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Monday, June 15, 2015

Avant Garde

There's nothing quite as ironic as trying to get your middle-schoolers ready to volunteer at Vacation Bible School while they call you every swear word known to man. Gotta love it. While Alex and I run around trying to help the boys not get overwhelmed by having to do all their morning self-care things, they swear their heads off at us. You can't help but feel angry. Disappointed. Frustrated. Did I mention angry? 

I read Facebook posts and blogs all the time that talk about this issue with children who have Tourette Syndrome plus other diagnoses. It's very common to have rages, or neurological storms, as they're called sometimes. It's common to be overwhelmed, to swear, to rage, to be irrational and irritable, to over react, to misunderstand, to be rigid, to not transition well, to cry, to hurt others, to throw things, to yell, to scream, to threaten, to be impulsive. But just because it's common with kids who have these diagnoses does not make it any easier to parent them.

Ben and Jonah had to be at church at 8:15, so Alex dropped the sweary boys off on his way to work. I brought Aidan and Ella at 9. When I got to church, Ben and Jonah were both filled with a light that came from inside of them. Their faces were smiling and excited. Their hearts were joyful. They couldn't wait to volunteer with Ella and Aidan's classes, help their brother and sister not be nervous, and praise God while they did it. Had the people at church seen the boys before 8:15 this morning, they would not have recognized them. They were completely different at 9am. They were their true selves. Their true selves are joyful, kind, helpful, generous, fun and funny. I get so frustrated that their disabilities have to live mostly in our house, infecting us like a poison with anger, irritability, irrationality, and conflict. I wish we got to live with the joyful, lit-up 12-year-olds who are at church right now.

There are a few conclusions Alex and I have come to because of recent events. The kids all went to see the doctor who is treating my mold and tick illnesses. They got blood tests to see whether they suffer from the mold toxicity also, and to see if they have the genes that I have that predispose them to Celiac disease. Sure enough, some of the labs are back, and all three boys have the Celiac gene. That means no gluten for anyone here. I told Alex if he wants to cheat, he has to do it away from us. We're a united front here. No gluten. That means life just got a lot more complicated. When we visit family and friends, we still have to eat gluten free. When we have birthday parties…gluten free. Movies…gluten free snacks. School…gluten free home lunches. It's not impossible, it's just complicated. I'm happy to bring our own food to any and everything we go to. Gluten is poisoning our bodies, and I'm not willing to let that happen anymore. If you are someone who is allergic or sensitive to gluten, it can affect your mood, emotions, mental state, physical state…everything. Everything. I've been starting to educate the kids about why we need to eat gluten free, celiac disease, leaky gut syndrome (which I'm sure they all have), etc. I know that especially the older boys need to know the medical science behind this and that it's not just Mom being crazy and taking away all their favorite foods. I've started weaning in gluten free snacks and breads, to show the kids you can still eat like crap if you want to, there are still delicious things to eat, even if you have to eat gluten free. 

Ella, of course, is the one taking this most to heart. The other day we were in the car and she asked for McDonald's. I said no, we're going home for dinner. She thought for a minute and then said "Oh YEAH! McDonald's has gluten anyway, so I can't eat it!!" Love that kid.

The preliminary blood tests for all three boys also show that they probably will be diagnosed with Chronic Inflammatory Response Syndrome- or mold toxicity, like me. Doctors don't know anything about CIRS, as far as if it can be passed from mother to child in utero. We'll know more as the results come in. But this would explain a lot of the boys' chronic illness, inflammation, not feeling well, mood problems, etc.

