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Thursday, January 31, 2013

Tale of 12 Teeth

Our poor 10-year-old boys. This week they each had to have six teeth pulled! Big ouch. Big ouch on the Tooth Fairy's pocket book, too! Four baby teeth and two permanent ones that were actually still in the gums. Blegh. The orthodontist says there's just not enough room in their mouths for all their teeth. I always dread this kind of thing, because not only is it a horrible experience for typically developing kids, when your kids have any type of special needs, these things can mean major trauma. And major drama. For a really long time.

Tooth stuff makes me want to throw up. You know, my dentist phobia and all that. So try staying strong for your kids when you yourself are fighting your phobia, trying not to grab your boys and run away with them into the sunset to lead a life free of dentists forever! (Nothing personal, dentists out there) 

The boys wanted me to go back into the anesthesia room with them at the oral surgeon's office. Daddy said apparently he's "just the chauffeur." Jonah went first so as to hopefully alleviate his panic. He did so well, I was amazed again at his courage. He got laughing gas, giggled the whole time, and was cool as a cucumber when he got his IV put in for the anesthesia. Then he was out. I was escorted back to the waiting room to wait for Ben's turn. 

Jonah's surgery went well, and Alex met him in the recovery room while I went with Ben to get started on his anesthesia. I thought he'd be a giddy, laughing, hoot on laughing gas, but apparently it brings out his serious side. He hardly uttered a guffaw. He actually wouldn't even make conversation with the doctor and nurses. I think he was just too scared and worked up, and then the tingles of the laughing gas took effect and he just didn't know how to process it all. He did fine, despite his anxiety, and was soon asleep too. 

I went to be with Jonah while they did Ben's surgery. Jonah was completely loopy, coming off the anesthesia. He had made some very interesting new friends while he was asleep- two unicorns named George and John. (Daddy's "Beatles" influence, perhaps?) Jonah had a hard time saying goodbye to these new friends, and insisted on petting them before he sent John to be with Ben in his surgery. Jonah also declared, loudly and frequently, with his mouth full of bloody gauze, how much he loved us. And the nurse who came into the room to check on him. And he also stated how pretty the nurse was. And how he wanted to see the doctor so he could say thank you and give him a hug. Jonah. Always sweet, even coming out of anesthesia. Loopy, but sweet.

Ben's surgery finished and we were all able to go be together in Ben's room. Jonah stood up for the first time, his blood pressure dropped, and he almost passed out. He felt really terrible for about an hour after that- much more pain in his mouth along with feeling nauseated. It was rough. Poor Jonah cried a lot. Ben was waking up, and although he was out of it, his main concern was consoling his brother. Ben shed tears because Jonah couldn't get off my lap to go get a hug from Ben so Ben could comfort him. Ben. Always compassionate, even coming out of anesthesia. Teary, but compassionate. 

Jonah's recovery that day was an hour ahead of Ben's. So about the same time Jonah started feeling a little more human, Ben's emotional and physical state declined. We got the boys milkshakes on the way home, but that didn't really take the edge off the pain they were in. By the time we got home, Ben was really ramped up with angst. He talked about how it hurt so bad he just wanted to take a knife and stab his head off. He got off the couch where he'd been sitting next to me several times to go wander around talking about killing himself and crying with pain. He was still out of it from the anesthesia. I would follow him and gently take him by the shoulders and lead him away from any sharp objects in the kitchen, back to the couch, where he'd collapse in tears on my lap. Bleeding all the time. Why does a mouth have to bleed so much? Blegh. 

I kept reassuring Ben that it would get better. I kept saying "Look at Jonah! He's feeling ok now, and remember how totally terrible he felt before? You'll be that way soon, because you're just a little behind Jonah, in the Feeling Better Department, because your surgery was after his. Hang in there. It's going to be ok." Ben finally said "Mom. You've been saying I'll feel better 'in a few minutes' for an hour! When is it going to really happen?!?" Sometimes all you can do as a parent is help your kid hang on. You know better times will come. You have to hold onto that single nugget of knowledge, and push your kid towards it, whether they want to come with you to those better times, or find a knife in the kitchen and stab out their eyeballs. I hope that sometimes the sound of my voice, telling them that everything will be ok, will just lull my kids into peaceful oblivion. Sometimes it works, sometimes not so much. 

