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Monday, August 4, 2014

Osoko Yemna

Last week, Alex had hip surgery. He had a tear in part of his hip that they had to repair, and extra bone that they had to shave off. The surgery took longer than expected because once the doctor got in to look at Alex's hip, he realized there is more damage than they thought based on the MRI. No one came to tell me that Alex was fine, things were just taking longer, so that was a little harrowing. When the doctor says the surgery will take 1-2 hours and it takes 3 1/2, that's pretty significant, if you're the one in the waiting room. But he made it through. 

We didn't realize the extent to which Alex would need help after his surgery. Thank the sweet Lord in Heaven my parents were here for a couple days to help out. Nana and Papu cleaned, cooked, shopped, played with the kids, fixed my curtains, did endless loads of laundry, took the dog for about 300 walks…they were completely exhausted by the time they left. Every time I passed a room, I was shocked that it was still clean. Because Nana and Papu were cleaning machines. At one point they said they can't believe how much work there is to do here, and how few people there are to do it. Namely, me. I said Yep. Welcome to my world. 

The first few days after his surgery, Alex couldn't move his leg by himself. He couldn't go into the bathroom by himself. He wasn't supposed to shower or get his wounds wet. He was pretty helpless, poor guy. While Mom and Dad were here, I was able to focus mostly on what Alex needed, so that was good. Despite my generous offer of a permanent air mattress in the basement, my parents had to go home after a couple days here. So then the real challenge began. 

Alex has an exercise machine for his leg that he has to use three times a day for an hour and a half each time. I help him get his leg into the device and then he's on his own, to lay there and have his leg exercised by the machine. When he's not doing that machine, he has PT exercises he has to do twice a day. When he's not doing that, he has to be hooked up to this fancy ice machine (which I'm constantly buying bags of ice for, carting the bags upstairs, and emptying them into this crazy machine, then getting Alex's hip placed just right into the big ol' ice pack) to ice his poor, bruised hip. When he's not doing that he has to wear his hip brace. And whenever he is laying down, he needs to have calf compressors squishing his legs so he doesn't get a blood clot. And he can't get any of this done on his own. So Nurse Carrie is on duty. The machines are all very heavy and full of velcro. I'm so tired of fighting velcro. It sticks to everything it's not supposed to stick to. 

Then there are the meds. Alex can't ever remember when he takes his medicine (his brain is still foggy)-- either the pain meds or the regular vitamins he's on-- so I have to keep on top of that too. He's a good patient though. He does what I tell him to. He knows I'm his source of food. He texts me when he needs something. I call him from my cell phone when I need to ask him something and I'm downstairs. I say "Hello, this is Downstairs calling…" and he says "Hello, is this the Newsom Rehabilitation Facility?" when he calls me. We crack ourselves up.

Days before Alex's surgery, we were downtown Chicago with my brother and his family, having a fabulous day. We did so many fun things together, made really special memories. And then I realized my wallet had been stolen. Perfect. Because I need more stress. Perfect. 

Our darling children have been giving me a run for my money while Alex is out of commission. They sense weakness. They sense I'm at my wit's end. They sense I'm so exhausted that I don't have much fight left in me to make them do what they're supposed to do. I can't leave Alex for more than an hour because of his rigorous hip-py schedule, so we can't go anywhere or do anything. Our gracious friends have been helping, bringing us groceries and taking care of the kids when I have appointments. I don't often ask for help (stupid, I know) but I have been wracking my brain since Alex's surgery, trying to figure out who and when and where I can get help from for the kids. I'm calling in all my favors. Otherwise we may not all make it out alive from this post-surgery-end-of-summer-craziness.

We've also made some important discoveries about our boys during this time of fewer meds. We've discovered they legitimately need those meds. Without them, they can't calm down to sleep and they are very, explosively, irrationally impulsive. All the time. A few weeks ago when I started seeing that the boys were really struggling and all my "voodoo" (as Alex calls it) (I prefer the term 'alternative' or 'natural') wasn't really making a dent in their struggles, I began to feel like a failure. Like somehow the fact that we can't make it in life without our kids being on meds is a reflection on me and my obviously poor parenting skills. If I was a better mom, my kids wouldn't need meds, I kept thinking. But I talked to my support team (my parents, Alex, our therapist) and they all helped me realize that this does not have anything to do with poor parenting. This has to do with the fact that the kids have a chemical imbalance in their brains. This summer experiment shows us that the boys really do have ADHD. It gives us reassurance that they do need these meds in order to get the most out of life. At least right now. Hopefully someday we'll be able to go off of meds and stay off. 

I think the culmination of Alex's surgery and the insane amount of stress and busy-ness all on my shoulders has let me see more clearly that the boys need more help. The boys'  inability to calm down at night has been difficult for Alex and I to handle this summer. Their impulsivity and intense, angry, overreactive outbursts have been quite a challenge. And the outbursts have gotten more frequent as the weeks have gone on. The boys overreact to all kinds of little things, and while the tiny rages aren't as long and violent as they used to be, something has changed. The boys no longer demonstrate anxiety about having these mini-rages out in public. Being out in public is no longer a deterrent to difficult behavior. This scares me. No matter what we do, someone is always having some sort of total meltdown about something. If I take the kids to get ice cream. Or we go on a vacation. Or to the zoo. Or someone doesn't get the flavor of bagel he wants. Total meltdowns. I'm hoping that by being back on ADHD meds, the boys' impulsivity will be contained a little better. I'm hoping we can go on family outings again and not expect that there will be huge problems each and every time. I'm hoping the meds will help the boys regulate a little bit better. 