Another thing we've realized over the past couple months is that although Ben and Jonah are getting older, they are not necessarily built for more independence. This has been super tricky lately. Since they are older, they want to have fewer boundaries. They want to have Facebook accounts. They want to ride their bikes down to the gas station to get a snack. They want to stay home alone when Ella has therapy. I've given them some independence, carefully and slowly. When they screw it up, I reign them back in and push in the boundaries. I've seen them screw it all up a lot lately. Their Facebook accounts have been deactivated. They are not allowed to stay home alone anymore unless it's for a very short amount of time and they are all very stable emotionally. I left the three boys alone for one hour last week. When I came home and heard about all the Crazy that had ensued during my absence, I was just flabbergasted. I don't even know how to parent this. I know the tween-to-teen ages are challenging for all parents, but when you throw a disability into the mix, that makes things even more incredibly challenging. I'm seeing that during this phase of their lives, the tween boys in our house are more impulsive than they have ever been before. And since they are older and have a little bit more freedom, there are more serious repercussions and consequences. It's getting harder to keep them safe.

We have also come to terms with the fact that once again, we have to make some modifications in the way our family handles things. Things like travel, visiting relatives, going on outings. The older boys seem even more sensory-sensitive than in past years. They are even more easily overwhelmed by restaurants, people, fairs, arcades, pools, than they used to be. They also are more impulsive. So they have had several instances where they have had meltdowns with people other than Alex and me. Alex and I have realized this can't happen. Other people don't know how, and shouldn't be expected to know how, to handle rages and meltdowns. So Alex or I have to be with the boys whenever they go anywhere. I feel badly for both the boys and other people, because when others ask the boys if they want to do something that typical kids would love to do- like stay for a week at Grandma's house by themselves- the boys know what people want to hear. People want to hear "Yes! I'd love to do that!" So that's what the boys say. But in reality there is no possibility at all ever in a million years that something like that would be successful. The boys don't know how to communicate that when they're on the spot. So then I get to be the bad guy and explain that although the boys' words are saying they would love to go to a movie without me, or go to the fair without me, or go to the zoo without me, or stay somewhere overnight without me, that is not what they actually mean or are capable of. We have to set them up for success, not failure. So Dad or I have to be with them to help them navigate stress, anxiety, and sensory overwhelm. All. The. Time.

After a recent trip to visit family where we stayed a couple days, we decided that from now on we will bring two cars whenever we leave home for an extended period of time. All three boys cannot handle being away from the comfort and routine of home for very long without melting down, or worse, raging. Some of the boys suffer even more than others. After that last visit, Alex and I were talking, because it was clear that some of our children really needed to go home early. But we only had one car and it wasn't an option to pack up the family at 9pm that night and drive several hours home. I said that if our child used a wheelchair, we wouldn't make him go somewhere that was not wheelchair accessible and expect that he could figure out how to navigate the environment. We would protect him and make sure he was able to succeed and thrive in all environments, despite his disability. We have to think of our kids the same way. It's so hard when their disabilities are not physical. It's so easy to have unrealistic expectations and be angry when the kids fail to meet those expectations. But our children just do not have the capacity right now to succeed in an environment away from home. It has nothing to do with anything else other than our children's disabilities. It's not that they are not having fun at Grandma's. It's not that the fair isn't a blast. It's not that they don't like to go to the zoo. It's just that they have disabilities that require some intervention in order to be successful. I think Alex and I both are guilty of expecting that our kids can handle more than they are capable of. And then we suffer the rages that follow.

If we have two cars wherever we go, kids who are unable to handle a situation can easily go home with one parent, and the kids who are being successful can stay with the other parent. Problem solved. It's not a punishment. It's dealing with a situation and handling it the best way for our kids and their disabilities. It's giving them what they need.

We also decided that if any of the kids are in a particularly bad place emotionally, they will not be required to go to family functions. This goes against everything Alex and I were raised with as far as family expectations, but our family is different and we have to change our expectations. Our kids don't try to be bad. They don't try to have meltdowns or rages to get out of things. Rages are different than tantrums. With a tantrum, the child is trying to manipulate the situation to get something he wants. A rage is a total loss of control, with no end result in mind. Sometimes our kids just can't handle the things other kids can.

It's all just so challenging and frustrating and tiring. It's hard to be weird. It's hard to be a family that can't just do what other families find easy and normal. It's hard to have to tell our relatives that we have different rules for our kids than what we were brought up with. It's hard to explain to others that our kids can't eat gluten and that they probably have mold toxicity. (I know, even your eyes are glazing over as you read this!) I get it. Our life is not glossy and fancy and Pinterest-y. It's gritty and challenging and sometimes out of control. We try our best to make sure we add a huge dose of love and acceptance and support and encouragement too, but sometimes I don't handle the stress very gracefully.

