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Wednesday, May 30, 2012

Bowling and a Movie

Your kid gets invited to a friend's bowling birthday party...awesome! You get the gift, make sure your little guy signs the card, and dispatch Daddy and son to the bowling alley. You think hurray! Another notch in the childhood memory belt. Childhood should be full of carefree bowling parties with your friends. It's good to be a kid.


Then you remember your kid has Sensory Processing Disorder. And Tourette Syndrome. And that nothing ever goes according to plan when you throw those two factors into the mix.


I got a call from Daddy, after he had finally, successfully gotten Aidan ready for his friend's party. Alex said it had been quite a process. First of all, you're supposed to wear socks at a bowling alley- socks are Aidan's most frightening nemesis. He couldn't handle the socks. The seams were wrong, the tightness was wrong, the whole thing was terribly frustrating. Then he put the bowling shoes on, size 1, like I had pre-ordered. Aidan said they were too tight. He was really getting upset, and Alex was really trying to stay calm. Aidan's friends were calling him, telling him it was almost his turn to bowl. Alex had Aidan try a size 2 shoe. Too lose. Bothered his ankle. Alex finally got Aidan in a size 1 1/2 shoe, with NO socks. Despite how many disgusting, sweaty, six year old feet go in those shoes, at least the shoes were on Aidan's feet and he was ready for his turn at bowling. 


Now you remember. Just a fun little birthday party can be riddled with mines for a child like our sensitive, frustrated Aidan. Jumpy places are the same way. Aidan desperately wants to jump, but loathes socks so much he can hardly bear it. The need to jump on huge inflatable bouncy things always wins out over the horror of putting on a sock, so it works out. But I forgot that he'd probably have to wear socks at the bowling party. And it almost derailed all the fun. Sometimes I forget about the severity of our kids' various "quirks", and when I fail to prepare for the situation, it never goes smoothly.


Earlier this school year, Ben had a field trip with his class for Earth Day. They were going to go see a movie at a theater! It sounded like so much fun to me. I was thrilled on his behalf. The two days prior to the field trip, Ben was home sick. The day of the field trip, he was healthy enough to go back to school but had a complete freakout meltdown about going. His anxiety was through the roof. I finally wiggled out of him that he was terrified of going to the movie theater with his class. He struggles at theaters as it is, but always has someone there to take care of him like Grandma or Mom or Dad. He was scared to death of going to a movie without a person he trusted to take care of him. I was dumbfounded at first- how could a kid not want to get out of school and go to a movie for a field trip with his class?? But then I looked at it all from Ben's perspective and realized it made perfect sense. The noise of the theater, the people, the strangers, the temperature, the darkness, the worrying about what if he had to get up and pee, what would it be like to be at a movie without Mom, what if he got lost...I went with my Mommy Gut that day and let Ben stay home from school. I didn't make him face his fear and go to the movie with his class. He was insanely grateful, so grateful it sort of broke my heart. I was grateful that I had figured out what the problem was and decided to let him stay home. 


I know most parents probably would have made their kid go to school, it's just a movie after all! But if you know Ben the way I know Ben, it just wasn't worth putting him through all that. I would take him to the movie some other day when he felt safe and secure and he'd learn more that day anyway because his brain would be available for learning instead of caught up in anxiety. It just strikes me sometimes, stops me in my tracks, to look at the world through my kids' eyes. Bowling parties are filled with potential dangers, movie field trips are riddled with possible triggers of a meltdown. These things I think are fun and would have killed to do as a kid, my kids struggle with so much. When you parent kids like mine, you have to come at parenthood from a different angle. Things that make sense to "normal" kids and parents just don't work the same way in our house. Field trips are a change of routine, scary, unpredictable. Bowling is filled with noise, people, lights, action, too much stimuli. AND you have to wear socks. Unless you have a great Daddy who realizes you're not going to bowl at all if you have to wear those socks, so lets you go barefoot in your sweaty, germy bowling shoes. Because he wants you to experience the party and have fun being a kid. Because Daddy loves you and 'gets' you. Sometimes it's hard to understand why our kids act the way they do. You definitely have to think outside the box with these kids of ours, and that's why many people don't 'get' our parenting techniques or our kids.


We try the best we can to give our kids fun, normal opportunities like many other kids get to experience. Sometimes, though, you have to realize that your kid does have special needs and experiences need to be modified. I'm still surprised sometimes at how the things I take for granted, like bowling or a movie, can be such sources of anxiety and discomfort for my kids. We do what we can to give our kids what they need in order to participate in regular life, while still making sure their individual needs are accommodated. I guess that's what makes life interesting- that we are all so different. My kids always keep me on my toes with their variety of unique needs. They have taught me so much about how to celebrate and cherish our individual 'specialness' while living in a world that usually centers around people who do not have special needs. Because of my kids, I look at the world differently, and appreciate all the little things that I used to take for granted. 

Monday, May 21, 2012

TS Conference


 Alex and I went to a conference about Tourette Syndrome this weekend. It was such a great experience! I knew most of what was presented, but it was a unique morning because Alex was with me. Usually I'm the only one doing the research, reading, digging for information, looking for doctors, going to support group meetings...and Alex is always there to support me. It was really fun being with my husband for this conference and seeing it all through his eyes. 