As long as I feel like I know for certain that the boys do actually have a challenge that will be helped by medication, then I'm ok putting them back on meds. I just don't like second guessing whether or not they have an actual diagnosis, like "do they actually have ADHD or is their impulsivity a byproduct of something else?" I just want to make sure I'm doing the best thing for each of the kids, not just lumping them all together onto bunches of meds. So this summer experiment has validated the fact that the boys do need some of these meds to help them function better.

All the boys are back on their sleepy med. Aidan is at a half dose. Tomorrow Ben and Jonah will start their ADHD meds again. I'm waiting on Aidan. I want to see what happens when school starts. He hasn't had the kind of impulsive outbursts that his brothers have been having all summer. And his appetite is better. And he has tried eating NEW THINGS!!! Things he NEVER would have tasted in the past. Cucumbers and poppy seed muffins and red grapes!! This is just incredible. Remember he was the one who needed feeding therapy a couple years ago to address his SPD surrounding eating? He was the one who ate ONLY Yoplait vanilla yogurt and Cheerios for an entire year? Now he is eating all kinds of things! Incredible. I'm not quite willing to give that up yet. I'm not ready to say he needs ADHD meds back on his plate. 

One funny thing-- funny in hindsight. Last night I finally had time to make a nice family dinner. I had a roast in the oven all afternoon, mashed potatoes, veggies. I laid everyone's plates out on the table, proud of my non-cooker self for making such a healthy dinner for my family. Alex is the chef in this family, not me. So meals have been less-than-exciting since Alex can't move. Anyway. I was proud of my hard work.

I went across the street to gather my children and greet our new neighbors who had just moved in. As I was chatting, Aidan came out of our house and yelled across the street that Ollie the Dog had eaten all our dinner.

?!?!?!

I was torn between screaming bloody murder and just falling on the sidewalk laughing. I decided screaming might prematurely scare off my sweet new neighbor and her little children. She should at least have the opportunity to get to know me before she's scared out of my life. So I just laughed. Seriously. Only at our house. The dumb dog ate the whole darn pot roast, going to everyone's plate on the table and gobbling the meat up as if I never feed him. 

I went home. I gave the dog a very large time out. I made everyone else grilled cheese for dinner, thanks to a neighbor who had bought us bread earlier that day. Seriously. What else can happen at our house?

I feel like I have the Newborn Numbness. You know when you have a brand new baby and you're up every two hours to feed the little thing? Or maybe that's just when you have preemies. But since I don't know any different, we'll just assume every new mama feels that way. I have that level of brain-dead-ness because of exhaustion. One or two kids wet the bed every single night. Yes, I've called the pediatrician. And our holistic doctor. And we're doing everything they say, with one exception. My biggest bed wetter will not wear the tiny device used to train kids to wake before they pee. His anxiety and sensory issues make it impossible for him to agree to try this thing that will set off a super loud alarm every night as he is laying in slumber. At least one kid has a nightmare most nights. And there is always a shrieking human next to my ear at the buttcrack of dawn, yelling about how there is nothing for breakfast. 

Trying to remember everything for everyone, trying to keep everyone fed and clean, trying to keep the house running, trying to make sure my hubby remembers all his exercises and meds, trying to deal with the never-ending litany of mini-rages that fire up all through the day…

Brain dead. That's all I have to say.

My dad said today that he has a new diet for anyone who is interested. It's called the Newsom Diet. All you have to do is come and live at my house for a couple days, he said. He lost three pounds in 2 1/2 days living at my house and taking care of everything that needed to be taken care of. This doesn't explain why I am not a size 2, but whatever. Glad it worked for him!

I always try to look on the bright side, glass half full, all that jazz. But sometimes things just suck. Life is overwhelming. Having your wallet stolen is overwhelming. Having your husband go through surgery is overwhelming. Having kids with special needs is overwhelming. I get worried that this is as good as it gets. I tell myself it'll get better, easier, happier, blah blah blah. And I do know it will. But being stuck in the house with 4 warring children and an invalid husband and a roast-snarfing dog is not my idea of a picnic. Tomorrow's a new day. Hopefully with an hour of peace, as I go to my chiropractor appointment, knowing that Alex is tucked into whatever machine he is scheduled to be in during that hour, knowing that my dear, dear friends are making sure my 4 little monkeys are taken care of while I take a breath.

As I was expressing my eternal gratitude to my parents for everything they have done for our family this past week, they told me that in the native language of the African tribe we used to live with, Gbaya, there is a saying: "Osoko yemna." It means many thanks. And also that 'thank you' is not enough. 

Osoko yemna to my friends and family and therapists and doctors. "Thank you" is not enough, no matter how many times I express it. Thank you. Osoko.




Thursday, July 17, 2014

I Don't Want To Be A Single Parent

I never ever ever ever want to be a single parent.

Alex has been out of town for the past 5 days. I was as sick as a dog the first three days: migraine from rainy weather, Ella's cold that she was nice enough to share, and terrible allergies. Fun stuff. The kids have been normal, so that's a good thing I guess. Not more challenging than usual, but normal-challenging. Ella was thoughtful enough to wake me up every morning at 5:30, so I didn't need to set an alarm. Ben and Jonah were often my bookends of the night- Ben usually wakes me up just after I fall asleep, and Jonah wakes me up just before Ella wakes me for the day. Ella's been having bad dreams, so she wakes up in the middle somewhere and shoves me over in bed and climbs in. 