Our chiropractor, who sees our whole family and has known us for years, told me today that I am "avant garde." My parenting, my way of looking at my kids, my way of searching for answers for them that do not fit the norm, my way of thinking outside the box, my way of advocating for them, my feeling of 'there is something we're missing'…he said all of that makes me avant garde. I love that. I'm going to get a bracelet made that says that, to add to my other "message bracelets" that I wear every day to remind me to be brave, be joyful, have courage, have love. 

It's extremely hard for me to feel judged by others. That's my biggest fear, my biggest weakness. When you have children, period, you may feel judged. When you have children with disabilities, the judgement from others is even more present. My chiropractor said I'm ahead of the game. I am not the norm, when it comes to parenting, but that's a great thing, he said. I find ways to help my kids that other people may think are completely loony, but will really help my kids heal. Avant garde. This gave me a boost of hope that I really am doing the best I can for my kids, because many times I am at such a loss. How do I parent this? Maybe someday they'll mature a little bit, life won't be so difficult and unpredictable, and I can rest in the peace of knowing I truly did everything I could to help my children be whole and be happy. 

Friday, May 15, 2015

Mother's Day=Low Expectations

Ahh, Mother's Day. I've learned to set my expectations at a low-to-medium level for all holidays, birthdays, celebrations, etc. Alex informed me on Mother's Day that I need to set my expectations low. Medium is still too high. Low is the way to go.

My Mother's Day started out with pure awesomeness. Aidan dragged his bulky backpack all the way upstairs to where I was still lying in bed, hoping the day wouldn't start quite yet. He pulled out a pile of treasures from his backpack and snuggled up to me in bed. It was a purely lovely moment. He had worked so hard at school to make me so many beautiful things to show me how much he loves me. It made me feel so special. He was really 'present' too, as he showed me his gifts. He was chatting and engaged and snuggly and wonderful. A rare moment of clarity between us. That was the biggest gift he gave me. 

I love it when teachers have the kids fill out things about their moms. Aidan wrote for about 3 years that his mom was 29 years old. How I love that boy. This year I aged to 32. That's still a compliment. He also wrote that I am a great mom because I give him "good lovins." I love that. Lovins. That means hugs and snuggles and lovin' vibes. He also said I am "the best Recreator." Which he said means that I made each of my kids, and created them to be who they are! Whoa, man. That's deep! Aidan is such an intuitive, sensitive soul. I believe he 'knows' way more than this world lets him demonstrate to us.

My day proceeded with a beautiful breakfast with my family, and being overwhelmed with cards and gifts. Ben and Alex had gone shopping and Ben had picked out gifts for each of the kids to give me. He knows me so well. It was wonderful. Ella did fuss the whole time about how she wanted me to open her gift first, and then about how SHE wanted to open the gifts, and then when I declared that we would eat ice cream for every meal in celebration of me, she was mad that no ice cream shops were open at 7:15 am on a Sunday. But other than that, it was wonderful.

Those were the highlights of my day. It declined from there. Ella went to the bathroom. She somehow did a summersault off the toilet as she was peeing, flipped over, and hit her back on the little table in the bathroom. Tears. Many tears. Who does a summersault off the toilet?? How is that even physically possible? Leave it to my daughter. 

Alex had to leave for a business trip that will take him to Vegas all week. Must be rough. All by himself for a week. Eating at restaurants. Going to the bathroom by himself whenever he wants to. Flying on an airplane while reading his book. Watching TV shows that he wants to watch before bed. Humph. 

We drove Alex to meet a coworker so they could carpool to the airport. On the way out the door, the three boys commenced in World War III over who would play chess with whom at the ice cream shop. Physical fighting, swearing, yelling…ah, Mother's Day love. As they got in the van and continued to fight, I informed them we would not be getting ice cream. I informed them that their beautiful sister, who was sitting quietly in her car seat, and I would get ice cream, but those who were kicking each other would not be able to partake of the frozen delights.