It's a horrible feeling to not be able to just fix life for your kids. To have to just sit and watch them be in pain and not be able to do anything is just terrible. Alex and I did what we could, but we can't take away their pain. We have just been trying to be super supportive and caring, and have driven them to their favorite ice cream shop every day for a special treat. That's the one thing, this week, that brings out two of our favorite smiles in this family. Thank you Suzy's Swirl. You offered us a respite during this wearing week. Today the owner actually gave us some free ice cream AND the kids got to pick as many songs on the jukebox as they wanted- for free!! Made my kids beam. They loaded up the playlist with Beatles music and rocked out while they soothed their sore gums with ice cream. Love that place.

Last night it was literally like a three ring circus at our house. I went upstairs for bed after everyone else. I checked in on my little angels to make sure they were all safely slumbering. Which woke Aidan up, who then needed TWO cups of water. Which woke up Jonah, who needed his back rubbed because his teeth hurt. After the two of them were back to sleep, I sprayed my perfume under Ella's pillow (new sleeping technique I'm trying- hopefully the smell of Mama will keep her in dreamland longer. I'm desperate!). Got into bed and couldn't fall asleep because of the rat race in my head. And my dear husband snoring like a Pug with a sinus infection next to me. I finally dozed off. So naturally 27 minutes later a child had to wake me. 27 minutes is my cut-off for sleep, I guess. 

Ben didn't feel well. And had had a nightmare. So I got him more medicine for his poor, swollen mouth, rubbed his back, smoothed away the wrinkles of his nightmare, and got him back to sleep. I went and woke Jonah up enough to give him more meds too so that hopefully that would stop him from waking up later to wake me up to tell me he was hurting. Got back to bed. Finally fell back to sleep. 

About two hours after that, Ella came in for her nightly appointment with me. Yesterday after talking with my wise, amazing counselor, I decided to again try the "back to bed" technique with Ella now that she's older. So I didn't say anything to her except "Back to bed, Ella" and took her back to her room. I stayed with her while she fell asleep and then went back to bed. By this point, Aidan had snuck into our bed. I woke up Alex to move him because I didn't think I could carry him back to his room, being so worn out. Alex took Aidan back to bed. 

Jonah and Ben each woke up once more, hurting and with bad dreams. The night finally ended at about 5:15 this morning with Ella returning to our room to ask if she could watch Peppa Pig on our TV. She had done it though- she slept ALL NIGHT IN HER OWN BED!!! If you consider 5:15 a successful wake-up-time. Which in this case, I did. So Peppa Pig it was. 

I don't know why I'm exhausted all the time.

Ha Ha Ha.

When my kids are sick, hurt, or healing from surgery, I don't harp on them about being clean for a couple days. It drives me insane, but I let them just be. Sometimes you just need to lay around and be comfortable, wallowing in your own filth. I get that. And my kids definitely like their filth. But after a certain amount of time, say 44 1/2 hours, Mama can't take the stinky breath and greasy hair anymore, and I declare that it's Officially Bath Time! Whether you're healed and healthy or not. 


Tonight was Officially Bath Time. Into the tub went all dirty kids. Faces were scrubbed, blood wiped from lips, hair was restored to its soft shiny state. Teeth were very very carefully brushed with a baby tooth brush. Bloody blankies were all washed clean for bedtime. I always feel better after a good scrub, once I'm done wallowing in the filthy comfort of not feeling well. I think my kids feel the same way. I hope tonight's Official Bath Time symbolizes a new state of recovery for the boys. I hope they sleep well tonight and wake up past a little bit of the discomfort and pain.

