Friday the 13th

I am not superstitious. Black cats, broken mirrors, no big deal. But boy did we have a crazy Friday the 13th last week. 

One of my children, who shall remain nameless to preserve is pride, woke me up a little before 5am. He said he had gotten up to go to the bathroom but had gone in his closet to get clothes first. Somehow he had started peeing everywhere. In his room. On the carpet. Not in the bathroom. In the toilet. Where pee normally goes. We do still have some peeing in bed issues with certain people in our home due to the meds they are on to help them sleep. But this type of peeing all over your closet, room, hallway, and bathroom floor like you're wielding a garden hose that's gotten loose is a first. So my sweetheart went to take a shower. (Incredible. Wish this child would pee everywhere more often so he would voluntarily bath more regularly.) I went to get the clean clothes that this child had attempted to get before his urine got away from him.

I realized there was a LOT of pee to clean up. I went downstairs to fetch the dog pee remover. 

Of course the bottle was empty. I should have known then to just go back to bed and wake up on the 14th.

I went back upstairs to check on the showering boy. I came into the bathroom and saw blood spots all over the floor. I looked at my child who was standing naked by the sink, trying to figure out where the blood was coming from. (Please remember it's 5 am, I got to bed late, I was woken twice by other children during the night, and I had had no coffee yet by this point.) It took me a minute to understand my child was telling me he had a bloody nose. This particular child never gets bloody noses. Weird. I taught him how to pinch his nose. I woke up Daddy to man the shower front while I figured out how to de-pee the floor.

By 5:30am I was totally exhausted. But we got it under control.

When it was time to take Ella to preschool, the dog had been being so well-behaved I decided to leave him out of his kennel while I was gone for the 30 min it takes to transport Ella to school. Terrible decision. When I got home, I found our Elf on the Shelf- Bubbles- on the floor in the living room with his face chewed off. Major panic. Ollie had eaten poor Bubbles to bits. Ella and Aidan would be devastated. How was I going to fix THIS?? I've had to do a lot of triage in my mothering years, but nothing to the extent that Bubbles needed. There was just no saving him.

Alex went on the hunt for a new elf. I had Santa write a note explaining to the kids that Bubbles had to come and stay at the North Pole for a Special Secret Elf Project. When Ella found the note in the place Bubbles had been, she was very concerned, until a smile spread across her little face as I read her the note from Santa. All day, she had anyone who was available read the note to her. All her brothers had a chance to read it to her. Daddy read it to her. I read it to her five times. She loved it. 

That night we introduced our new elf to the family. We had a Family Meeting about what his name should be. We had a major war over it, but finally decided on "Cuddles." Let me just say, Daddy suggested "Patrick" and "Bismarck." (What kind of elf names are those?) Needless to say, the rest of the family did not vote for those two names. Sorry, Dad. I think your elf-naming skills have gotten a little rusty.

A couple hours after Ollie had decapitated Bubbles, I found him with a mouth full of candy cane. Wrapper and all. This dog has a crazy sense of Christmas Spirit. I've never had to get candy cane out of shih-tzu beard before, and let me tell ya, it's not easy. 

That afternoon, Aidan had a couple hours of therapy. I took Ella with me and we waited for Aidan to finish. Ben and Jonah stayed home, then Alex picked them up for family therapy and we met at The Therapy Tree. That night was my night to host a monthly support group meeting upstairs at The Therapy Tree with the non-profit I work with- CORE (Community Outreach and Education). It ended up to be the craziest evening ever. The kids were going bonkers after all the therapy they'd had, Alex was stressed out, everyone kept texting me about their woes, all while I'm trying to be run a meeting to help fellow parents who have kids with special needs. 

It was a day full of Crazy. I'm not superstitious, but there are some days that I could do without.

Pee and blood to start my morning. A decapitated, defaced elf. Candy cane to be dug out of a shih-tzu's beard. Kids going bananas after oodles of therapy. Trying to ignore it all, move on, and run a meeting, knowing my family is going completely bonkers.

I knew I should have gone back to bed that morning and gotten up the 14th. 

Pink Flags

We have had an especially tough couple weeks. Rages have exploded unexpectedly like popcorn in a microwave that you forgot to watch. These ferocious explosions of popcorn kernels leave a nasty stink in their wake. Kids don’t seem to be feeling well, but nothing major ever really comes of their icky symptoms. Irritability and weird issues abound. Holidays always make the kids a little out of whack, and so does the change in season. I always forget that until our OT reminds me. Every season. You think I’d learn, after 11 years of dealing with SPD.

Ella’s therapists and I have noticed some pink flags. Not red flags, but almost. So we’ll call them pink. She is making progress in a lot of areas like not shutting down if other kids enter her personal space. Or being appropriately goofy with other kids. Things like that. But after therapy last week, our speech and occupational therapists came out with Ella, and sweetly and gently said they were seeing some things that we need to work on. Just some pink flags, as I call them. Nothing major to worry about yet, but things to work on so that they don’t become major worries. Ella’s body and brain seem to have a lot of similarities to Aidan’s at that age. There are things with Aidan I wish I had recognized earlier as red flags and worked on them more aggressively. So I’m extremely grateful when therapists give me a heads up as to any pink flags they see.

Ella doesn’t open her palms when she plants her hands on a flat surface—she is protecting her nervous system from sensory input. She mis-hears or misunderstands things. She hears things incorrectly. She has some speech thingies that we need to work on. All of this made my heart sink a little.

