The Squeaky Wheel

They say the squeaky wheel gets the oil. I try not to be an annoying, overbearing, aggressive squeaky wheel when it comes to advocating for my kids, but still firmly squeaky enough to get the job done. I've found that for me, at least, it pays to be respectful, patient, and honest. That's how I get the most done for my kids.

I think we're getting the Jonah Wheel good and greased up this month. He's just been struggling so much, in every area of life, for the past couple months. I try to wait and watch, try not to be too reactionary, and try to be patient while I wait for changes. Sometimes the holidays cause major chaos in my kids' internal ecosystems, so I waited to see how Jonah was once we made it through the holidays. 

I waited until Jonah got over all his lingering viruses left over from school during winter break. When Jonah is sick his whole body and brain are thrown off for weeks. 

I waited for the tweaks the psychiatrist made in Jonah's meds to take effect. Unfortunately, the tweaks that were made caused Jonah more anger and frustration, so we undid the tweaks. Back to square one.

I waited to see if the elimination diet that Jonah is on (as well as the rest of the family) would bring him relief from his tummy aches and behavioral struggles. The diet has worked wonders on Jonah's twin brother's behavior, but I haven't really noticed any differences in Jonah. His tummy aches are a bit less frequent, but still present. Mainly due to anxiety, we know. When you're 10, how do you know if your tummy hurts from your diet or from your worries? 

Two or three days a week I get a call from the school nurse. Jonah is in her office, upset, anxious, complaining of aches and pains, wanting to come home. After the holidays I sent out a team email to all the school people involved in Jonah's life and let them know how I want to handle Jonah's Anxiety Moments. I told them that unless Jonah was really ill, I was not coming to pick him up from school. Also, I didn't think it benefitted him to sit in the nurse's office for a few hours three times a week. I asked if the social worker would be available to see him when he is upset. I asked the teachers to check to make sure Jonah has the right homework so that doesn't add to his anxiety. I asked the math teacher if Jonah could meet with her one-on-one to get a little tutoring since math is a huge struggle for him. 

I also let the school team know what I'm doing on my end to help Jonah. He sees his counselor every week. This week I met with the psychiatrist about meds and we decided to change Jonah's anti-anxiety med since it is obviously not being very effective. We're still in the process of the elimination diet, and we'll meet with the nutritionist tomorrow to see what the next step is- how to add foods back in to our diet. Long story short, we're doing everything we can to make sure Jonah has everything he needs to be healthy and as happy as possible. Everyone is on board and on the same page, at school, therapy, and home. 

Yesterday Jonah had quite a struggle when it came time to get his coat on and get out the door to the bus. First, he locked himself in the bathroom. When we got him to come out, I made the mistake of letting go of him to help the other boys with their coats. Jonah ran upstairs and got into his bed, saying he was just going to stay there all day. Alex tried his best to coax him out. Finally, as the bus was about to pull up, I ran upstairs and wrestled Jonah out of bed. I wrestled my 10-year-old downstairs. He ran to the couch to take refuge from the day. I wrestled him into his coat and out to the driveway. I stood there in my pj's and slippers, shivering, looking at my anxious, sad, depressed little boy and wondering what else in the world I can do to help him. Life shouldn't be this upsetting when you're 10. Jonah got on the bus and ended up toughing it through the day. When I asked him how he did it, he said he kept thinking about how I had said in the morning that he couldn't go to the nurse and call me because I had appointments all day and couldn't pick him up from school. I could have used a visit to the nurse's office myself yesterday, with all my worry every single minute about how Jonah was doing and how I can help him.

It just so happened that yesterday while Jonah was having a total freakout about going to school, Aidan decided he'd jump on that bandwagon as well. He had his own little fit about school. Two brothers freaking out about school made Ben feel overwhelmed with stress and noise, so he was a little out of synch and made everyone more agitated by lashing out verbally. Ella plugged her ears against the Brother Angst and kept asking loudly if I could snuggle with her. Sometimes I wish there were 6 of me. At chaotic times like these, I just make a decision about who needs my attention immediately and most desperately, and work my way through the needy kids one at a time until everyone is eventually taken care of. I take one breath at a time and do the best I can to stay calm and keep working through the knot of chaos.

