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Friday, April 24, 2015

"A Leader Must Remain Vigilant"

Lately, I watch my four little ones get on their respective buses with dread. I have a gaping pit of Worry in my stomach. Which school will call first today? Who will be sick? Which kid will do something wrong today? Which kid forgot something that I need to drop off? Which kid will do something that requires yet another mom to come pounding on my door, screaming about some wrong my child has committed against hers? Which teacher will email me a list of work my child hasn't turned in? Which teacher call with concerns about my child's behavior, lack of focus, or interventions that aren't working?

Dread.

It's been a week of the unexpected. One of my dears got in big trouble at school. It was for something that's really not that terrible, but I understand and support the school being tough about even little misbehaviors. It's hard to have to get a phone call from a teacher, listening with embarrassment and disappointment as she describes what your son has done. It's really hard to know that this little boy has so much trouble with monitoring his behaviors and thinking through consequences. And if you do something wrong in the outside world, you have to pay the price. Even when that brings even more anxiety to your already anxious heart. Mama can't fix everything. Sometimes a kiddo has to learn the hard way that there are real world consequences for things, even when you have ADHD and are very impulsive. I was mostly disappointed that my little boy had done what he had done because I worry about his tender soul being crushed even more by the real world. 

I had to advocate for one of my other boys for many days, over many emails, because I felt a teacher was doing something that she shouldn't be doing in regards to his accommodations at school. The teacher, to her credit, was very patient and didn't get defensive, even when we were disagreeing. And she did eventually see where I was coming from and I did eventually help her to understand things from my boy's perspective, and she did do the right thing ultimately. But man, these things wear me out. I feel like I always have to be on guard. Like Robin from the show "Teen Titans" says, "I am the leader. And the leader must remain vigilant." Amen, brotha. Being vigilant is tiring. I wouldn't ever stop being vigilant, because someone has to be. But the things I have to be vigilant about, times four, is remarkable sometimes! Meds, homework, IEP's and 504's, tummy aches, head aches, med refills, activities outside of school, time on electronics, who needs which therapies, daily self-care: tooth brushing, bathing, dressing, shoes, every minute detail has to be reminded and overseen by the Leader. Meaning Mama. Mama must remain vigilant. 

My therapist asked me recently what would happen if I let up a little bit. If I didn't stay so constantly vigilant and just let some things go. I laughed and said our world would fall apart!! I laughed because I realize that it wouldn't fall apart. That's just my perception of things. If I am not on top of everything and juggling all the millions of balls in the air for this family, things will drop. Things will get missed. Things will fall apart. I'm not a control freak, don't get me wrong. When Ella "helps" with laundry and puts things away all mish-mashed into drawers, I am truly grateful. I don't care how things get put away, as long as they're put away. When we have a babysitter - that one time a decade- my instructions are simple: as long as my children are alive when I return, I consider the babysitter to be a success. I don't care what the babysitter does; if she doesn't clean up anything, if she lets the kids jump on beds and eat jelly beans until they're sick, if there are puzzle pieces and glitter strewn across my entire house, if they don't fall asleep when they're supposed to…I don't care as long as they're alive and relatively healthy when I get home. I don't care if Alex loads the dishwasher differently than I do. (I do have to admit, when he switched the places of spoons and forks when putting them away in the silverware drawer, I did switch them. But I swear, I'm not a control freak!!) I'm just grateful when he has time to do it.

I do think that if I didn't stay vigilant in all areas, we'd get by. But things wouldn't go as smoothly. I think ahead in every situation and try to foresee what will be needed. What will the children I'm picking up after school for therapy need in order to not have meltdowns? What do I need to bring to swimming lessons in case the kids are hungry? What do I need to stash in my purse for church to soothe noisy, restless bodies? Whose meds do I need to refill and when? If I don't stay on top of things, nobody else will.

This week, meds seem out of whack for some boys. One boy is having a whole lot more tics, and I'm sure it's a side effect from his meds. Some boys seem much more impulsive, which is leading to increased mania, anxiety, and more rages. I can't predict what one of my boys will do when he's in this mood. I don't know what to expect. This week he wasn't acting appropriately out in public, so he had to stay home from the youth group meeting at church. He was furious. Not getting his way is one of his very biggest triggers. He wants what he wants when he wants it. Even though he should have grown out of this need for immediate gratification years ago, his brain hasn't gotten to that point yet. So we work on it. But he couldn't have what he wanted on Wednesday night. So we had a big rage. As I held the boy who was raging on the floor, I told Alex and the other boy to just go to youth group. One boy shouldn't be punished when the other boy is having trouble. Alex asked if I could really handle the situation. I said yes. I wasn't sure what would happen, but I was sure I could handle it. Aidan was asleep on the couch and Ella was playing on the laptop. I could handle the boy on the floor. 