So again, no red flags, but little pink things to work on before we have to raise a big red flag. We’re attacking the pink-ness aggressively. We’re brushing Ella again, which always almost instantly helps with sleep, mood, and appetite. She’s still not eating great, and is still a little more irritable, tired, and clingy than normal, but she is sleeping so much better! One thing at a time. Watch out, pink flags. We’re on a Pink Banishing Rampage. No red flags allowed.

Aidan got in big trouble at school, two days in a row, for being inappropriately noisy in the bathroom. He pretends to be superheroes all the time, everywhere he goes. So two days last week, he was pretending to be Wolverine during the class bathroom break. Not good. He was yelling, in character, and being loud. Big trouble. Not necessarily because of the behavior just those two days, but because this has been an ongoing issue for Aidan all year. He is completely oblivious to what you can and cannot say or do at school. He has impulse control issues. He doesn’t think through his actions before he does something and understand what the consequences will be. He's never trying to misbehave, he just gets caught up in the moment of excitement in his Imaginary Superhero World. Aidan’s teacher has been quite patient and understanding with him all year about this issue, and so finally he got in trouble. Two days in a row. Not good. Aidan usually has no behavior problems at school, so this was a blow. Both to him and me. This made my heart sink a little more.

Ben. Dear sweet Ben. In tears after school one day, he sat on my lap and wept out his anxiety about school. He poured out everything that is happening there that he is worried about. He says he cries at school most days. He tries to hide it so he cries at recess or in the bathroom. He said that sometimes he needs a break so badly that he climbs into his locker and shuts the door and takes deep breaths.

Now my heart was as low as it can go, picturing my poor little boy scrunched in his locker, taking deep breaths because the world is too overwhelming and he needs a small break, and this is the only place at school where he can find peace and strength to continue with his day. As my boy sat and wept, I prayed for strength to not dissolve in a puddle of tears myself. My heart is so entwined with my children’s hearts that when they feel such deep sadness I feel tangible pain too.

I emailed Ben’s school team that night and explained what Ben had told me, and let them know he did not want me to tell them because he is embarrassed to be struggling so much. But I said this is totally unacceptable. We’ve taken away his ability to call me from school when he is anxious. We’ve taken away his comfort of going to the nurse’s office when he is anxious and needs a break. So he has to have something to replace those things in order to continue being able to handle the stress of school.

So far I haven’t heard back from the school team, but I understand that before the holiday break everything at school is nuts. So if I haven’t heard anything by the time school starts in January, I might be knocking on some doors.

I think that for some kids, they do school on autopilot. They do what needs to be done. They get ready for school like they’re supposed to, do their homework when they’re supposed to. They just ‘get’ how to do school. It’s not that easy for my boys, which is a frustration for our whole family. Homework is a logistical nightmare. Yes, the school has a website where homework is posted. Yes, the boys have assignment notebooks where they are supposed to write down all their homework each day. Yes, both boys have a resource period where a teacher is supposed to keep on top of what is due when for the boys, help them with study skills, etc. Yes, I’m supposed to check the website every day with the boys and sign their assignment notebooks every day also. That’s the Great Plan for School Success. And you would think it would work and the boys would be successful.

But no.

Somehow even with all those things in place, homework isn’t done. Homework is missed. Misplaced. Forgotten. Thrown away. The boys don’t get the right worksheets. They don’t know what is due when. They leave their assignments at school that should come home, and vice versa. They don’t always write down all the homework assignments. Some days I spend so much time driving kids to therapies and psychiatrist appointments that I forget to check the school website. Sometimes Mr. Literal (Ben) refuses to do a homework assignment because it would be late and so the time has come and gone for him to be able to turn things in so he CANNOT do the assignment. Jonah doesn’t understand that even if you turn in an assignment half done, you’ll get more points on it than if you don’t turn in anything. So you might get a C grade instead of an F. We’ll be happy with  C! We’ll be satisfied with a C! Turn in a half-done assignment so you can at least get a C!!!

My poor old heart can’t take much more of this, I tell ya. As a parent, you live for your kids. You love them like crazy and want them to be healthy and happy. So when all all all of them have a week where they are struggling and weird things are happening that don’t usually happen, it really hurts your heart. Most weeks at least one kid at our house is struggling with something, but usually not all four. Quite an adventure these past few weeks. I hope that just being there for our kiddos, over and over, every single day, as best I can, will help them gather strength to face all their struggles. We'll stay vigilant and strong, and work to eradicate our pink flags that sag our weary hearts.

Gratitude

My youngest son recently turned 8. I remember turning 8. It was my "golden birthday" - when you turn as old as the date of your birthday. We were in Africa, so Mom had had to figure out two years in advance what her 8-year-old daughter might like and pack that into barrels to ship out to the bush of Africa. I got blue and yellow roller skates that year, and it was the best gift ever. My darling husband asked with loving sarcasm in his voice "Where did you roller skate if you didn't have paved roads or sidewalks?" I'll have you know that we had roller skating parties in the Bible School where my dad taught students who would become pastors. Mr. Smarty Pants. The missionary kids would gather once in a while and skate together in the big room with a cement floor, tables pushed to the side of the room. I don't think we did it very often, but I remember it being the most fun ever.