 The conference speakers were a married couple, the husband is a neurologist and movement disorder specialist from Pennsylvania, and his wife is an educator who has experience in many different aspects of schools. They also have two children with TS. It was so interesting, because the doctor presented medical information about Tourette Syndrome, treatments for it, research that is being done, etc. Usually when you go to a doctor with your little boy who is tic tic ticking away, the doctor says oh, he's a boy. Lots of boys have tics. Don't worry about it. Then when you continue to hound the doctor because you know something more serious is going on, the doctor says oh, well, your son has Tourette Syndrome. We don't know how he got it, why he got it, AND there is nothing we can do about it. Enjoy your day. Humph. But this doctor at the TS conference was different. He gave me hope. Although there is no cure for Tourette Syndrome, there are methods a family or individual can use to deal with the symptoms of TS. There are things you can do for the other diagnoses that usually
 come with TS, like our boys have-ADHD, OCD, anxiety, sleep disorders, learning differences, rage. I sat there wondering if Jonah and Ben's diagnosis of Bipolar Disorder is inaccurate, because when you have TS it is common to have Oppositional Defiant Disorder and explosive outbursts, or rages. Like we have had in our family. 


The doctor was incredible. He was so knowledgeable about TS, and I felt like I could actually trust him! Usually I go in to any doctor's appointment with my Advocate For My Child hat on, ready to educate the doctor about my kid, ready to fight for what I know my kid needs, and most of all wary of whether I should trust the doctor or not. When we first started our special needs journey, I blindly trusted any and all people who looked important, sounded important, or were doctors of anything. After so many years of not being able to find answers to help my kids, I'm a little wary of people in the medical field until they prove to me they know what they're talking about. After that, they have my whole heart and soul. But they have to prove it to me first. I felt like I could really trust this doctor. I told Alex that I think a road trip to PA is in our future. We spoke with the doctor and his wife after the conference, and I mentioned to them that the boys have been diagnosed with Bipolar. I asked if they thought this was an accurate diagnosis or whether we may have some more exploring to do. The doctor said this is a common misdiagnosis of kids who have TS, and TS-related mood issues are treated differently than Bipolar-related mood issues. Hm. That's what I thought. The road to PA is looking more and more interesting. 

The woman who spoke about educational and parenting issues was also fantastic. She talked about some things that made me actually tear up. She said how she has her son stand at the dinner table sometimes when he is up and down, in and out of his chair, and can't sit still. We do that!! She showed a picture of her daughter who has TS, clothed from head to toe in warm clothes that were all mismatched. If that girl met Ben, I'm sure they'd be lifelong friends!! Ben wears long pants on even the very hottest days of the year. No matter how hot his room is, Ben sleeps clothed literally from head to toe, with a sheet and heavy blanket on. Silly sensory issues. They make life interesting! 


The woman talked about how in her opinion as an educator and a mom, parents should be open with their child's school about their child's special needs. We have done this from the beginning and it has worked out so well for our kids. The speaker said that you should be honest with your kids about their diagnosis, that it shouldn't come as a shock to them if in 8th grade they find out that their 504 meeting is happening the following week. The kids should know they have a 504 Plan. They should know they have Tourette Syndrome. They should be able to be their own advocates. When she said all this, I thought duh! Of course our kids know their diagnoses and that they have 504 Plans! Jonah graduated this year from an IEP to a 504, the school finally gave Ben a 504 after I had requested one every year since kindergarten (he's in 4th grade now), and the boys are thrilled that Aidan is going to be getting a 504 just like them too! The kids know about their "special" needs, and we talk about all of it openly in a warm, positive, supportive way. So I thought, why is this woman telling us all this? Then I realized that a lot of parents don't do this. I believe as a parent you have to make the best decisions for your family, and I try not to judge other parents. But for our family, honesty all around has worked best. I was so happy to hear from an "expert" that I had it right! That we have been doing some of the right things as parents. 


There are a million parenting books for people who have typically developing kids, but I haven't yet found a book about "What to Expect the Second Year From Your TS Kid." There's no trail blazed for you as a special needs parent. You're sort of in the dark, fumbling around in all directions looking for a flashlight, hoping you don't break anything fragile in the meantime. There's nothing I've ever read that says you should tell your child what their diagnosis is, it's just something Alex and I have decided to do with our kids. There are books that say letting your kid stand while eating or doing homework may help him concentrate, and that is something we do too. But to hear that we've done a couple things right, just by chance I guess, was so rewarding that I just teared right up in that conference room. 


I'm so used to being on the defensive about my parenting. We have lots of supportive, loving people in our lives, but there are many other people who seem to judge judge judge. People who are old, young, have "normal" kids, don't have kids, strangers, friends...I've seen so many people judge us because of how we parent. But they don't know our unique kids. Sometimes people are just trying to help, and I understand and appreciate that. But I'm talking about the people who just judge for judging's sake. People have told us we don't discipline strictly enough, we don't give enough time outs, we don't have enough rewards, we aren't firm enough, we don't follow through, we are too 'nice', we are too strict, we have too many schedules, we don't have enough structure, we shouldn't let them eat sugar or gluten or dyes, our kids just need a good spanking...whew. People's opinions can be tough to deal with. I've learned to nod and smile and put on my outer layer of tough skin, but it still hurts to hear all the things people think you're doing wrong as a parent. Especially when all you eat, sleep and breathe, every single day, is how to make life for your kids better. Although I'm sure all parents, even those of "normal" kids, get advice or opinions offered to them, it seems that when you have a child with special needs that people feel free to tell you much more often about all the things you're probably doing wrong as a parent. So to have the speaker at this TS conference, who is in the same boat as I am- with multiple kids who have special needs, say that I am doing some things right was just overwhelming. I will forever be grateful to that other mom for just reminding me that there are families like mine out there, and we're all doing the best we can, and in the world where we are not "normal", we're actually doing a good job of raising our kids. 