Tomorrow will be another new day. I have many hopes for the night ahead. I hope Ella sleeps in her own bed. Actually, I hope all the kids sleep in their own beds. I hope nightmares are gone. I hope pain is lessened. I hope little bodies can rest and repair what is hurt. I hope tomorrow will be a little better for my boys. I hope that when my boys are all grown up, they have just a faint memory of this week, and are simply grateful for their beautiful smiles that make them feel confident and charming and adorable. 



Sunday, January 27, 2013

Silly Ideas

Silly, naive little me. I should know better than to think crazy thoughts like I did on Monday: "I wonder if our kids are soon going to be therapy-free. I wonder what it would be like if everyone was just even-keel, no major issues or challenges, just sort of typical. I wonder what I would do without these challenges that sort of define me. Am I a bad mom for thinking about what I would do without this stress in my life? What it would like if the kids were just typical? I'd probably be bored. Maybe that time is coming soon."

Ha. Big Fat Ha. The Universe or God or whoever is in charge is laughing his head off at me right now. Silly, naive little me. Apparently, The Universe or God was worried that I was becoming too comfortable for one single millisecond, so decided I needed MUCH more on my plate. Thanks so much. You know that saying that God doesn't give you more than you can handle? Really? Whoever decided that should be an official saying must have lived a life of relaxing luxury, with no stress at all, stuffing themselves with delicious baked goods at their leisure. Because many times I feel that I have much more on my plate than I can handle. I guess I do handle it all, somehow, but still, a little less would mean a lot more sometimes.

It was a week filled with things that scattered the matter of my brain. There were mixups with the kids. There were mixups with the school and meetings that I thought were scheduled one day, so I cancelled all of Ella's therapies that day. Then when we got to school, they said the meeting was actually the following day. Gr. Jonah came home on the bus the day he was supposed to stay after school for some help with math. Then the next day the math teacher emailed urgently in the early afternoon, asking if Jonah could stay after school that day instead, and could I pick him up. So I had to figure out a million logistical changes this week. That may sound like no big deal, but with four kids, logistics are always a big big deal. Then you add in all the little things we do all week: a zillion therapies, ballet, karate, gymnastics, etc, and it's a logistical nightmare to change even one little thing. But we made it work.

On Wednesday, Aidan is supposed to participate in a therapeutic group that works on social skills, speech, and OT skills, among other things. For reasons only known to Aidan, he dreads this group and has fought me every week about participating in it. He goes to a group on Fridays also that focuses more on handwriting and fine motor skills, and he looks forward to this group. I don't know what the difference really is, and Aidan can't seem to put words to it. But regardless of what Aidan's reasoning is behind not enjoying the Wednesday group, this Wednesday was no exception and Aidan dug in his heels and refused to go upstairs for the group. Usually I have a couple tricks that will work to get him to reluctantly go, but this week nothing was working at all. Aidan shut down and just got more and more cranky and loud in his refusal to participate. 

One of the therapists who helps to run the group came downstairs to see if he could help to figure out why Aidan didn't want to go to group. The poor therapist worked like crazy for an hour, following Aidan around the waiting room as Aidan tried to avoid the therapist, trying to get some insight into what Aidan was feeling or the reasoning behind his actions. Aidan just kept trying to avoid the situation by having a meltdown- he knows that if he is loud and crabby enough that usually he'll get the alone time that he desperately wants. But Aidan's therapist kept at it, kept trying, kept track of Aidan and wouldn't let him off the hook so easily. I felt bad for the couple other parents in the waiting room who had to deal with what ended up to be my kid's hour of private therapy, in public. But like I said in a previous post, what happens in waiting rooms stays in waiting rooms, and the other parents graciously pretended nothing unusual was happening. Bless their souls. 

I let the therapist work on Aidan without interfering too much. My techniques obviously don't work all the time for him, so I thought I'd give the therapist the opportunity to try and build trust with Aidan as well as try to be successful in his attempts to engage Aidan. Counseling has never worked with Aidan in the past because he just shuts down. Won't talk. Won't cooperate. Won't play. And usually cries about not wanting to go and not wanting to leave Mama. 

