been good. LCPS is supposed to provide some very basic services to my daughter. I'm talking about bare bones here. They basically need to check in once a week and see if she's still breathing. Not too challenging in my book. School has been going for a month and right now we have yet to have any services provided. We had someone lined up but at the last minute this paragon of virtue decided not to do their job. I've emailed our school board representative but they also chose to ignore me. It's sad that she has to go without minimal services. But out here it's really not unusual. Which makes it even more sad.
Marvin has an MRI this week. I'm used to Cary Lynn having them but for Marvin this was something new. UVA wants to check out some "suspicious" items. They have tried to get his early MRIs he had beforehand, but so far when Marvin became our son his previous records disappeared. What if they find something? He already has so much going on I really don't think he needs more. He also developed Osgood Schlatters disease. You can read about it here, but basically it's glorified growing pains. Fun fun fun.
The insurance has changed here as well. We've all been moved to something called CCC+. It's basically an MCO. I've spent hours on the phone trying to figure out what Drs. are covered. We also just got a call from Marvin's psychologist's office about insurance. There is this really big myth that insurance covers it all. It doesn't. We pay out of pocket for a lot of stuff. Therapies, medical supplies, some Drs., and extras. Those things aren't cheap. As I'm writing this I've found out my daughter's food supply may be in danger. If insurance decides to stop covering it that's $3,000 we will have to cough up to make sure she eats. Little things add up.
My husband works really hard. I used to work. I now am a full time medical manager. I miss working. Not just for the income, but because I miss adult conversation. I don't always find fulfillment in Legos, Minecraft, Peg and Cat, and discussing the importance of proper hygiene. Go figure. Or just a break. My family is coming in a couple of weeks and I'm so grateful. They will provide much needed respite but Colorado is a long ways a way to get the support that we need.
Despite the valleys, our mountain views have been really good. Cary Lynn has managed to gain about 20 pounds in a year. We now don't have to see the dietician as often, yay!! She has had a good stretch of being healthy. For that we are thankful. She also is getting home educated (because I can't trust the school system to do their job). and is a feisty, sassy, and lippy kindergartener. I tell her she's my most difficult pupil and she spits at me. So we are off with a bang.
We tried school for a little bit with Marvin last year. After talking with his team, the increase in his appointments, and the need for very tailored learning accommodations he's back at home. He's doing really well and keeps saying he is glad to be back at home. Not every kid is going to do well in a school situation. We've accepted that Marvin is unique and that this is the way he learns best for this season. Now he's a confident fifth grader and able to advocate for his learning needs. Plus he delights in showing his younger sister how school "is supposed to happen".
All in all we are marching forward. We may get knocked down but we always get back up again. I'm proud of us all. I'm also thankful for the blessings we have. The kids are healthy, they are learning. Despite repeated hygiene conversations, I'm pretty happy too. We will get through the valleys because my kids deserve more time in the mountains. Here's to hoping we spend more time on the mountains this month.
That is the truth. When you parent special needs kids you ride that high/low wave. This past month has been full of mountain highs and valley lows for us. While I was in church I spent a lot of time thinking about the past month. The good, the bad, and the downright frustrating.
We've been dealing with our school system. It hasn't been good. LCPS is supposed to provide some very basic services to my daughter. I'm talking about bare bones here. They basically need to check in once a week and see if she's still breathing. Not too challenging in my book. School has been going for a month and right now we have yet to have any services provided. We had someone lined up but at the last minute this paragon of virtue decided not to do their job. I've emailed our school board representative but they also chose to ignore me. It's sad that she has to go without minimal services. But out here it's really not unusual. Which makes it even more sad.
Marvin has an MRI this week. I'm used to Cary Lynn having them but for Marvin this was something new. UVA wants to check out some "suspicious" items. They have tried to get his early MRIs he had beforehand, but so far when Marvin became our son his previous records disappeared. What if they find something? He already has so much going on I really don't think he needs more. He also developed Osgood Schlatters disease. You can read about it here, but basically it's glorified growing pains. Fun fun fun.
The insurance has changed here as well. We've all been moved to something called CCC+. It's basically an MCO. I've spent hours on the phone trying to figure out what Drs. are covered. We also just got a call from Marvin's psychologist's office about insurance. There is this really big myth that insurance covers it all. It doesn't. We pay out of pocket for a lot of stuff. Therapies, medical supplies, some Drs., and extras. Those things aren't cheap. As I'm writing this I've found out my daughter's food supply may be in danger. If insurance decides to stop covering it that's $3,000 we will have to cough up to make sure she eats. Little things add up.
My husband works really hard. I used to work. I now am a full time medical manager. I miss working. Not just for the income, but because I miss adult conversation. I don't always find fulfillment in Legos, Minecraft, Peg and Cat, and discussing the importance of proper hygiene. Go figure. Or just a break. My family is coming in a couple of weeks and I'm so grateful. They will provide much needed respite but Colorado is a long ways a way to get the support that we need.
Despite the valleys, our mountain views have been really good. Cary Lynn has managed to gain about 20 pounds in a year. We now don't have to see the dietician as often, yay!! She has had a good stretch of being healthy. For that we are thankful. She also is getting home educated (because I can't trust the school system to do their job). and is a feisty, sassy, and lippy kindergartener. I tell her she's my most difficult pupil and she spits at me. So we are off with a bang.
