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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.


Thursday, March 5, 2015

Rock Bottom

Have you ever really thought about what it means to hit "rock bottom"? When we hit Rock Bottom, it's excruciating. We've hit it several times during the past 12 years. Sometimes our boys spiral out of control in every way imaginable, and it's pretty much up to me, with Alex supporting my every move, to figure out how to get our family back on track. Pretty daunting.

Rock Bottom happens slowly. You suddenly realize you're not floating under the blue sky and warm sunshine. All of a sudden, all you can see is water that becomes more and more murky, which is why it's hard to find a way out. It's hard to know where you are; it's confusing and frustrating and overwhelming. As you begin to panic and flail in all directions, you fall deeper, sinking into the depths of dark, heavy water that fills your lungs and covers your body with silt. It's hard to move. You become frozen, immobilized with fear. You don't know which way to turn to escape, water fills your throat as you try to call for help. Then you feel your shins scraping against the knife-sharp rocks at the very bottom. Torture. How did you get here? You don't belong here. How could you have let things get this far? How will you ever get out now? You have trouble moving, trouble figuring out where to look for support to bring you back to the surface. Rock Bottom. It's not a nice place to be. Dark, dense, lonely, scary.

Since I always try to find a positive in the midst of challenge, I guess it's a good thing that we've been to Rock Bottom so many times. Now I know what to do when we get there. Now I know where to find help to rescue our family and bring us back to the sunshine and blue skies. The weird thing is that I never notice that we're slowly dipping deeper, heading lower and lower, until we actually hit those rocks at the bottom and I realize how bad things have become and that we need immediate help, right now. 

It's like when Ben and Jonah were toddlers. They got so many ear infections. When the infections first began, I wouldn't realize how hard the boys were to take care of and comfort, because it got worse so slowly. Finally, once it was obvious that things were very different and very bad, I would take them to the doctor. Of course it was an ear infection. They would get meds and turn the corner within 24 hours, and I would be shocked at how easy it was to take care of my little twinsies when they were healthier. The difficulty sneaks up on you. It's like how you don't notice that your child is growing, because it happens so slowly. And then one day you realize they can reach the counter! And then you realize they can open the drawer and reach inside! And then you realize they're just a couple inches shorter than you! When did that happen? Rock Bottom sneaks up on you like that.

So for months, our family has been slowly sinking. Challenging behavior, unstable emotions, anxiety, panic attacks, rages, rigidity, lack of ability to transition, sensory problems, more anger, physical ailments, illness, oh and did I mention the anger? Yeah, that, and more, has been our life for the past several months. I wondered if we were heading for Crisis Mode, but kept trying interventions in hopes that I could ward off the inevitable Rock Bottom on my own. 

My attempts didn't work. 

So now that I'm quite familiar with Rock Bottom, I mobilized our rescue team. I called our counselor. One by one we all got back into therapy. I called our psychiatrist. We dealt with some concerns I had about Ben and Jonah's medications that didn't seem to be doing what they should be doing. Each boy added another medication to deal with their bipolar symptoms. I got Aidan scheduled for a neuropsychological exam. I worked with the schools to see if they could make sure the kids didn't fall through the cracks. I reached out to individual teachers, working to make sure the boys got their work done and letting teachers know when we were struggling. I talked with our pediatrician. I got sick kids to the doctor. Over and over and over. I took Aidan to the GI doctor. I got Jonah scheduled for a neuropsych exam. I got all four kids into the therapies they need now. I got all 8 eyes checked by the developmental optometrist. I got Ella's cavity filled and Jonah's tooth pulled. And I tried to take care of my own body that is struggling to stay afloat on its own, given the lovely illnesses that it has. Oh, and I tried to still be a good wife, mom, daughter, sister, friend…

So Miss Ella. She has been struggling in a couple areas over the past few months. Her OT has seen that she is regressing in some areas, physically, that she used to not have trouble with. First we thought it was because nerves along her spine were being impinged. But then the intuitive, amazing OT realized that the nerves and muscles along Ella's spine are actually relaxing for the first time in her life. Since they have never been relaxed, they have never been used correctly. This has caused them to be weak, bringing weakness to Ella's arms, shoulders, core, and hips. This is why she freaked out at gymnastics one week recently and refused to do it. She said the warm up was too hard. I believe my kids when they say things like this, and knowing what the OT had told me, I understood that my poor little Ella was so sad because she desperately wanted to do gymnastics, but her tiny body couldn't keep up with the other girls. So I pulled her out of the program, at least for a while. She's been doing gymnastics since she was a baby, and she loves it, so this made me sad. The saddest thing was that Ella wants to do gymnastics but her body is betraying her. 

