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.
Wednesday, July 25, 2012
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.
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.
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.
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.
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. 
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.
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.
Friday, June 29, 2012
One Summer Week
This week has been quite an adventure. One day we made "cloud dough" with flour and baby oil. It was an interesting texture and the kids liked seeing what happened as we added more and more baby oil. That was the day we also painted faces and dyed hair.
One day we went to Lamb's Farm, a small petting zoo that has other activities like a train ride, mini golf, a little bouncy house. It was a beautiful day, almost chilly! When we got to the Farm, we had a picnic on the grass before we hit the activities. The kids wanted to see some animals first, so we started with the donkeys and llamas. We saw a huge piggy, lots of ducks, and goats that you can pet. Ben and Jonah loved the different animals. Ella tolerated the animals as long as I held her, and as long as the smell wasn't too terrible. She is sensitive to icky smells. Aidan stayed as far away from the animals as possible, but still participated in our tour of farm life.
When we took the little train ride, the kids were thrilled. We've been to Lamb's Farm many times over the years, and Ben and Jonah have great memories of different times we've visited. They were especially excited to show Ella and Aidan the excitement of the train. Jonah and Aidan sat in a tiny seat behind Ben, Ella and me. Ella was sandwiched in the middle of us, and held tightly onto our knees the whole way. Aidan sat close to Jonah, but as the ride went on and the noise of the "choo choo" continued, he slid closer and closer to Jonah as he plugged his ears, until Jonah finally put his arm around Aidan. On exciting things like train rides, I am usually pretty peppy. I get really excited about things like that. Especially when I know my kids will get a kick out of something. I usually point out landmarks or funny things on the way, look for things the kids will like, make "choo choo" sounds...but that day, I didn't really have to say anything! Ben and Jonah echoed me perfectly. Every time I was about to point something cool out to the kids, either Jonah or Ben would say "Ella! Look at that duck over there! She is going into the pond!" Or "Aidan! Look at the bear over there! It's just pretend. It's a statue. Isn't it cool?" They do this all the time, and I'm always momentarily surprised to hear their voices say things that sound exactly like what I would say. Then I remember they've been living with me for almost 10 years, hearing my voice and sharing my joy for life, and hopefully learning how to teach and love others. Probably all children sound like their parents. I love it when I witness my kids being so nurturing with each other. Then I know that whatever else happens in their lives, at least they will have these skills going for them. They are good people.
Yesterday we spent a few hours at the park the kids love. We climbed, swung on the swings, played in the water and sand, and made new friends. We got home, hot, tired, and happy, just in time to down a dinner and rush Ben to piano lessons. Another time this week we got out a plastic tub and emptied a bunch of rice into it. We played with it with scoopers and princess toys and trucks. Ella and Ben really enjoyed this. Today I copied an idea I found on a different blog about activities for kids. I got the kids outside, pulled out a whole bunch of bubble wrap and spread it on the ground. We put shaving cream on the bubble wrap along with some food coloring. Then the kids popped the squishy, colorful bubbles with their feet. They thought it was the coolest thing! The shaving cream ended up all over their bodies- tummies, faces, hair...it was great. Total sensory activity. Smell, colors for sight, texture, movement...so awesome.
One thing this week that wasn't so great was when Aidan went to his Social Skills camp at our therapy clinic today, he had a total meltdown. He's been doing the camp for a couple weeks now, his Occupational Therapist that we've known for years runs the camp, Ella goes to camp with him...it always surprises me when Aidan has a reaction to things like this. It happened during the school year too- what seemed to me like random days, Aidan would just have a complete breakdown about getting on the bus and going to school. I don't know why this happens, I don't know what sets him off, I don't understand why Aidan struggles with things that seem to me like they should be comfortable routines. Aidan's meltdowns seem to me to be random and unpredictable. But I say the meltdowns seem random to me, because I've learned over the years that the things that set off kids with Sensory Processing Disorder are not random to them. There are specific reasons they have meltdowns, and it's not because they're trying to be difficult or get their way. Something bothers them and they can't deal with it in a more age-appropriate way, so the only thing they can do to let me know they're struggling is melt down.
