Follow by Email

Wednesday, July 25, 2012

Mama Bear & the Dentist Chair

Today all four kids had to make the pilgrimage to see their pediatric dentist. Our dentist is absolutely wonderful. She has a team who dress in bright, fun scrubs. The kids get loads of stickers, new tooth brushes and toothpaste, little dentist mirrors in fun colors, and toys from the treasure chest. Our dentist makes the visit as reassuring and fun as possible. 


Having said that, visits to the dentist cause a lot of anxiety in our kids, and therefore a lot of symptoms of their diagnoses rear their heads. This has forced me to be a strong advocate for the kids and their special needs. 


During one visit a couple years ago, Jonah was having a lot of vocal tics. He was in the dentist's chair, and a hygienist was cleaning his teeth. Jonah was ticking a lot, and it was worse because he was nervous. He made grunting or growling sounds as the hygienist worked on his mouth. To my horror, the hygienist started teasing Jonah about his noises, and not in a fond, fun sort of way. I sat across the room from Jonah's chair, stunned into shock. It was one of the first times I had to figure out how to deal with the outside world in relation to my child's disability. I knew I had to make a decision- whether or not to intervene. In the midst of my shock, I decided that it would cause Jonah more stress and embarrassment if I boldly, publicly, told the hygienist about Jonah's Tourette Syndrome, than if I just carefully watched to make sure Jonah was ok and let the conversation blow over. As I assessed the situation as only a Mama Bear can, with every fiber of my being ready to pounce if I saw my little boy become upset, I could tell Jonah was not too bothered by the hygienist's comments. Still, I sat at alert, guarding my boy as he got his teeth cleaned. 


The next time the kids had a checkup, I went into proactive mode. I called the dentist prior to the appointment. I told them what had happened the last time, how the hygienist had been teasing Jonah about his vocal tics in a way that made me uncomfortable. I explained each of my children's special needs. I requested that the staff be told about my kids' needs, and I was assured that my kids would be handled with care and sensitivity. Since that uncomfortable visit years ago, I remind the dentist's office before each visit of my kids' special needs, and we have not had any problems since. Even though I was about to go off the deep end when I heard the comments that were made to Jonah years ago, I realized that Mama Bear sometimes needs to reel in the stunned anger and deal with problems in a more appropriate, professional way. I knew if I handled it that way, I would be heard and understood.


Although our dentist visits are much smoother these days, there are still things that drive me crazy. My older two boys have severe sensory issues regarding their mouths, and they have since they were born. Brushing teeth for them has always been pure torture. We do our best, me pushing them to brush as often as I can, them resisting with ferocious anger and fear. We've worked on toothbrushing in OT for years. We've tried everything we can think of to make this skill easier for Ben and Jonah. But it hasn't gotten better at all. 


Now the boys have braces on their top teeth, which makes matters worse. So every single time they're seen by their orthodontist or dentist, we ALL get the lecture about better oral hygiene. And every visit, I explain AGAIN about the boys' SPD, and how we're doing the absolute best that we can. I have always felt like such a failure because my boys won't brush their teeth! I know it's nuts, but it just makes me feel like the worst mom on Earth. For years, I thought that it must somehow be my fault that my boys fought tooth (no pun intended) and nail about brushing their teeth. Until I had my last two babies. Aidan and Ella have no problem whatsoever with toothbrushing. They got glowing reports today at the dentist about their oral hygiene after our lecture on Ben and Jonah's infected gums. So, ha! It can't be totally my fault that my older boys loathe toothbrushing, because my younger two are fine with it! I love when that happens- when some of my kids prove to me that I'm not the problem and I am in fact doing an ok job of being Mom. 


The other issue today was that Aidan, although he is 6 1/2, insisted on sitting on my lap for his dental exam. This was fine with the staff, but many comments were made about Aidan being a big boy- big enough to sit on his own in the dentist chair. And how next time he comes, surely he'll be able to sit by himself! I'm sure the dentist's team were trying to encourage Aidan and give him confidence, but it gets irritating. The kid has a host of issues: SPD, anxiety, tics, to name a few. If he needs to sit on Mommy's lap at the dentist, I'm ok with that. I felt like saying "I'm sure Aidan won't be sitting on my lap here when he's 23, so how about if we just let it go??" Give the kid a break. If we make through the dentist checkup, I'm happy, no matter how we make it through. If Aidan needs to sit on my lap and if Ella needs to cry the whole time, fine. We still made it through.