Then I talked to a friend who had the MOST wonderful suggestion. She knew of a place where an OT would do gymnastics, at the regular gym we always went to, one-on-one with Ella! It's an OT session while doing gymnastics! Incredible! I called and got Ella into the program. So now she will see our regular OT every other week, and on alternating weeks she gets to go to gymnastics and do it at her own pace! She is thrilled. She is counting the days until she starts. I can't believe how perfect this is for her. 

I also reached out to Ella's dance teacher to let her know what Ella is struggling with, and how it may be affecting her in dance. The teacher is 100% on the same page with me, supportive, nurturing, loving. She said she doesn't notice Ella struggling in class, but if she does the teacher will modify things so that Ella can keep up. She said she sees Ella sort of pull away from the other girls sometimes, and she may be struggling a little at those points, but that she joins back in when she is ready and keeps going. She is a good student, a leader, and sweet to those around her. 

I don't know how we got this incredible circle of incredible people who support us through all our Ups and all our Rock Bottoms. We are seriously blessed.

Ella is seeing the chiropractor for therapeutic massage and adjustments to help her muscles all do what they're supposed to do. The OT has already noticed some positive changes from this, so that is a good sign.

I also got Ella into counseling to work on her anxiety. It's been very high again these past few months. When she has to leave me, it's a lot harder than it should be. In speech therapy, she's working on pronunciation of words, muscle tone in her cheeks and lips, and past tense of words. When she says "Today I goed…" I say supportively "Today I went…" to which she says "That's not right! That sounds dumb." 

Ok... I'm passing you off to our dear speech therapist. My work here is obviously done. Someone else try to help Ella speak correctly because apparently Mama is just ridiculous.

AND last but not least, Ella is having MAJOR food sensory problems. So our lucky speech therapist gets to work on with Ella too, who is extremely reluctant to do anything with food during therapy. 

Ella is also having more tics. She's had tics on and off since she was three years old. She meets the qualifications to be diagnosed with Tourette's, but since we haven't needed a diagnosis to get services at school, we haven't had her diagnosed yet. The other night, we were doing our ritual of snuggling and watching "Teen Titans" before bed. Ella started crying. She has been talking to me a lot lately about how her underwear don't fit right, how they need to be at a certain level on her belly and they never stay there and then she has to pull them up. She has done this little twitchy thing for a long, long time, all the time, all day. She sort of twitches her body, her core. Her OT has noticed it, and she agreed with me that it was a tic. But if my kids don't notice their tics, or the tics don't bother them, I don't talk about it. I don't mention their tics unless they bring them up or I can see they're in distress. 

Well, that night, Ella was in distress. She said her underwear wouldn't stay at the right place on her tummy. So she had to keep pulling them up. She didn't want to keep doing that, so she twitches her tummy sometimes to pull the underwear up. But that doesn't work. Then she said, in tears, "It's a tic. And I hate it." 

Whoa. You have to understand, at our house we joke that we have our own support group for Tourette's right under our roof. We are open about our challenges, our diagnoses, how they affect us, etc. We talk about anything and everything that the kids need to talk about. So Ella has heard about tics since birth. Some people may think that she just wants to be like all the boys in the family, so she is copying them. That this is a learned behavior. I can tell you it is not. I know when my kid is choosing to do something and when they are suffering because they don't have control over their body. And little Ella, squirming and crying in my lap, said it perfectly. She said it is a tic. She knows what a tic is. But she would never copy one just to be like the boys. Trust me on that. I asked her "Do you feel like you want to stop doing the tummy twitch, but you can't?" And she wailed "Yesss!" I felt so badly for her. I was so hoping that my little girl would escape the torture that is Tourette Syndrome. Apparently she has not. She fell asleep that night in my lap, holding her underwear at the place on her tummy where they feel just right. I felt so sad for her.