I'm alarmed at my son's level of impulsivity right now. I wasn't sure if he would run out of the house and try to drive a car to youth group himself. He said he was going to ride his bike there. I wasn't sure if he was really going to make a run for it, and try to bolt the whole, long long way to church. So I held onto him on the floor until he stopped freaking out. It's frightening to not know what your child is capable of, because meds aren't working right or brain chemistry is off because they're sick, or they're having a manic episode. It's scary. I've been driving the kids and had to pull over because things are being hurdled at me from the back seat, or a boy is beating up a sibling where I can't reach them. I've had kids unbuckle mid-drive and try to escape from the car while it's moving. I've had kids threaten suicide, and threaten to kill me. (Not that they would do either of these things, but they still have threatened.) I've had to break up some pretty hefty fights between kids. I've had to duck as plates have been thrown across the room. I've been slapped while trying to help with homework. I've had to do so many things that many parents don't ever have to even contemplate. These things happen because my children's brains are not working the way brains are supposed to work. They don't want act this way. They hate themselves when they act this way. So then as a parent, not only do you have to discipline for these actions, but you have to also tread carefully so you don't damage their already-fragile spirits. Because they have enough self-hatred to punish themselves for a lifetime.

People ask me all the time how I do it. I think that's a silly question, honestly. As a parent- any parent of any kind of kiddo- you do what you have to do. To stay vigilant. Because you are the Leader. I am the Leader of this crazy clan, and I wouldn't have it any other way. (Alex is our co-pilot. He also stays vigilant. It just sounds more cool when I write that I am the Leader. But he is the co-Leader. And I would be lost without him. Just so we're clear.) 

When your kids suffer from ADHD and Bipolar and Tourette's, you never know what your day will hold. You never know what sort of trouble you'll be fishing them out of this day. I try to make the best of it. To teach when there are lessons that come our way. To support and encourage and not let the world crush their sensitive little souls. To be a soft place to fall when the world is hard. And when they all walk up the steps of the bus every day, I breathe a prayer that they all make it home safely without too many bruises to their bodies or spirits. And once in a while I let a few tears fall after the buses pull away. Tears for the difficulties I know my four face every day. Tears for the cracks of weakness I need to let out but don't want my four to see. Tears for what has happened this week so far, and the dread of what could happen today. Tears of worry that my four babies will be ok out there in the hard world where people may not understand their disabilities. Be kind to my babies today, World.

Wednesday, April 22, 2015

The Important Things

You know what's funny about my kids? Even though we've gotten ourselves out of Crisis Mode, even though everyone is pretty stable, even though meds have been tweaked and therapies have been added, and we're not falling apart anymore, there are still little "quirkies" that remind me on a daily basis that although my kiddos appear "normal" on the outside, they have a lot more going on in their little brains and bodies.
For instance. One of my darlings has been sick a lot frequently. This particular child truly believes he may die if he gets one single sniffle. So imagine being faced with a VIRUS. The world must surely be ending. No matter how much I try to convince my darling that he is not, in fact, meeting his demise, he is filled with despair, agony, misery, anxiety, and is in a foul mood until the virus clears out. And he lets me know how miserable he is. As often as possible. He told me, as he fretted about what was wrong with him, that he was sure he had rheumatoid arthritis because everything ached. All his joints ached. And while this is pretty cute and funny, the thing you have to understand about my son is that he truly believes he probably has rheumatoid arthritis. He also convinced himself that he had mononucleosis (he says the whole word, which is adorable. Not just "mono," because that doesn't sound severe enough. No, "mononucleosis.") And he thought he most likely was having a stroke. Again, he truly believes this, which leads to heightened anxiety, which leads to irritable mood- because who can be in a calm mood when you are living with the belief that you could die at any moment? 

My son lay on the basement floor as I cleaned up, moaning "Why do I feel like this? Why am I so crabby? Why do I feel like crying? Why am I so depressed??" I love moments like these (although they are also INSANELY irritating) because they're such teachable moments. My son is just at the right point where he can understand something new about himself. I love teaching my kids self-awareness, because that is something they all lack. I talked with my boy about how when our bodies are sick, we are crabbier. Being sick makes us sad, and depressed. We talked about how this is why my son was having so many behavior problems during recent days. When he is sick, he has mood and behavior problems. That's the way it's always been. My son listened in silence. Later, he said "Mom. I think you're right about how I feel crabbier when I'm sick, because I'm sick. I think being sick does make it harder for me to control myself." 