Last night when I put Jonah to bed I told him about all the ways Dad and I are trying to help him feel better. I told him about the new medicine we'll try. About how his math teacher will help him one-on-one. We talked about it all. I said that he shouldn't worry, something will start to work and he'll start to feel better. He asked if I was sure. He said "What if nothing makes me feel better?" I told him that no matter what, we'll keep trying. We'll keep working to make life happier for him. He smiled sleepily and said he loves me. It was a nice way to end a hard day.

This morning Jonah crawled into our bed saying his tummy hurt. I said "Just stop thinking about it. We're going to have a good day." Then he asked if he could take a shower!! That's never happened before. So he headed out the door into the world today a little bit happier than yesterday.

I'm hoping that all this squeaking of the Jonah Wheel will get him what he needs to just be happy and calm. After I wait and watch and see how things will play out, there comes a point where I have to jump into action and rally the troops around whichever of my little Wheels is squeaking. I pull in our team of teachers, therapists, psychiatrists, social workers, and doctors. I do research and spend every free moment brainstorming about how to help my child. It's exhausting but when it starts to pay off it's rewarding. I always wonder why it is that Ben and Jonah take turns being the squeaky Wheel. Every time, throughout their 10 years of life, one boy becomes more stable medically or behaviorally, the other boy falls apart. Why can't we get a little break where all four kids are just ok at the same time? Do we HAVE to always have one kid in crisis, for crying out loud? And if the answer is yes, could they just write down on the calendar when they'll each be going bonkers so I can prepare?

I'm hopeful that Jonah will start to feel better soon. It's been a long decline over the past couple months and the kid deserves a break. I'm grateful for the team of support we have who always grease up our little Wheels when they get squeaky. I'd be lost without each of these special people who help me take care of our kids when they're in crisis.

Waiting Rooms

Here I sit, in my favorite waiting room, waiting for Ella to finish her therapies. Before this I was waiting in the dance studio waiting room. And tomorrow will be Gymnastics Waiting Room Day. I've realized that I probably spend as much of my life waiting in waiting rooms as I do sleeping. It's an interesting little ecosystem, a waiting room. There are moms and dads and grandparents from every walk of life. People who ordinarily would never spend time together somehow bond because they realize they do have things in common with the other families in the same waiting room. 

Because I go to the same places with the kids every week, I know the other families that are in the waiting rooms with me. You become a sort of family. You talk about how a friend's new haircut looks great on her. Or toss around ideas on how to get your toddler to sleep through the night. Or offer support when a new diagnosis enters your kid's life. Or joyfully waive to your children together as they pass the viewing window in gymnastics. Or pick a friend's brain about their gluten-free diet. 

Honestly, waiting rooms are where I find my support groups. These parents are my friends, my family, my peeps, who know what I'm going through because they're going through similar things. I know it's a little crazy, but on therapy days especially, I make sure I shower and put on decent clothes, and even makeup (!) because I know not only will I see our therapists and get insight into my kids but I will also see my friends. I look forward to our therapy days because it's a chance to connect with people who know what our family is going through. It's a chance to network and support each other, get ideas and give advice. It's a place where you know you're not alone.

We do most of our kids' therapies on Wednesdays. Ella and I go in the morning for two of her therapies, then we go home and bring all the boys back in the afternoon and they all four have multiple therapies. Ben gets an additional therapy on Tuesdays after school, and Aidan comes back Friday afternoons for one more therapy. 

Wednesday afternoons, The Therapy Tree is hopping. The waiting room is full of bustle, kids all waiting to see their therapists. Sometimes the cacophony of noise is overwhelming, especially for my boys. But they've learned to deal with it. They usually bring an electronic device and tune into a game in order to tune out the world. 