Our kids stand at the dinner table, they aren't forced to eat if they are not hungry, they go to bed on 90 degree nights in long sleeves, long pants, and socks, they plug their ears when a toilet is flushed, they eat and sleep and take meds at set times every day so they stay on a schedule (and yes, I get a little freaky when the schedule is not followed, because I am the one who has to deal with the fallout of a messed up schedule!), they don't wear socks even when society says they should, sometimes they wear socks even when they shouldn't because they can't stand the feeling of grass or sand on their feet, they have been known to wear Scooby Doo costumes to doctors' appointments, we watch TV sometimes when we eat meals so that everyone can focus on one thing and not digress into fights and running around...so there. Those are just some of the things we do that work for our family that other people think are crazy. Crazy is the new normal in our house. When all the kids on the block are out running around until 10pm, our kids have been in bed since 7:30 or 8. Because that's what works for them. I know they'll be up at the crack of dawn regardless of when they went to bed, and they probably will have gotten up several times during the night, and if they go to bed late they'll just be even more tired and crabby than usual the next day. So most summer nights, our kids go to bed on time even though it's summer. It just works for us. We're weird, what can I say? 


It was a great conference. It is so important to connect with other families when you have children with special needs. To realize you're not the only weird ones is such a blessing. I'm researching TS experts in the area, and if I can't find one I feel comfortable trusting, the trek to PA with a car full of crabby SPD (Sensory Processing Disorder) kids is in our future. We'll load up on DVD's and snacks and bribes and just hit the road. We won't sleep much, the kids will fight a lot, and it will pretty much be a horrible time, but wow, if this doctor could point us in the right direction about what is next on our TS path, that would be worth it all. We'll see. In the meantime, I'll keep searching for things that make life for our kids easier. And I'll keep letting them stand at the dinner table when they're too squirmy to sit. The world will have to deal with our weirdness. 

Monday, May 14, 2012

Threads

Today I had to go to the dentist. Again. To have more cavities filled. I have a deep phobia about the dentistry profession, which relates back to my childhood as a missionary kid in Africa. I have really bad memories of dentist experiences, growing up. There was the time that I was probably about 8 years old and had a cavity. Our family wouldn't be going back to America for at least another year, so I had to get my cavity fixed in Africa. We went to the African dentist up north. He wouldn't let my dad stay in the room with me while I had my cavity filled. The dentist spoke to me, but he was speaking half French, half twisted English, and I couldn't understood what he said. So I just shook my head. The filling was torture. My dad was finally let back in to see me. The dentist laughed and told my dad I was so brave, because he had asked me if I wanted Novocaine and I had said no! I hadn't understood what the dentist had asked, so had accidentally said I didn't want my mouth numbed! Not a good memory. So now, as a grownup, I would rather do anything than go to the dentist, although my dentist happens to be a lovely person. But he's still a dentist. So I did survive, but I write this with a tongue that feels 5 sizes too big for my mouth and a jaw that is totally numb. I know this is all part of the dentist experience, but I really hate it. It's so unnatural and creepy. I found out several things tonight. First of all, I apparently have strange mandible anatomy, according to my lovely dentist.  Because of this odd jaw issue, the first shot of Novocaine didn't take, and was very painful. The second shot was more painful and did take. Thank God. 


The second thing I learned tonight was the reason I have such bad teeth with recurring cavities is not because of bad hygiene, but instead because I grew up in the Central African Republic, in West Africa, basically in the bush, with no flouride in the drinking water. AH HA! That was a BIG 'ah ha moment'. Apparently the Novocaine has affected my brain, because I'm very excited that I have found the root (no pun intended) cause of my bad teeth, because I brush and floss and rinse and gargle religiously. So the fact that I have bad teeth is very irritating because I work so hard to keep them healthy. Now I know I can at least partially blame my crazy teeth on my African childhood!


My childhood in Africa has affected my grownup health in some other interesting ways that I never would have thought of. Or at least some questions about my health have been raised by the fact that I grew up in Africa. Take my obscene amount of allergies, for instance. I just found out this year that I am allergic to basically every living thing, including some fruits and veggies and many animals. My kids joke that I'm allergic to everything on Earth except for them. So are my allergies due to the fact that I grew up around a totally different set of wildlife? I always joke that I grew up about three blocks from the equator. As a child I wasn't exposed to the trees and flowers and foods that we have here in the U.S., so maybe that is why I sneeze every time I breathe the air here. Who knows.