I told a good friend about what had happened that night. She said it is sad, but it's not the end of the world. And it startled me. In that moment I knew she was so right! Yes, it's sad that Ella has tics that are hard for her to live with. But guess what? Life goes on. So I can feel sad for my daughter, but it really isn't the end of the world. How many other people live under this roof with tics they can't control and hate, and still manage to find happiness? (Well, at least some of the time.) People who have Tourette Syndrome can do anything a person who doesn't have it can. Ella can be anything, do anything, accomplish anything. Yes, the road will be harder for her. Yes, she'll have to overcome things that most people don't have to. But that gives a person strength and character and grace and compassion.

Plus she'll always have a pack of brothers and a daddy who tic, and a mama who fiercely loves them all. She'll always have that.

Whew. This kid alone would be a challenge, but guess what? I have three more.

Aidan. Sweet Aidan. He's struggling in school, academically and with executive functioning and impulsivity and math and…the list goes on. He got in trouble a couple weeks ago because -at least these are the details I know for sure- he was put in the hallway to work on his assignment in a quiet environment. A teacher walked by and saw that instead of working on his assignment, my darling was drawing on the floor with his pencil. Now, does my darling know that this is not acceptable? Absolutely. Is there any excuse for that behavior? No way. Oh wait, unless he has executive functioning problems, focus problems, ADHD, visual processing problems, a math learning disability, Tourette Syndrome…of course he shouldn't have been doing something so stupid. But the kid has some major struggles, so I can see how he got off task and didn't think through the consequences of his behavior. Oy.

Aidan has had chronic diarrhea and constipation since he was potty trained. Which actually made potty training quite difficult, in addition to the fact that he had sensory issues that impeded the process. Over the years we've tried a host of different solutions to help Aidan with his discomfort. Dairy-free diet. Nope. Eliminate juice. Didn't help. Drink more water. Still having problems. We did poop studies, blood tests, different diets. Nothing has helped. So I decided we'd take him to the GI doctor who has worked with Jonah and Ella. The doctor ordered an x-ray of Aidan's belly to see what was up with his intestines. 

She told me that "Aidan is full of poop." If she hadn't been a GI doctor, I would have been offended. Apparently, Aidan is actually constipated. Diarrhea sneaks around the hard poop and gets out. But really, the problem is that he's constipated. (Didn't think you'd get a lesson on poop here, did ya?) So he's on Miralax for a month until we see the doctor again. 

I talked with the doctor about how I have celiac disease. And Alex is gluten-sensitive, whether he's willing to admit it or not. So doesn't that make a great case for our kids (who all, coincidentally have the same poop problems that Aidan does) being off gluten? The doctor was not impressed with my theory. She said to try the Miralax first and see what happens. I disagree. I think there's a reason the kids are all full of poop and their bodies aren't working correctly to eliminate it. I think they need to be off gluten. So that's what Alex and I decided to do. I'm all for using a medicine, temporarily, that will help our little people poop big poops for a month, but there is a root problem that isn't being addressed with the laxative. That's just my Dr. Mom theory. Not that I'm an expert on poop or anything.

So Aidan is struggling at school, he's getting into trouble, he's having physical problems…the poor thing has had strep three times this winter! He's never had it before! He's also had two other illnesses in between the strep, and two bouts of rashes. This latest one the doctor said was not contagious, and would last three to eight weeks. Ouch. It's all just weird. I can't figure out the rash, but I can figure out the brain.

I had Aidan complete a neuropsych eval to see what we may be missing. The doctor had some surprises for me. She said Aidan has a pretty significant learning disability in math. He has problems with auditory processing, and especially visual processing. His glasses are addressing the visual piece of things, but it is a gradual process of improvement, not a quick fix. He has very high anxiety- higher than I was aware. He has trouble with comprehension although he is a good reader. He's an organizational mess. Organization of not only his physical things but also his thoughts, predictions, knowledge…He's got ADHD, which I wasn't sure of before since he hasn't responded well to any of the ADHD meds we've tried. So pretty much, he's a mess. 