As the waiting room fills with families, we greet friends. Parents we see once a week. We catch up and hear about how   the kids have been doing the past week. I wait with anticipation to see these friends. Some weeks these other moms are my lifeline. Some weeks seeing these friends is what keeps me going when things look so bleak and I'm so tired of challenges. 

There's no way to tell these other parents, in all the waiting rooms that I sit in every week, how much they mean to me. But the little things they do- read a book to Ella, let the boys watch them play a game on their DS, share a coloring book or a snack, those little things mean the world to me. It means so much when these parents listen to me and I know they're not judging me. We have a secret understanding about life. We know that just in order to get to this waiting room, some days we have to move mountains. Some days our kids have meltdowns on the way here and you have to pull the car over 832 times. Sometimes one of the kids won't wear socks or shoes even though it's winter, and you have to figure out how to get the kids to the waiting room and still not freeze to death. Sometimes it's the hardest thing in the world to just get your kids into the car and deliver them to the waiting room. 

We also have an understanding about our kids' behavior in these waiting rooms. Especially at therapy, we know that when a kid is having a complete meltdown about getting his coat on, we've all been there. The child may have sensory issues that are ignited with the thought of a coat. They may have trouble with transitions. They may not want to feel the cold winter air on their bare cheeks. We all understand and send silent support the way of the parent. No one glares or snickers. We all get it.

The thing that binds us all together, all these waiting room parents, is the fact that we're all in these waiting rooms trying to do the best we can for our kids. Whether our kids are busy getting therapy, balancing on a beam in gymnastics,  learning the steps to a new ballet, we're all in the waiting rooms trying to give our kids the best possible life they can have. That, more than anything, is what unites us. The desire to give our kids the world.

Too Quiet!

A few weeks ago, as Ella's physical therapist and I were chatting at the end of her PT appointment, the therapist mentioned that Ella had sort of shut down at one point during their time together that day. Ella adores her therapists, all of them, and although she will frequently shut down because of issues with other children (they're too loud or close to her, for instance), she has never shut down because of something a therapist has done. It was weird. The therapist wasn't sure if Ella was getting sick or was tired, or if there was something that happened before our therapy that had made her upset. 

I sat and thought and thought. As I thought, I realized how big the PT gym is, and how quiet it is in there when Ella is the only one there with her therapist. I commented to Ella and our PT about how quiet it was in the gym that day. When Ella ran off to play with a new piece of equipment, I mentioned to the therapist that whenever it's quiet at home, Ella comments on it. When her brothers are at school, Ella will get still sometimes and worriedly say "It's quiet." She doesn't like quiet. It means things are different. Not normal. When our house isn't full of joyful chaos, Ella feels unsteady. 

Ella's therapist said "Oh my goodness! Today she commented  on how quiet it was in the gym! It was just before she shut down!" We realized that Ella just didn't like the quiet atmosphere of the PT gym, and that was what had made her upset. After understanding this, when it is too quiet for Ella, her therapist turns on music for her. That has solved the problem! 

It's so interesting to me how you just never know what is going on in your kids' minds. You never know if one kid will thrive on noise or if another kid is cringing with pain because of it. All in the same house! I love our therapists because they notice little changes in my kids during their short time with them every week, and can pick up on whether something is wrong. Then we work together to see if we can put the puzzle pieces into place to figure out what's going on. 

Who would have thought that a lack of noise could make Ella so uncomfortable that she wouldn't be able to function. Because of our PT's awesome communication, we were able to figure out that Ella needs some background noise in order to feel relaxed and stable. Every week I'm amazed by our therapists. And so very thankful for all of them.