We tried school for a little bit with Marvin last year. After talking with his team, the increase in his appointments, and the need for very tailored learning accommodations he's back at home. He's doing really well and keeps saying he is glad to be back at home. Not every kid is going to do well in a school situation. We've accepted that Marvin is unique and that this is the way he learns best for this season. Now he's a confident fifth grader and able to advocate for his learning needs. Plus he delights in showing his younger sister how school "is supposed to happen".
All in all we are marching forward. We may get knocked down but we always get back up again. I'm proud of us all. I'm also thankful for the blessings we have. The kids are healthy, they are learning. Despite repeated hygiene conversations, I'm pretty happy too. We will get through the valleys because my kids deserve more time in the mountains. Here's to hoping we spend more time on the mountains this month.
Sunday, August 27, 2017
Freedom
I watched them go away to this place everyday.
They be forced to sit all day with bodies that didn't obey.
They just couldn't follow the rules.
So they never fit in at the schools.
In meetings, IEPS, and emails I'd spend my days.
Fighting for accommodations in a system set in it's ways.
Their words were cold, and left me with chills.
"Why don't you just get some prescription pills?"
I watched their happiness slip away.
Full of anxiety, not wanting to play.
Daily watching sad looks became haunting to me.
My kids didn't want to be different; they wanted to be free.
Free to stim and free to learn.
Free to ignite curiosity that burns.
To be who they are accepted and loved.
Precious treasures, gifts from above.
To be able to learn at their own pace.
Education is a lifestyle, not a race.
To embrace uniqueness and set their minds free.
To explore, learn, and play the way it should be.
We are done with tradition and keeping up with the best.
My kids aren't made to be still and test, test, test.
I know you may look and feel sorry for me.
But don't, I've done the right thing, I've set my kids free.
Sunday, July 9, 2017
I'm Good Enough (and so are you)
Never judge someone without knowing the whole story. You may think you understand, but you don't.
I saw her in Walmart a few weeks ago. You know who I'm talking about. The woman who brings in her three half naked kids jumping from the shopping cart and running around. The youngest is up front drinking soda from a baby bottle.
I roll my eyes. I think my mental thoughts and buy my organic fruit. As I'm walking by other women start whispering and pointing at her. A few snide comments are said and titters follow. The woman walks by. I KNOW she's heard. She tries to keep her head up but I see it. Tears.
A few aisles later I run over her son. Literally. Because I pay attention (insert eye roll). He's O.K. He had opened a box of cereal and was happily eating it. My son and I happen to have an affinity for that magical leprechaun and his marshmallows as well. I apologize to mom for trying to take her child out. I smile and tell her that we are addicted to that cereal as well. We talk. She's a single mom working three jobs. She's trying to buy food at the only time she has available. Her kids are tired, she's tired, and all she wants to do is be at home in bed with her laptop (did I mention she's going to school so she can provide a better life for her kids?).
I'm not telling this story to show what a paragon of humanity I am. Believe me, I'm not. Recently there have been a wild fire of stories passed around social media. Stories that make you stay awake at night and think over all your life and parenting choices.
When did it become OK? When did finger pointing become OK? It's been around, that's for sure. Spank them, don't spank them. Send them to time out, no wait, don't do that! Did you try an organic supplemental diet? How about making sure they get this? Use sunscreen, no wait don't use THAT sunscreen! Use TV, nope don't use TV. Computers help them learn, NO TECHNOLOGY IS OF SATAN!!!
Do you have a headache yet? Are you questioning every choice you've ever made? Are you going back and questioning every choice your parents made, because after all, it's probably their fault and there are about 40 articles that prove it. I mean, if it's on the internet it's probably true, right?
STOP!!!!! BREATHE!!!! Listen to me.
Yes you can spend your life feeling like crap. You can go to bed at night and worry that you are screwing up your kids. There are plenty of articles that will tell you that one. I can list at least half a dozen on how my kids are going to be awful. I don't spend enough quality time with them. We don't go outside enough. I let my son watch TV. I let my daughter have her IPad. We ate marshmallow cereal for dinner last week. My daughter loves sweet tea and right now it's the ONLY oral liquid she will take. So guess what she's been buzzing on? So as you can tell my kids are on the way to a life of hard crime and cavities because of the lifestyle we lead.
I used to feel bad. But now I feel something else. Angry. Because it's not OK. It's not OK to sit on your high hat. I wish the writers would spend less time on those pieces of trash and more time looking at ways they can help out these "fallen women" (I'm open to laundry service and hot meals). At the end of the day I'm doing the very best I can. Am I going to fall short, yes? Am I going to mess up? Yes. Am I going to push through and keep trying? Yes.
Guess what else? You are doing the best you can to. You are a good parent. You don't need parent shaming articles to make you feel bad. You are human and you are trying hard. The people who are closest to you can see that. And sometimes when the world isn't running over your kid in Walmart they can see it too.
What we need is less on what we are doing wrong and more on grace. Give yourself grace. You have a tough job. There is no book, TV show, article, psychic, or expert that knows those tiny people better than you. Remember that and give yourself the grace you deserve. Rest refuel, and get back up in the saddle and try again. You are a good parent. You can do this. I believe in you.
I saw her in Walmart a few weeks ago. You know who I'm talking about. The woman who brings in her three half naked kids jumping from the shopping cart and running around. The youngest is up front drinking soda from a baby bottle.
I roll my eyes. I think my mental thoughts and buy my organic fruit. As I'm walking by other women start whispering and pointing at her. A few snide comments are said and titters follow. The woman walks by. I KNOW she's heard. She tries to keep her head up but I see it. Tears.