Over the past couple years I've also realized my hearing is not good. I finally got it checked out because it's so aggravating to hear that someone is talking to me but not be able to understand the words they are saying. I have pretty significant hearing loss, in fact I could be labeled hearing impaired when I don't have my hearing aids in. I did a lot of research on hearing loss, because it seems so strange to me that someone on the young side and in good health would just have random hearing loss. It's not really a genetic thing in our family, and to make it even more of a conundrum, my best friend- who is Danish and grew up with me in Africa- also has hearing loss! I finally dug up that hearing loss may be related to taking antimalarial medicine. We took antimalarial meds my entire 13 years in Africa! So you never know, maybe this had something to do with my hearing loss.


Alex teases me because I say everything in my life relates back to Africa. And he also reminds me that I have sensory issues much like my kids. This is true. When you grow up in the bush of Africa, you don't have a whole lot of choices about the things that people in developed countries sometimes take for granted. I am constantly overwhelmed by stores that have too many choices, too much stimuli, too much noise. I get a migraine as soon as I enter a fabric store, an electronics store, a grocery store...ok, pretty much any store I guess. The sounds and sights and smells just overwhelm me, even though I've lived in America for longer than I was a missionary kid. In Africa, you don't have three-hundred-and-seven choices of shampoo. You have one choice. It smells like apples and is a pretty green. You don't have forty-two choices of syrup flavors. Alex teases me mercilessly because I eat my pancakes with Karo Light Syrup. He says it's for cooking, not eating on pancakes!! Whatever. When you're a missionary kid you feel lucky to get any syrup! Growing up, we didn't have electricity except for a short period every evening. The mission had a generator that one of the missionaries turned on at 6pm and then turned off at 10pm. Alex says it's funny that I hate the humid heat of an Illinois summer, but it's because now I have the choice of air conditioning, something we never had growing up. Now I can say forget this heat! I'm going in to my cold house! Take that, Mother Nature! I've realized that many people take so much for granted in developed countries. Growing up an MPK (missionary pastor's kid) has made me appreciate many many things about life. So many luxuries we have in this country, so many opportunities, so many choices we can make, so much life is available for us to live. It's incredible!


I have the ultimate trump card as a parent- my African Childhood. Whenever my kids complain that there's nothing on TV, I can say oh yeah? Try growing up with NO TV! My privileged American children gasp with horror. When they say there's nothing to eat in our pantry, I can say oh yeah? How far away is our grocery store? About 6 minutes. Do you know how far we had to travel to the nearest grocery store in Africa? A whole DAY of driving!! My well-fed children exclaim in disbelief. When my boys forget to flush the toilet, I can say oh yeah? Try squatting over a hole, outside in the sweltering heat with flies swarming at your tushy and trying to aim your poo into that dark, stinky hole, like African children often have to! My forgetful boys run back to flush the toilet. When my children complain that they are thirsty, I can say oh yeah? How far away is our faucet, with safe, cold water? African kids don't have safe, cold water flowing from their faucets like we do. My sweet children frown with the pain of knowing that some kids in the world don't have everything they do. We live in such an amazing culture. Every step of my day is filled with privilege and luxury, compared with the people who filled my life growing up. It's hard to get used to the amount of choices and products and privileges that fill this society when, as a child, you lived in a world that satisfied all your needs but did so without excess. 


I love pondering how my childhood has made me who I am today, and the examples are endless. I was a psych major for a reason, I guess. I love the threads that tie life together, past to present, loved ones to strangers, shampoo to syrup. I love finding meaning in who I am today because of who I was growing up. I wonder who my children will become as they grow, because of the childhood Alex and I are giving them. Everything ties together, and what I had the opportunity to experience as a kid in Africa has made me who I am today. No matter how much my dear husband teases me about how "everything relates back to Africa."



Saturday, May 12, 2012

Saturday





Today was a good family day. The kind I used to only be able to dream about because our lives were so crazy.


We hung around this morning, in our pj's, playing and crafting together. The kids got out all sorts of glitter, glue, sparkles, puff balls, and markers, and made sweet little gifts for me for Mother's Day. Alex came home from his dentist appointment this morning and we all gathered around the table and talked as we did our art. It was really a fun family time, with no arguments or insults! 


We went out for lunch to celebrate our family weekend, and the kids were all so good at the restaurant. They were engaging and charming and interesting. I had brought my Mary Poppins bag of activities for Ella, including something her OT just recommended yesterday to strengthen her fine motor skills. I took an empty spice jar and filled it with small fun things like colored paper clips, beads, sparkles. She had to dump them all out and then stick them back into the jar, one at a time, through the tiny top. She loved it and it kept her busy for a long time. 



Jonah, king of marshmallows
After lunch we went to the "big park", where the boys all rode their scooters on the skateboarding ramps while Ella made new friends and played in the sand. It's so cool to watch her make friends and be social. She learns new things every time she plays with a new friend- how to get her body to sit in a new position, how to slide down a slide on her tummy, how to climb up a ladder. 

