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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!