A few aisles later I run over her son. Literally. Because I pay attention (insert eye roll). He's O.K. He had opened a box of cereal and was happily eating it. My son and I happen to have an affinity for that magical leprechaun and his marshmallows as well. I apologize to mom for trying to take her child out. I smile and tell her that we are addicted to that cereal as well. We talk. She's a single mom working three jobs. She's trying to buy food at the only time she has available. Her kids are tired, she's tired, and all she wants to do is be at home in bed with her laptop (did I mention she's going to school so she can provide a better life for her kids?).
I'm not telling this story to show what a paragon of humanity I am. Believe me, I'm not. Recently there have been a wild fire of stories passed around social media. Stories that make you stay awake at night and think over all your life and parenting choices.
When did it become OK? When did finger pointing become OK? It's been around, that's for sure. Spank them, don't spank them. Send them to time out, no wait, don't do that! Did you try an organic supplemental diet? How about making sure they get this? Use sunscreen, no wait don't use THAT sunscreen! Use TV, nope don't use TV. Computers help them learn, NO TECHNOLOGY IS OF SATAN!!!
Do you have a headache yet? Are you questioning every choice you've ever made? Are you going back and questioning every choice your parents made, because after all, it's probably their fault and there are about 40 articles that prove it. I mean, if it's on the internet it's probably true, right?
STOP!!!!! BREATHE!!!! Listen to me.
Yes you can spend your life feeling like crap. You can go to bed at night and worry that you are screwing up your kids. There are plenty of articles that will tell you that one. I can list at least half a dozen on how my kids are going to be awful. I don't spend enough quality time with them. We don't go outside enough. I let my son watch TV. I let my daughter have her IPad. We ate marshmallow cereal for dinner last week. My daughter loves sweet tea and right now it's the ONLY oral liquid she will take. So guess what she's been buzzing on? So as you can tell my kids are on the way to a life of hard crime and cavities because of the lifestyle we lead.
I used to feel bad. But now I feel something else. Angry. Because it's not OK. It's not OK to sit on your high hat. I wish the writers would spend less time on those pieces of trash and more time looking at ways they can help out these "fallen women" (I'm open to laundry service and hot meals). At the end of the day I'm doing the very best I can. Am I going to fall short, yes? Am I going to mess up? Yes. Am I going to push through and keep trying? Yes.
Guess what else? You are doing the best you can to. You are a good parent. You don't need parent shaming articles to make you feel bad. You are human and you are trying hard. The people who are closest to you can see that. And sometimes when the world isn't running over your kid in Walmart they can see it too.
What we need is less on what we are doing wrong and more on grace. Give yourself grace. You have a tough job. There is no book, TV show, article, psychic, or expert that knows those tiny people better than you. Remember that and give yourself the grace you deserve. Rest refuel, and get back up in the saddle and try again. You are a good parent. You can do this. I believe in you.
Monday, June 26, 2017
No Magic Bullet
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.
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.
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.
Wednesday, May 17, 2017
Becoming Barbra
It happened again the other day. We were out shopping and Cary Lynn was getting some extra attention.
"Oh aren't you just a doll baby? Wook at how sweets you is." Meanwhile, the "doll baby" was rolling her eyes. When asked how old she was I said 5. I was then told about how God sends precious angels to us all. When I jokingly quipped that the "precious angel" just bit her brother ten minutes ago I was quickly reassured that Cary Lynn didn't have the sense to come in out of the rain.
I left at that point.
It's hard sometimes. When the world is presented with children who have multiple disabilities assumptions are made. Over and over. Most of them fall into what kids can't do. Or won't ever do. The bar is set so low I feel like I'm in a round of limbo.
One of the hardest things has been establishing that Cary Lynn is her own person. That she has her own thoughts, dreams, and way of seeing the world around her.
When we brought her into our home at nine months old many applauded our decision. We were taking this poor disabled child home with us. Cue the sainthood music!!
I'm going to tell you a little secret. We didn't pick Cary Lynn. She picked us. At day four of our first of many hospital stays when my world was unravelling bit by bit with every scary new doctor proclamation my child bit her first of many medical professionals. After the Dr. left I looked at her and said, "You are my kind of people. I think you'll fit in well with us. Let's get you well and then you can come home to your family." This kid had the nerve to look like she was pondering this!!! I mean hello, I'm not that bad of a human right? So I tried again, "C'mon, it's not like this is a Paris vacation. You have a family that wants you so badly. A mama, daddy, and brother. And a room full of new toys!" Well the word toys sealed the deal and I felt like this little human is going to challenge every last thing that I said and did henceforth and forever more.
And she has. I am constantly kept on my toes with a child who is intent on outwitting me at every turn. We clash frequently. Cary Lynn, or Barbra, she renamed herself a couple of years ago at an educational consultation is a girl who knows what she wants.
Treat her like an imbecile she will ignore you or roll her eyes at you. Tell her that it's time for therapy and you will hear the power of her lungs three blocks down the road. Offer her ice cream, frosting, lollypops, or any sugar laden treat you are her best friend for life. Read her stories and watch her eyes light up. Ask her to use her communication book and watch her try to throw it or look blankly into space. Engage her and see the fire within. Teach her something new and watch her process. Bring her to a doctor that treats her like crap she will place a well deserved kick to the shin, a bite, or scream in their face.