FODMAPS

FODMAPS. Sounds like a texting abbreviation that all the cool kids would know. I personally had never heard of such a thing before two weeks ago. Jonah met with a nutritionist to figure out what else to do to help his ouchy tummy issues. She gave us a few options, including staying on the medicine he takes to reduce his stomach/intestinal spasms, and not doing any other interventions. I didn't think that sounded like it would fix the problem, so we moved on to another option. I decided to have Jonah do the FODMAPS diet, a restrictive elimination diet. Jonah will stay on his tummy med until we can try weaning him off of it once his diet is stable. The FODMAPS diet eliminates fermentable carbohydrates; basically, for a few weeks, you stop eating anything that could be difficult for your body to digest. Then you slowly add those foods back in and see what your body's reaction is. 

We have to take out pretty much all our normal foods from our daily diet for the next three weeks. When I told my sweet hubby that if Jonah was going to do this, we would all do this diet, he was not happy. Pissed off, is more like it. He's a man who loves his ketchup, and ketchup is definitely on the Do Not Eat list. But as I continued to research the diet and explain it to Alex, he got on board like he always does with all my crazy ideas. Then we had to break the news to the kids.

They were surprisingly supportive of the whole FODMAPS idea. I've explained to them before about how what we eat affects our moods and behavior, so we talked about that again. They all also felt that if one of us had to do this diet, we should do it together. Although in times of apple-juice-deprived-frustration, Ben has said "I don't even NEED to do this diet! Why do I have to do this diet??" My secret motive for this is that I'm sure all of us have food sensitivities that we need to take care of.

I cleaned out our pantry, fridge, and most of the freezer of any "unsafe" foods. Anything with lactose, fructose, gluten, beans, onion, garlic, tomato, corn, broccoli, yogurt, anything that ends in "-ol" (whatever those are), the list is a mile long. Then I went grocery shopping, which took about three times as long as it normally does. I had to read all the food labels on every single thing I put in the cart. It took forever. Luckily I didn't have any kids with me. Now the pantry and fridge have safe foods that we can eat without any tummy issues. 

The first morning, Ben was very upset because he couldn't have his gallon of ice-cold apple juice. Or as much cantaloup as he wanted. Other than that, we've been able to manage pretty well for the past three days. I have safe snacks the kids can munch on. Ella has actually eaten RAISINS four times!!! And carrot sticks are back on her radar! With a lot of "male." Ella has to put "male" on everything. I tell her it's pronounced "mayo," but she disagrees. "Male" is a safe food, luckily, so I load up her plate with it and she dips everything in it and is as happy as a clam with all her "male." Whatever works.

Alex really, really misses his ketchup. But he said yesterday that he can actually taste his food now, not just the ketchup covering it!

I'm determined we're going to do this right, this time. We've tried gluten-free diets in the past, and going dairy-free too. It's so difficult because on my own, I don't know if I'm doing it right. But Jonah's nutritionist gave me a menu and exact list of what we can and cannot eat, which is so helpful. We need to explore, once and for all, what is going on with our bodies and what we should all be eating. I'm anxious to see the effect this diet has on the kids' behavior.

I noticed an immediate difference in how I feel when we started this diet. I just don't feel like I have a giant clump of gushy playdoh in my belly all the time. I feel light inside, and like my body is working effectively. And, amazingly I've lost four pounds in the last 2 days. Crazy! Alex doesn't have heart burn and other tummy issues. Ben said this morning that he thinks this diet is making him feel happier. After talking with our counselor today, I realize that Jonah is going through some detox. His behavior has been pretty challenging. He is moody and irritable and depressed. Much more than usual. Our counselor said this could be due to his body just detoxing from all the harmful effects of the food he's been eating. Poor guy. 

So we'll see how the next couple of weeks go. It's crazy when you start to realize just what you put in your body every day, and your kids' bodies too. We can't eat any fast food, obviously. When the boys went out for an excursion with their grandparents today, I had to email a huge list of 'can and cannot have' foods to Grandma. We have to have our last grandparent Christmas party at our house instead of Grandma's house because of our diet. The boys will have to have lunches from home every day at school, something they're not used to. (And Mommy's not used to, either) Aidan will have to bring a snack from home for his therapy group. Food is something that is such an integral part of so many aspects of life. If you suffer from allergies or sensitivities, you're out of luck in many areas. 