As my kids pass different milestones, it brings back memories of my own childhood at that stage. When my twins turned 7, I realized how small I was when I had to go to boarding school. Now that they are 11, I realize how independent I had to be, and how good at it I was much of the time. Sometimes I hold my kids to a higher-than-necessary standard because of who I had to be during my own childhood. Since I wasn't with my parents except every other week for a weekend, I never got help with my homework! I didn't have a computer because we didn't have electricity all the time! I didn't have someone holding my hand through life the way I do for my boys. Which is also why I do all those things for them. I'm glad I can provide a constant source of support for them like I didn't have all the time.

When I'm frustrated thinking about all the things I had to do on my own at my kids' ages, I try to remember that they are completely different beings than I am. They live in a different world, they have different challenges, they have a totally different experience living life than I did growing up. They have access to anything and everything they could ever imagine wanting or needing. They have 800 types of shampoo to choose from at the store. They can get anything they want to eat at any time. They know things about computers I will never understand. They ride escalators like it's no big deal, and tell me with sweet concern "Mama, I'll hold your hand because I know you're scared of escalators." 

I try not to judge my kids based on my own childhood. My own childhood was unique and amazing and gave me so many gifts that have made me who I am today, and I am very grateful for those experiences. I'm worried whenever our kids have a present-recieving holiday that they will be disappointed with what they get, that they will want more, bigger, better things. But they always surprise me and are very grateful for the things they get. On Aidan's birthday he was overjoyed to get the gifts he got. He was thrilled with the little Minecraft cake I made for him. He was grateful. It puts a smile in my heart knowing that my children know the feeling of gratitude and contentment. 

We fight a lot of battles every day in our home. Sometimes World War III erupts because Daddy asked a boy to put a container back in the fridge. Sometimes we have meltdowns because a boy doesn't want to brush his teeth, or walk back upstairs to get his socks. Most days there is at least one boy trying to get out of going to school, wanting to stay home because of anxiety. Pretty much every single thing that the kids have to get done every day has the potential to be a huge battle. Every thing. From getting out of bed in the morning and getting dressed to taking a shower or bath to doing homework to getting in the car or getting out of the car to having to wear a coat in winter...

When you fight battles all day every day, you tend to get worn out. You have to find ways to stay fresh, joyful, strong. You have to find ways to take care of yourself. I hate it when people ask if I'm taking care of myself. I guess it's because I know I'm supposed to do that, but often there is just no time or I just don't have the energy. Sometimes I'm good at taking care of myself, and sometimes I'm not. I just do my best. I try to do the best I can to take care of my kids and my marriage and myself. I'm human, so sometimes I'm not very good at these things. Sometimes I totally rock at them. It just depends on a lot of factors.

It's good to remember that when it really matters, my kids know how to be grateful for the blessings they have. They know how to be kind to others. They know how to be compassionate. I try to remember these fantastic qualities my children have when I'm battling yet another fight about eating dinner when it's dinner time or putting on pj's to get ready for bed. In the big picture of life, I hope my kids have the skills they need to be happy, healthy, well-adjusted people. Every milestone my kids hit, I am reminded of my childhood and how different my kids' lives are from mine. But some things stay the same because my kids are part of Alex and me, and we are content and grateful for what we have. Hopefully our kids will always be able to see the blessings they have in life too.

Victory!

IEP meetings are finally over. I did a lot to prepare for them, and I'm glad I did. As we were going through the meetings, I thought about how lucky I am that I have my social work background, and that I specialized in school social work. IEP meetings are so stressful and confusing, even if you know a little about what you're talking about. I can't imagine how hard it must be for parents who don't have a background in this field, who are being thrown into this for the first time. The laws are intricate, the school policies are complicated, the lingo is foreign...I really feel for parents who aren't used to all this.

We spent four hours at the school yesterday, hashing out how to best help Jonah and Ben. We had Ben's meeting first. The team had to decide if Ben qualifies for special education given his current level of disabilities. The team kept teetering between giving him an IEP and just keeping him on a 504 Plan. I had met with an IEP expert at The Therapy Tree several times to talk about how I could best help the boys get what they need during the meetings, so I was prepared with my points of concern. Every time the team paused and started leaning towards not giving Ben an IEP, I piped up with another valid, well-thought-out concern. It was a long, intense meeting. While the team debated, every cell in my body was screaming "Give him the IEP! Can't you see it's exactly what he needs?" Finally a team member said "Just give it to him! He needs it!" Yes. Yes. Yes. 

The only special education minutes Ben will receive will be social work, which he is already getting weekly anyway, and a special ed resource period. I know Ben may hate this resource period, because there is a smaller ratio of students to teacher, and so more attention will be paid to whether Ben has completed his homework, helping him learn study skills, organization, how to break up long term projects, etc. But this is what he needs. This will help him. Even if he hates it.

Ben will maintain his eligibility for his IEP for three years. So this will carry him through 9th grade. I can't wait to start seeing the benefits of this extra help he will get now.

Jonah still has a 504 Plan because he didn't qualify for an IEP. The good thing was that we amended his 504 to reflect his current level of needs, and so we were able to make sure he is still getting what he needs to succeed at school. I told the team I don't care what we call the plan that the boys qualify for. I don't care if it's a 504 or IEP. What I care about is that there is documentation about how the school will meet the boys' special needs because of their disabilities, so that school is a place the boys can be successful. 