But the fantastic news is that he feels secure in relationships. He is positive. He is funny and kind. He loves people and feels loved by people. He trusts. He is super bright. He has so many great things going for him, which makes it that much harder to know how much he is struggling. The other good thing is that we can help him with all these things. We can get him help with math. I got him into speech therapy again, to work on skills like chunking, finding the main idea, remembering information. It's funny, actually, Aidan has been asking to go back to speech therapy for a couple months. Whenever one of my kids makes an unusual request like that, I chat about it with them but don't take it too seriously. But if they keep bringing it up, then I know I need to figure out what is going on and address it. 

One thing I've learned over these years is that I always, always, have to listen to my kids and pay attention to what they're telling me. Sometimes they're great at verbalizing what is going on and what they need. A lot of times, Aidan struggles with putting thoughts into words, so I have to sort of intuitively put together the answer to what he needs. If he asks for speech therapy, more than once, that means he knows something about himself and his needs that I have to take into consideration. Last week we ran into the speech therapist in the hallway of our clinic. She asked Aidan and Ella if they wanted to smell some essential oils and put a drop on a tissue to take with them to the waiting room while we waited for Ben and Jonah to finish therapy. While sitting with her, Aidan asked our awesome speech therapist if he could come and see her again. She told him she would talk with Mom and we'd figure it out. So she was able to fit him into an appointment time and he'll start next week. It's ironic to now know the results of Aidan's neuropsych, and to know that he does in fact need speech therapy in order to learn skills that he has deficits in. What a smart, intuitive kid.

I also got Aidan into counseling to help with his anxiety. The neuropsych doctor will call our psychiatrist to talk with him about her findings, and to tell him about Aidan's significant anxiety and ADHD. Then the psychiatrist and I will work to create a medicinal plan to help Aidan. We're going to get him more help at school with the areas he's struggling in also. 

Whew. That's kid #2.

Kid #3. Mr. Ben. For months now, his rage has been more than he can control. We were back to having rages, sometimes multiple rages, every day. He couldn't keep it in. His rage is his nemesis. It is his biggest disability, he feels. He feels betrayed by his body when he has a rage, because rage is not my boy. My boy is so kind that it hurts your heart and brings tears to your eyes. Rage is not who my boy is, it is his disability. Rage punctures the tapestry of our family, creating ragged holes and knots. Rage is my nemesis too. Not my own rage, but that of my boys. 

But something magical has happened to me during this last bout of Rock Bottom. For some reason, when the rage comes at me from one of my boys, it doesn't get into my body and poison me, causing stomach aches, heart palpitations, inability to catch my breath. Instead, I can almost see the wave of rage coming at me, reaching my stomach like it used to, and then just sailing right up and over the top of my head. I have a protective shield now that I have never had before. I attribute this magical, incredible change to all the energy work I've been getting for myself. It has changed me, and I'm so much better equipped to handle my nemesis now. Bring it on. The rage poison cannot hurt me anymore. 

I talked to our counselor about Ben's challenges. I talked to the psychiatrist about Ben's medication. We decided which medication to add to Ben's daily cocktail, after weighing the pros and cons (of which there are many) of the meds we haven't tried yet (of which there are few). Ben is back in counseling. I'm continuously working with his school to make sure he's getting what he needs and doesn't fall through the cracks.

On to the fourth and final kid. Jonah. Jonah is intuitive and sensitive, a lethal combination when you live in a toxically ragey environment. Add to that his own internal demons, and you have a big problem. He internalizes his depression and anxiety. He shuts down. At school he is "a happy-go-lucky kid" who no one would think is suffering. He has had more anger, more meltdowns, these past few months than ever before. He is unpredictable and emotional. All just part of bipolar and Tourette's. But not ok. So the psychiatrist and I put another med into Jonah's cocktail too, to help with his depression and mood instability. 