She is her own person. Don't get me wrong, she's also a part of a family unit. But I can't always speak for her. Because I'm not Cary Lynn (or Barbra). I'm mom. Now I get to call all the big shots like bedtime (which she ignores), healthy oral meal choices (which she spits in my face and then crowns for sugar), educational television (which she will nap in front of until the tv is magically changed to Peppa Pig), and her therapy schedule(which she takes off her diaper and pees everywhere). So at this point we really see who's in charge around here.......
My daughter is amazing. She's smart, loves to laugh, enjoys violent fairy tales, Peppa Pig, Peg and Cat, her doll Cynthia Arvella, and has her own way of doing things. She keeps me on my toes and I can honestly say every day is an adventure around here. Someday maybe the world will see the same thing that I see. They'll look past the disability and see the ability. They see a whole new person. They'll see Barbra.
"Oh aren't you just a doll baby? Wook at how sweets you is." Meanwhile, the "doll baby" was rolling her eyes. When asked how old she was I said 5. I was then told about how God sends precious angels to us all. When I jokingly quipped that the "precious angel" just bit her brother ten minutes ago I was quickly reassured that Cary Lynn didn't have the sense to come in out of the rain.
I left at that point.
It's hard sometimes. When the world is presented with children who have multiple disabilities assumptions are made. Over and over. Most of them fall into what kids can't do. Or won't ever do. The bar is set so low I feel like I'm in a round of limbo.
One of the hardest things has been establishing that Cary Lynn is her own person. That she has her own thoughts, dreams, and way of seeing the world around her.
When we brought her into our home at nine months old many applauded our decision. We were taking this poor disabled child home with us. Cue the sainthood music!!
I'm going to tell you a little secret. We didn't pick Cary Lynn. She picked us. At day four of our first of many hospital stays when my world was unravelling bit by bit with every scary new doctor proclamation my child bit her first of many medical professionals. After the Dr. left I looked at her and said, "You are my kind of people. I think you'll fit in well with us. Let's get you well and then you can come home to your family." This kid had the nerve to look like she was pondering this!!! I mean hello, I'm not that bad of a human right? So I tried again, "C'mon, it's not like this is a Paris vacation. You have a family that wants you so badly. A mama, daddy, and brother. And a room full of new toys!" Well the word toys sealed the deal and I felt like this little human is going to challenge every last thing that I said and did henceforth and forever more.
And she has. I am constantly kept on my toes with a child who is intent on outwitting me at every turn. We clash frequently. Cary Lynn, or Barbra, she renamed herself a couple of years ago at an educational consultation is a girl who knows what she wants.
Treat her like an imbecile she will ignore you or roll her eyes at you. Tell her that it's time for therapy and you will hear the power of her lungs three blocks down the road. Offer her ice cream, frosting, lollypops, or any sugar laden treat you are her best friend for life. Read her stories and watch her eyes light up. Ask her to use her communication book and watch her try to throw it or look blankly into space. Engage her and see the fire within. Teach her something new and watch her process. Bring her to a doctor that treats her like crap she will place a well deserved kick to the shin, a bite, or scream in their face.
She is her own person. Don't get me wrong, she's also a part of a family unit. But I can't always speak for her. Because I'm not Cary Lynn (or Barbra). I'm mom. Now I get to call all the big shots like bedtime (which she ignores), healthy oral meal choices (which she spits in my face and then crowns for sugar), educational television (which she will nap in front of until the tv is magically changed to Peppa Pig), and her therapy schedule(which she takes off her diaper and pees everywhere). So at this point we really see who's in charge around here.......
My daughter is amazing. She's smart, loves to laugh, enjoys violent fairy tales, Peppa Pig, Peg and Cat, her doll Cynthia Arvella, and has her own way of doing things. She keeps me on my toes and I can honestly say every day is an adventure around here. Someday maybe the world will see the same thing that I see. They'll look past the disability and see the ability. They see a whole new person. They'll see Barbra.
Tuesday, May 2, 2017
Celebrating Mother's Day
Well, I did it again. I vow I won't every year but somehow my newsfeed finds the most depressing articles on Mother's Day and having children with special needs.
Before you start yelling, hear me out. I KNOW every day is not a rosy ray of sunshine with unicorns dancing in the meadows. I had to fight my almost ten year old to get out of bed and go on a fun field trip today (I'm so mean, I know). He wanted to stay at home and cuddle. I felt like a heel. I also has to listen to my five year old wail all the way home because the John Denver CD bit the dust and she couldn't listen to Thank God I'm a Country Boy in a loop. Then I had the nerve to put her in her gait trainer before our appointment and insist she have some physical activity before she's stuck in the car. If you count eat shattering screaming as proper lung development, we are all set. So I know and I sympathize.
But there are so many amazing things. Things that would never have happened had two children with medical conditions had not have shown up and tipped my world topsy turvey. Here are five positive things that I've learned along this wild ride.
1. There are some amazing and strong women out there.
Don't know any, look in the mirror mama. You are strong and I admire you. I know that you shed tears and worry that you are messing up. I'm going to let you in on a secret. We ALL worry about that. I don't care if you have a child with or without disabilities. Parenting is hard. You are doing a killer job of it even if you don't think you are.
2. Every day is a new chance.
Even though we aren't promised tomorrow, sometimes it really helps to look forward to it if today has gone in the tank. Lost your child's John Denver CD? Tomorrow will be better because I can spend tonight burning a new copy!! You messed up and questioned your ability to parent a Chia Pet, let alone this little human with so many extra needs? Breathe, and see point number 1.
3. A Village has my back.
In the age we live on a few clicks connect me to people that I may have never met 15 or so years ago. Sometimes it's hard with appointments and Drs. to find time, but it's worth it. Whether you have a village of two or two hundred it's important to find people who will love and care about you and your family. My village knows my faults and flaws and embraces me for who I am, not what I wish I was.