I think that counseling is a great gift for my kids. I want them to be able to have a safe place to go away from Daddy and I to talk about whatever they need to talk about. Of course Alex and I are open to anything they want to talk about too, but a counselor is neutral, has your best interests at heart, and isn't Mom and Dad. In our experience, counseling has been an amazing, strengthening opportunity for growth and understanding of ourselves. We have all learned coping skills, techniques to deal with our emotions, and ways to have more patience for our family members. I want Aidan to have the same opportunity that the rest of us have taken advantage of.

I was impressed with Aidan's therapist's tenacity. He wouldn't give up. I gave some input here and there when it was appropriate, but the therapist got to see some of what makes Aidan's behavior challenging. Finally at the end of the hour, the therapist, whether he knew it or not, was hugely successful in gaining some trust with Aidan, and cooperation. He asked Aidan a question and Aidan answered! With more than a screech of anger! He asked Aidan something like "See you at group on Friday? We can talk more then?" And Aidan looked at the therapist in the eyes and mumbled a soft "Yes." I don't know if the therapist realized it, but that meant he got to Aidan. He got Aidan to open up, he got him to cooperate with answering one question appropriately, he got him to connect with his eyes. 

It was a long hour.

We decided Aidan will take a break from the Wednesday group. It's not worth the stress and fight for me to get him there. He will also start seeing the therapist who helped him this week, one-on-one and hopefully not in the waiting room. I'm hoping that Aidan will be able to connect with him and just have someone to fall back on when he's struggling. When I know my kids are getting counseling, I feel like I have a safety net for them, to catch them in case I miss something or don't know how to deal with something, or in case they just need an outsider's point of view.

This week I had Aidan's 504 Plan meeting with the team at school. He's really struggling to focus, stay on track with what he needs to do to complete work, and he works very slowly. The poor kid. He has so much going on. And once you hit grade school, life speeds up and if you have anything slowing you down or complicating your life, it becomes magnified because you suddenly really aren't fitting into the "norm."

Yesterday, Jonah got into a fist fight with a neighbor boy. Actually, Jonah didn't use any fists, just words (that he knows he shouldn't be using anyway), but the other boy decided fists were appropriate to use on Jonah's face. Jonah came home with a bloody nose and lip, not too serious but very very upsetting. Alex dealt with the neighbors involved, and hopefully we will not have a repeat of this situation.

As I have been writing this, Jonah came in from snowboarding with ANOTHER bloody lip- this one pretty severe. His whole lower lip was sliced open a little bit, with one big blob of 'ouch' right in the middle. His loving twin brother had pushed him face-first down the hill into his snowboard and Jonah had banged his lip. I'm tellin' ya, this is not Jonah's week. 

Meanwhile, Little Miss Sunshine still refuses to sleep without being plastered right next to Mama. She goes to sleep fine, then in a few hours wakes every night to come in our bed. That would be fine, if she actually slept well. But she doesn't. She tosses and turns (I finally got smart and put a pillow between us so she can't kick me anymore. Ha! Take that, sleepy little legs!), and whenever she realizes that Mommy has actually dozed off for three minutes, she whispers me awake. "Mama. I need a drink. Mama. I'm cold. Mama. I can't find my cownow (the corner of her sleepy blankie that she rubs as she falls asleep). Mama. I love you. Mama. I love you SO much." Hmm, I'd love you even more if you told me this in 4 hours, sweet daughter!

I called the pediatrician again this week about the lack of sleep Ella and I have been getting for the past year. I said I wanted a referral to someone so I can get help. This is nuts. It's been TEN years of not sleeping and I think that's utterly ridiculous. So I got a referral to a pediatric sleep specialist that we'll see in a couple weeks. Enough. Mama wants sleep. It does make me wonder if I should take all the boys to the sleep doctor too, because none of them can sleep without medication. We'll see.

So for all these reasons, and more, my brain is totally fried this week. I feel like I need total cognitive and emotional rejuvenation, and I'm not sure how to get it. Alex said I should try the yoga class they offer at The Therapy Tree on Wednesday nights. Wednesday nights are our most stressful- after a full day of therapy, so I'm not sure that will happen, but it's a nice idea. 