One thing I've also been thinking about in regards to my sweet Aidan is his sensitivity to noise. After talking with some other healthcare professionals this week, I think I need to investigate getting Aidan some ear plugs for noisy, anxiety-producing situations. (Places like public bathrooms that always have the loudest flushing toilets in the universe, zoos with surprising noises you can't prepare for, train rides with loud "choo choo's", the cafeteria at school, movie theaters...) I'm not sure if ear plugs will work for him sensory-wise, as far as the feeling of the plugs in his ears. Maybe after he realizes the plugs will make the world softer, he'll be willing to try them. We may try noise-reducing headphones also, we'll see how it goes. I have Jonah and Ben's 'issues' pretty figured out, but Aidan is still an enigma. I have work to do to understand what is going on with him.
When we picked Aidan and Ella up from camp, Aidan's OT took a moment to talk to me about how Aidan had done. She said it takes some time but he does slowly calm down. He participated in some Therapeutic Listening, which we have done before at different times with various boys, and the OT said that really helped Aidan get regulated again. I was just looking into this program online again yesterday, as it's been a while since we did Therapeutic Listening and I'm looking for ways to help Aidan. The program involves special earphones that don't block outside noise. The "music" the kids listen to works to regulate the brain, focusing on getting the two hemispheres to work in unison to be more efficient. The music is distorted at times, and some CD's have different sounds like white noise or nature sounds. The child listens to the music for a certain time each day. Aidan hasn't been compliant in the past when we've tried the program, but today it seemed to work well for him. The tricky thing about sensory issues is that some days a certain thing works great for helping to minimize sensory problems, and other days the same thing doesn't work at all and in fact makes the sensory problems worse. It's super frustrating.
We finished our day off with a few hours at the pool. I think my boys are half fish. Ella felt cold despite the 93 degree weather, so wasn't too happy about swimming. We had a little dinner at the pool since Daddy was coming home late and Mommy was too tired to think about what to fix a bunch of hungry, crabby kids. It turned out to be a lovely little day . The kids were happy eating and watching the little sparrows that come running when they see food dropping to the floor from little fingers. Aidan had gotten kicked in the mouth by someone in the pool so hard it had drawn blood, so after that "extreme trauma" he was happy to have some down time and eat cold ice cream. We ran into friends all afternoon, which made us all happy.
Another summer day is done. I wonder what adventures we'll embark on tomorrow.
When we took the little train ride, the kids were thrilled. We've been to Lamb's Farm many times over the years, and Ben and Jonah have great memories of different times we've visited. They were especially excited to show Ella and Aidan the excitement of the train. Jonah and Aidan sat in a tiny seat behind Ben, Ella and me. Ella was sandwiched in the middle of us, and held tightly onto our knees the whole way. Aidan sat close to Jonah, but as the ride went on and the noise of the "choo choo" continued, he slid closer and closer to Jonah as he plugged his ears, until Jonah finally put his arm around Aidan. On exciting things like train rides, I am usually pretty peppy. I get really excited about things like that. Especially when I know my kids will get a kick out of something. I usually point out landmarks or funny things on the way, look for things the kids will like, make "choo choo" sounds...but that day, I didn't really have to say anything! Ben and Jonah echoed me perfectly. Every time I was about to point something cool out to the kids, either Jonah or Ben would say "Ella! Look at that duck over there! She is going into the pond!" Or "Aidan! Look at the bear over there! It's just pretend. It's a statue. Isn't it cool?" They do this all the time, and I'm always momentarily surprised to hear their voices say things that sound exactly like what I would say. Then I remember they've been living with me for almost 10 years, hearing my voice and sharing my joy for life, and hopefully learning how to teach and love others. Probably all children sound like their parents. I love it when I witness my kids being so nurturing with each other. Then I know that whatever else happens in their lives, at least they will have these skills going for them. They are good people.