So we're happy. The boys will get what they need at school. The team listened to everything we had to say, all our concerns. We are blessed to live in this district, because this has always been our experience with our school. Every time we have a 504 or IEP meeting, I completely freak out with anxiety. I prepare for weeks ahead of time. I research. I get all my materials together and study them. I ask therapists, psychiatrists, and IEP experts for help. I focus all my energy on figuring out how to best present my concerns so that the school understands what I'm seeing at home and can find a way to help the boys at school. So now that the meetings are done, I'm totally wiped out. I feel like I've been put in a washing machine on spin cycle for weeks. I want to put on a pair of sweats, crawl into bed with my fuzziest socks on, drink hot cocoa with marshmallows, and watch Meg Ryan movies until I feel human again. 

But Jonah is still sick. And kids still have to get up and get help to go to school. And we still have therapies. And the dog still has to go out so he doesn't use my carpet as a toilet. 

So there will be no Meg Ryan movies. Life goes on. I am very happy we have this small victory for the boys. I hope they begin to feel some change in regards to school. I hope things get clearer for them and they're able to function better both at home and school because of the changes we made. Hurray for victories!

Home Depot Pumpkins

Fall is my favorite season. I love the colors, the smells, the leaves changing. It feels cozy and hopeful, and with every leaf that leaves its branch you know you are closer to the holiday season. A few weeks before Halloween, we decided it was time to get our pumpkins. It took us most of the morning to get the kids ready and willing to get in the car, but finally we made it. Everyone was in the car, some happier than others. We started the trek to the pumpkin farm, which is my favorite part of every Fall. I was anticipating the apple cider, the hay ride, the pictures of my adorable children with goofy smiles on their faces...I had a Halloween movie on the car's DVD player, we were talking about Halloween costumes and parties. Getting in the mood.

Then it started to rain. Actually, pour. 

With much trepidation, Alex and I decided it just wasn't possible to visit the pumpkin farm that day, because even if the rain stopped, everything would be wet wet wet. I gingerly broke the news to the little people in the back seat. 

They went ballistic.

We finally figured out that they weren't so disappointed that we weren't going to be able to go to the pumpkin farm as they were devastated that they couldn't carve pumpkins that day. To them, carving pumpkins was the most important part of the day, not doing Fall-y stuff at the pumpkin farm.

Alex said, under his breath so only I could hear, that maybe we should go to Home Depot to get pumpkins to carve this year. 

HOME DEPOT?!? HOME DEPOT FOR PUMPKINS?!?

That goes against everything I hold holy about Fall. Home Depot is a wonderland of home project possibilities, and I love it there, but it is definitely not a pumpkin farm. Home Depot does not have hot apple cider and cider donuts. Home Depot does not have falling leaves and sweet picture opportunities. Home Depot does not have the ambiance of a pumpkin farm in Fall. I just about wept at the thought of Home Depot pumpkins.

But then I thought this was one of those times when the needs of my children outweigh my desires, or what I feel is important. I decided that what really was important about the day was to get pumpkins, regardless of where they're purchased, and carve them. So I agreed that we could go to *gasp* Home Depot for pumpkins.

It actually worked out great. There was none of the overstimulating things that end up making our pumpkin farm visits a nightmare. The pumpkins at Home Depot were sitting out on the front sidewalk, covered with an awning so we didn't get wet while choosing the perfect ones. There was no music, no swarms of people, no endless walking, no mud and hay to get in our shoes, no smells to overwhelm our noses, no games or rides to fight about "doing first," no snacks to spend a million dollars on, no miles and miles of pumpkins to make a child with ADHD and SPD overwhelmed to the point of shutting down because how could he possibly choose just one pumpkin out of the 8000 choices that were available?

It was just a few pumpkins, stacked on the sidewalk, at Home Depot, in the rain. My kids were happy. I swallowed my disappointment as I watched Ella prance around picking her pumpkin, and saw that although it still took Ben an insane amount of time to make a decision, he wasn't overwhelmed. No one was fighting because they were exhausted and overstimulated and frustrated. They just were picking pumpkins in the rain on a sidewalk. So I tucked this knowledge into my heart and decided that I needed to be ok with the fact that sometimes my expectations have to change for the happiness and well-being of my children.

We took our specially-picked pumpkins home and carved them. The kids were happy.

The kids had the following Monday off from school, so I took them to a pumpkin farm that day instead. It was wonderful, for the most part. The air was pristine and perfectly Fall-like. We rode all the rides and played all the games, at least three times. We had lunch at a picnic table. We spent all day having relaxed Fall fun. Without Daddy, which was sad for me but made Daddy happy because he doesn't get as big of a kick out of the whole pumpkin farm as I do. He feels more like the kids do at those places- overstimulated, suffocated, exhausted, and overwhelmed. And crabby, don't forget how the rest of my family gets very crabby at these farms. In fact, it is quite possible that from now on I should just rent a family and go with them to the pumpkin farm. My family really doesn't enjoy it that much, and I force them all to go every year because you HAVE to go to a pumpkin farm in the Fall! It's Mommy's Rule! There aren't too many things that are as important to me as going to a pumpkin farm. Maybe because I didn't get to do that special Fall activity as a kid, I am filled with excitement every year at the prospect of all the Fall activities I will get to do at a pumpkin farm with my kids.