See?? A teachable moment brought self-awareness. Next time he is sick and falling apart, I will remind him of this fact about himself, and he will begin to internalize this information so that someday I won't even have to remind him that he is sad and angry just because he is sick. It will just be part of his own knowledge about himself. I love how that works. Yes, I have to remind him of all these things over and over. But someday, he will just know it. And how cool was it that he mulled over the information, processed it, and realized that it is true- he is a bear when he is sick. 
My under-the-weather boy wanted to go out for dinner as a family to have something to look forward to that day. I thought it was interesting that he knew he needed something special to look forward to all day in order to try not to focus on how he wasn't feeling good. So we said we could go out for dinner.

One of my other darlings said he wanted to stay home instead of going to the restaurant. We tried to convince him to come with us, but ultimately we feel he is old enough and responsible enough to be home alone, so if that was his choice we couldn't change his mind. 
When we were 3 minutes away from home, this boy called my cell phone, crying and yelling. He had changed his mind and wanted to come with us. As we had pulled away from our house, he said he had been running after the van, trying to get us to stop, but we hadn't seen him. So of course this was our fault. Not his fault for adamantly saying he wanted to stay home from dinner. So we turned around and went back to get the upset boy. 
At dinner, the upset boy had calmed down. Or so I thought. But he was very irritable. Everything was making him frustrated and angry. Finally he said "You know why I'm mad? Because everything is bothering me. There are PUNS in the menu that are pissing me off! Look at this. It says 'Chili Chili' and then they TRADEMARKED that!! Who TRADEMARKS that?? And it's too loud in here. And the lights are bothering me. I can't see, the lights are too dim. And the floor is too slippery and my chair keeps skooching. And I keep accidentally kicking Mom. And my arm is sticking to the table in this one place. And WHY HASN'T THE WAITER BROUGHT MY F***ING SPOON! My shake is MELTING and I don't have a spoon to eat it with so then it's going to MELT and I'm going to have to use a STRAW."

Well. That is quite a lot. And I had no idea my son was struggling with all those things that I can easily manage. It was eye-opening. No wonder he was Mr. Crabby Pants. I would be crabby too if I was upset about all those things at once. Again, I was amazed at the fact that my son could verbalize what was going on. This is an improvement. This is progress. We've been working on this for years- not only being self-aware, but then being an advocate for ourselves and telling people what we need to feel better. And my son did that! There wasn't much I could do to help him, because most of the frustrations were out of my control. But at least I had a better understanding that his frustrations were legitimate. To him, the world can be a completely overwhelming and maddening place. He wasn't just trying to ruin our dinner out. He was legitimately having a very tough time dealing with all the sensory stimuli going on around us.
Ella and Aidan have been taking swimming lessons together for the past couple months. Lately, Aidan has been refusing to go to class. I've been able to convince him to go, using all my Mama Tricks. But last week, I ran out of Tricks that worked. 

You have to understand that Thursdays are crazy days for Ella and Aidan. I pick them up after school and we go straight to therapy. Aidan has counseling and Ella has speech and then counseling. Then we run straight to the gym where we change into swimming suits and jump in the pool for a lesson. Then we shower at the gym (which they hate and cries about every. single. week.), put on our pj's, grab fast food for dinner (I know. Bad Mommy.), run home to eat while we do homework, snuggle for a bit, and then pass out. It's not an easy day for the kiddos. I bring all sorts of yummy snacks to keep their energy running, I bring movies to watch in the van as we rush from place to place, I bring electronical devices for Aidan to play when he is done with counseling and waiting for Ella to finish her counseling. I do everything I can to stay calm and un-rushed, so that the kids just move as smoothly as possible through the tough afternoon. And usually we have some meltdowns, but we make it through.
Last Thursday was an exception. The first thing Aidan said to me when I picked him up from school was "I'm NOT doing swimming." And every opportunity he had from that point until we hit the gym locker rooms, he made sure to tell me he was not going to participate in swimming lessons no matter what. The teacher tried her best to convince him to just try. I tried ALL of my Mama Tricks. I mean, I pulled out the big guns. Nothin'. Nothing worked. Aidan lay face down on the bench outside the pool, fully clothed, crying. He said "Stop trying to convince me to go in. I'm not going to, no matter what you say, so just stop."