Ben had a tough time dealing with Daddy being gone. His sadness over missing Dad was tangible, especially at night. Usually when Dad is gone and Ben is missing him, he wears Daddy's clothes around the house. He globs around in a shirt and "squishy pants" from Daddy's closet that are about 13 sizes too big, ties them up with a belt and wears a smile from the comfort that Dad's clothes bring him. This time Dad has been gone, Ben decided it was a good idea to use Dad's cologne as a way to comfort himself. I thought this was sort of ingenious. Until Ben's room began to wreak of cologne. He sprayed his blankie with it every night and snuggled into a Daddy Smell with a smile. After wiping the tears away. He also sprayed the cologne into the fan as it blew, so the smell was distributed throughout his room. What you have to take into consideration is that Ben also has a cold, and his smeller is broken. So in order to effectively smell Dad, he has to spray a billion times more cologne just to smell a hint of it. Nice. Ben's room will smell like Dad for the next 40 years.

Of course the van broke. So I had to get that taken in to the fix-it shop. Apparently things are leaking and things shaped like a Y are broken. Who knows. It's all Greek to me. Luckily we have Alex's car home to schlep people around in. 

Yesterday my sweet mother-in-law came to my rescue; I had double booked because I thought Alex would be home to help out. So Jonah needed to be at a psychiatrist appointment at the same time Ella needed to be dropped off at camp. In opposite directions of course. So Grandma dropped Ella off while I took Jonah to the psychiatrist. Then he and I ran to the grocery store. Then we got home, put the groceries away, and Grandma drove down to the fix-it shop with me so I could drop the van off and come home in her car. Then I cleaned up dog vomit while Grandma cleaned up the ants that were eating a lost cracker on the kitchen floor. Then Jonah needed help sewing his new pillow. Then I left to get Ella from camp. Grandma took the three boys to Panera, where we were going to meet for lunch. On my way over, Grandma called me so that I wouldn't freak out when I saw the scene. Aidan had pinched his finger really badly in the bathroom door, and was wailing his head off. They were sitting outside on the sidewalk in front of Panera, Aidan screaming, with a bag of ice on his hand. Pinching your finger that badly really does hurt.

I held Aidan close to me while Grandma took the other kiddos inside to try and figure out what to eat. The Panera manager came outside to make sure Aidan was ok. She said there was a place right across the street where they could do an X-ray to see if he had broken his finger. She asked AIDAN if he thought he should go get an X-ray. He nodded at her through tear-leaking eyes, and said in a wobbly voice "Yes, I think I need an X-ray. I think I'm dying." 

I had already done my Mommy Emergency Assessment and knew that there were no broken bones. I said no, we're not going to waste time and money and energy and tears going to get a needless X-ray. Believe me when I tell you, I'm sort of an expert on pinched fingers. I do have four little children, after all. So Aidan wailed at me with anger because he felt certain he needed an X-ray and I had foiled his plans. 

We decided eventually that Aidan was ok enough to go in and try some lunch. My family was milling aimlessly around. They hadn't ordered yet and Jonah was having a snit about something. So lunch was completely chaotic. We got food in front of people, some ate, some didn't. I didn't even order until everyone was almost done, and took my food to go because who knows when I'll have time to eat some days. Ella cried through part of lunch because she had some owie that seemed imaginary to me, but I'm sure was real to her. Aidan continued to cry through parts of lunch too. Jonah was irritable through all of lunch. Ben felt so badly about being with Aidan when he pinched his finger, that he kept trying to find ways to comfort Aidan. I just held Aidan on my lap and tried to feed him soup. And get the lunch over with as soon as possible and get the heck out of there, because it was a disaster.

On the way to the car, I apologized to Grandma for the chaos. We laughed and she said "It's not like this every day, is it?" I didn't know how to answer. Because most days are like this. Some are even crazier, some are better because we don't have as many injuries, but every single day is just nuts. My days start at 5:30am and since the kids don't take Clonidine anymore, they go to bed later. So my day ends about 9pm. I get about one hour to myself every day. Literally. Because there is always someone who needs something-- a shoe tied, a butt wiped, a snack, vomit cleaned up, a toy fixed, a lost thing found, a book to be read, a back to be patted, a bandaid to be found, sunscreen to be put on, a bike tire to be pumped. There is always something fun I want to do with the kids-- make glitter clay, play with shaving cream, go to the pool or the zoo or the library or a park. And of course you have to make sure the kids have at least one clean shirt and pair of shorts, make sure they take a shower or bath ONCE in a while, make sure they are fed, make sure the dishes get washed and the dog gets fed and walked, give everyone all their meds twice a day, we get to all our therapy and doctor's appointments, and change those pee sheets every single morning. Throw in a few dozen fights you have to break up, a couple of intense ragey moments that you have to de-escalate, a hundred or so irritable moments that you have to diffuse and redirect, and many "I'm bored" hours that you have to navigate. And when you finish doing all those things, there is exactly one hour left in the day to do anything you want. And by that time, I'm so completely exhausted, I don't want to write, or read, or talk, or think. So I watch a mindless TV show and crawl into bed. So I'm ready to do it all again in a few hours. 