I've scheduled Jonah for a neuropsych eval too. I'm wondering what pieces of the puzzle will come to light this year during the exam. I have a feeling we'll get some surprises with him too. School is hard for him. He struggles to get things done. He struggles in so many areas. And he's such a genuine, earnest, hard-working, great kid, he shouldn't have to struggle so much. We'll get him help. He's back in counseling too, which has already helped improve his depressed outlook on life. He's also seeing the chiropractor to address some physical challenges that affect the way his body moves in the world.

This past Monday, the kids had a day off from school. Alex had to work. I was dreading the day, as I do any day we're home together. I swear I have PTSD- I never know when a rage will happen, who it will target, what it will manifest as. I never know when someone will have a meltdown. I never know when there will be a catastrophic mistake made by a child that I have to contain, fix, explain, apologize for. I never know what will happen, but I can guarantee a day spent at home together is filled with mines waiting to blow up in my face. It can be terrifying and exhausting to live on edge like that all the time, for years and years.

But as I sat that morning, finally eating my breakfast and having my coffee, I listened to the movement of the house. No one was fighting. No one was raging. No one was emotionally unstable and ready to head over the ledge into Insanity. 

I heard children laughing together. I heard children talking together calmly. CALMLY.

Wait, could this be real??

The kids were playing together. PLAYING TOGETHER without fighting and raging. There was calm and peace in my house. There was happiness and contentment. I made the kids pay attention to what was happening- that there was no fighting and anger and screaming and raging. We let out a collective sigh of relief that there was no instability in sight at the moment. Maybe all our efforts were beginning to pay off. Maybe meds were starting to work, just a little bit. Maybe therapy was already helping. If I could have moments like this, even once a month, I'd be happy, I thought. Think of all the things our family could do if this was our constant, if this was always who we were. Think how easy life would be. I couldn't believe it. To live without rage imposing its enormous weight on our family, that would be a miraculous thing.

That's kid # 4. And that's what the plan is. Alex and I are both in counseling again too, to gain support and clarity as to how to best parent our little village of special children. 

Luckily, when we hit Rock Bottom now, I know what the plan of action needs to be. I know who to call for what, I know how to find the life jackets for our crazy little family. Don't get me wrong, it's still so so hard. It's still scary and lonely. I still cry when no one else is around to worry. I still worry, every second of every day. Am I doing the right things? Am I doing enough? Have I thought of everything? What have I missed? I think about every child every day, and I go through their needs, what I have done to help their needs, what else I could do…it's mentally exhausting. Even though I have the map to lead us away from the Rock Bottom that has snuck up on us, it is still a long, long way back to the sunshine. But we will get there. I will bring us back to the sunshine. The Easy Way, or the Hard Way, as I tell the kids about things they don't necessarily want to do (like any daily task. toothbrushing. showers. getting clothes on. getting on the bus. you name it, i can 'Hard Way' it. and the kids know i can, so they know i mean business. so they better get their little behinds back up to the sunshine asap. or we'll be doing it the Hard Way.).

Wednesday, March 4, 2015

Walking Away

My little girl is frosting. There is nothing in this world to describe her perfection except frosting. Perfectly sweet, but not too sweet. A little mysterious, full of layers and depth. Faintly firm edges that melt when loved but all soft in the middle. My little girl is absolute perfection.

A few weeks ago she went to a friend’s birthday party. She was worried about me dropping her off at the party and leaving to run errands. Usually I stay at parties with the kids, but this was a friend’s house who we’ve known for a long time, in our neighborhood, and Ella has been to her friend’s house for playdates by herself. So I knew that it was just nerves about the party.

When we arrived, the door was open and already little girls were giggling and running off to play. Ella saw her friends and joined right in. I whispered to her that I would run to get the dog from the groomer, go get groceries, and then come back to get her. She said ok, and then skipped off to play. The nerves were soothed. She walked away from me happy and comfortable.

At the party, there was an amazing balloon-animal maker who taught the kids to make a balloon dog, and made each of them an animal of their choosing. Ella got a rainbow-colored octopus that had to be 4 feet wide. When we pulled into our driveway after the party, despite having just been with her friends for 3 hours, Ella begged to go across the street to another friend’s house. I agreed that would be ok.