So I stopped. Aidan and the teacher promised each other that Aidan could take this week off and then next week he'd get back in the pool. So even though we've tweaked Aidan's anxiety meds, he still gets so worked up about things he can't verbalize, that he freezes and can't move on with the things he's supposed to be doing. He couldn't tell me what he was upset about. He said swimming was hard. And I know it is for him, but I also know he loves to swim. I'm sure he was a fish in another life. That pesky anxiety just gets the best of him sometimes. It's invisible, and it creeps into his spirit like a disease, turning him into someone he hates to be. 

Miss Ella has had sleep problems since she was a tiny little thing. Since beginning counseling a few weeks ago, her sleep has improved! Her anxiety about being in her bed without me has decreased. It's been a lovely interlude in an otherwise crazy nighttime drama. 

I have a couple of secret weapons I've been using in conjunction with therapy that have seemed to help Ella at nighttime. Once she is asleep, I put a rolled-up, soft blanket against the length of her. To simulate my body next to her. When I come in to check on her before I fall asleep, she's always wrapped around that blanket like she wraps around me when she's in our bed. So cute.

I also have an essential oil diffuser in Aidan and Ella's room. Once they're asleep, I sneak in and put a mixture of whatever oils they need into the diffuser and turn it on. Most nights it's Lavender and Valor, for relaxation and anxiety. Some night when one of the kids is sick, it's Thieves and Raven, to help them breathe and heal. I swear the oils work to help the kids sleep peacefully.

The last secret weapon I have is our weighted blanket. When Ella is asleep, I put the blanket over her and it helps calm her sleeping tics, and helps her sleep well. The only problem has been that Aidan has also been asking for the weighted blanket. And we only have one. So I'll have to investigate getting another one. Aidan says the blanket helps him sleep better, so it's important that we have two.

The other day, I woke Ella up for school like normal. We were chatting as she got dressed. She threw the rolled up blanket off her bed and said "I don't want that by me anymore. I always think it's YOU during the night!" 

Ha! I laughed out loud. She's on to me. I told her that that is the point. I roll the blanket up so that it reminds her of sleeping beside me, and then she can stay cozy in her bed and we both sleep better. 

When I went into her room after she had left for school that morning, I saw that Ella had put the rolled up blanket back in position on her bed. I was so happy that she accepted a Mama Surrogate for bedtime! She liked the idea of the blanket as something to remind her of me. We've really been working on Ella's separation anxiety during the past few months, because it has negatively affected so many areas of her life. And this showed me that she is comfortable being away from me at night, and using an alternative, other than Mama, to self- soothe is ok with her! Hurray! One small victory for Mama Sleep!

Ella does still occasionally come in our bed during the night, to attach herself to me. But she's not up for hours and hours anymore. She just falls back to sleep. She used to have anxiety during the night, that I wasn't even aware of, and she couldn't turn off her brain if she woke up. Counseling has helped in this area tremendously. Ella is already a much better sleeper because of all the things that we're doing to help her.

I said to one of our therapists how fun it is to have my kids, because I get to learn so many things about so many different things! Not every parent has to know that a weighted blanket can help calm and soothe an anxious, active little body at nighttime. Not every parent needs to learn how to scan an environment for sensory overload triggers. Not every parent has to know how to decode an anxious little boy's sobs when he can't explain what he's feeling because he has processing issues. I'm so lucky in that I have gotten to see the world in a totally different way because I am the parent of these amazing little people. I love to learn new things, I love to catch a glimpse into my children's reality. I am truly blessed and lucky to have the kids I have. Granted, we have tough things to deal with on a daily basis. But I choose to focus on the positive things, the tiny steps towards progress, the funny moments. Those are the important things. Those are the things that keep me going.


Wednesday, April 1, 2015

The Cheeto-Eating Squirrel


For Spring Break this year, Grandpa and Grandma took our lucky crew to Phoenix. It was beautiful. Warm, dry, a perfect place to forget our dreary Illinois winter blues. 
The kids did a little better than normal on this trip. Some things were easier, some things were still tough. The airplane rides to and from Arizona went well, except that Ella is super sensitive to air pressure changes, so that was torture for her. I had packed a bag of chewy snacks for each kiddo that they pulled out from their backpacks to help deal with taking off and landing ear pops. They also had backpacks full of interesting, entertaining activities. Which they mostly forgot about because we had TV's at each seat on the plane! TV always wins. 