This is why I neglect my brother and parents and friends and neighbors. It's not that I don't desperately love and miss them. It's not that I don't feel lonely. It's that I am so completely and thoroughly exhausted, I don't even have the energy to speak. This week has been especially tough because Alex has been gone, but every day is like this. I love to be with friends and talk to my family on the phone and blog and read and paint…I just am too tired. Being a single parent, even for a week, is exhausting. Being a single parent of four kids who have special needs is…there isn't a word for how tiring it is. Of course we've had special, beautiful moments this week too. But boy, am I tired. 

Alex is due home tonight. His first flight got cancelled. He got on a different one. Which got delayed. We'll see when he actually gets home. Meanwhile, I'm just praying for energy. And patience. And thanking the sweet Lord in Heaven that I am not a single parent all the time.

Tuesday, July 8, 2014

Down Two Meds

After school ended, Alex and I decided it was the right time to take Ben, Jonah, and Aidan off some of their meds. We want to test and see if the boys really need the meds, or if we can do without them. I discussed this decision with all of the boys' therapists and our psychiatrist before we changed anything. We've put a lot of other kinds of supports in place that will help the boys as they get off some of their medications, so we felt like it was time to give some changes a try.
 The first med we got rid of was a medication that helps the boys sleep. When Ella went through her whole sleep study period, I learned more about sleep, and realized that all our kids may be "short sleepers" like Ella is. She is one standard deviation away from the norm of how much sleep most kids her age need. She just needs less sleep than other kids. (Mama wasn't too happy about this, for selfish reasons.) So maybe the boys are short sleepers too, and have anxiety about sleep because of a lifetime of being forced to try and sleep when they just can't. We decided to test life out without the medication.


To ease the boys into life without sleepy drugs, we have been using Melatonin to help them feel sleepy at night. Otherwise we learned the hard way that they don't feel tired, which leads to them getting anxious about not feeling tired, which leads to them totally freaking out about not feeling tired, which makes their adrenaline go nuts, which REALLY makes them not tired. So Melatonin it is, at least for a little while. I feel like Melatonin is a lot different than the drug we were using before for sleep, so I feel like it's ok to use this to help the boys during this transition period.

So far, the boys stay up later than they used to. They don't feel the exhaustion that the drug used to induce every night. Because they don't "feel tired," they thought they shouldn't go to their beds and start getting ready for sleep. We've had to start training the boys to know that at a certain time, it is time to lay down in your own bed, turn off electronics, and just relax. Maybe read, or listen to calm music. Just because they don't feel completely drained and exhausted does not mean their bodies are not ready for sleep. I hadn't realized we would have to do some teaching about this. It still doesn't come naturally, especially to Ben and Aidan, the whole bedtime "feeling." Jonah is getting it- he can tell when he is feeling tired and ready for sleep. The other boys will get it I'm sure, it just takes some time to relearn these things.

Not having the boys crash every night has enabled us to have more relaxed evenings as a family. We can take evening walks with Ollie, we can go for a bike ride, Mama can go grocery shopping while Daddy stays home to play, it's just a lot less rushed. So that's the benefit of no sleepy meds. The downside is that Alex and my evening routine together has had to change. It has now been infiltrated by children. The other night the boys were all in bed, but Miss Ella I Never Need Sleep was still up. Alex and I had ordered pizza as a special treat. Ella was very indignant that I always say we can order pizza for the kids sometime and we never do because I forget. She had a stinky little meltdown over it. Because it was late and I was tired, I picked off all the mushrooms and olives from a piece of pizza and let Ella eat it with us while the three of us watched "White Collar." Which is a grown up show and I'm sure she didn't follow any of it, but there was nothing inappropriate so it was fine. At one point, Ella leaned over to me on the couch and said "I like this show." Yeah, I'm sure. 

SIX pieces of picked-off cheese pizza later, my sweet daughter was feeling sleepy and ready to snuggle. "With Dada, because he rubs backs better." 
The other medication we took the boys off of is their med for ADHD. For a long time I've been wondering if the boys have true, classic ADHD, or just symptoms of ADHD because of their Tourette's Syndrome. Executive functioning can suffer when you have TS, sometimes you can't focus, organize, or plan. Maybe the boys don't have actual Attention Deficit Disorder. The psychiatrist has voiced this thought. The boys' counselors have expressed this concern to me. I've researched about TS and seen that this could be the case for our boys. Teachers do not report that the boys' focus and attention are much improved with the increase of ADHD meds. I don't see much improvement at home with behaviors like impulsivity when the boys are on the medications. So we just decided enough is enough. Let's take the boys off the medications and just see how it goes. 

The psychiatrist talked about how there would be some withdrawal. There could be some more behavior issues than before. There could be some emotional backlash for the boys with our decision to take away meds. He wanted to make sure I was up for the challenge and knew what I was getting in to. And he was, surprisingly, very supportive of my decision. Before I talked with the psychiatrist, everyone kept saying with horror "Oh, you're going to have to talk about it with…the psychiatrist." Psychiatrists have a reputation of pushing meds, regardless of whether the need for them is real or not. Thankfully, we have had two pediatric psychiatrists during this journey who have both been willing to listen to me and take my voice and opinion into consideration, then give me advice about what to do, and let me make the final call. Frankly, if the psychiatrists were not like that, I would not work with them. I know my boys the best, I should get to make decisions about their mental, physical, and emotional health. With the guidance of a well-informed doctor. So luckily we have been blessed with doctors who work with me, regardless of whether they think I'm a bit loony. I went into our appointment with confidence that I was making the right decision. (I'm sure after our appointment when I announced I was taking my three boys off their meds that help them sleep and keep them focused, that psychiatrist had a very good laugh at my expense. Three boys. No sleep. Kooky ADHD behavior all summer. Like that'll last.) So I appreciated our psychiatrist's reaction. And he said I was very brave. (I'm sure he meant 'crazy'.) 