The good news for our family is that because of the other experiences we've had on GFCF diets, I know some of the yummier products to give the kids that they'll actually eat. I found a safe cookie mix that even Alex likes. I found a bread that is really good. I even got a great pasta the kids will eat. So this time around we're having more success than before. Only a couple more weeks to go! Then we'll start adding foods back in and see what happens. 

Wouldn't Alex be crushed if he finds out he really shouldn't eat ketchup anymore, ever? I can only imagine the heart-wrenching "goodbye" time he'd have to have with the ketchup bottle that's stored in the basement for now.

Aidan's Birthday

Last week we celebrated Thanksgiving and Aidan's birthday a couple days later. I can't believe Aidan is seven years old now. In a way I feel like he should be much older, but then again it's hard to believe that seven years ago our little boy was born so helpless and fragile. He's come so far and filled our life with such immense joy and wonder.

I wasn't prepared for Aidan's birthday because we had just gotten back from a great Thanksgiving couple of days at Grandma's house a couple hours away. We had been spoiled, fed way too many delicious treats, and had a ton of fun. I was in the midst of piles of laundry when I realized I had better get my butt in gear for Aidan's big day. The morning of his birthday, I still had presents to wrap, streamers to hang, sloppy joes to get ready, donuts to pick up and deliver to Aidan's class, and a cake to bake. No problem. If you have 37 hours in a day and a babysitter for Ella.

I'm proud to say I did get it all done. And as I was running around like a maniac, the design for Aidan's cake came to me. Captain America's shield. Perfect. It's round, which the cake in the oven already was also, and I had all the colors of frosting I needed already in the pantry. 

It turned out so cute. The boys were totally thrilled at my rendition of the shield. I love how they are completely in awe of my attempts at things like birthday cakes, which never look like a store-bought masterpiece, but are fun anyway. In fact, before Jonah saw what the cake was decorated with, he informed me that the cake was a little lopsided. Yes. That's because it's made with a whole lot of love and the love was heavier on one side, I said. Then he saw the top of the cake with the shield on it and forgot about the heavier side of love.



Ella was in charge of streamers. We had to use pink that ones that were left over from Ella's birthday, because I didn't have time to buy red ones which is Aidan's favorite color. Ella hung them along the whole back of our bench that sits at the table, and all the chairs. Methodically and proudly, she taped each little piece beside the next until every surface of sitting area was covered. She couldn't wait to show Aidan. She kept saying to herself "Me think Aidan will REALLY love this!" And of course he did. She showed him her hard work when he came in from the bus and he gave many ooo's and ahhh's to all of Ella's hard work. He's a great big brother. 

We had sloppy joes in honor of Aidan for dinner- that's Aidan's favorite thing to eat, under cereal, ice cream, and pizza. Then we had to deal with a big brother who had a super long meltdown about homework, but finally we reconvened to light candles and sing "Happy Birthday" to our 7-year-old. The meltdown was forgotten for a few minutes, the tears were dried, and we shared some special time with Aidan as we ate our Captain America cake. I kept taking pictures of Aidan until he gave me a look and I asked him if he wanted me to stop. He was too tired to talk but just nodded his head with his Aidan Look on his face that says "Mom, really. Just knock it off. You're such a Mom."

Even if we have to deal with meltdowns and tears and plans going off-course, when it's one of our birthdays we all realize that is a special moment to love our Birthday Person. The kids all seem to feel a change in the very air of our house on a birthday. They are especially kind and loving to the Birthday Person, and everyone is excited about what the presents will be, what Mommy's lopsided cake will be decorated with, what color of streamers will be hung up. It's such an important moment to stop and give thanks that the Birthday Person was born. And in our case, the moment is filled with extra thanks for how far the Birthday Kid has come in his/her life since they all had such rough starts in the world. 