Sometimes it's so 'in my face' that my kids have special needs and need special accommodations. Accommodations from the world, from school, and also from me. There are many times when I have to adjust my expectations, and lots of times it's not too hard. However, when a pumpkin farm was involved, it was extremely difficult for me to change my expectations and give my kiddos what they needed in the moment. I did it, but it was really hard. I have hopes and dreams and expectations like any parent, and when something that is important to me has to be changed for the sake of my kids, it takes a little time for me to be ok with that. I get there eventually- like when all the kids were blissfully carving their pumpkins and sticking their hands in the oozy, gushy pumpkin guts (something they used to all be afraid of!), I knew getting Home Depot pumpkins that day was the right decision. And I still got to go to the pumpkin farm, it was just a pumpkin-less excursion. 

3 Minutes of Boredom

For about three minutes last week, I was bored. Actually bored. There were no sick kids to pick up from school. There were no rages happening. There were no teachers letting me know that my kids were having challenges. There were no therapies to go to at that one moment in time. I told my dad I thought I might need to get a job because boredom and I just don't mix. He said if I was bored for a good solid three months, then he could see me getting a job. Otherwise, he said, just wait. You'll have another crisis before you know it. Of course my Daddy was right.

Last week I got an email from one of the boys' teachers saying that she was very concerned about the fact that they had book reports due in about 4 days, hadn't read a book, one of the boys hadn't even chosen the book, hadn't completed the report, and are currently both failing her class. She said she was "passing the assignment of the book report off" to me, in hopes that I would be more "convincing about the importance" of this assignment. I wrote back and said that I have been trying desperately to get the boys to read a book. I try desperately to get the boys to do anything and everything they are supposed to do in life. Showers, homework, therapies, clean underwear...This is not a laziness issue for the boys. This is lack of executive functioning skills. The boys struggle like this in every single area of their lives, from daily living skills to academic to emotional. This is just how their brains work. No amount of arguing, wheedling, pleading, yelling, bribing, cajoling will ever change this. Believe me, I've tried all those things. Many times, I work way harder trying to get the boys to cooperate with whatever I think they need to do than the effort it would take for them to just do it.

I can tell the staff at school are getting frustrated with the boys. Jonah's social worker had a chat with him this week and he felt she was very tough on him about homework, completing it, turning it in, working hard, etc. These are all skills that need to be improved upon, but that will come with time and practice, not chewing my kids out. A teacher recently told the boys they were failing her class anyway, so it didn't really matter if they turned in their worksheets or not. 

I can tell the staff at school are going through the process I have been through, where they're trying different approaches with the boys to see if anything will get through to them to motivate them to finish their work and get it together. The teachers have tried the compassionate, understanding approach. Then they've moved on to the tougher approach. They've being firm, yet encouraging. They're edging on scare tactics now. Telling the boys they will fail, no matter what they do. That it's not worth turning in late work because they won't earn enough points to make the assignment worth doing. I understand these tactics because I've tried them all myself. I can't blame the school for doing these things. But nothing works unless the boys themselves feel invested and motivated. The boys are just the way they are. Their brains are doing the best they can. The fact that they get overwhelmed when asked to brush their teeth and put their shoes on tells me there's a good chance they're overwhelmed with 6th grade academics also. It's not a question of a cognitive disability. It's an executive functioning, frontal lobe, disability. They're doing the best they can. And, sadly, their best is not currently good enough to meet the expectations at school.

Which is why tomorrow we are having IEP meetings to see if the boys will qualify for more help. I got the reports from the school psychologist and the boys test in the average range overall for everything. Every test. Every evaluation. There are some minor concerns here and there that dot the horizon of how the boys are perceived to function at school, but overall, they test average, act average, hide their problems so they appear average. I'm happy about that, it is a true blessing that the boys have enough courage and strength to make it at school without completely sticking out. But I'm very concerned because the school sees the external things that happen with the boys, but the internal things come out only at home. Because of the boys' anxiety, stress, feelings of being overwhelmed at school, when they get home they let it all out and let me in to see what a ball of nerves they are from holding it together all day. I can see they're disorganized, confused, overwhelmed, discombobulated, and exhausted. This isn't an ok way to get through your school career.

The other thing that really worries me is the fact that the boys have such poor immune systems because they were so premature. They miss a lot of school. A lot. Sometimes it is due to anxiety, but for the most part it is due to illness. It's hard to explain, but the boys have such sensitive nervous systems it seems, that any minor illness makes them feel completely horrible and they can't function at all. So although their fever might be only 100 degrees, they feel like it's 107 and they're dying. They can't concentrate or focus. They feel they can't survive at school. They come home and shrivel into the fetal position for as long as it takes to feel better. Even if it's just a cold! Jonah has come home sick three times in the past three weeks, including today. I took him to the doctor, who said it's not strep. They're doing blood tests to check for mono, among other things. The boys are just always sick. Last Friday, I had to pick up Aidan AND Jonah from school because they were sick. I never know when all my plans for a day will have to be thrown out because a boy is sick, yet again.

When the boys feel sick, they can't function at school. When they miss school, they feel more anxiety. They miss more work. They get behind. Which makes them feel more anxiety. Which makes them want to avoid school. Which makes them feel more anxiety. It's a vicious circle that I can't break for them. I am doing absolutely everything I can think of to boost their immune systems and help them be healthier, but it doesn't always work. I want help from the school with this. There has to be some way to help the boys keep up with everything even though they miss a lot of school.

I'm nervous about our meetings tomorrow. The bottom line is that I want more help for the boys so that I can see that their level of daily functioning at school is up to par with their cognitive potential. That's not too much to ask, is it?