4. We become.
In this journey we are often stretched to our limits and breaking points. Yet we don't back down. We become advocates. Because when you hold that little one you give up what you want and fight with every breath for what they need. It's not easy but we become stronger and more determined to find cures, get testing done, locate the best care possible. We become what our children need.
5. Our kids are here for a reason and a purpose.
I don't believe that there is some great cosmic zap and randomness occurs. There is a purpose and a reason, even if we don't understand why. Each person has a destiny to fulfill. Even though they may have limitations and there is a reality my kids have a purpose that they were uniquely designed for and only they can do. So does your child.
These are just a few reasons to celebrate being a mom. There are so many out there. Happy Mother's Day to some amazing moms who are advocating, standing strong, and above all loving their kids and seeing the amazing potential that they possess.
Before you start yelling, hear me out. I KNOW every day is not a rosy ray of sunshine with unicorns dancing in the meadows. I had to fight my almost ten year old to get out of bed and go on a fun field trip today (I'm so mean, I know). He wanted to stay at home and cuddle. I felt like a heel. I also has to listen to my five year old wail all the way home because the John Denver CD bit the dust and she couldn't listen to Thank God I'm a Country Boy in a loop. Then I had the nerve to put her in her gait trainer before our appointment and insist she have some physical activity before she's stuck in the car. If you count eat shattering screaming as proper lung development, we are all set. So I know and I sympathize.
But there are so many amazing things. Things that would never have happened had two children with medical conditions had not have shown up and tipped my world topsy turvey. Here are five positive things that I've learned along this wild ride.
1. There are some amazing and strong women out there.
Don't know any, look in the mirror mama. You are strong and I admire you. I know that you shed tears and worry that you are messing up. I'm going to let you in on a secret. We ALL worry about that. I don't care if you have a child with or without disabilities. Parenting is hard. You are doing a killer job of it even if you don't think you are.
2. Every day is a new chance.
Even though we aren't promised tomorrow, sometimes it really helps to look forward to it if today has gone in the tank. Lost your child's John Denver CD? Tomorrow will be better because I can spend tonight burning a new copy!! You messed up and questioned your ability to parent a Chia Pet, let alone this little human with so many extra needs? Breathe, and see point number 1.
3. A Village has my back.
In the age we live on a few clicks connect me to people that I may have never met 15 or so years ago. Sometimes it's hard with appointments and Drs. to find time, but it's worth it. Whether you have a village of two or two hundred it's important to find people who will love and care about you and your family. My village knows my faults and flaws and embraces me for who I am, not what I wish I was.
4. We become.
In this journey we are often stretched to our limits and breaking points. Yet we don't back down. We become advocates. Because when you hold that little one you give up what you want and fight with every breath for what they need. It's not easy but we become stronger and more determined to find cures, get testing done, locate the best care possible. We become what our children need.
5. Our kids are here for a reason and a purpose.
I don't believe that there is some great cosmic zap and randomness occurs. There is a purpose and a reason, even if we don't understand why. Each person has a destiny to fulfill. Even though they may have limitations and there is a reality my kids have a purpose that they were uniquely designed for and only they can do. So does your child.
These are just a few reasons to celebrate being a mom. There are so many out there. Happy Mother's Day to some amazing moms who are advocating, standing strong, and above all loving their kids and seeing the amazing potential that they possess.
Thursday, March 16, 2017
We are the Warriors
You see us everywhere you go. We may be in the shadows or in the limelight. We may be loud or quiet with deafening silence.
We are forged out of endless battles with doctors, therapists, insurance, schools, paperwork, research, and advocacy. Everyday we gear up to fight new battles and rise to new challenges. Our minds are sharp, our hearts are strong, and our knowledge is a force to be reckoned with. We put on our armor of strength daily.
We gather on battlefields ready to fight for the thing that means the most to us, our children. We sit in hospitals holding their hand tight and fighting for their lives. We go to therapies and press everyone to take one more inch. We can't afford to loose, the cost is too high.
To the world we may seem brave, but we aren't always. For every victory we have miles of defeat behind us. But we are driven to try just one more time. We may be scared to death, but we rise up and do it anyway. We don't have a choice. Failure is not a word we embrace.
Our children have multiple needs and because of them we have changed. We have taken on roles that are new to us. We have stepped out from the sidelines and walked onto enemy territory. Because of them, we dare to do things outside of our comfort zone. We push harder and battle on.
We are the Warriors. We are the storm. We will battle and we will win.
Friday, February 24, 2017
Finding Their Own Beat
If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away. -Henry David Thoreau
We all dream big dreams for our kids. I'm no exception. When you sit and gaze lovingly over your child's cradle, watch them play, and dream about what amazing things they are going to do. Your son picks up a bandaid and you see a doctor. Your daughter draws that first picture and you see the next O'Keeffe.
What happens when your dreams crash with reality? What happens when your dreams don't match up with your kid's life?
This is what my struggle has been these couple of weeks. Trying to find new rhythms in our life song. It's been hard for me. I don't like watching the kids struggle. I don't like seeing them fail.
When your son says that he can't keep his homework straight and the words swim and the tears fall. When your daughter can't go to the super awesome program that you've been on the waiting list for two years for because her body isn't strong enough.