One thing I've also been thinking about in regards to my sweet Aidan is his sensitivity to noise. After talking with some other healthcare professionals this week, I think I need to investigate getting Aidan some ear plugs for noisy, anxiety-producing situations. (Places like public bathrooms that always have the loudest flushing toilets in the universe, zoos with surprising noises you can't prepare for, train rides with loud "choo choo's", the cafeteria at school, movie theaters...) I'm not sure if ear plugs will work for him sensory-wise, as far as the feeling of the plugs in his ears. Maybe after he realizes the plugs will make the world softer, he'll be willing to try them. We may try noise-reducing headphones also, we'll see how it goes. I have Jonah and Ben's 'issues' pretty figured out, but Aidan is still an enigma. I have work to do to understand what is going on with him.
When we picked Aidan and Ella up from camp, Aidan's OT took a moment to talk to me about how Aidan had done. She said it takes some time but he does slowly calm down. He participated in some Therapeutic Listening, which we have done before at different times with various boys, and the OT said that really helped Aidan get regulated again. I was just looking into this program online again yesterday, as it's been a while since we did Therapeutic Listening and I'm looking for ways to help Aidan. The program involves special earphones that don't block outside noise. The "music" the kids listen to works to regulate the brain, focusing on getting the two hemispheres to work in unison to be more efficient. The music is distorted at times, and some CD's have different sounds like white noise or nature sounds. The child listens to the music for a certain time each day. Aidan hasn't been compliant in the past when we've tried the program, but today it seemed to work well for him. The tricky thing about sensory issues is that some days a certain thing works great for helping to minimize sensory problems, and other days the same thing doesn't work at all and in fact makes the sensory problems worse. It's super frustrating.
We finished our day off with a few hours at the pool. I think my boys are half fish. Ella felt cold despite the 93 degree weather, so wasn't too happy about swimming. We had a little dinner at the pool since Daddy was coming home late and Mommy was too tired to think about what to fix a bunch of hungry, crabby kids. It turned out to be a lovely little day . The kids were happy eating and watching the little sparrows that come running when they see food dropping to the floor from little fingers. Aidan had gotten kicked in the mouth by someone in the pool so hard it had drawn blood, so after that "extreme trauma" he was happy to have some down time and eat cold ice cream. We ran into friends all afternoon, which made us all happy.
Another summer day is done. I wonder what adventures we'll embark on tomorrow.
Thursday, June 21, 2012
Superheroes
Today was my most favorite day of our summer so far. The kids had a fantastic day. We putzed around this morning, Ella slept until 9am (!!) and the boys played video games together. We stopped by a garage sale to look for clothes for Ella, and then went to the gym. The kids were all getting along so well, I hardly recognized my family. We got home and made lunch, yummy things that everyone likes. Then the boys had an idea. They wanted to play Superheroes.
This was the best idea since sliced bread. They started by having me spray their hair with colors leftover from Halloween last year. Ella needed to get in on the action, so we sprayed the ends of her piggy tails. After that, the boys changed into the appropriately-colored clothing for their chosen superhero. Aidan was Batman, Jonah was Robin, and Ben was Flash. Ella was "Pixie", and then changed her name to "Flower" half-way through the afternoon. Ella's costume included wings, and at one point, hot pink high heels. She calls the wings "the fairies," so all afternoon Mama was called upon to "put the fairies on Ella." Ben, of course, had to wear his black suit for today's production. His suit comes out for all kinds of occasions. He especially likes to wear it when he goes out roller blading to impress all his neighborhood buds.
Jonah asked if I could help him create a Robin logo. Luckily, my high school art classes are paying off. We worked on a logo together, then he made business cards for himself and his posse of heroes. Then he informed me he needed a mask. Again, luckily, I have mastered the art of making eye holes in many a mask.