Last week I got another email from Aidan's dear teacher. She let me know that for the past few weeks, Aidan has really been struggling with focus. She reminds him to pay attention, and sometimes that helps. But he's struggling. I told her that I'm frustrated because I'm doing everything I can on this end to help Aidan. He's on vitamins and supplements and medications. He gets an essential oil blend for ADHD on the bottoms of his feet before school (when I remember). He has fidgets and chewies. He gets all kinds of therapies. At some point, I realized, I'm doing all I can do. The rest is up to Aidan's brain. And I also realized, his brain is doing the best it can. I'm priming it for success, and this is what success looks like for him at this point. He's doing the best he can. The teacher understands this, and I told her I appreciate so much how she keeps me informed. It helps me get a whole picture of how Aidan is doing, so I can be a more effective advocate for him.

Last but not least, little miss Ella has a bit of a diaper rash type deal going on, even though she's long past diapers. So convincing her it won't hurt to pee, and it won't hurt to take a lovely baking soda bath every night, has been like TORTURE. Mostly for me. And also for her. Why don't kids believe me? After the first night when she had succeeded at going pee and I had put her in the bathtub "the hard way" and she realized it wouldn't hurt, Ella said "Mama. You were right." I said I know! You have to believe that I will always tell you the truth! If something will hurt, I will tell you! She said "I know. You never joke me." That's her way of saying 'trick' her. My kids should know by now that when I say something won't hurt, it won't! Crazy kids. How old will they all be when they finally realize this??

Not only have there been crazy things like teacher emails happening recently, but there has also been the normal level of crazy: yucky behaviors because kids are sick and so more crabby and irritable. Kids being even more overwhelmed than usual with demands like put on shoes, take a shower, do your homework. Kids fighting with each other more than usual. Kids fighting with neighbors more than usual. Kids refusing to eat meals, take meds, brush teeth, put on clean socks...I'm worn out. 

As one of my friends said recently, it's the thinking about everything your kids are going through that exhausts you. Yes, it's the running around like a chicken with your head cut off too, to all four kids' therapies, doctor's appointments, psychiatrist appointments, school appointments, extra-curricular stuff, etc. But man, the thinking can get to you. I spend the majority of every day, I think (no pun intended!), just thinking about my kids. About their disabilities and special needs. About their medicines and behavior programs. About their dietary needs and sensitivities. About therapies. About supplements we should maybe try. About school. About what I can say to convince school that the boys need more help to be successful. About anything I can think of or research about that may help any one of them with any one little thing. I think about it when I lay in bed at night and can't sleep because of worry. I think about it when I'm stopped at a red light. I think about it in waiting rooms. I think about it in the shower. I think about it when I'm tying their shoes in the morning. It's exhausting! If I was paid to brainstorm about my kids and their special needs, I would be a wealthy, wealthy woman.

My dad pointed out I don't do well with boredom because I thrive under stress and pressure, and am good at multi-tasking all the unique challenges our family has. Thank goodness I listened to his advice and didn't run out to apply for a job last week during my 3 minutes of boredom! Because sure enough, we've been bombarded by our usual level of chaos. Maybe even a bit more than usual. I just keep telling myself once I get through the meetings tomorrow, I'll feel wonderful and light (assuming I get what I want) and I can take down Fall decorations now that we have snow and put up Christmas ones with joy in my heart. (Don't tell my mom I've already been listening to Christmas music. For some of us, the holidays can't come early enough or last long enough!) And just move ahead to the next challenge that next week will bring us. 

Once I get through the meetings tomorrow. And Jonah gets better. And Aidan starts concentrating better. And Ben picks a book for his NEXT book report. And Ella's rash goes away...at least there is no more boredom around here. Those three minutes were uncomfortable and miserable for me. But maybe a little peace and boredom would be ok once in awhile. Maybe like two minutes.

Worms and Candy

Yesterday, Aidan got off the bus after school and carefully, thoughtfully walked up the driveway, looking all around on the ground as he walked. Instantly, I knew he was looking for worms to save. It had rained a little bit and Aidan was on a mission to return any and all earth worms to their lovely cozy home of the lawn. It reminded me how insanely, irrationally scared he used to be of worms. A couple years ago, if it rained, I would be in for a day of carrying Aidan around outside while he shrieked in horror at all the worms on the ground. He refused to play outside after it rained. He refused to walk across the driveway. He just couldn't deal with it. He was terrified of worms. 

Many things have changed since our Earth Worm Terror days. Now Aidan is best buddies with any worm he finds. He is able to navigate the worm-filled driveway after a rainstorm. There are so many little things that you forget were a problem, and when you do think about it, you realize how far you have come.

Halloween is another thing that has changed for our kids. It is usually a mine field for them. The excitement and stress of getting costumes on after school, finding friends to trick-or-treat with, ringing strangers' doorbells, getting as much sugar as you can, all lead to meltdowns of epic proportions by the end of the night. Times four. This year went a little bit better in many ways. No one had to wear makeup, so faces felt normal. Ben and Jonah went to a friend's house to share the Halloween festivities. I took Aidan and Ella out to brave the rain, with clear ponchos that I had bought at the dollar store so everyone could still see their costumes. Ella had trouble walking at first because she kept stepping on her poncho. So I got a scissors and cut off a foot of it. She declared with a thrill of amazement in her voice "MOM! You are my HERO! You are amazing! You are the best mom ever!" Sheesh. Who knew that's all it would take to earn Best Mama Of The Year?