So we've been handling several weeks of fewer meds. There have been bumps along the way, of course. Sometimes that ADHD behavior really gets ramped up and it's hard to calm kiddos down. Sometimes we haven't done the Melatonin at the right time and kids are up until ungodly hours. Sometimes impulsivity has been more intense than before and I really have to keep a closer eye on all the kids, from old to young, than I had to before. Sometimes tantrums and meltdowns and rages are intense. Short-lived, usually, but intense. Sometimes I want to pull my hair out because AS I'm answering one question, the child is asking me four more. So yes, things are a little more intense. A little more challenging. But I'm up for it.

These things have surprised me, but also sort of delighted me. My kids are hanging in there without two of their meds. Our life isn't turning upside down. It's challenging, but we're doing ok. Now I have to make changes and plans that I didn't have to before in order to help the boys with the "extra" things they are thinking, feeling, and doing. I have to be more watchful and prepared. I have to think outside the box for ways to help the boys calm down, stay healthy, be active, stay happy. But I knew it would take some creative work on my part in order to successfully get the boys off some meds. So I'm ok with all this. 

We have tried some "alternative" ways of supporting the boys since taking them off some of their meds. Some holistic, safe, beautiful ways of supporting them. We've been doing a LOT of energy work. Some of the kids get Zero Balancing, which is a form of energy work. We've been supporting their immune systems through supplements, helping them maintain their calm brain and moods through fish oil, vitamins and herbs. The kids see the chiropractor to help with bed-wetting and to keep all their bones where they should be. When someone is all worked up in the evening, they take epsom salt baths with lavender essential oil. We have essential oils that have a calming or grounding effect diffusing in the kitchen almost all the times. There are essential oil blends in my cabinet to help with symptoms of ADHD. We try to eat a gluten-free diet. We don't do soda or lots of sugar. We try to eat organic when we can. We have different kinds of milk in our fridge than we used to- milk made from almonds and rice. We stay active. We try to reduce the kids' screen time. We try to stay positive, patient, loving. (Do we lose our cool sometimes? Of course. But we still keep trying.) We try to meet each child's needs as best we can. We have a bunch of kiddos, so this isn't always perfect. But we do the best we can.
I know there are a lot of people who may think these alternative methods of helping our kids won't work. But a lot of people think meds also don't work, or that you shouldn't put your kiddos on medications. I understand skepticism. But I also believe that you have to do what is right for your family. And I believe in all the things we do with the kids, and I can see the difference with the alternative things we've chosen. The bottom line is that none of these things we're doing have any side effects or negative consequences, unlike medications and drugs (which the boys still do take for anxiety and mood stabilization). Essential oils and energy work, among all the other things we're doing, can't hurt the kids in any way. So why not try? I'm willing to be considered a bit loony and quacky. Who cares. You never know what thing you might stumble across that might help your child in some way, and that is all I'm looking for. My goal is just to help the kids have the best, happiest, healthiest life possible. 

The adventure continues. My goal has always been to have the kids get off medications, any or all, at some point in their lives. I want them to heal whatever is happening in their little bodies, not just mask the symptoms with drugs. So even though in some ways this summer is quite difficult, I'm feeling happy and content knowing that the boys now take way more vitamins and supplements than they do medications and drugs. We're doing the best we can. That's all you can do.

Wednesday, July 2, 2014

Tourette's Camp

Last week Aidan, Jonah and Ben went to camp. Tourette's camp. It was a week where you could stay overnight if you wanted to, or if you lived close enough, your crazy Mama could volunteer to transport you to camp each day at the crack of dawn and pick you up each night at Mama's bedtime. 
My boys, of course, chose the latter. Although Jonah stayed two nights and Aidan stayed one!!

Which was fine. My intent was that they be successful at staying at camp each day, try new things, make new friends, and see that there are kids in the world who are a lot like them. They are not alone in their tic-y-ness. 

And I would have to say, Mission Accomplished. The boys had a fabulous week. They made new friends. They swam and went out on boats and did tie dye and played a million games. They got all the blood sucked out of their bodies from mosquitos and they got a lot of sun. They had a true, beautiful, wonderful camp experience. With the safety of Mama picking them up every night. (To give credit where credit is due, Daddy did pick them up one or two nights. I can't remember how many. It's all a blur because I was sleep-deprived.)

The first night when I came to pick the boys up, I was met with a roomful of sweaty, happy, painted kids, all lined up to get their nightly meds from the nurse who was on staff all week. I sat and waited for my boys to arrive, and watched the beautiful, chaotic cacophony of so many ticcing, boisterous, joyous kids. And when my boys did arrive and lined up for their meds, they were just part of the youthful chaos. Almost everyone got meds. It was normal to line up to see the nurse and get your pills dumped into your hand and a tiny cup of water. No one hesitated or felt weird because they took medication. It was normal. My boys were normal. In that group, my boys were just normal. It was a wonderful feeling to watch that. I know my boys probably didn't soak that in and understand the magnitude of that moment, but I know they felt like part of a group, part of a whole, and they saw they were normal in that group.