The whole way to drop of Daddy, the boys whined about getting ice cream. Ben asked if they didn't play chess, could we please get ice cream. We all agreed. No to chess, yes to ice cream. We kissed Daddy goodbye in the rain and drove to the ice cream shop.

World War IV then began. Over- guess what--CHESS. Are you KIDDING me?? We had half of our order ordered when the boys started in again about that darn chess game. I calmly reminded them we were not playing chess. That was our agreement. While I haphazardly tried to get our order finished, I tried to tune out the quarrel that was brewing. I should have just gotten the kids and walked out. But I really wanted that chocolate peanut butter ice cream. So, stupid me, we stayed.

The boys continued to make the ice cream date a hellish experience. Ella had insisted on being Queen Elsa from Frozen for the day, so she was all decked out from hair, makeup, dress, to her high heeled shoes, in Elsa Fashion. She sat under the table at our booth as the boys fought at a nearby table. No matter how much I growled at them through clenched teeth, they didn't stop. I had told the waitress that we were staying, not taking our treats to go. So now we were stuck with glass bowls full of ice cream. I kept hoping the boys would snap out of it. I kept saying "It's MOTHER'S DAY! You have to be nice to me!" 

But that didn't work. Eventually the boys stopped fighting, but I was totally worn out from anger and depression, my medium expectations shattered. I sat with Elsa in our booth and ate my ice cream in silence. Too frustrated to even look at the boys. I looked out the window into the gray fog and guiltily wished I was somewhere else. I felt terrible because it was Mother's Day and I should be washed in the glow of loving feelings about my children, but I really just wanted to be somewhere else where life wasn't so hard. Just for a little while. I watched the other families having ice cream, all happy and calm, and I wished we could be like them. I felt guilty, but it's true. I wished we could be "normal." 

Then I decided that I wasn't going to feel guilty anymore. Mother's Day (and Christmas, Easter, my birthday) is really just another day. Yes, it's special. But my kids had given me special moments earlier. And my kids give me special moments on random Tuesdays. Or sometimes in the middle of a night. Or whenever. I was content with that. I had felt washed in the glow of love earlier in the morning on Mother's Day, and now we were back to normal. We were back to difficult family chaos. So I decided not to feel bad about my feelings. I decided not to feel guilty that I was mad at how my kids were acting. I decided not to feel guilty about yelling at them in the restaurant. I decided not to feel guilty about how I wished I was somewhere easier at that moment. Even on Mother's Day, life is real. It's not like a Hallmark commercial. Not for me, at least. I was showered with adoration for a brief time at breakfast, and I really was happy with that. Now we were back to reality.

As I sat in the booth by myself, I watched another mother watching my table of four children. The mother smiled the smile you smile when you see other mothers' children acting completely adorable. And you just think they're perfect and sweet and so cute. I tried to see my kids through the other mother's eyes. Yes, they were adorable. My twins, looking so twinish. My 9 year old, playing the chess game just as well as my 12 year old. My daughter, decked out from head to toe in her Elsa gear, watching her big brothers play their game. Yes, it was completely adorable. 
But the other mother hadn't been in the restaurant when I was growling at my children because they were acting like beasts. She hadn't heard them raise their voices so they echoed through the high ceilings and everyone could hear them arguing about ridiculous chess. I decided I was not going to feel like a bad mom because I wasn't completely overwhelmed with adoration at the cute picture my kids painted. I was still itchy with the remnants of aggravation left over from how my kids were fighting earlier.
I think "special" days, like holidays, make my children stressed out. Even just Mother's Day. Routines are thrown off, Daddy was leaving, we had sugar for lunch…all holidays are a minefield for my kids. So Alex is right, I should set my expectations low, not even medium. And then I might be pleasantly surprised. The rest of my Mother's Day was normal. Challenging in spots, a lot of work, but some joy too. We made it through. 