Aidan and Ella were thrilled that trick-or-treating time was finally here! Ella couldn't run in her princess shoes (which were too big so I stuffed kleenex in the toes- another Ella-proclaimed Mother Of The Year moment), but she waddled through the puddles as fast as she could as Aidan dashed up driveways ahead of her. Three houses down the street, Aidan had a huge hissy fit about wearing his poncho. Fine. Take it off and get soaked. One block into trick-or-treating, Ella was fussing because her shoes were soaked, Aidan was tired and whiny and wanted to go home because he was wet. Fun times. We headed home to regroup.

The kids changed into dry clothes, but Ella put her costume back on and insisted on going back out to trick-or-treat. Once Alex got home to man the candy station with Aidan, Ella and I went back out into the soggy Halloween evening. That girl was a trooper! She didn't complain once about anything. She walked the whole way and didn't ask to be carried. She took her doorbell ringing very seriously. She loved saying "Twick oh tweet!" to strangers. It was so funny. And fun. And super wet. I kept asking Ella if she was ready to go home and the answer continued to be "No!! Not yet!" I followed her soggy little poncho down the sidewalks of our neighborhood as her tiny purple princess costume sashayed underneath. She was a girl on a mission. She had been promised trick-or-treating, so trick-or-treating we would go until we dropped dead from exhaustion or hypothermia. Or sogginess.

Finally we came home and Ella took a bath to warm up. As I washed her hair, she declared I had "smashed" water into her eyes. (Instead of splashed. Made me laugh so hard.) She also said this had been the best day ever, and she had SO much fun! She asked when we could trick-or-treat again. 

Aidan was done with the whole Halloween thing early, which is typical for him. Ben and Jonah had a blast because they could go do crazy boy fun stuff with their friends while they trick-or-treated. Ella took Halloween very seriously and was excited to finally be able to ring doorbells and get candy. All in all, it wasn't a bad day. Jonah and Ben got home and spread their loot all over the floor in Ben's room. They did their yearly trade tradition- Jonah gave Ben all his candy with peanuts, Ben gave him non-peanut candy. I let them stay up a little late and organize their stash of sugar. When it was bedtime, of course there was fighting, but given the fact that A. fighting is normal at bedtime, and B. they had more sugar than normal in their bodies, this was to be expected. If that was the worst part of our Halloween, that wasn't too terrible.

It's interesting to see your kids changing year after year, and to look back and see how far they have come. Jonah and Ben used to be terrified of trick-or-treaters at the door when they were toddlers. Masks, weird costumes, it all reminded them to much of dreaded puppets. Halloween was very difficult for many years. But it's gotten manageable. I'm grateful for manageable. From worms to trick-or-treating, I have to keep reminding myself of the positive changes the kids are in the midst of. That way when hard times come, I can think about all the things that are going well and improving. Here's to worms and candy!

A Smile In Our Hearts

Some mornings our family runs like a well-oiled machine. Not many mornings, but some. And on those mornings I feel as though I'm singing an opera with the angels and we're all incredibly, beautifully in tune. 

This morning happened to be one of those mornings. I've realized there are two keys to having a peaceful morning: one thing is that all the boys have to be in a semi-decent mood, which is something I cannot control. The second thing is that I have to be able, and willing, to help the boys with things that easily frustrate them. Things like getting dressed, putting socks on, putting shoes on, finding something for breakfast, brushing teeth, putting everything for school into their backpacks. If there is any disorganization, any frustration, anything that overwhelms any of the boys, all bets are off and the morning takes a turn for the worse. But today, all my children woke up rested and ready for Monday. Aidan didn't refuse to get dressed like he normally does, or stall with indecision about what to have for breakfast because his meds make him not hungry and nothing sounds good. Ben didn't refuse to get out of bed or complain of not feeling well, like he does most mornings because he doesn't want to face school. He only took 20 minutes in the bathroom, getting dressed and carefully spraying each armpit with an entire bottle's worth of deodorant, instead of his typical 45 minutes of prep time. When I went into Jonah's darkened room to rouse him this morning, I softly sang "Good morning Jonah" like I always do. As I opened his curtains, he THREW back the covers and said "HA!" as he revealed that he was FULLY DRESSED!!! Miracles do happen, people. We didn't have to fight about putting his clothes on this one morning. What a gift.

When Alex was done taking his shower and getting ready for work, he came down and was on dog/kid duty while I took a shower. Alex took Aidan to the bus stop, which went well (!) and then went to work when I came downstairs after getting ready. Well-oiled machine, people. Ben and Jonah went to school fine too, which is another miracle. I didn't hear a single complaint about the day. Incredible. I even got a half cup of coffee this morning before Ella and I had to rush out the door to her preschool field trip! 

This morning, all my children's moods were calm and relatively happy. I was available to them for whatever they needed. I went back upstairs for Ben's socks, because that totally stresses him out- having to go to up to his room for a forgotten something. The boys have always been that way about going upstairs once they are downstairs. I was there when Jonah needed help tying his shoes. I was able to help all the boys get all their items into their backpacks for school. I helped them find their coats (except Jonah who had left his at school on Friday, and today after school when he still had not located the coat he said he thinks he lost it, actually. Gr.) and hats. I basically ran interference all morning. Which is typical, but the kids were calm AND I was calm, which is sometimes not that typical. 