I unbuckled Ella’s seatbelt and helped her get out of the car. Then I untangled her inflated loot from where it had landed during a turn on our drive home. In my arms, I held the beautiful, crazy balloon octopus, a brown paper bag with my daughter’s decorations all over it that held her candy from the piƱata, and the doll she had borrowed from her friend. My arms were full of Ella’s treasures.

I told Ella I wasn’t sure our neighbors were home because one of their cars was gone, but that she could go ring their doorbell and see. As usual, I said I would watch her walk across the street.

I stood at the top of our driveway watching the perfection that is my daughter. It was one of those moments I wish I could freeze. I wish I had my camera. I wish I could remember it forever, just the way it was in every minute detail. It was just my little girl walking to her friend’s house, but it was a moment of Mama clarity and adoration.

My sweet girl had curls in her blond hair- that’s how we do our hair when we REALLY want to be fancy- we curl it. She had on a beautiful long blue dress that swished when she walked. She had her furry, soft white coat on, white tights, and pink sparkly Mary Janes. The muted rays of winter sunshine shone around Ella as she and her curls flounced down the driveway. She got to the bottom, turned around, tilted her head and said “Wait. What time do I have to come home?” Then she painstakingly looked both ways for cars and crossed the street. My beautiful girl’s aura was full of glitter and innocent happiness. Her day was full of friends, hearts, curls, and carefree contentment. I wanted to freeze that moment forever, her beauty and perfection.

I thought about how many moments I have spent watching my children walk away from me. Walking into something new, or something scary, something exciting or unknown. I’ve watched them walk into their first days of preschool. I’ve watched them walk to the school bus for the first time. I’ve watched them walk to a friend’s house alone for the first time. I’ve watched them walk down the sidewalk to the park with friends for the first time without me. I’ve watched them walk to the microphone at a spelling bee, and out the car door and into a school dance. I’ve watched them walk up to take their first Communion. Part of the unwritten contract you sign when you become a parent is that you will let your children walk away. But there's nothing that says you can't peek from around the curtain as they walk away. They don't have to know you're watching, even as they walk into newfound independence. 

Some times it’s easier than others to do that. I volunteered in Ella’s Kindergarten class for Center Time one day. When I got there and started working with the kids, I realized I really wasn’t feeling well. I was working with Ella’s table, and she had been looking forward to me coming in so I didn’t want to disappoint her or the teacher by leaving early. And anyway, it’s always fun helping the kids.

When it was time for me to leave, Ella started getting a little anxious. She sat on my lap and put her head in the crook of my neck and said she didn’t want me to go. I held her close and rubbed her back, and told her she would come home soon. Her sweet friends gathered around and told her it was ok, they were there for her and would make her feel better. But Ella’s anxiety turned into tears, and she started crying quietly. I stood up to get my coat, hoping a teacher would be able to help me out with my sad little girl. I put my coat on with a lump in my throat as Ella cried next to me. I tried not to fall apart. I kept reassuring her and rubbing her back. When Ella’s teachers saw this wasn’t going to be an easily fixable situation, one of them came over to help me. She talked to Ella and tried to calm her down. I gave Ella one more hug and turned away, telling her it would be alright. Ella’s face crumpled into grief. She hesitated, turned toward her teacher, and then back to me in one desperate attempt to be with me.  My heart completely broke into a zillion pieces. I knew I couldn’t fix this for my little girl. She had to stay at school. But I was broken. I gave Ella one more hug as I felt my tears in my throat. I gave her to her teacher and tried to exit the classroom as gracefully as I could with tears falling down my cheeks, without sobbing out loud. 

It’s hard to get out of a school without making teary eye contact with anyone. It’s impossible, really. I was just overwhelmed. I was completely devastated at the sight of my daughter walking away from me, her face crumpled in a sadness that I couldn’t fix.

Granted, I wasn’t feeling well, and the week had been stressful because Alex was out of town, and I was exhausted and burnt out from parenting alone, so possibly my grief was an extension of my vulnerability. But in that moment, it was what it was. It made me think about how many times, and how many ways, our children walk away from us. And it’s the rule that you have to let them go. Even if it breaks you.