The boys came home each night with stories of adventures, new friends, people from far-away places, and who has which tic. Since camp, any time Ben does anything that annoys someone, he says "Sorry. It's my tic." Even when it's clearly not. He also has been experimenting with tics, trying to see what it feels like to stutter, or blink a lot more than he already does, things like that. At camp, there were kids with obvious tics and other things associated with Tourette's, and kids who you would never know had Tourette's. Sort of like our boys- sometimes their tics are very apparent, other times not so much. And every single child that I came into contact with (I ended up being at camp a lot) was so polite, and kind, and respectful, and just downright cute.

The first morning when I dropped off the boys, there was a small boy who was Aidan's age waiting for his meds. This boy was in Aidan's cabin and they became great friends. He was the sweetest, kindest, most polite, adorable little guy. He reminded me exactly of a dark-haired Aidan. The night the boys left camp, Aidan and his dear friend came in the door of the cabin, both teary-eyed and the friend was actually sobbing. The adults rushed over to see what was the matter, but the counselors assured us that Aidan and his friend were just heartbroken to be leaving each other. It was the sweetest thing I've ever seen. I told the boys we'd get each other's info and they can stay in touch over email or phone. That made them feel better. So they went to get their meds together. It was just such a typical Aidan Moment, and I was so happy that he met a kindred spirit at camp- someone who feels as deeply as he does about friendship.

My children only lost approximately 37 items while at camp. Pretty good, for them. We went over to camp today to dig through their mountain of Lost and Found treasures. We were able to find a lost sweatshirt, a flashlight, and a pair of sneakers! It was a very successful hunt. The stuffed raccoon that Aidan bought at the camp store has been located at home with a friend, so that was a relief. 

Aside from mosquito bites, the boys had a perfect week. They came home happily exhausted every night. The camp staff were so incredible in how they closely supervised the campers, how they were compassionate and kind, how they were fun and energetic and put up with a lot. The week was well-organized and I actually felt safe leaving all the boys' meds for someone else to deliver to them--that's saying a lot. I could tell that nurse had the med thing totally under control.  As she and I organized the boys' meds, I said "Wow, I'm in awe of you." She gave me a high five and said "No. I'm in awe of YOU! You do this every day!!" She was awesome. I told her she had it easy- I took the boys off two of their meds just weeks before, so it was a whole lot less complicated than it used to be! It was so strange not giving meds for a week! 

I'm grateful that our boys got to experience something so unique and inspiring as this week of Tourette's camp. It was great for them on so many levels. They can't wait to go back next summer!

Tuesday, June 10, 2014

"It's My Tic, Get Over It"

Aidan has some new tics and compulsions that are making life quite interesting. A couple weeks ago, I noticed Aidan was smelling everything. Everything. I didn't say anything about this because strange things happen in this family every day. Out of the blue, Aidan stated that he needs to smell everything. When I hear these "interesting" things from my kids, I take it with a grain of salt. I say ok, that's unusual, thanks for letting me know what's going on with you. Sometimes these quirks stick around awhile, sometimes they're just a temporary thing. You never know.
Apparently, smelling everything is a quirk that is sticking around. It's been a couple weeks, and my little boy feels like he has to smell everything that comes into his focus. He smells his hands a lot. He smells walls. He smells paper. He smells the dog. He smells chairs. He smells everything. 

When Aidan got home from school yesterday, he came up to me to give me what I thought was a hug. I was touched. What a sweetie, wanting to hug his mama after a long day at school. But no. Actually he just wanted a good sniff of Mama. So I laughed and hugged him anyway and said since he got to smell me, I got to hug him. Then he went around to Daddy and gave him a hug/sniff too. I'm not opposed to hugs with an ulterior motive of smelling. Bottom line, I still get a hug! 

Last night, Aidan was roller blading in the house. Jonah came up from the basement. Aidan rolled over to him with his arms outstretched and said "Huggy!!" Jonah walked over to hug his little brother. Aidan paused and said "Just so you know, I'm going to have to smell you." 

When I took Aidan and Ella to swimming lessons two weeks ago, they went leaping and bounding through the parking lot, like the human gazelles that they are. When we came to the pillars in front of the gym where they take lessons, Aidan climbed up next to each pillar and gave it a good, long sniff. I tolerated this without saying anything. I try to be patient and understanding as much as possible. 

It took a while to get into the pool area because of all the smelling that had to happen first. When we got to the door of the pool, Aidan had to stop me from opening it so he could smell it. There were parents and kids everywhere, people watching, people trying to get ready for swimming lessons, and I admit, I got a little frustrated. In exasperation, I said "Aidan! You have to stop smelling everything!!" Trying to herd two carousing gazelles who have to stop and smell everything they come across (Ella has to smell many things too because she wants to be like Aidan "because he is cool and I love him") through a parking lot and into a busy gym is no easy feat. 

Aidan stopped smelling the door and looked at me calmly. He said "Mom. This is my TIC, and YOU just have to get USED to it."

So there. 
He was right. In therapy, we've talked about how Alex and I need to look at a challenge and figure out whose problem it is. Is it a problem for Aidan that he has to smell everything on God's green Earth? Not really. He understands that it's a tic or compulsion, and he's not too bothered by it. Is it a problem for me? Sometimes. So I do just have to get used to it. With Tourette's, there are tics and compulsions that come, and drive me a little nuts while they're here, and then change or disappear altogether. This family is a constant cacophony of interesting sounds, movements, and obsessions. I wouldn't have it any other way because it makes life super interesting. Once in a while I do wish it was a little quieter and calmer, without the sniffing, grunting, whistling, screaming, touching, blinking…oh that's another thing that has come for Aidan this past week. He has a blinking tic that is pretty intense. Exaggerated blinking, I call it. Sort of a grimace-blink. Again, doesn't bother him, so I realize if it bothers me, it's my problem and not his. So I will deal with myself and my problems accordingly and not bring Aidan down with my annoyance. 