The big boys were mad because Neurotic Mommy makes each kid wear some kind of identifier with their name and "special needs" or "allergies" listed along with my cell phone number. I explained to them that this year they'd all be wearing cool dog tags, and they must keep the necklace on during the entire journey to and from Arizona, just in case someone needed to know more information about them in case of emergency. Once in Arizona, they could take the dog tags off for the whole stay. I got a lot of eye rolls and sighs, but whatev. You never know what might happen, and better safe than sorry.



Some things were still the same as other years on this vacation. Alex or I had to hold Aidan's hand when we walked anywhere, especially in the airport. He's in his own little world. With all the distractions and crowds, it's easy for Aidan to lose us. He got so caught up in stepping in a pattern on the airport floor tiles that he forgot to watch where the rest of the family was going. So I held his hand and steered him through the airport while he tapped his way across the tiles in a dance only he knew the steps to.

At the hotel, we only had a few skirmishes compared to other years. It's hard every time we travel for the older boys to adapt to things that are different from home. Namely the fact that they have to share rooms, and sometimes a bed, with a brother. They complain that every brother kicks, snores, and grinds his teeth. They have to process the fact that on a vacation, things aren't like at home. Things are different and that's ok. It's part of the exciting adventure of traveling. One night Aidan and Jonah shared a bed and slept in the same room with Ben. The next night Aidan was in Ben's bed. The next two nights, Aidan escaped his big brothers and slept on a couch with Dad next to him on another couch. That made everyone happier. Except Dad, who would have preferred a bed. But we worked through it.


Aidan didn't have anxiety this trip like he has on previous travels. He didn't refuse to leave the hotel room like he has other years. The only time he had anxiety was when we went on a desert tour. We got to ride in this awesome, massive, red Hummer. We could stand up on the drive, once we got to the desert. But instead, Ella, Aidan and I sat in the farthest back seat, trying not to completely freak out. The Hummer felt like it would surely tip over as we drove up and down steep desert hills. It was terrifying. I had a rollerball of Lavender oil with me that I rolled onto all our wrists and we took big whiffs in an attempt to not have heart attacks. This wasn't such a fun time for Aidan.

Searching for turquoise
The desert tour did have other awesome aspects. We got to hunt for turquoise and gems. We saw all kind of cacti. The tour guide was full of interesting stories about all things desert-y. On the ride home, Jonah was sitting next to Aidan and in his sweet big brother way asked Aidan what he had learned on our desert adventure. Aidan answered immediately "That squirrels love Cheetos." Hm. Not the answer any of us was expecting, but a perfect Aidan Answer.

When we stopped at some ancient Indian ruins to explore, there had been a squirrel. The tour guide said he loved Cheetos, so we got a bag out of the Hummer and the kids got to take turns giving the little beggar some Cheetos. Aidan and Ella got a huge kick out of this. Apparently it was the highlight of the desert for Aidan.
The Cheeto-eating desert squirrel
The pool was, of course, the favorite activity of the trip. We couldn't get the kids out of the water once they got in. Ben and Jonah guilt-tripped me into going down the water slide, then stood at the bottom laughing hysterically as I screamed in terror the ENTIRE way down. They love to mock their poor old Mama. So glad I can amuse them.
The one down side of the trip was that Jonah and I got sick. Jonah bounced back after one day, but it took me a bit longer. I had to stay home the day the crew went to the ghost mining town of Superstition Mountains. That was a big bummer. But they told me all about it and had a great time. On the up side, I got to spend part of a whole day laying around not taking care of anyone while I healed. That was a first!

One of my favorite memories of this trip was one evening after we had dragged the kids out of the pool and made them put on nice clothes in preparation for dinner at a restaurant. We all ended up on our upstairs balcony, chatting and laughing together so easily. No one fought. No one was irritable or grumpy. No one was angry or frustrated. We just sat and talked, told jokes and laughed. It was easy and lovely. I loved being in our family at that moment. We don't often have pure happiness as a family, so when we do I cherish that time. 



I love to travel. Even though some aspects of travel are hard for my kids, I love taking trips with them and helping them learn about the world. We just help them work through all the difficult things they run into when they're not home. Someday I hope they all love to travel as much as I do. It's such a gift to see the world and to realize how much bigger life is than just us in our little corner.

I love that each trip gives our family more memories. Things like the Cheeto-eating squirrel that Aidan so adored. And all the pounds of stones, gems, volcanic rocks, and turquoise that our rock-hoarders got to collect and bring home. Families are made for making memories, and we're so blessed to be able to take trips with Grandma and Grandpa and make new memories every year.