Some times I wonder how much more my little old plate can handle. Enough already, I feel like yelling! I guess at times like these I go into autopilot mode- just rolling with the punches and trying to get through whatever craziness is coming next. I try not to think too much or feel too much, just do what needs to be done. I know things will even out and get better eventually. Maybe I should keep my thoughts from wondering into crazy territory...keep them in reality. It doesn't hurt to dream, but maybe I'll save my dreaming for a less stressful week.


Saturday, January 19, 2013

SPD Revisited

Today I was reminded of how far our family has come in our special needs journey. I host a monthly support group for parents whose kids have Sensory Processing Disorder, and although I am not as on top of it as I should be some months, I'm always fulfilled when we have a meeting.

Today was no exception. I wasn't going to have a meeting today because there is so much going on with our own family, I hadn't gotten my act together to organize a meeting for other families. But then I heard there was a mom in the area who was really looking for support. She has a child who was just diagnosed with SPD and is overwhelmed. I decided to throw out an invite to our group over Facebook and have an impromptu meeting so that this new mom could have a place to find support and hope.

The mom came with her husband and two children. They were the only ones at the meeting, which is understandable since I slacked off and didn't plan farther in advance to have the meeting in the first place. (Sorry, group!) The family was a little late for our meeting, so I had time to reflect on some things as I waited for them. 

There have been other times when a family has come to our meetings, just having had a child diagnosed, and they are looking for answers and hope. I have handled these situations in the past, trying my best to give the parents a little bit of direction and hope for their future, and their child's future. Today, I don't know why, but I was a little nervous about meeting this new family. Since I've met newly diagnosed families before, I couldn't understand what the deal was. I sat there and tried to figure it out.

I finally realized that it was because it was just me at this meeting. And the new family. The family was coming to me for help today. For answers. I haven't been a practicing social worker for 10 years. I don't know all the new things that current social work professionals are up to speed on. I don't have any new-fangled research to back up my opinions or parenting techniques. All I do have is practice. Times four. I was nervous today because I was this new family's link to hope, one of their first experiences in this new SPD World that they have found themselves thrown into. What if I didn't have answers? What if I didn't know how to help them? I was a little worried. I decided all I could do was be honest with them.

The family came, and they were beautiful. We have not ever had a father come to one of our meetings. Grandmothers, aunts, moms, sisters, all sorts of female types come to our meetings, but dads are missing. I keep telling Alex he needs to invite all the papas over to chat about the Dad Experience of raising kids with special needs, because it is a uniquely different experience. 

Anyway, today a Daddy was there. The parents were wonderful, warm, supportive, caring, overwhelmed, scared, and worried. They had never heard of "SPD" before a few weeks ago. They thought they were bad parents because they couldn't discipline their child in a way that seemed effective to the outside world. They feel judged and alone. They are worried about their child's future. They're worried about their child being teased. They don't yet know how to navigate the educational system. They are intimidated by the books their doctor said they should read. They're trying to find an Occupational Therapist who takes their insurance. All the things that we all go through as we raise our special needs kids. 

I knew exactly what they were experiencing. I threw my heart around this family as they sat there, pouring out their worries to me- a stranger. They were so brave. They're so good. They're a team who support each other and love their children more than anything. I was reminded of how long it's been since I sat in my first SPD support meeting, bawling my eyes out because I was so overwhelmed and frazzled. We've come such a long long way since then. 

I guess I know more than I think I do, because I had an answer or suggestion for all of the family's questions. I was worried they would ask things I didn't have experience with, but I guess because I have four kids who all have different sensory issues, I could identify with all the questions this new family has. I was so relieved that they said it was helpful to talk with me. I was overwhelmed with gratitude that I could play a part of this family's journey into acceptance of their daughter's world.