I think it's important to not be too hard on ourselves as mothers. I don't think you have to force yourself to experience a loving, warm feeling about your kids (even if they are adorable) when you've been trying to break up a fight for 37 minutes and it's Mother's Day and your husband just left you with four kids for a week and all you want is chocolate peanut butter ice cream for crying out loud. There are plenty of moments when my heart is bursting with love for my adorable munchkins. Like when I come to wake Ella and Aidan up in the morning, and they're snuggled under the covers in Aidan's bed, playing with his Minecraft figures together. Or when Ben and Jonah have a twinsie slumber party in the basement, and I hear their giggling as I close the basement door. Plenty of loving, memorable, adorable moments in this house. 

Let's not be too hard on ourselves, Mamas. There will be countless beautiful moments with our children. But if they don't happen on a day designated to be special, oh well. That random Tuesday will pop up again and the gift of sweet children will return when you least expect it. I learned a long time ago not to let disappointment over how a "special" day actually turns out get me down. Not for too long, at least. Sometimes I wallow for a few minutes, but I get over it pretty fast. I cherish the beautiful moments and move through the yucky ones. That's all you can do. Keep on trekkin' through the adventure called Motherhood.  

Thursday, May 14, 2015

Swingin' In My Hammock

I'm stuck. There are a million things I should be doing right now, but I'm stuck. I'm reliving yesterday's IEP meeting over and over in my head, stewing and fretting. I can't get it out of my mind. Not only did parts of the meeting piss me off, but it pisses me off that I can't stop thinking about it. I've tried all my tricks, but it's still there. Stuck like glue in my brain. 

I have to say, I love our school district for so many reasons. I have completely adored most of the teachers my kids have had in the past 8 years. I see that the school tries to do their best for my kids. Most of the teachers we have had have been incredible- invested, generous with their time, earnest and devoted to helping my kids. Having said all that, sometimes schools aren't perfect. Sometimes they really don't see the disabilities a child has, because the disabilities are invisible. To the naked, untrained eye, they are invisible. So sometimes you have to bring in the big guns to show everyone what is happening to your kiddos, because they can't see it themselves. 

In the last couple weeks, I've been to three IEP meetings for my three boys. This year we hired an advocate to help us get services for our boys, because Mama was tired of fighting by herself. Eight years, and the school still didn't see the extreme needs my boys have. I was done. I needed help. I called in the best reinforcement possible. My savior, my advocate.

It started with Ben. We had meetings fill our calendars during the beginning and middle of the school year, all about Ben. We hired a behavior consultant to observe Ben in school. She is an expert in Tourette Syndrome, and wow, she was amazing. She was able to explain to the school what was really happening inside of Ben's body and brain. The school listened to her and asked her to do a training for staff. It was fantastic. We got Ben an IEP instead of a 504, so he has more services at school. The school has stepped up their game and have supported Ben well since we got the IEP nailed down. He was able to get a laptop to complete his work, so he doesn't have to write things out with a pencil. He has a variety of things in place to help him succeed, and overall he's improved. I still have to keep track of things to make sure his accommodations are being met, and we've had some hiccups along the way, but the school team has had good intentions with following his IEP.

Aidan. *sigh* Aidan. My little enigma. There are some truths I've always known about Aidan. He is an old soul. He is wise beyond his years. He communicates and learns differently than typical kids. 

So how do you put that into words that will compel the school to give your son help? That's the tricky part.

All year, Aidan's teacher has sent home emails, notes, and phone calls, with concerns about how he's doing. Academically and behaviorally. Aidan is a good boy. This year it has been surprising that he has had a few mis-steps behaviorally. I can tell you that I know for a fact that these little one-time issues are due to the fact that Aidan has impulse control problems. He has ADHD. He has executive functioning issues. He doesn't think through things, he forgets about consequences. He is all about "right now." He can't think ahead. He's never trying to misbehave, his disabilities just get the best of him sometimes. 