I love going to the park to watch people. I think it's so interesting how different people parent, and the park brings out a different side of moms and dads. I watched a father pushing his son on a swing. His son was about 4 years old and the dad was pushing him as high as he could on the swing. The boy was screaming his head off, partly in fear and partly in excitement. I was struck with how different our four kids are from children like that boy. Whenever our kids get on a swing, we carefully ask them how high they want to go and gently push them until they say 'stop!' Since they all have such strong sensory issues, we respect them when they say they are high enough on the swing, or that we should stop tickling them, or that they don't want to go upside down at gymnastics class, or that they want Mommy to flush a toilet while they exit the bathroom so they don't have to hear the loud noise. I think if we didn't understand our kids' issues, we could easily just think they were being difficult, obstinate, stubborn. But since we have spent so much time and energy trying to understand what is going on with our children's brains, nervous systems, sensory systems, etc, we know that the kids have limits and we always strive to gently push them to grow while accepting who they are. 



After dinner tonight, we went out to our backyard and Alex started a fire in our little fire pit. I had bought jumbo marshmallows and new roasting forks for our summer adventures, so we thought we should take them for a trial run.



We roasted, told funny stories about the kids, and laughed until we were hoarse. Jonah spread sticky marshmallow all over his face while Ella headed to the sandbox because she had had enough of the marshmallow festivities. Aidan snuggled up with Daddy under a blanket. For our last hurrah of the night, we took a big jump on the trampoline and then stuck the kids in the tub and shower to rinse off the smoke from the fire and all the marshmallow goo. We put the kids to bed, smelling of snuggles and bubble bath. This was a good day. I used to long for just one day like this once in a while, where no one was having rages and I didn't have to be on guard the entire day. I relish the fact that these kind of days happen more regularly now. We are happy today.

Friday, May 11, 2012

Ella's Birth Day

After our three boys were born, prematurely and under difficult circumstances, the doctors told me that perhaps I should not have any more children. They couldn't predict what would happen if I got pregnant again, and I would definitely be high risk if I did get pregnant. For years, Alex and I wrestled with what to do. I felt in my heart that there was another baby waiting for us to be ready for parenthood again. But I didn't want to be reckless and put a new baby's life in danger, or my own. Most people I confided in said I probably should weigh on the side of caution and not have any more babies. Even though I sought out these opinions at times, asking what friends or family thought we should do, I didn't like this answer. 


One Sunday in November of 2008, we were sitting in church. It was bright and cold that day. The pastor was preaching about the choices we have in life, and how sometimes we just need to leave things up to God, put things in His hands. I had tuned out for a while, mulling over the ever-present Baby Question. I was so tired of trying to figure out what the best decision was. I sat there next to Alex that Sunday, and prayed that God would just give me a sign either way as to what to do, because I really didn't feel capable of making the right decision when life or death could be hanging in the balance. 


I tuned back into the sermon, to hear the pastor talking about a woman who had been sick for some time. She finally went to the doctor, who ran a battery of tests. She went home and waited for days for the results. The doctor called, and the woman was afraid to answer the phone because she was sure the tests would reveal that she had cancer. Instead, the doctor told the woman that she was pregnant! Instead of receiving news that she was dying, the woman was told she had a new life growing inside her! All of a sudden, I felt this overwhelming sense of peace and comfort and sureness. I knew from the bottom of my soul, that God was filling me with the knowledge that we would have another baby, and it would all be ok. I just knew. I had a peace that is indescribable. I've had this feeling on a couple other occasions in my life, and I recognized this sure, peaceful knowledge. I was overjoyed and relieved, because this was the answer I wanted.
Precious photo by Only Just a Moment
In December, Alex and I found out I was pregnant. We hadn't been exactly planning when we were going to have this new baby, and we were still hashing out whether we should or not.  Despite all this, we were thrilled. Scared, but thrilled. We couldn't believe our family was about to get even bigger! After seeing several different doctors who refused to take my case because it was so high risk, we found a great team of high risk OB doctors, who wouldn't be letting me decide if/when I needed my own C-section! I began taking weekly steroid shots to try and stay pregnant as long as possible. Alex learned how to give the shots to me, and every Tuesday night after the boys were in bed, we'd head to the kitchen for a very painful shot in the tushy. One time Alex hit a bleeder, and freaked out. I assured him it didn't hurt any more than all the other shots had, and we just bandaged up my tush and went on with the night. Then I got gestational diabetes, which can be a side effect of the shots I was taking. That was a low point in my pregnancy. I had to re-learn how to eat. I had to take my blood sugar levels several times a day. I had to pee on a stick every morning. I had to keep a diary of food-related details, and report to the nutritionist periodically about my health. It was difficult and intimidating. But how I loved being pregnant. I always think it's so unfair that I have had so many pregnancy debacles, when I am a woman who loves to be pregnant!! Not fair.
One time during my pregnancy, I got bronchitis. I thought for sure I was going to cough up a lung. We were out looking for a new car, minivan actually - since we now had enough kids to staff a small army. I didn't feel good at all. I was coughing like crazy. All of a sudden I felt something in my side sort of slip out of place. There was intense pain every time I took a breath or spoke. I thought I was going to die, literally. I had a massage scheduled that night at a salon. The masseuse knew me and our family story, and when I walked in crying she knew something was wrong. I was in so much pain, I cried the entire hour of my massage. I just laid on the table, where I was supposed to be relaxing, and cried as my friend massaged the muscles around what we realized was a rib that had popped out of place. I didn't know if I should go to the ER or the chiropractor or what. So I went home to try and sleep and see the doctor in the morning. I cried that whole night and tried not to breathe. The next day I saw the chiropractor and the doctor, who both got my anatomy back to where it should be, but the pain was still intense. I tried not to cough anymore since that could send that pesky rib back out of place. The drama in this pregnancy was crazy!