I hear the words of Marvin's doctor in my mind, "It must be so frustrating. He's smart but the doors are locked in certain areas of his mind and the key is always three steps beyond his grasp." Cary Lynn's dev ped pretty much says the same thing every visit, "Her mind is there and it's trapped in a body that refuses to let it be free."
I've gotten used to letting things go, it's just a fact of life. But it doesn't make it sting less. My kids will always struggle more than most kids will. But they have their own paths to follow, not my path. My path would take away the challenges and obstacles that they need to equip them. To make them strong. They need a chance to travel their paths, not mine. Their paths will teach them strength, grace, humor, and courage.
They won't be easy paths, life never is. But they won't have to travel alone. I'll be right there with them. Stepping to their music and finding their unique songs.
We all dream big dreams for our kids. I'm no exception. When you sit and gaze lovingly over your child's cradle, watch them play, and dream about what amazing things they are going to do. Your son picks up a bandaid and you see a doctor. Your daughter draws that first picture and you see the next O'Keeffe.
What happens when your dreams crash with reality? What happens when your dreams don't match up with your kid's life?
This is what my struggle has been these couple of weeks. Trying to find new rhythms in our life song. It's been hard for me. I don't like watching the kids struggle. I don't like seeing them fail.
When your son says that he can't keep his homework straight and the words swim and the tears fall. When your daughter can't go to the super awesome program that you've been on the waiting list for two years for because her body isn't strong enough.
I hear the words of Marvin's doctor in my mind, "It must be so frustrating. He's smart but the doors are locked in certain areas of his mind and the key is always three steps beyond his grasp." Cary Lynn's dev ped pretty much says the same thing every visit, "Her mind is there and it's trapped in a body that refuses to let it be free."
I've gotten used to letting things go, it's just a fact of life. But it doesn't make it sting less. My kids will always struggle more than most kids will. But they have their own paths to follow, not my path. My path would take away the challenges and obstacles that they need to equip them. To make them strong. They need a chance to travel their paths, not mine. Their paths will teach them strength, grace, humor, and courage.
They won't be easy paths, life never is. But they won't have to travel alone. I'll be right there with them. Stepping to their music and finding their unique songs.
Friday, February 10, 2017
Twice Gifted
It's a term that makes me cringe. One that I hear quite a lot when it comes to Marvin. Twice gifted. The more common term is twice exceptional. It means intellectually gifted children who have some form or forms of disability. These children are considered exceptional both because of their intellectual gifts and because of their special needs.
This week I sat down at UVA with a neuropsychologist. Marvin has spent several days testing at her office and I was ready for the results. What was supposed to be a 30 minute follow up expanded into 90 minutes and she ended up being late for a meeting. But there was just no way to condense the results into a short and sweet package.
She started off with what she calls the "good news". Marvin has a normal IQ. He also tested average or in several cases above average in the learning department. She (and Marvin) credit homeschooling and his reestablished love of learning. The Dr. says he is super smart and tries really hard. That was good to hear.
But she stated, for every strength there were strong deficits. She went on to explain how brains are supposed to work and areas that are supposed to do certain things. She went on to explain how three events reshaped Marvin's brain and in some cases destroyed vital connections that are essential.
Marvin was exposed to Meth in utero. He was born addicted. Strike one. Then he he was shaken resulting in Shaken Baby Syndrome and seizure activities. Strike two. Then he was placed in foster care and had trauma and stress of non permanent situations until he came to live with us. The longer you stay the more trauma. Strike three.
What does it mean for Marvin? Well it simply means that even though he's smart his brain sustained a ridiculous amount of damage. Unrepairable damage. That part hurts. I can't fix it. For years we have tried to "fix" Marvin. Having a Dr. tell you you can't make it better cuts to your very soul. I'm a fixer. That's what moms do. But sometimes you just can't and you have to learn to go forward with what you have.
Marvin will have to learn adaptation skills. We will have to teach him how to work with what he's got. Marvin has already subconsciously learned some skills. He will have to have stuff broken down into manageable pieces. We also will have to have more therapeutic and medical intervention. Marvin gets caught in loops and can be inflexible. He then has triggers and emotional meltdowns. Intensive therapy will help teach Marvin coping skills. Additional OT will help with fine motor adaptations. Marvin may also require in home therapy.
The Dr. found that Marvin is struggling at school. Yes, he is back in school. He wanted to try. We love where he is and it has a special place in my heart. The Dr. has a large list of modifications that will need to happen there as well. We spent a good amount of time talking about how great alternative schools are (she grew up Waldorf) for kids like Marvin. But she also advocated for homeschool and said she believed that Marvin learns best one on one.
When I left I felt totally overwhelmed and sad. And angry. I don't think it's fair that he's had to have gone through so much. When the Dr. tells you that your child will always be harder to parent than the average child and lots of people won't understand how complex his needs are it's a huge punch in the gut. I went home and had a good long cry. Then I binged on chocolate and chick flicks.
Right now Shannon and I are wading through it all. Here's what I know. Marvin is still Marvin. Just because we know more now doesn't change who he is. It does help me be a better advocate for him. He's an amazing kid who lived through a lot of crap and came out scarred and battered but still victorious. He won a huge battle by thriving. Most kids who go through what he went through aren't as lucky. He has a family who has his back and loves him unconditionally and will advocate for him fiercely. Just because he had a rocky start doesn't mean he will have a rocky finish. We will continue to stand strong together and we will overcome.
This week I sat down at UVA with a neuropsychologist. Marvin has spent several days testing at her office and I was ready for the results. What was supposed to be a 30 minute follow up expanded into 90 minutes and she ended up being late for a meeting. But there was just no way to condense the results into a short and sweet package.