I got new neuropsychological exams done for all the boys this year. We found out some surprising things about Aidan, which was fantastic because then I know more about how to help him and what to ask school to help him with too. Aidan has a learning disability in addition to everything else. He has trouble with math, as well as visual and auditory processing. These are huge! If you can't process what is going on in the world around you, how will you learn the way a typical kid does? Huge.

Aidan's school team is in the process of evaluating him (despite the fact that we just spent thousands of dollars having a private evaluation done). Nothing will change in his 504 this year, but before the first day of school in August, the team will meet to discuss their findings. Aidan's meeting was tough for me because, as happens every single year when I've asked for my child to be evaluated for an IEP, the team reported that "Aidan is doing great!" I got super steamed. All year, I've been trying to help the teacher figure out how to help Aidan. I've tried different meds for his ADHD because the teacher said certain meds made his ADHD worse, other meds didn't help at all. I'm going crazy trying to figure out why he had a 2-week stretch of misbehavior at school. I'm trying to wrack my brain to think of more ways to help him succeed at home and school. He continues in private speech therapy and counseling. And they say "he's doing great"??? So finally I couldn't take it anymore and I spoke to the team about the impression I had about how Aidan was doing, based on what the teacher had told me all year. I was really pissed off! Every time I get to one of these meetings, the teams says my kid is fabulous. After I've heard for months about how he's not focusing, not starting work, not finishing work, not doing homework, not paying attention, taking too long in the bathroom, etc etc etc. 

The special ed director then said that the team understands that Aidan is doing great because of the supports that are in place with his 504. If he didn't have a 504, he wouldn't be doing great. Then my advocate (I LOVE HER!!) said that the whole reason I had initiated an evaluation for Aidan was due to teacher concerns! I was so concerned about all of her ongoing concerns that I felt it was necessary to have another neuropsych evaluation and ask the team to re-evaluate Aidan for an IEP. Yeah. Take that.

I know the school is doing what schools do. But think about it from a parent's perspective. You hear every single week of the school year how your kid sucks at so many things. How he's not succeeding in so many areas. On and on. Then you get to the meeting and everything is peaches and roses. Then who looks crazy? You got it. Mama. I'm so tired of being looked at as the crazy one. Then you multiply this kind of crappy meeting times three boys (so far no meetings for Ella, fingers crossed), and you feel like you want to punch someone in the larynx.

Yesterday was Jonah's turn for a meeting. My Awesome Advocate and I walk into the meeting room, and as usual, the same 6 faces are already gathered. When you hire an advocate, the school brings their lawyer to your meetings too. And for Ben's meetings, the lawyer brought another lawyer with her. At some meetings there have been up to 10 school people there. Think how that feels when you walk in, alone, to fight for your kid who is struggling. That's why we hired an advocate. For 8 years I've been going in alone. Done. Now I have my Awesome Advocate.

Jonah's meeting wore me out. I said to my Awesome Advocate before a meeting a couple weeks ago that it feels like my kids are on trial. I feel like I have to present enough evidence to show the school that they are in need of more services. I'm tired of being on trial. At these meetings, it feels like not only is your child on trial, but your parenting ability is definitely in question also. Scheduling 3 IEP meetings within a couple weeks is a bad idea, let me just warn you. Don't do it. Take a break in between them. Go to Jamaica. Swing in a hammock. And prepare for the next battle. Don't go in weak and stressed and when your husband has been out of town for an entire week.

So the school lawyer questioned why Jonah has missed so many days of school. Implying that I'm letting him stay home for no good reason. Over and over and over. She had a statistic that if you add up all his absences, it equals about 1 every 2 weeks. Thanks. I needed that rubbed in my face. I wanted to scream "Do you think I like it when the nurse calls me every other week with a sick boy? Oh wait! It's EVERY week, because I have TWO sick boys all the time. Oh WAIT! It's like every other DAY because I have two sick boys in 7th grade all the time, and then the principal and teacher are calling me about my other boy in elementary school all the time and then Ella has been sick several times…Do you THINK I'm enjoying this???" But instead I attempted to stay calm and said I try to get Jonah to school every possible day that I can. And if you look back through his records, he's always been a sick kiddo. He was a micro-preemie and he doesn't have the greatest immune system. I wanted to say I would provide all our doctor's records from this year of sick visits. And that I would provide a list of vitamins and supplements that all my kids are on in an attempt to help their immune systems thrive. I wanted to smack that smug little question of my parenting ability out of the heavy air and stomp on it until it was in teeny tiny little shards. And then maybe punch someone in the larynx.