So many times I'm surprised at the places or situations that I have to advocate for my children. When I had babies, I never thought about how I'd have to explain their special needs to a dentist someday. Or to the lady who cuts their hair. Or to their Sunday School teacher. It's interesting to realize how much we do advocate for our kids across every area of their lives. We make sure their world is as safe and comfortable for them as possible, which means spreading education about their special needs to all the pieces of the world that our kids touch. The only way to gain understanding and acceptance for our kids, in my humble opinion, is through education. 


When we return to the dentist for our next checkup, I can guarantee you nothing will be different than it was today. We will still get the oral hygiene lecture. Aidan will probably still insist on sitting on my lap. And Ella will no doubt cry the whole time, and then obsess the rest of the afternoon about how she "did NOT like that dentist." But no matter how we make it through the appointment, as long as we make it through, Mama Bear will be happy.



Tuesday, July 24, 2012

Expectations

Before I was a parent, I had expectations of how our life would be when we finally had a little baby in our arms. Then we found out we were having twins. Then we found out I had to go on bed rest. Then we found out the boys would be born 11 weeks early. Then we found out they would need multiple weekly therapies for years and years in order to function at age-level and have the best possible life. Then we discovered there were names to go along with the difficult behaviors the boys were experiencing: SPD, Tourette Syndrome, ADHD, Bipolar Disorder...


My expectations of parenthood have, on many occasions, had to change.


That has been one of the hardest things I've had to learn as a parent- that I can't control many things that happen in our family, and so many times I have to change my expectations. Sometimes I get blindsided by what my expectations are versus what my kids need.  


If you've been in the special needs community for a while, you're probably familiar with the essay written by Emily Perl Kingsley called "Welcome to Holland." The story is about how you are on an airplane and expect it to take you to Italy for a fabulous, exotic, beautiful experience. Instead, when the plane lands, you realize you are in Holland. Everything you anticipated about your fabulous vacation has been drastically changed. Eventually you learn to understand and love Holland, but it will never be what your friends from Italy experience on a daily basis, and it will never be what you thought you were headed for on that airplane. This is how it feels to parent a special needs child. Or four. 


Yesterday my sweet baby turned three years old. I can't believe three years have passed since that scary and joyful day she was born. We had a great Birthday morning. Our perfect breakfast included, what else, pink pancakes and pink streamers.
Later we told Ella that she could pick what we ate for lunch. She wanted bagels. So we piled into the car and went to Einstein Bagels for lunch with the Birthday Girl. Ella and I looked smashing. We had our hair done all pretty, we had dresses and lip gloss on, and we were girly girls and lovin' it. We were ready to celebrate life and family and birthdays with a bagel lunch.


We got to the bagel store, and Aidan started going nuts. Running around yelling, flapping like a bird, trying to jump and hang on the counters. No matter what we did, Aidan would not calm down. 


Finally I gave up my dream of my bagel birthday lunch. I loaded up my bagel and Aidan's bagel, and dragged him, yelling and flapping, to the car. We proceeded to eat our lunch alone in the car while the birthday festivities continued without us in the bagel store. I was angry and disappointed. I had expected to celebrate a lovely birthday lunch with my sweet girl and the rest of our family. Instead I was sitting in the hot, stale car, eating my bagel in silence with a crabby boy who wasn't able to handle being in public. Sometimes the fact that I have to change my expectations hits me head on, and it really stinks. 


As usual when my expectations disintegrate, I allowed myself to feel the feelings of disappointment and irritation, and then tried to accept that I couldn't do much to change the situation. And, that what I am doing is the best thing for my child. It's hard at times to realize it's not all about me. My four little people have unique needs and often my wants come dead last. 


When I have expectations of something being insignificant and simple, like running to the grocery store for a couple dinner items with all the kids, it turns into Chaos with a capital 'C'. This is why I try to plan for all unexpected variables. Lost tooth? I have a baggie for that. Skinned knee? Got a bandaid. Peanut allergy? Epi Pen is always on hand. Running late because a boy had to go potty for 45 minutes? I always get started early, so we have extra time for potty issues. Kids getting squirrely? Push the cart (heavy work for Sensory Issues), or look at the book I always have in my purse, or use the fidget we always carry. People tease me because of my over- planning, but if you plan for Crazy, when Crazy happens then you're not quite as overwhelmed and angry. 