I also made logos for Pixie, Batman, and Flash. I was quite impressed with myself. We found ways to stick the logos on the heroes' shirts, and then we needed to find capes of various colors to complete the outfits. We took Daddy's t-shirts, turned them inside out, tucked the sleeves in, and safety pinned them around the boys' necks. Ta da! The Justice League is born again! The kids cooperated and played and imagined and colored and cut and had a blast for hours. They kept Ella involved, and made sure Aidan was part of the group too. I love days like this when they all get along and their sweet little spirits come shining through. I enjoy watching my kids so much when they have days like this. I love their laughter that crinkles through the house, their mad dashes down flights of stairs to "get the villains" and save the heroes.
I love listening to how they come up with ways to make sure all four of them have important roles. I love hearing them rehearse for when Daddy comes home, so they can present the Justice League to him from "the balcony", as they call our second floor, when he enters the house at the end of his workday. This is the kind of summer day I live for.
We've had about three weeks of summer vacation, and we've already done so many 'sensory activities' I can hardly remember them all. We've done pearler beads- the boys have used tweezers to painstakingly make about a million little critters that I've ironed and peeled wax paper off of. The tiny beads are embedded into all the carpet in every room of the house. But it's great for fine motor practice.
We took glowy sticks, cracked them until they glowed bright, and put them in the bathtub along with a bunch of water and a bunch of kids. We turned off the lights and had a glow-in-the-dark bath! That was very cool. Even Aidan wanted in on the action during that bath, and he is not a bath-lover. He did insist on wearing his swimming suit if he was going to agree to a bath, but whatever works.
I bought water beads at a flower shop, we put them in a small plastic tub of water and watched them expand. They're a crazy fun texture, sort of soft and a little slimy, but not really squish-able. The kids LOVE them. I made the mistake of thinking that if I left the four kids and the tub of beads alone for a minute while I did a load of laundry that they couldn't possibly get into too much trouble. Wrong. I should have known better. When I got back, there were water beads everywhere. Everywhere. There was water all over the floor. We're talking like flood waters, here. The boys said Ella had wanted to stick her feet in the tub. So the tub got moved outside. You would think I would have learned my lesson, but I left them alone again with the tub to make lunch. They had all kinds of kitchen tools- measuring cups and spoons, wooden spoons, ladles, etc. I figured they had enough to keep them busy for a few minutes without getting in trouble. When I came back to check on them, the boys all had wet hair from sticking their entire heads into the tub. They had water beads in their ears, hair, and stuck on their necks. I checked nostrils to make sure there weren't any hiding in there too. The moral of the story is, sensory tubs are great, but no matter how old your child is, they can still find ways to wreak havoc on the tub.
We've threaded pipe cleaners through pretty star beads to make bracelets and necklaces. (Pipe cleaners are easier for little fingers because they're not as floppy as yarn). We've also stuck pipe cleaners through a kitchen strainer. Pipe cleaners are so great for all kinds of fine motor skills! We've done play dough, of course, and painting. We've baked: measured, counted, stirred, concocted strange combinations of our own to smell and taste. We have rolled meatballs and cookie dough. We've been to the park and the pool to work on sensory issues and gross motor skills. We've played in the sandbox, again for sensory exploration. We've cut and colored superhero masks and logos. We've melted crayons to make color combinations in little muffin tins. We've painted with shaving cream tinted with food coloring in the bath tub. We've played with shaving cream on the kitchen table. We've explored with spaghetti noodles, and eaten some.