She started off with what she calls the "good news". Marvin has a normal IQ. He also tested average or in several cases above average in the learning department. She (and Marvin) credit homeschooling and his reestablished love of learning. The Dr. says he is super smart and tries really hard. That was good to hear.
But she stated, for every strength there were strong deficits. She went on to explain how brains are supposed to work and areas that are supposed to do certain things. She went on to explain how three events reshaped Marvin's brain and in some cases destroyed vital connections that are essential.
Marvin was exposed to Meth in utero. He was born addicted. Strike one. Then he he was shaken resulting in Shaken Baby Syndrome and seizure activities. Strike two. Then he was placed in foster care and had trauma and stress of non permanent situations until he came to live with us. The longer you stay the more trauma. Strike three.
What does it mean for Marvin? Well it simply means that even though he's smart his brain sustained a ridiculous amount of damage. Unrepairable damage. That part hurts. I can't fix it. For years we have tried to "fix" Marvin. Having a Dr. tell you you can't make it better cuts to your very soul. I'm a fixer. That's what moms do. But sometimes you just can't and you have to learn to go forward with what you have.
Marvin will have to learn adaptation skills. We will have to teach him how to work with what he's got. Marvin has already subconsciously learned some skills. He will have to have stuff broken down into manageable pieces. We also will have to have more therapeutic and medical intervention. Marvin gets caught in loops and can be inflexible. He then has triggers and emotional meltdowns. Intensive therapy will help teach Marvin coping skills. Additional OT will help with fine motor adaptations. Marvin may also require in home therapy.
The Dr. found that Marvin is struggling at school. Yes, he is back in school. He wanted to try. We love where he is and it has a special place in my heart. The Dr. has a large list of modifications that will need to happen there as well. We spent a good amount of time talking about how great alternative schools are (she grew up Waldorf) for kids like Marvin. But she also advocated for homeschool and said she believed that Marvin learns best one on one.
When I left I felt totally overwhelmed and sad. And angry. I don't think it's fair that he's had to have gone through so much. When the Dr. tells you that your child will always be harder to parent than the average child and lots of people won't understand how complex his needs are it's a huge punch in the gut. I went home and had a good long cry. Then I binged on chocolate and chick flicks.
Right now Shannon and I are wading through it all. Here's what I know. Marvin is still Marvin. Just because we know more now doesn't change who he is. It does help me be a better advocate for him. He's an amazing kid who lived through a lot of crap and came out scarred and battered but still victorious. He won a huge battle by thriving. Most kids who go through what he went through aren't as lucky. He has a family who has his back and loves him unconditionally and will advocate for him fiercely. Just because he had a rocky start doesn't mean he will have a rocky finish. We will continue to stand strong together and we will overcome.
Monday, February 6, 2017
Feeding Tube Awareness 2017
During this week in February we take time to bring awareness to the fact that are multiple ways of being fed. My daughter will be coming up on her third year Tube-iversay in a few weeks as well. The decision to place a tube in my child not only gave her the ability to grow and thrive, but also gave her something so much more. It gave her freedom from pressure and a chance to make her own choices about how she eats. Let me take you back and share our journey.
When she first came home at nine months old Cary Lynn was bottle fed. Sure she was a little slower and needed to eat more often but she enjoyed her bottles. I loved watching her smack her lips and grunt as she slurped.
Then we ended up in the hospital. She was pretty sick. While we were there I met my first feeding therapist. She immediately didn't like the bottle I was using. Said it was too hard for Cary Lynn and took too long. She found us new bottles. Therapeutic bottles. O.K. that wasn't horrible. Cary Lynn adjusted and soon ate with her new bottles. Then we met with a new G.I. who complained she was too small.
"Are you ready for a G-Tube and Nissen?" Ummmm no, she eats. He wasn't thrilled but said O.K. you need to go to nutrition and feeding clinic. So I took her, therapeutic bottles and all and we went to feeding clinic. Because that was what the Drs. said and frankly I was worried about her. We had only had her home for a little while and we seemed to be making frequent pilgrimages to the hospital. We also had a tube that went from her nose down to her stomach (an NG tube). She kept pulling it out and chewing it up. Gross.
So we went and the people who assessed us were nice. Cary Lynn ate and threw up everything on the nurse. Up till that point there was a waiting list. After she barfed everywhere they had a magic space open up. We started next week.
I was so excited! She was going to eat! I was going to put some chunk on her!!! Yay!! I tried to get Cary Lynn excited too. I told her about how much fun it would be. There would be bubbles, stuffed animals and she would eat. She just grunted and went back to her bottle.
When we started the first thing they did was tell me the bottle had to go. I protested, saying that she loved it. They gave me a bottle that hair dressers use to put coloring in with food safe tubing. It looked like a hamster bottle. I told them that. They didn't like it much.
They showed me how to squirt it in her mouth. Cary Lynn didn't like it. She whimpered for her bottle. We managed. Then we went home and I fed her bottles.
Next week she did better. I rejoiced, went home and threw her bottles away. That night after four hours of crying I dug one out that I hid just in case. I told the therapists that she wasn't ready. They said she could and I was being difficult. So they kept working with her. She finally took the hamster bottle. We were finally able to throw away her bottles.
All during that time her weight see sawed. It was up and down. There was a lot of pressure for a tube but she was still eating. Every Dr. only talked about the tube. But she ate. And she was happy eating.