Alex and I both struggle when it comes to things like how much to help the boys get ready for the day. They are chronologically old enough to get ready for school independently. But emotionally and mentally, they just aren't there many days. We have realized that if we help put socks on a boy who is already frustrated, we can avoid an hour-long meltdown. If we find and hold a coat open for a boy's waiting arms, we can avoid the frustration of our son being overwhelmed at the mere idea of tackling the coat on his own and having a meltdown. 

We chuckle at the irony of how our 4 year old is in many ways much more independent than any of her brothers. And she is starting to realize that she is different than them, in ways I didn't think she would notice until she was much older. The other day one of the boys was having a meltdown. In exasperation, I said to Alex (I didn't realize Ella was listening) "Why do they all have so many problems all the time?" Ella piped up "We don't ALL have problems! Just the boys. Just Ben, Jonah, and Aidan. I don't have so many problems. You don't have so many problems. Daddy doesn't have so many problems. Just the boys." Huh. Ya got that right, sista. 

My daughter is incredibly perceptive and intuitive and wise. When she sees me stressed out, she rubs my arm or gives me a hug and says "I'm sorry you're having a tough time, Mommy." She is so empathetic and compassionate. My boys have all these qualities too, but there is an ease with which Ella experiences these characteristics. I don't see her struggling with life the way all her brothers have to. Life comes gracefully to Ella.

Another great thing about Ella is that although she sees differences in how her brothers struggle and react to life, she doesn't see these differences as negative. It is hard for all of us to be in the presence of a boy who is raging or freaking out with anxiety. But Ella loves her brothers with her entire soul. She is kind and sensitive towards them. She rubs their backs, if they let her, when they are sad or angry. She 'gets' them in a way I have never had to teach her, it just comes naturally to her. I see myself in her in so many ways. I know she loves her big brothers with the kind of solid, warm, unshakeable love that I also feel for them. I love that about Ella.

I have started to teach Ella how to handle the stress of a brother's extreme meltdown- by going to a different room with the brothers who are not having a problem, or going to her bedroom to read a book so she doesn't have to listen to all the yelling and crying. I have also seen how important it is to look her calmly in the eye when the world is crumbling around her, tell her that no one is mad at her, reassure her Mommy is fine and her brother is just very upset right now, and that she can go to a different room so she doesn't have to be a first-hand witness to chaos. Often the brothers who are not involved in the big problem take Ella with them and go play somewhere else in the house. That is something I never taught them to do, they just instinctively know to take their sister and head out of town. I realized I have to help Ella understand how to protect herself from the extreme-ness of our family, because she is so sensitive and feels so much. Sometimes it is very difficult to juggle the needs of all of my children at one time. Sometimes I feel schizophrenically discombobulated because while I'm firmly talking above a boy's tantrum to help lead him to peace, I have to make sure the dog isn't using my carpet as his toilet because he's freaked out, and calmly remind Ella she is safe and loved (she can sense if I'm truly not calm and then that freaks her out even more), and get the unaffected kids out of the room, all the while making sure the kid who is having the problem is safe and attempt to de-escalate him. I wish I was an octopus. I need more hands. 

Ella is a gift to all of us because she reminds us of what is possible: pride in being independent. She reminds us how to be compassionate and love unconditionally. She lets me see what it is like for a child to develop a bit more typically. She gives me hope that one day all my children will not struggle with the little things in life like they do. Because when you struggle so much with the little things, like brushing your teeth, imagine what a struggle the big things are, like going to school. 

This morning I think Ben, Jonah, Alex and I were still coasting on the 'high' of yesterday. Yesterday we bought the DragonSpeak program for our computer. We have had the app on our iPad, but it never worked well. So we gave in and shelled out the big bucks to get the real thing. It. Is. A. Miracle. It's a program that has the human wear headphones with a microphone, and the program types what the person says. For children with a disability like dysgraphia, which affects writing in a major way, this is an absolute miracle. For the first time EVER EVER EVER, Ben and Jonah both completed book reports yesterday ALL BY THEMSELVES. First time ever. Did I mention EVER?? You have no idea what a true miracle, what a gift, what a respite this was for me. I feel shackled to our homework table every single day. Not only do I have to sit there with each boy as they complete each assignment because of ADHD distraction issues and anxiety issues, I also have to write down most assignments for them because of their writing disabilities. It's frustrating but I do it because it's the only way I can get my boys to re-route past their frustration and anxiety and actually complete their homework. So having Jonah and Ben both complete a major writing assignment all by themselves was simply amazing. 

Once in awhile we uncover a shining, perfect gem of a treasure, and yesterday that happened. This morning we were a well-oiled machine, Mommy and Daddy tag-teaming it so that six people and one dog's needs were met and no one had a meltdown. I wish this happened more often, where we begin the day without meltdowns, because it sends all six of us off into the day with a smile in our hearts. It's a lovely way to begin the dawn of a new day.

I never count on two mornings of bliss in a row, but instead when reality comes back to smack me in the face, I will remember with gratitude the morning that was perfection. I will rejoice in the little victories. I will cherish Jonah's startling "HA!" as he wiggled with pride from under his blankets this morning, fully dressed down to the socks! 

Here's to the well-oiled machine making a comeback tomorrow morning. Here's to all six of us heading into another day with a smile in our hearts.