And this is only week three. Thank goodness for Pinterest, or Mommy would be totally out of sensory ideas! I love the fact that the kids think we're just playing when we do all these things, and I think ha ha! I just got you to work on your fine motor skills! Or sensory issues! Or gross motor skills! Or communication skills! I feel so stealthy and sneaky. In a good way. I often feel like I don't do enough as a mom, especially considering the special needs my kids have. But if I sit down and think about all the things I do with the kids every day, I realize that we are actually doing a lot to address their areas of need. I think it's easy as parents to forget all that we do every single day to make sure our kids are growing up healthy, happy, secure, and independent. On days like today, when the kids use so many of their wonderful skills to just be kids all day long, I am proud of what we have accomplished so far as a family. All the therapies, doctor's appointments, struggles, worries, and work we've done has been worth it. I think back to how each of the kids used to be, months or years ago, and see how very far they have each come. So far, that today they can play like kids should; creating, imagining, laughing, cooperating, helping, caring, running, jumping, planning, having fun. That has always been one of my goals for each of my kids- that they just be able to have fun like kids should.
 |
| See those muscles?? |
I also made logos for Pixie, Batman, and Flash. I was quite impressed with myself. We found ways to stick the logos on the heroes' shirts, and then we needed to find capes of various colors to complete the outfits. We took Daddy's t-shirts, turned them inside out, tucked the sleeves in, and safety pinned them around the boys' necks. Ta da! The Justice League is born again! The kids cooperated and played and imagined and colored and cut and had a blast for hours. They kept Ella involved, and made sure Aidan was part of the group too. I love days like this when they all get along and their sweet little spirits come shining through. I enjoy watching my kids so much when they have days like this. I love their laughter that crinkles through the house, their mad dashes down flights of stairs to "get the villains" and save the heroes.
We've had about three weeks of summer vacation, and we've already done so many 'sensory activities' I can hardly remember them all. We've done pearler beads- the boys have used tweezers to painstakingly make about a million little critters that I've ironed and peeled wax paper off of. The tiny beads are embedded into all the carpet in every room of the house. But it's great for fine motor practice.
We took glowy sticks, cracked them until they glowed bright, and put them in the bathtub along with a bunch of water and a bunch of kids. We turned off the lights and had a glow-in-the-dark bath! That was very cool. Even Aidan wanted in on the action during that bath, and he is not a bath-lover. He did insist on wearing his swimming suit if he was going to agree to a bath, but whatever works.
I bought water beads at a flower shop, we put them in a small plastic tub of water and watched them expand. They're a crazy fun texture, sort of soft and a little slimy, but not really squish-able. The kids LOVE them. I made the mistake of thinking that if I left the four kids and the tub of beads alone for a minute while I did a load of laundry that they couldn't possibly get into too much trouble. Wrong. I should have known better. When I got back, there were water beads everywhere. Everywhere. There was water all over the floor. We're talking like flood waters, here. The boys said Ella had wanted to stick her feet in the tub. So the tub got moved outside. You would think I would have learned my lesson, but I left them alone again with the tub to make lunch. They had all kinds of kitchen tools- measuring cups and spoons, wooden spoons, ladles, etc. I figured they had enough to keep them busy for a few minutes without getting in trouble. When I came back to check on them, the boys all had wet hair from sticking their entire heads into the tub. They had water beads in their ears, hair, and stuck on their necks. I checked nostrils to make sure there weren't any hiding in there too. The moral of the story is, sensory tubs are great, but no matter how old your child is, they can still find ways to wreak havoc on the tub.
We've threaded pipe cleaners through pretty star beads to make bracelets and necklaces. (Pipe cleaners are easier for little fingers because they're not as floppy as yarn). We've also stuck pipe cleaners through a kitchen strainer. Pipe cleaners are so great for all kinds of fine motor skills! We've done play dough, of course, and painting. We've baked: measured, counted, stirred, concocted strange combinations of our own to smell and taste. We have rolled meatballs and cookie dough. We've been to the park and the pool to work on sensory issues and gross motor skills. We've played in the sandbox, again for sensory exploration. We've cut and colored superhero masks and logos. We've melted crayons to make color combinations in little muffin tins. We've painted with shaving cream tinted with food coloring in the bath tub. We've played with shaving cream on the kitchen table. We've explored with spaghetti noodles, and eaten some.
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