I often have to grit my teeth and change my expectations to meet my children's needs. And although we're definitely not in balmy, perfect, exotic Italy, I have come to appreciate and cherish each moment in Holland. I wouldn't leave this place, or this family, for anything. I just keep trying to work every day on being ok with having to change my expectations. I'm amazed daily at how much these four little people have challenged me to grow. I guess I'm a work in progress. And despite not having a bagel lunch with my Birthday Girl, we all shared a fabulous day with our little diva. 

Saturday, July 14, 2012

The Hamster Debacle

I have had a bad week. It's one of those weeks that just gets you down, in a rut, and I can't shake it off like I normally can. The kids have been super special-needy this week. Intense, loud, chaotic, having trouble regulating themselves, having trouble doing anything independently, having trouble concentrating long enough to complete any self-care tasks or chores, meltdowns, blowups, crying jags, sibling fights...you name it, we've struggled with it this week. Plus Daddy has had to work 6 days in a row, 12-14 hours a day. So I'm home alone with all my munchkins, day in, day out. Trying to stay calm, supportive, nurturing, and not crabby and short-tempered. I don't think I'm doing that great of a job this week, I have to say.


Speaking of which, I just got interrupted by Jonah who had a mouth full of blood from playing "Super Heroes" with his brothers. And Ella is screaming her head off in the basement because all her brothers decided they're done playing down there. Ahh. Gotta love this week. When is bedtime???
*                        *                       *                         *                        *                       *                      *
Crises have all been solved. Mommy to the rescue. Jonah lost his tooth at dinner tonight, and took the opportunity to carefully explain the role of the Tooth Fairy to his little sister. We take our fairies very seriously in this family. Maybe the Super Hero bonk to the mouth hastened the loose tooth process, I'm not sure. What a day.


Back to my bad week. Every day, the kids struggled this week. More than usual, it seemed. Our OT recommended trying two therapeutic techniques at home, for all four kids: brushing and therapeutic listening. Brushing involves a plastic brush that you rub a certain way a certain number of times on certain limbs. Basically, it helps open up the nervous system to input, then reorganizes the sensory system, and then you do joint compressions to close the door on the nervous system. We are supposed to do this whole process three times a day for each child. 
For therapeutic listening, the child uses special headphones and a special CD. The child has to listen to the music for 20 minutes twice a day. (Remember we have FOUR kids, so this is quite an undertaking to accomplish during our already-busy days) The program is supposed to connect the two sides of the brain so that they can communicate better, and then the hope is the child will become more regulated and efficient. We've got a pretty good handle on getting the listening program done twice a day for everyone, but I keep forgetting to do the brushing. Aidan was so upset with both of these techniques that I had to hold him tightly the first day and do the brushing, then the headphones. I always wish I had at least 3 more arms. It's hard to hold a squirming, screaming 6 year old and at the same time hold huge headphones onto his ears for 20 minutes. That was a workout. But after that first day he's much more willing to participate in the programs, especially since we have a Chart now, of course. Charts fill our kitchen. We have a Chart for everything. So there is a great reward at the completion of the OT Charts. Aidan is big on rewards, so I know this will work with him. All the kids have tried both of these OT programs before during various times of their treatment. Most of the time the techniques really help calm the kids down, focus their energy, and just work better as a kid. We stop the techniques when the kids' bodies tell us to. It's all sort of invisible, touchy feely stuff, but if you're in tune with your kids, it really works. So fingers are crossed that the brushing and listening programs can give us some relief soon from irritability, mood swings, inability to handle sensory input, etc.


On top of everything else this week, we have three hamsters living at our house again. Long story short, a couple months ago we bought a boy hamster. Three days later "he" had five babies. "Sammy" was apparently "Samantha." As my friends so hilariously pointed out, this would only happen at our house. So we suddenly had SIX hamsters, when I had signed up for ONE. Little did I know that Mommy hamsters will eat their babies if the babies are not thriving (EW), so we ended up with two babies when all was said and done. I found a good home for one of the hamsters and the kids convinced me to keep the other baby and Sammy. It has ended up that Mommy gets to do all the hamster work, of course. Cleaning the cages, filling the water tanks and food bowls, etc. 