When we had our ultrasound to make sure the baby was doing ok, and to see if we were having another boy or a girl, I was so excited. I loved getting to see my tiny baby. As I lay there on the cold table in the dark, the tech asked if we wanted to know the sex of our baby. Uh, yeah! She said she could tell it was a girl! I yelled with joy. I had tears in my eyes. A girl. A whole new world.
During the later part of my pregnancy, I had to drive to the doctor, an hour away, every week. Not an easy task with three little boys at home. But I was determined to do my part in delivering a healthy baby into the world. One day at about 30 weeks, I started having contractions. I arranged to have grandparents babysit the boys and Alex and I went to the doctor. I was indeed having contractions. Overnight, the contractions slowed a bit, and since my water hadn't broken and I was stable, I was sent home. The doctor said I could go weeks having contractions and dilating but not going into labor. Hm, way to comfort a high risk mom. 


About 2 1/2 weeks later, I tried to go to sleep after putting the boys to bed. I started feeling stronger contractions than I had for the past weeks. I finally got up and told Alex we needed to go to the hospital, something was wrong. Again, grandparents arrived to save the day. And again we rushed to the hospital. This time they ended up admitting me. I had drugs to help the baby's lungs develop quickly and more drugs to slow labor. I was there a couple excruciating days, waiting and worrying about what would happen. Jonah and Ben weren't doing well emotionally at home. Since they had been through this sudden unexplained Mommy absence with Aidan's birth, they knew this was not good. They cried on the phone when I talked to them. Aidan cried. I cried. I couldn't even talk to them because I was crying so hard because I missed them and was sorry I had messed them up again with my leaving. 


My poor doctor could tell I was losing my positive spirit. My water had broken in trickles, I was tired, I was worried about my boys, worried about my baby, wondering what our outcome would be. Finally at a day under 33 weeks, the doctor recommended an amniocentesis to see whether the baby's lungs had developed well enough for her to be born, or if we needed to hold labor off longer if possible. That was not a fun experience but I hoped it would give us an answer as to our future, our plan. The results showed that our baby was ready to breathe air on her own. I was headed for another C-section.


Ben and Jonah with baby Ella
As I was getting prepped for the surgery, my contractions started full-force. I was having this baby today, one way or another! Everything started out routinely. I had Alex's eyes above me. I had the doctor pushing and pulling at me. Then things started to go a little crazy. They couldn't get Ella out. She was stuck down the birth canal, like Benjamin had been 7 years earlier. They had to call in two more doctors to try and dislodge our baby's tiny body and push her through the C-section. I found out later it normally takes 45 minutes to complete a C-section, and mine took 2 hours. I lost a lot of blood. When the doctors finally got little Ella out, she didn't respond. This was the only time during all our babies' births that I saw fear in Alex's eyes above his mask. Seeing that struck a chord of terror in my heart. Ella was on the little table in the side of the room. There was a team working on her. And the room was silent even with all those extra doctors and nurses. Absolute silence. We all waited and held our breath with Ella. The tears were rolling down the side of my face. 


Finally Ella let out the most beautiful cry I've ever heard, and the room erupted in cheers and clapping. I have never been so relieved to hear a baby cry in my whole life. Our baby was alive. Ella was born on July 23, 2009. She weighed 4 lbs 3 oz. She looked enormous to me, since she weighed what Jonah and Ben weighed combined at birth! And she was beautiful. 


My body, on the other hand, didn't handle the surgery as well as Ella's did. As I waited in the recovery room to have my body return to a state of normal, my body had other ideas. It started to shut down. I had lost so much blood, I felt weak and sick, and like I might be really taking a terrible turn. My kidneys shut down. I should have been in the recovery room for about 2 hours, but six hours later, the doctors finally got my body to stabilize. Alex had not called our parents since the surgery had begun, and they were all understandably worried. Once I was back in my hospital room, Alex made a round of calls to tell everyone both mama and baby were finally ok. Relief.


Ella was so beautiful. She was sweet and a little chubbier than her brothers had been at birth. She was jaundiced, she needed to grow and learn how to suck and swallow, but she was healthy otherwise. The hole in her heart that she had had before birth had closed on its own. She stayed in the NICU for 2 weeks before finally being allowed to come home to all of us who anxiously awaited her presence. I split my time between the NICU and being home for the boys as best I could. Again, my brain was on overload, wondering how in the world I was going to be able to take care of three boys with different, intense needs, and a newborn. What if I had forgotten how to take care of a baby? What if I couldn't take care of four kids? 