When you love someone who has Tourette's, you learn that you don't need to say anything about their tics. Either they know they are ticcing, and it's very irritating for them and they desperately wish they could stop, or the tic doesn't bother them. Either way, having other people draw attention to it doesn't do any good. 

I love the story of when we were all sitting down for a family dinner, and every single one of my dear family people had some sort of tic. Even Ella. Then Alex discreetly, silently, mouthed to me that the kids' tics were DRIVING HIM CRAZY. I laughed so hard. Because he has more tics than any of them sometimes! And the kids' tics were driving HIM crazy? Try being ME!! Living in a house full of wonderful, unique, obsessive ticcers. 

Ah, Tourette's. You make life so…interesting. If you take it too seriously, it'll drive you nuts. So we just try to laugh and see the lighter side of things. Yep, I have a kiddo who has to smell everything as he blinks and grimaces. Who else can say that? Who else has that experience? Who else gets to see the world through such a unique vision? Who else gets to wonder what a cereal box really does smell like, anyway? Or a stop sign? Or the railing going upstairs? Or the van door? Or the mailbox? I never thought about what these things smell like until I saw Aidan smelling them. 

Having Tourette's makes life challenging sometimes. But I love Aidan's attitude about it. It is what it is, and it doesn't really bother him. He knows if it bugs other people, that's their problem, not his. I hope he always has this confidence in himself. I hope he can hang onto his beautiful spirit no matter what challenges come his way.

 

From Corn-Up-The-Nose To Kindergarten

The past couple weeks have held many changes for our family. My baby graduated from preschool.
Graduation night Happy Dance
In the past, every time I have a preschooler graduate to Kindergarten, I console myself with the fact that I have another baby left to go to preschool. Not this time. This is the last time I'll have a preschooler graduate. There is a shift coming in our lives. Actually, it's already arrived, this shift. I noticed this past school year that many other preschool moms had other little people in tow- younger siblings who will console their mamas when their big brothers and big sisters go to Kindergarten. Then I noticed that I don't have any other little people. Ella is my last little person. I know this shift comes eventually in every family, but it will take a little while for me to fully come to terms with the fact that my smallest little person is now going to be riding a school bus every week day to Kindergarten. 


*sigh*

Motherhood is hard. I've spent so many years teaching my sweet children, baking with them, playing with moon sand and playdoh, taking them to the park, taking them to preschool, hugging them when they get a boo boo…and now I'm supposed to just put them all on school buses and say "Adios. See you in 8 hours. Hope you find someone else to kiss your boo boos if you fall on the playground." 

*sigh*

Motherhood is hard. I'm going to miss spending my days with my enchanting littlest person. She is (mostly) a joy to be with. Of course there is something to be said for the ease of running errands without strapping a kiddo into and out of a car seat a hundred times. And I can go to the gym without anyone whining about being left at the day care. And I can walk the dog without anyone chattering behind me the entire way. But I will miss all those things. I will miss seeing the world through my little person's eyes as we spend our day living life together. There are good and challenging things about every age, and I'm happy that my kiddos are all growing and learning and changing. A piece of me is just selfishly sad for myself. 

Ella had her Kindergarten screening this morning. The last time we went to a Kindergarten screening was for Aidan, three years ago. Ella was 2 at the time. The week before Aidan's screening, we had had one of the boys' friends over for dinner. Alex had to work late. While I walked the 5 steps from the table to the kitchen to load up a plate with a second helping, little Ella had stuffed her left nostril full of corn kernels. None of my kiddos have ever experimented with putting objects into bodily crevices, so I was shocked when I got back to the table and glanced at my darling and saw yellow sticking out of her nose. I got one kernel out easily. The boys made Ella laugh and another kernel shot out. I peered up her nostril and saw more yellow, and couldn't get the remaining corn out. So I called the doctor. The nurse on the phone asked me condescendingly how long I had been away from the table, that my daughter was able to get that much corn in her nostril. Thanks, like I needed more guilt. 

Ella spent that night with two corn kernels in her nose, happy as can be. The next day we went to have the doctor extract the food from my child's shnoz. He got one kernel out with a device that looked like it should be in a torture chamber, while I held Ella still and she screamed. The doctor could not get the other snotty, slimy piece of corn out. He tossed around the idea of going to the hospital. He sprayed Ella's nostril with steroids to get the swelling and inflammation to go down, and was finally able to get the corn out. 

For the next week, Ella told everyone she met "Cown. Nowse. Doctah. Icky."

When we went to Aidan's Kindergarten screening, Ella stuck several pebbles from a decorative plant up her nostril. You'd think she would have learned. She didn't. Luckily I caught her before she could stuff too many pebbles into her tiny nostrils and I was able to get them all to come out. Without doctor intervention. 

So that's what I thought about today as I watched my almost 5-year-old girl walk into a Kindergarten classroom. Without anything stuck in her nostrils. When the screening was over, the woman who tested Ella pulled me aside in the hallway. She said she was a speech therapist, and that Ella would be screened in Kindergarten for speech because she has some "issues." I said I know, and that Ella is getting weekly private speech therapy. Instead of therapy this summer, she will attend a therapeutic day camp where she will receive OT, Speech, and counseling. The woman said this was all very good, and that they will take a look at Ella in the Fall and see if she needs some additional intervention. 