Then feeding clinic wanted to start on food. They showed me how to make purees that had more calories. It was fun. I learned quickly. Cary Lynn didn't get the memo. She balked. Some days were good days. We had to have lots of meals. She had to eat about eight times a day. She also started refusing.
Our feeding program is behavior based. Eat a bite get TV. Eat a bite get bubbles. Or music or a sticker. The problem was and is Cary Lynn has visual impairments. So that stuff didn't mean a lot to her. She started to wave her hands in front of her face and put them over her mouth. The feeding therapist took her and tied her arms down. That didn't go over well with me or Cary Lynn.
After I threatened to call CPS she was untied. Cary Lynn kept her arms down but every bite of food was spit out into the therapist's face. Cary Lynn was shaking violently and turing purple. We went home early.
The next week we were getting ready to go back. I was telling Cary Lynn where we were going when I heard her make a noise. I leaned over to look at her. Her lips were shaking, her eyes were wide with fear. Her body trembled uncontrollably. My kid was scared.
Eating was no longer a fun thing for her. She had begun to dread it. Every meal was a nightmare. The therapy that was supposed to help her robbed her instead. I had hoped for so long that some magical cosmic event there would get her to eat. In following what I wanted I wrecked what should have been a beautiful and organic experience. We called out.
The next day I went to her G.I. doctor and told him we were ready for a tube. Three weeks later she had a tube. After she had a tube we were "discharged" from feeding clinic because she "never had to eat again orally". Frankly, I will never take her back there again. What they did was wrong and I would be wrong to allow it to happen again.
Now my daughter eats with a g-tube. As much as I fought it that tube is one of the best things I've ever done. She's growing and gaining. She also has started eating orally again. Because she WANTS to, not because she HAS to. Her G-Tube has given her freedom in that department and she can approach food on her own terms. We don't stress anymore. Cary Lynn's happiness over discovering frosting, chocolate, and bean burritos all over again have made waiting for her to be ready all worth it. The G-Tube has allowed us that privilege. And for that we are grateful. Happy Feeding Tube Awareness week!
Sunday, February 5, 2017
Five things I need you to know about having an immunocompromised child
Aaahh-choo!
The woman next to us lets out a big sneeze and doesn’t bother to cover her nose. I was in a bind because my daughter’s nurse was absent and my son had to be at his appointment. The very thought of those germs made me twitch. Luckily, we were able to move to a different area after a staff member who is familiar with our family saw the events unfold.
This is our life. My daughter is immunocompromised. In a nutshell it means that a person’s immune system is weakened or absent. A person who is immunocompromised is less capable of battling infections because of an immune response that is not properly functioning.
We aren’t alone. There are about 10 million people out there. That’s a pretty steep number.
Why are infections dangerous in immunocompromised patients?
The usual symptoms may be absent. Patients with weak immune systems may not show the classic signs of infection.
Also their systems may not respond quickly to infection. Patients with weak immune systems may have trouble clearing infections from their bodies. The infection may also move quickly. In the absence of infection-fighting white blood cells, the infection may rapidly progress from fever alone to sepsis and death. Not something you want to play around with. So here are a few things to keep in mind as we head full force into cold and flu season.
1. A little illness can become a big deal. That cold that you have, the stomach bug that only lasted 24 hours on your child, or even that little sniffle can become a really big deal. An immunocompromised person can’t fight those bugs off the way you or I can. When my daughter becomes infected, a simple cold can last well over a month. A stomach bug buys us a week in the hospital. A sniffle leads to another round of antibiotics. It’s not fun.
If you are sick the best thing you can do is stay home. I know it’s not easy and I can see you rolling your eyes at me. I worked at a job that demanded I come in with a stomach bug. What’s worse was it was a daycare! The assistant manager didn’t care that I was sick. She claimed there was no coverage. So I exposed lots of people. I’m well aware of the reality. So I started wearing masks when I was forced to come in ill (and I found a new job). So if staying at home isn’t an option, trying to quarantine yourself and taking extra safety precautions is your second best bet.
2. Don’t touch them! This one is important, too. I have been in grocery stores, libraries, waiting areas and lots of other places. People feel the need to lay hands on my child. I know she’s cute, but your germs are too big for her body. Plus it’s her body. She may not want you to touch her. At home we wash frequently before we touch her and we are her family. This helps her stay well.
3. Our families may have to do things differently to keep them well. When my son started school, my daughter’s medical team sent home a list to help keep her well. It was a long one. These things aren’t always fun for my son but he knows we have to do it. We also have to step up hand washing, cleaning, and there is a sign hanging on our front door that asks you to remove shoes and wash and sanitize your hands. Some days it gives me a headache, but these things matter.
4. We can’t always go to large gatherings and typical places. I’d love to go to every reunion, bounce place, and pizza party zone. But we can’t. Please don’t be offended if we can’t be there. We want to and we will miss everyone. But these places carry hidden dangers for our loved ones. We may need a smaller gathering or a different meeting place.
5. Don’t tell the person how bad you feel for them right to their faces. They probably feel bad enough that they are missing out. My daughter may not care, but I do. Having been able to take my son to places and have her miss out isn’t fun for me. Instead of listing all the stuff they are missing out on find way to include them! It may take a little more creativity on your part but it’s so worth it. One of the best memories I have is of a good friend bringing her child over here with a few party trinkets and some cake to have a second birthday party so my child could participate. It meant a lot.
I’m sure I could come up with more. You may even have ideas too, but this is a start. We can make things better for our loved ones who are immunocompromised and keep them healthy and thriving.
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