Those moments of doubt were put to rest the more we got into the swing of our routine. Ella came home during the weekend we were celebrating Jonah and Ben's birthday, so our family was here to welcome her. She did not have to drag an apnea monitor wherever she went, so we felt lucky. She was sweet and mellow and so very snuggly and delicious. The boys were overjoyed to have a baby sister. I felt so incredibly blessed to have another baby, another one I had longed for and hoped for. I revelled in the moments of one-on-one time. I cherished watching the boys fall in love with their sister.
Photo by Only Just a Moment
"Ella" means 'fairy princess' and also 'complete'. She has completed our family in more ways than we ever thought possible. She was the answer to my prayers, and just like my three boys, a gift from God. I will be forever grateful for the doctors who made Ella's life possible. They brought a precious little girl into our family, and we are so happy to have her gentle spirit in our presence. God filled me with peace that Sunday in November. I trusted that peace throughout my pregnancy. I still have faith in the fact that some things have to be left up to God, and that I was given these four beautiful children for a reason. Even if I don't always know what that reason is.
Aidan, Ben, Jonah, and Ella
October 2009

Mother's Day Tea

It's crazy to me how and when Grief hits me over having kids with special needs. It happens when I least expect it. Today was Aidan's Kindergarten Mother's Day Tea. The invitations for the Tea came home about two weeks ago, so all the moms could save the date, get babysitters for younger kids, etc. Aidan came home the day of the invitations and declared that Daddy was coming to his class on May 11! I gently said, Um, I think that I'm supposed to come to your class that day for the Mother's Day Tea. He said no, he got to invite anyone he wanted and he decided to invite Daddy. He was adamant that this is the way the Tea was going to go down. I know Aidan well enough to know when not to push, but my Mommy Heart felt a little low that day because it's sometimes difficult for me to connect with Aidan and easy for Alex, and sometimes I selfishly want Aidan to want me instead of Daddy. I want him to be excited that I would be coming to school to visit him. But I tried to just understand the whole thing from Aidan's perspective and not be disappointed. 


As the two weeks wore on, I worked on Aidan and the Tea issue. I asked him if Daddy couldn't come to the Tea, would it be ok if I came instead? He finally agreed that yes, that would be tolerable. Then yesterday he was excited that I was coming to school to see what he and his classmates had been working on so hard for so many weeks. 


I got dressed up, like a real person- not a tired stay-home-mom. I remember when Jonah and Ben did this Tea in their Kindergarten class, it was a big deal. A dress up deal. Today I even wore earrings and perfume!! Grandma Margaret came to babysit Ella. I was ready. I had my big camera and my video camera and my kleenex, because I remembered that this is a sweet Tea with many Kodak Moments.


I got to Aidan's classroom and he was sitting on the carpet in the middle of 30 other classmates, and he was thrilled to see me. He was beaming that I was there, and my Mommy Heart was so happy. I was happy that I meant something to him, that he was glad I had shown up to be with him. I was so excited. I found my assigned seat and looked for Aidan to wave at him again. I saw he was upset and about to cry. I thought great, here we go...


Aidan ran through his classmates to me. He asked if there was any blood on the bottom of his lip, because it was hurting like crazy. I said no, it's a little red from where you've been squeezing it for the last 20 minutes, but there's no owie there. He was hysterical, crying that his lip hurt so bad. I tried everything I could think of to help him calm down and sit back down with his classmates who were proudly about to start their presentation for their moms. Aidan was not able to calm down and he was not about to participate in the presentation. 


At home when Aidan gets these hurt spots on his body, I've come up with two magic remedies: either a bandaid or a folded, damp paper towel will always fix the owie. I didn't have a bandaid. I didn't have a paper towel. I felt all the other moms' eyes on Aidan and me. I folded up a kleenex, got it wet in the little person-sized bathroom in the classroom, and Aidan applied it to his owie that I couldn't see. Crisis averted. He stopped screaming his head off. But he would not go sing with his friends. He refused to be part of the class and say the poems he had learned to pay homage to the mommies. 
Aidan showing me the jar of caterpillars-turned-chrysalis 
Aidan's teacher asked if he would come and sing with them. He said no. She shrugged and said ok, and I was grateful that she didn't make a big deal about it. Aidan sat on my lap, holding his damp kleenex to his lip, as we watched 30 other 6 year-olds sing and recite poetry to their mommies. I don't know why I was at the point of tears. It's really so not a big deal. My brain knows it is really nothing in the grand scheme of life. Who cares if my kid doesn't sing his at his Mother's Day Tea? Well, apparently I do. It's purely selfish and stupid, but I was so disappointed in the situation, though not in Aidan. 


I just love sappy things like this Tea, and I love watching my kids no matter if they stand in the back and softly mouth the words to the songs like Ben and Jonah did for their Tea or only know half of the sign language for the poetry they recite. I just love to have my kids be a part of these special, normal things that you do at school. I'm the loudest clapper at recitals, I occasionally let out a "WOOHOO!!" in situations where clapping alone is expected. I give standing ovations to my boys dressed in crazy costumes in the school play, even if they never spoke a word. I am that mom. Annoying, I know, but I can't help myself. I'm bursting at the seams with pride for everything my kids have become, after the tough starts they have all had. And when I see them doing things I could only dream of years ago, I just can't contain my happiness for them.