Most of all, we parents just want hope. Hope that our kids will be ok and have a happy, healthy life. The father I met today asked about how SPD progresses as a child grows up, how it manifests itself in grownups. I explained that based on what I've read, things are a little easier as turn into adults. As adults, you can make choices about things you don't have control over as a child. As a grownup you can pick what career you want to work in. If you don't like noise, don't be a construction worker. As a grownup, you can choose to wear socks or not wear them. You can decide what flavor of toothpaste you like the best, and what kind of toothbrush you want to use. You can live in the kind of house you want to live in. You can have carpet in your home so you feel softness on your feet, or you can have hard wood floors so you can hear the 'click' your shoes make when you walk. You can choose when to go grocery shopping if you want to avoid crowds. There are just so many things that as adults you can make choices about so you can live the kind of life that makes you happy. 

I told this new family that their daughter has the best possible thing- a family that loves and supports her. Everything else will fall into place. They should have hope! When they start working with an OT, they will learn even more about their child, and how to help her navigate through things that stress her out. Things will get easier in some ways. Yes, you have to change your expectations because now you know your child has something to deal with that will make life different for her than you thought it would be. But it's just 'different'. Not worse or scary or hopeless. Just different. She can still be and do anything she wants, with her family's support. I told the parents that the road to accomplishing her goals may be different than they had thought it would be, but she can still accomplish anything she wants. SPD does not limit you. It just means you may take a different path to get to your destination.

Talking with this amazing family today made me just stop and think about my journey. I never thought I'd be able to talk about my kids' special needs without sobbing. I never thought I would know enough to be able to help other parents. I don't know everything, by any means, but I hope I can at least give other families hope. The dad I met today said that hope is the most important thing to him. Amen.

Friday, January 18, 2013

Penguin Stress

This week we had a consult with the oral surgeon who will remove 6 of Ben's teeth and 6 of Jonah's. Apparently there is nothing more the orthodontist can do to create more space in their mouths, so this is our last resort. The surgeon seemed great and I'm confident the boys are in good hands. 

Jonah, however, is understandably terrified. As I was checking out today at the surgeon's office, and making the appointment for the surgery, Jonah completely fell apart. I expected it to happen, just not until we got to the car. He just couldn't hold it in any longer. He turned white, started crying, panicking and hyperventilating. True panic attack stuff. Poor guy. I tried to calm him down as best I could while finishing the business part of checking out as fast as I could. 

We managed to get to the car and on the ride home I tried to calm Jonah's nerves. Didn't really succeed, but I tried. We're having the surgery on January 29th, and Jonah will be first in order to get it over with. The surgeon can do both boys' surgeries on the same day, so that is extremely helpful for our family logistics. One of Ben's teeth that will be pulled is actually wiggly right now, so on the way home I told him to try and get it out! Because if Ben pulls it, it's a free tooth removal. If the surgeon pulls it, we have to pay an arm and a leg for it. The surgeon told the boys that with all the teeth they'll lose that one day, they might be able to buy a new car! Ha. Maybe a Matchbox car.

Even though I know Jonah is feeling extremely anxious about many things in his life right now, and wonders if he will ever feel better or "ok," this is how I know he will actually be fine.

Alex brought home a bunch of funny-shaped stress balls for the kids. Jonah got his favorite- a penguin. He has a whole collection of Everything Penguin. He took the stress ball to school the other day. 

When he came home from school, Jonah told me about a friend in his class who had been very upset about taking a test that day. The friend had been crying and just really freaking out. Jonah thought to himself that he knew how his friend felt, and offered his friend his brand new penguin stress ball as a gesture of compassion.

I couldn't believe my son's empathy and concern for his friend, even in the midst of so many challenges of his own. Jonah showed me that even though he is struggling on many fronts, he has some incredible, important Secrets that are hidden under all the challenges he faces each day. Secret compassion for his friends who struggle. Secret love for his siblings. Secret courage to leave our home every morning and head off into the World of Anxiety. Secret willingness to help others in need. These secrets come to the surface whenever Jonah is able to shake off his struggles and remember who he really is. Jonah will always be who he has always been: a sweet, sweet, sensitive soul. 