I got in the car turned it on, and like a jagged knife twisting in my raw heart, Ella's favorite song by Rihanna "Stand under my umbrella, Ella, Ella…" was on the radio. I let the tears roll down my cheeks and the sobs engulf my body as I drove to meet a friend for coffee. If it had been anyone else, I probably would have canceled. I hate crying in front of people. I rolled down all the windows in the van and let the freezing wind numb my red, swollen face, hoping the cold would disguise my sadness.  I texted my friend, told her what had happened and that I was fine, just sad. And NOT under ANY circumstances should she ask me about it because I would start crying and I wouldn’t be able to stop. She agreed to my terms. And let me bring my sunglasses into the coffee shop in case I needed to wear them to hide my tears. That’s true friendship.

This is one of the things I love and loathe about parenthood. I loathe watching my children who are hurting, scared, or worried have to walk away from me, knowing I can’t fix whatever they’re walking into. And I love watching the perfection that is my children walk away happy, sweet, and full of life, into the next exciting adventure that comes their way.

As I held the giant rainbow octopus from the birthday party, and the Elsa doll, and the carefully decorated brown paper bag, I watched my child walk away from me- on to the next thing, over to a friend’s house. This time she wasn’t crumpled in grief. This time she was flouncing away in curls and a sparkly, frosting aura. I much prefer the flouncing.

Saturday, January 31, 2015

Say My Name

I frequently hear people say that they think I am so strong. They marvel at how I do everything with my kids that I do, and still stay sane. They wonder at how much strength it takes to keep putting one foot in front of the other, when, they say, most people would give up and quit.


I think it’s my name.

I started thinking about this last year during a particularly stressful time with the kids. I'm not trying to be conceited, but honestly, so many places I go, people tell me that they can’t believe how strong I am to deal with all the things I deal with. I always say everyone has a lot to deal with. It’s not just me. I have things to handle that many people do not, but other people have other things, and most people are very strong. But I started to wonder why so many people tell me I’m strong. Then I got to thinking how ironic it is that my name, Carrie, means “strong woman.” I think I was named this particular name for a reason. A reason other than the fact that it was my Grandma's name. A reason even bigger than familial ties.

I have this little theory about names. I think you’re named your name for a reason. Every name has a meaning, and that meaning is an integral part of who you are. The second you are named, you become Someone. Someone with meaning, with purpose, with intent in the world. And I believe every time someone utters your name, it’s a tiny prayer for you. A prayer for you to become even more of who you are meant to be, for you to have the strength to do what you are supposed to do in this world.

During this period of time that was quite challenging with my kids, I drew strength from the thought that every single time anyone has ever spoken, or thought, or whispered my name, it has been a silent prayer for me to be strong. Since my name means “strong woman,” each time my name has been called, it has been a mantra of hope that I will be strong enough to handle the challenges I am given in this life.

I know this is a crazy theory, but what if it is true? And who cares if it’s not, I like it so I’m going with it. It gives me hope when I’m feeling down.

Now everywhere I go, I look for name tags. Name tags on people at the grocery store, the gas station, restaurants, the doctor’s office (which we frequent quite a lot). I look at people’s name tags and I say a tiny, silent prayer into the Universe for them.

“Be with Ebony.” “Thank you for Frank.” “Thank you that Lesa was here today.”

It’s not much. And the people I take a moment for never know I’m doing it. But it gives me a moment of connection to other humans during otherwise mundane life activities (like checking out at the grocery store), when my consciousness would probably be dulled by zoning out with my iPhone otherwise.

To say someone else’s name and offer the gift of silent gratitude that they live in this world with me gives me the feeling that somehow, I’m doing something for the greater good. Every time I say someone else’s name, I offer up a small prayer of hope and thanks for them. And I hope that someone is doing the same for me.

Maybe that’s why I’m “so strong.” I am called, after all, “strong woman." Keep sayin' my name, people. I need all the strength I can get.

Friday, January 23, 2015

Reset Button

Sometimes I want a Reset Button. There are times when every single thing is so messed up and icky and life is just not flowing smoothly, and I think a Reset Button would be very useful. Just push that big button and your life resets itself into a calm, cohesive flow. I wish.