It's exciting to see your children unfold and blossom before your eyes. To see what they will become, what they will like, what will make them laugh, who they will choose as friends. I'm thankful for so many things, but most of all my kiddos. They have made me a different person, and although life is not easy most days, for that I am grateful. 

I am thankful for Aidan, with his spiky blond hair and soulful hazel eyes (That he used to wish were blue like Daddy, Ella, Jonah, and Ben's. Instead he got Mama's eyes. Which he is becoming more proud of now.). I am thankful for his spirit of sunshine and joy. For the way he can figure out any electronic device in four minutes or less. For the way he is becoming such an artist. For the way he still loves to bake with me. For the way he loves his brothers and sister. For his sleepy hugs as I carry him to bed. For his insight into spirituality. For his giggle. For so many things. 

TMI

I had to have my first baseline mammogram last week. Which totally freaked me out because:
1. I'm so old that I need a mammogram. 
2. If I have a mammogram they might find cancer. 
3. There is no way I can handle cancer on top of all my kids' issues right now.

I made the appointment at a time when Alex said he'd be able to get off of work and meet me, then take the kids so I didn't have to bring them with me to the appointment. We had it all worked out. So I picked the kids up from school and we zipped over to the appointment. On the way, one of the boys asked where we were going. I said I had a doctor's appointment. They asked what it was for. I decided to have a teachable moment with them and be honest. I explained that I had to have a mammogram, which meant that a doctor would look at my breasts and make sure they were healthy. I knew that by telling especially my 10-year-old trouble-makers this information that somehow it would come back to bite me in the tush. But this procedure is part of life, so I decided to give them information.

We got to the doctor's office and I texted Alex to see if he was going to be there soon to get the kids. He answered that yes, he was just about to leave work. So we went in to the office to get the preliminary doctor-y stuff done. The waiting room was small, and my rambunctious kids filled it with life and noise. The technician called my name just as I got a text from Alex saying he was stuck at work dealing with an emergency. Great. I gave the kids strict orders to stay exactly where they were and be as quiet as possible and not make trouble and not to fight. They agreed through their giggles. Trouble.

It was my first mammogram and I was nervous, so nervous, not about the procedure (after having 4 kids and 3 emergency C-sections nothing phases me) but about what the results might show. So the technician poked and prodded and rearranged, took her pictures, and chatted while I listened with dread to the growing volume of chatter and laughter in the waiting room.

The technician decided she had all the pictures she needed, and I was finally free to put on deodorant and leave. I got dressed and walked out to the waiting room where my three-year-old jumped up as she saw me and exclaimed exuberantly (and at the top of her voice) "Mama! Are your boobs ok??"

Picture me dying of embarrassment. In those moments all you can do is laugh and carry on. I assured my daughter that yes, my boobs are in fact fine, thank you very much. Then I turned my Mommy Glare at her big brothers, who I was certain had put her up to that. Big brothers. Trouble, I tell ya. The boys hooted and laughed hysterically until they were practically rolling on the floor. I'm glad they got such a kick out of mortifying their mother. I'm glad I can amuse them so. They knew I would think it was funny anyway. They know me so well, those crazy kids. Looking at my crazy, laughing kids after thinking about what my mammogram results might hold made me realize how lucky I am to have them, and how I hope I never take a moment with them for granted. Life is so fragile and short, you never know what might change or when. All you can do is try to cherish it all. And maybe rethink some of those teachable moments.

Weekly stats

In the past five days:

3- the number of days I have had a sick kid home from school

4- the number of doctor's appointments I've been to with kids

4- the number of nights I have slept on Ella's floor because there's no other way she will sleep right now. Not even in our bed.

12- therapies the kids have completed

16- the number of socks Benjamin wore to bed last night 

7 bazillion- the number of times I have heard one of my angels scream "MOMMY!!!" 

0- the number of minutes I have had to myself to do anything at all this week


All I have to say is I am so grateful to the individual who invented under-eye concealer.