Yesterday, the baby hamster we gave away was returned to us because apparently it's not getting tame and friendly quickly enough. So we now have three hamsters in three cages in our front room. Smelling up the whole house and making my allergies go bonkers. This was the straw that broke the poor sleep-deprived, overwhelmed, grumpy camel's back. I joked that we'll just add a couple llamas and a few chickens to complete our Crazy, and we'll be all set. 


This week I taught the boys to make good ol' fashioned friendship bracelets out of thread and knots. When I say I "taught" them, I mean I showed them how to do it, they thought it was really cool, and then they made me make them all bracelets. Hm. Not how I had intended that project to go. So I was sitting at the table making knots in Jonah's bracelet tonight, reviewing my week. Sometimes I just can't understand why life has to be so difficult. I have been wondering why I am always given more than I feel I can handle. Why do all four of our kids have special needs? Why, when all I want to do is buy a teeny cute little hamster, does the whole thing have to turn into such an unending pain in my tush? Why can't things ever be simple? Why can't we just buy one hamster, who stays a boy, and enjoy the simplicity of that one pet? Why can't my children put anything away, ever, so we don't spend an eternity every day looking for the lost shoe, the misplaced toy, the missing blankie? I know I'm whining, but sometimes I allow myself to wallow in my own self pity. Then I pick myself up and move on. But for a brief, depressing time, I claim my angst and wallow. Most of the time I just put one foot in front of the other and move through the tough minutes and days, trying to find glimmers of hope and light as I go. Glimpses of progress in the kids, tiny moments that make my heart swell and make it all worth it. But there are times when life just stinks. It's hard, it's monotonous (if I have to unload the dishwasher that is filled with 302 little person cups one more time today, I'm just going to lose all my marbles), it's boring, nothing seems to get better sometimes. I'm tired of having to fight with the kids about every little thing we have to do every day, all day long. Everything from brushing teeth to washing hands to getting dressed to eating dinner to practicing their instrument to the fact that most of them should be able to wipe their own tushies after they go to the bathroom. I have found that if I give myself time to wallow, it makes it easier to pick myself up and get enthused with my life again once my self pity time is over. So I admit, I am sadly wallowing this week. 


Then, as I tied yet another knot in Jonah's bracelet that never seems to end, I realized something. I realized that so often I am faced with challenges that make me stretch myself. The challenges offer me two choices: the chance to grow and become a better person by practicing something I'm not great at, or just revert to what I've always done, which is comfortable but doesn't bring any change. Then it struck me- the Hamster Debacle has given me an opportunity to practice something I'm not great at- setting limits. This is an opportunity for me to say "No." "Enough." "I can't handle anymore, so stop giving me more." "I won't do it." I tend to take on anything anyone asks of me and, like so many moms, I never say no.  So now I can choose to grumble every single time I enter the front room where all those cages are lined up, stinking up my house, or I can have a powwow with my kids, explain that even Mommy has limitations, and take two hamsters back to the pet store, therefore returning a small piece of my sanity.


With this in mind, I had a serious talk with the big boys about what we (meaning Mommy) can realistically handle, and how we may need to return two hamsters to the pet store. The boys were understanding and receptive to this idea, however, World War III has begun over which hamster we should keep. The pet store has been made aware that it will have two hamsters joining its flocks of pets waiting for homes. Operation Return Mommy's Sanity is underway. I need to say "No, I can't handle cleaning three hamster cages every week on top of all the other chaos I have to manage." And I'm trying to learn that saying no doesn't make me a bad person, or a weaker person, or a meaner person. In the past I always felt I should be able to handle everything, and if I couldn't it meant I'm just weak and pathetic. But there are times when I stop and look at all that I do handle, and let myself be amazed by my total awesomeness. (I've perfected the self-high-five.) It's hard to see the good that I do, and it's hard for me to accept compliments or think that I am enough. Enough of a mom, a wife, a friend, a good person. But today I chose to silently cheer myself for my small accomplishments. They are small accomplishments to many people, I'm sure, but to me they're actually monumental. I got the kitchen counter cleaned. I got laundry put away. I emptied the dishwasher what must have been at least 87 times. We had an impromptu playdate with four friends in our basement. I got three out of four kids clean tonight in showers/baths. Plus all the other things I do every day to just make the day run. I'm hoping that by looking for glimmers of sunshine in the small successes of my days, I can get out of my self pity rut. I'm proud of myself for making the decision that it's ok to say no, and recognize that I can't, and don't want to, handle absolutely everything that everyone in my life throws on my plate. So there. 