This past weekend was even more terrible than most of our weekends. The kids were completely out of whack. Mood problems, behavior problems, rage problems, anxiety problems, depression problems, sleep problems, sensory problems…it was pretty brutal. I couldn't figure out how to reset everyone. To make matters worse, it was a four day weekend for the kids. So we had two more days than normal to be together and wallow in our Ick. And not only that, three of the kids had been home most of the week before with strep. I think we've had quite enough togetherness. 


I don't know what the problem was for the kids this weekend. All I know was that I was burnt out and down in the dumps. I couldn't see my way out of the Yuck that was our family. I couldn't figure out how to find my Reset Button.

I always hear people say that they never envisioned having children who have special needs. That this didn't match the plans and dreams that they had before they had kids. Before having kids, I never had specific dreams of things like "My son will play baseball" or "My daughter will like to crochet." But I've realized that the dreams and hopes I had for my Someday Family were things like "We will enjoy being together" or "We will do family activities together: trips, games, the zoo, movies, and we will have fun!"

Yeah, not so much. Life hasn't turned out exactly that way. Granted, we do do things together as a family, of course. We take the kids to the zoo, to movies, we occasionally travel. But if I'm honest, it's mostly not so enjoyable. I always think it will be, but it's more stressful and challenging than anything. We keep doing these family things because we think they're important for a family to do. Traveling helps the kids understand the world better. It helps them learn to deal with real life- like how you can't control it if your plane is delayed. Movies give us a sensory experience like no other, and tell stories that we've never dreamt of. The zoo is fantastic! So many fun and new sights, smells, and textures there. 

But I get way more excited about all these things than any of the other 5 people in the family. Well, Ella may be almost as excited as I am for a new adventure. I think our family likes the ideas of all those things, but in reality, the experiences are just hard on too many levels to be fun for them. I hear about how this family we know went on this trip, or some other family went skiing, or whatever. Their pictures look beautiful and sunshiny and happy. I know in reality that every family has its struggles. But it seems like some struggle more, or with different things, than most families. 

Before I had kids, I never dreamt "Our family will have a level of anger that is beyond anger. We'll spend a lot of time in the Rage level of anger! It'll be so fun!" That is the one thing I cannot stand. I don't understand this level of anger, and I have a hard time tolerating it. I didn't grow up around a lot of anger, so having a family of my own that includes several angry individuals is quite a challenge. If I could change one thing about us, that would be it. I always hope that this is something that will change. No matter how many angry moments we have, I always hope for change. 

Don't get me wrong, we have a wonderful, loving, beautiful family. I cherish and adore every person in our home. We have many wonderful experiences, every day, together. I can see that at the heart of each of my children lies a caring, generous, compassionate, kind, beautiful soul. And that is so important to me. But to be honest, this outer layer of anger that some of them have, blegh. It's so hard to live with. It goes beyond normal anger. I wish I could wish it away. I know it's a combination of biological, physical, chemical, and neurological issues for them. I get it. But I hate it. I wish we could spend more time being the wonderful, beautiful people that I know our family is, and less time in the rages.
On day 3 of our 4 day weekend, we had a friend and her son come over for a play date. I was so hoping that my sweet friend would be my Reset Button after such a tough weekend, and she fulfilled that hope. We talked and laughed, teared up a little, complained, shared our experiences over coffee, and then tea, and then grilled cheese sandwiches with the kids. It was just what I needed. My friend rejuvenated my soul and wiped out the yucky feelings I had that were leftovers from the weekend. My dear friend was my Reset Button. 

You have to find your Reset Button, it's so important. You have to find that thing that gets life flowing in a comfortable, peaceful way again after a rough patch. The thing that makes you laugh from your belly again, that lets you breathe again. The thing that lets your spirit soar. Sometimes my Reset Button is a bath (when no small people intrude and giggle at how MOM can even fit in the bathtub! What an unusual and extraordinary sight! Makes me feel like a 3-headed alien.). Sometimes it's writing, or going to the grocery store alone, or art. But other times it's just harder to find that elusive Reset Button to make all things right again. But I found it this week! Ha ha! Mommy wins! My friend was my Reset Button. Thank you, friend. I needed to be Reset.