Jonah's sensitivity is his greatest strength and the area that causes him the most pain. He feels things deeply and the world can get under his skin and suck out his Joy. But I know he will be ok. We're working to give him every tool possible to build his Invisible Armor Against Anxiety, so he can hold on to the joy that lives at the core of his spirit. 


I was so proud of Jonah for feeling sympathetic and compassionate for a fellow anxiety-sufferer, and for offering his friend a very special token of understanding. Even in the middle of his own pain, he recognizes others' needs and acts to change their pain. That's how I know my sweet boy will be ok.

Cooking Experiments

The elimination diet we've been on for three weeks (FODMAPS) has been quite an adventure. I've had to make school lunches every day- something I used to think would be the thing to break the camel's back- which has turned out to be something I can actually handle. Although yesterday my boys were very disappointed with their lunches. I just hadn't had time to go buy or make more gluten/dairy/bean flour- free bread, so I tried to sell the boys the amazing idea of bread-less sandwiches! Doesn't that sound fun and different? 

Yeah, not so much. The boys were less than thrilled. 

I've had to keep ahead of the day and have the ingredients to prepare breakfasts, lunches, and dinners from scratch. It's been fun to experiment with new recipes and bake things I've never tried before. Some recipes have been surprisingly tasty and other I've had to just toss because they were so terrible and my kids were about to go on strike rather than eat the stuff Mama was serving.

When Ella and I grocery shop, she'll ask if she can have the things we used to eat- donuts as a special treat, Fruit Loops, cookies...I'll say no, we can't get those things today. Then Ella will say "Oh, they're not on our DIET." She never knew that word until three weeks ago. Then she'll ask what a DIET is. I'll explain that it's the food you eat. She has been known to try to convince me during the past three weeks that McDonald's food is in fact on our diet. Hm, nice try, Little Turkey. Mama's not falling for that one.

Earlier this week, I was trying a new recipe for breaded chicken strips. The picture looked really tasty, the ingredients were all "safe" for our family, and I thought the kids would get a kick out of having chicken nuggets again. 

The recipe sucked. Totally and completely. It ended up to be this disgusting glob of blegh that I was trying to "dredge" chicken strips through. Whatever. I don't know who came up with this recipe or where they got the picture of their chicken, but mine turned out nothing like that. So I've got all this glop all over my hands, nothing about the recipe was working. 

Meanwhile...

Aidan decided to run around the house singing at the top of his lungs to annoy his brothers. Jonah was trying to do his homework and was having a meltdown about the noise level in the house and the fact that he couldn't remember how to do his math problems. And Ben was arguing with me loud enough for the neighbors to hear because I wouldn't take him to the store to buy his latest obsession- a plastic container to hold his favorite marble. Ella decided to draw with pen all over my favorite crochet pattern book. 

I tried very hard to remember that I love this "joyful chaos". 

Hm. Not all the time.

All I kept saying was "Guys! I need literally FIVE minutes to figure out what to do with this glop of gooey gunk that I'm supposed to make dinner with!! Five minutes!!" But no one else cared. That's the hardest part of this lifestyle, finding time to actually make everything from scratch while still being available for all the kids who need attention. "Wait five minutes" is not a direction that any of my kids have ever understood or been happy about. Waiting is more difficult for them than other typically-developing kids.

Needless to say, the chicken was a flop and I threw out the recipe. I knew I'd laugh with the memory of the Crazy Chicken Night, but getting through it was not so funny. Some nights when I'm exhausted and the kids still have homework and showers to get done, I just want to pop in a microwavable dinner or run through the McDonald's drive thru on our way home from an afternoon of therapies. 

But I know this diet is making a difference in how most of us feel, so we'll keep trying to stick with it. We're going to start "food challenges" over the next month to see how we respond to the foods that we've eliminated with this diet. So I'll keep trying new recipes. Some may work, some may not, but I'll keep experimenting. Hopefully the house won't be so chaotic during the rest of my cooking experiments!


Wednesday, January 16, 2013

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.

Thursday, January 3, 2013

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.

Wednesday, January 2, 2013

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.