Later in the meeting, it happened. I was talking about how the school has not followed through with parts of Jonah's 504 Plan. And I was trying to say that I need them to follow through, because I have four kids with special needs. I'm constantly doing all the digging, by myself, to figure out who has what homework. Who has what late work. Who has what missing work. Who is in trouble for something that he actually didn't do. Whose teacher isn't signing off on their assignment notebook like they're supposed to. Whose social worker isn't meeting with them like they're supposed to. Who isn't getting a copy of notes from the teacher like they're supposed to. All by myself. Times four. (Except that Ella doesn't count because she is doing ok at school. So far.) But there are other things I have to keep track of for Ella. So times FOUR KIDS BY MYSELF. (And of course with Alex's help.) And all I'm freaking asking for is for the school to do what they SAID they would do in Jonah's 504 Plan, and send me a weekly email telling me what Jonah's missing work is and why he's failing Social Studies. Failing it every quarter. All year. Is that too much to ask?? 

Yeah. So I started crying in the middle of my speech. Because I'm so tired of all of this. I'm so tired of these meetings. And these people. And having to justify why my boys need help. And having to ward off insults to my parenting skills. If people only knew what it's like, all the work, all the responsibility that goes into daily life with four kids with special needs. I know it's not the school's fault that my kids have special needs. But it is their fault that they said they would do something and they're not following through with it. I'm tired of being a 504/IEP police woman. But if you have kids in special ed, you have to stay on top of things to make sure your kiddo is getting what the law says he is allowed to have at school.

And that makes me tired. I'm just worn out. This week, with Alex being gone, three recent IEP meetings, it's a lot. It's not anything that anyone else can help me with, either. It's just life. Alex said I do most of this by myself even when he is home, which is true. But at least with two parents in the house, I can say "Hey, go get that kid started in the bath while I finish homework with this kid."

I'm done with IEP meetings until August. Then they'll start back up again. But at least I have the summer off. My kids and I won't be on trial for a couple months. 

Before Jonah's IEP meeting yesterday, I had my nails done. My nail lady is a complete riot. I was telling her all my IEP woes, and she made me laugh until my sides hurt. She said I should bring in a bike horn. Put it in front of me. And every time the lawyer said something I didn't like, I should just HONK in her face. My nail lady also said I should come into the meeting wearing war paint on my face. Or dressed in bright orange hunting gear. I said while these ideas are highly humorous, they wouldn't help my argument that I am, in fact, not insane. I have such beautiful people in my life. I'm going to concentrate on that and then maybe the 'stuck-ness' about IEP meetings will leave my soul. I'm going to think about my hilarious nail lady who brings me such joy. I'm going to think about my Awesome Advocate. She told yesterday after the meeting that my tears flowed at just the right time, and the mood of the meeting shifted. The team was more compassionate and not so argumentative. My Awesome Advocate told me after Aidan's meeting that she thinks I should be an advocate and work for her, because I got out my notes at one point and tapped on them with my pen and confronted the team about something in a very assertive way. I would be so lost without my Awesome Advocate. I surround myself with really amazing, gifted people. Thank you, people, for surrounding me when I need to be lifted up. You all know who you are. All of you who touch my life or my kids' lives. Thank you. I cherish each and every one of you.

Ok. I think I can go on with my day now. I feel a little bit un-stuck. I guess I just needed to vent about how sucky IEP meetings can be. How exhausting and sweaty and nerve-wracking and painful they can be. Even when you do have a great school and devoted teachers. And an Awesome Advocate. 

I need to find a hammock to swing in to rejuvenate my soul before summer ends and more IEP's begin.

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?


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.).