I have to go remind the Tooth Fairy not to neglect her newest Toothless Wonder Boy. Here's to all our small successes, and to setting limits so our lives are just a little bit more manageable.

Saturday, July 7, 2012

4th of July

Our 4th of July was pretty typical for our family. We spent time together, we made what we've always called "Sparkler Crackers", and we did fireworks, which made some of us nervous because of the noise, smell, and smoke. The 4th of July is not a favorite holiday for people who struggle with Sensory Processing Disorder. Parades are too loud, fireworks are too loud, smoke is too smelly, crowds are too full of people. It's a tough day to participate in! So we do our own thing and celebrate our freedom in our own way. Which includes eating a lot of Sparkler Crackers.




This holiday made me think about the freedom that I am so grateful for. Having grown up in a third-world country, I know how blessed I am to live where I do. I have the freedom to drive a few minutes, not to a neighboring country, to a hospital if my children need medical care. My kids are able to have the therapies and interventions that they need in order to become the healthiest people they can be. They are able to go to a school that is safe, clean, and gives them a great education no matter what their special needs are. My family has enough food to eat every day, a safe place to sleep every night. We have clothes to keep us warm. We have books to read. We have electricity all day long! We have air conditioning on these hot hot summer days. We have so many freedoms that I take for granted too often. But I am grateful for all the things that make our life so comfortable. Most of all, I am grateful that my children live in this country where they can get the help they need to make their lives better. 





















It was a good day. A day to remember what great freedom we have because of where we live. A day to celebrate with sparklers, crackers, and family.

Friday, July 6, 2012

Brothers & Sisters

Here's what it means to have brothers and sisters. When you don't have the courage to ride a bike a size bigger than your old one, your two big brothers cover you from head to toe in protective gear (some from when Daddy was doing karate- but it doesn't matter that it's way too big). Knee pads, elbow pads, helmet, shin guards...then they each take a side of your new bike and walk with you while you get comfortable on it. Back and forth, up and down the sidewalk, as many times as it takes. Then your brothers call Mom, and she comes out to cheer in surprise as you zip around on the big bike that she's been trying to get you to ride for months!


Having big brothers means that when you're having a really rotten day, they make "all you can eat cereal buffet" for you because they know cereal is your favorite thing to eat in the whole world. They combine five different types of cereal in a big basket, and sneak down to the basement to find "something." When they come up, your brothers present you with your huge cereal basket, complete with a toy hiding in the cereal that you have been begging your brother to share with you. Just like the prize in a real cereal box. All this because your brothers see you're having a tough day.


Having brothers and sisters means you all hide out in your sister's room, putting on special clothes. You help your little sister get into her favorite sparkly tutu. You choose a special piece of music. You fight about who is dancing with whom. Then you call Mom upstairs and have her sit in her room on the floor. You present the "Very Special Ballet." You all dance a beautiful ballet, choreographed by everyone together, led by your little sister in her sparkly tutu.


Having a little sister means you cry when she gets hurt, even if it was an accident and you didn't mean to hurt her.


Having a brother means you give him the last cheese stick because you took two and he really wanted one.


Having brothers and sisters means you worry about them when you know they are upset. 


Having a sister means you color pictures of Ariel with her to make her happy. And you play dolls with her when you'd rather play Wii.


Having big brothers means you hug them sweetly when they're upset, pat their heads, and comment on how "gwumpy" they are. And how you "luf" them. 


Having brothers means you lay on the floor beside them when they feel sad, just to let them know that someone is there for them and loves them.


Having brothers and sisters means that even though you drive each other crazy sometimes, it's still good to have each other. Someone to play with, to zoom down flights of stairs in pillow cases with, to paint with, bake with, laugh with, pretend with, run through sprinklers with, dress up with, and most of all to love.