For some reason, this brought my heart down to my feet. I know about Ella's challenges. She gets therapy for them every week. This is not a surprise. But to hear from a stranger that yet again, one of my children has some "issues," I don't know why but it totally bummed me out. She said Ella did fantastic on the screening, she was lovely, blah blah blah. I know all that too, and all that is true. Ella is wonderful and smart and just lovely. But as the day has gone on I haven't been able to shake this weight of rock in my heart. Ella's speech problems aren't too big, even. But it's enough to warrant getting extra help at school. In the grand scheme of things, this is really no big deal, so part of me is frustrated that I feel so low about this. We have many bigger challenges to face every single day, this one is a piece of cake, I keep telling myself. But I can't shake the heaviness.

I guess it comes back to the fact that when you hear your child is struggling with something, or isn't developing typically, or has a delay or deficit, it makes you sad. And even though this speech thing isn't a really big deal, it's a big enough deal to make me feel like grieving a little bit. It's a big enough deal that Ella will have extra help in school because of it, in addition to our private therapy. So like I always do, I'm giving myself grace and space. Grace to not beat myself up for feeling sad about this. Space to just be and not rush through the grieving that I have to do.
We've come a long way in the past three years. I no longer have a toddler who experiments with putting objects up her nose. I have an enchanting, intuitive, lovely Kindergartner. We'll get through all this the way we get through everything- one breath at a time, one step at at a time. With a little grieving and a whole lot of rejoicing along the way.

Friday, May 16, 2014

Here's To The Wavers

My second grader had a concert at school a couple weeks ago. It was one of those moments where a parent feels really proud. Aidan had been practicing his pirate songs for weeks. In the car. In the family room. With his little sister as his sidekick. In the bathtub. He was ready. I always wonder in these situations if Aidan's anxiety will rear its head and cause panic when having to be in front of a crowd of people. He even had a little part where he had to say "Arr, ye scurvy dogs!" with two friends.


As the kids filed into the stuffy, humid gym that was packed with families, I scanned the lines of pirates for my own little matey. As he walked in, Aidan looked through the bleachers for us. When he made eye contact, we both waved at each other frantically. My mom used to tease me because whenever my younger brother performed his trumpet on stage, I would wave like a crazy person from the audience. I was bursting with pride on his behalf. There was my little brother, on stage, playing like a professional. Doing something I could never dream of having the talent to do. And I was so proud. But my exuberance was possibly a smidge embarrassing to my parents. I think it's fun to be the mom now, because I can wave until my arm falls off and I won't embarrass anyone because my kids are waving at the other end just like I'm waving at them. 

I almost fell out of my seat, waving at Aidan. I was so proud of him. He made it to his bleacher with his friends. I took a moment to rest my arm, and glanced around at the other families. I just about burst into tears because of what I saw. There were so many arms, waving frantically in the air, just like mine. There were cameras snapping. There were parents jumping around trying to get their kid's attention. I was among fellow child-admirerers. I just sat there and felt the energy of all these mamas and daddies and grandpas and grandmas and sisters and brothers, all so proud of their pirates. All waving like crazy people at their babies. It was wonderful. It made me feel warm inside, knowing that I was among fellow Wavers. 


Aidan also had a Mother's Day program at school last week. Two years ago, in Kindergarten, he had a rough time during the Mother's Day Tea. I struggled too. This year was very different. It was so much fun to see how far Aidan has come in so many ways. He sang songs with his class for the moms, and then each child had a little poem for their mom that they read out loud in front of everyone. I was prepared for whatever Aidan could do that morning. If he did it all, wonderful. If he couldn't make it through what was expected, that was going to be fine too. But my little guy did it all! He read his poem with pride and then presented me with some treasures he had made for me. The whole thing looked similar to what all the other 23 kids in his class did, and if you didn't know Aidan two years ago, you wouldn't have known what a huge deal this was. But it was huge. He made me so proud, just knowing how hard he's worked on all these things to get to this point.

Yesterday in the waiting room at therapy, a little girl who I know pretty well came up to Aidan and asked me what his name was. She said "Name?" I said his name is Aidan. Then she turned to me and in her sweet fairy voice said "What's your name?" I told her it's Carrie. Then she walked away, content that she had her answers and ready to move on with life. Her mom turned to me and said she has never, ever heard her little girl say the whole sentence "What's your name?" before. She always says "Name?" What I had just had the privilege to witness was monumental for that little girl and her mama. It was huge progress. It was the result of so much work, so much therapy, so much love from the girl's mama. I told my friend that I had goosebumps. I told her how I know exactly how it is to see your child progress in leaps and bounds, and no one else in the world realizes it because it's such small progress. But you know where your child started and how far they've come. You know that whole sentence represents a huge, huge victory. I know Aidan's Mother's Day program is a huge, huge victory. I was so glad my friend told me about her daughter's sentence so that I could celebrate with her. So often I celebrate alone, which is fine, but it's much more fun to celebrate the little things with someone who really understands how enormous those things are to us. Us mamas who wait, watch, hope, love, and do everything we can to make sure our kiddos have the best life possible.

Here's to the little things that change a mama's world every day. Here's to the waving arms of proud parents. Here's to the exuberance with which I celebrate all my kids' incredible achievements, big and small.