So I sat with Aidan on my lap, watching the other moms bursting with pride for their kids. And I felt so bummed that this is my life. I know it's incredibly petty. But I'm human. I felt so bummed that only my kid was on my lap. My brain understood the circumstances. I understood that Aidan was overwhelmed with the situation, that his sensitive little body can't handle even a hangnail without totally flipping out. I get it. But sometimes I just want to have the kid who stood in the front of the Kindergarten carpet today singing from the bottom of her soul to her mom. Or even the kid who stood in back and needed an Aide to keep him on task. At least he was on the carpet, singing to his mom the best he could! Sometimes I get tired of understanding so well the needs of my kids. I just want to stand up and have my own little tantrum and demand that my kids just do what I want them to do, what I hope they will do. I don't want to understand their special needs. I don't feel like being patient and calm. Sometimes I just want my kids to be like other kids. I don't have these feelings often, and they always come at moments when I least expect them. It's funny how they catch me off guard. I'll be going along just fine in my little Special Needs Life, everything under control, I feel like I'm in a place of grace and understanding where my kids are concerned, and then WHAM. It hits me. The grief of having a child who has special needs. The grief of having a child who isn't capable of doing what other kids his age are doing. The grief doesn't hang around and drag me down indefinitely, but it does hit with a vengeance sometimes. For instance during little moments like a Mother's Day Tea.
Painting tea cups
All day I've been trying to not let this weigh me down. The rest of the Tea was enchanting, and Aidan was delightful. We had the best time, he and I. We ate lovely snacks together. We went to the library with the class and Aidan read books to me that he has written and illustrated this Spring. Then we painted sweet little tea cups for each other that will be fired at the ceramics store and we can actually use for tea! Aidan was "on" the rest of the morning. I had such good time talking with him as we painted, joking with him while we snacked, taking his picture while he hugged his teacher. He is such a sweet little boy. I love him to pieces. 
Whenever the Grief hits me, I let myself feel it, but choose to focus mostly on the amazing positive moments with my kids instead of the tough ones. Sometimes I'm better at this than others. Sometimes it hits me hard at the craziest times and I have to accept the fact that my kids will always be "special" in their own ways, and that's just the way it is. When I can prepare myself for a situation that could be a land mine for my kids who have sensory issues, like going to a fireworks display or parade, I'm much better at handling life. Grief doesn't get me then. I'm prepared. But you can't always prepare yourself for every situation that might bring those "special needs" into play. I was blindsided by the fact that even a Kindergarten Tea could send Aidan into a spiral, making him unable to handle the day. And when I'm blindsided, Grief takes a little longer to dissipate. But I'll get there. And while I trudge along the path out of Moping Land, I will choose to remember the sweet, enchanting moments with Aidan today as he celebrated having me for his mom. We were both very content and happy to be together this morning, chatting and painting and quietly loving each other. I am a lucky mama to have that little boy who sat on my lap this morning.






Aidan's Birth Day

Aidan Mikal was born on November 27, 2005. He was 7 weeks early, and weighed 3 lbs 11 oz. We had just celebrated Thanksgiving with my family at Mom and Dad's house. I wore a funky sweater that stretched over my big belly. How I love a big belly full of baby! I felt very cute, and very thankful that I was still pregnant, since my first pregnancy had ended at 29 weeks. The doctors had assured me that my preterm delivery with our twins was a fluke, and that this pregnancy would be fine and full term. We went home after a great turkey dinner, counting our many blessings.
The next day, Alex and I decided to putz around the house, clean up, rest up. Suddenly I felt some cramps and had some bleeding. My heart sank. I just knew where this was headed. My regular OB was not on call because of the Thanksgiving holiday, but I called the OB who was covering for her. She said we needed to get to the hospital right away to check and make sure everything was ok. Luckily, the hospital was two blocks away, something that had come in very handy during the years we lived in that sweet old house. 


Jonah and Ben were just 3 years old. I saw in their eyes that they understood something bad was happening, and they were desperate because Mommy was leaving suddenly. They had extreme separation anxiety and anytime I went anywhere, even the bathroom, it was major trauma to the boys. So I was scared to death for my new baby, and so sad for my older boys who I had to hurt by leaving suddenly and unexpectedly in order to help the new little baby. There was no time to explain to the boys what was happening, or prepare them.


We left the boys with grandparents and went to the hospital. I was checked in and after my initial exam was given fluids to stop the contractions and drugs to speed up Aidan's lung development in case of early labor. I was so torn emotionally. I was in disbelief and terror that this was happening to me again, and yet I had been on this roller coaster before and knew what to expect. It almost felt like not such a big deal, because Jonah and Ben had been born so much earlier than 33 weeks, it felt like a gift to be this pregnant.
I was still bleeding and wasn't allowed to move except to go to the bathroom. My mom came and sat with me and knitted a prayer blanket for our new little baby. She had to hurry, because he was fast on his way! Alex tried to stay with me as much as possible and be home with Jonah and Ben and reassure them that everything was ok and Mommy and Daddy hadn't abandoned them. It was a tricky balance. I desperately wanted Alex by my side, to comfort me and face this terrible ordeal with me. He is my strength and I knew I needed it during those hours. But I knew our little boys at home needed Daddy's strength too. More than I did. So I let him go.
Alex went home at one point and was going to have Ben and Jonah come back with him to see me, because I had been at the hospital for a couple days and they were missing me. The doctor came to check on me while he was gone. My bleeding had slowed a lot over the past day, but suddenly picked up again. The doctor was trying to decide what to do. She had talked with me about a VBAC, and I was all for it. Aidan was going to be small, so the risks were fewer than if he was a big baby. Suddenly, Aidan's little body went into distress. It kept happening, where his heart rate would decrease. We would find out later that the umbilical cord was wrapped around his shoulder. 


The doctor said she wasn't sure what to do. (This was not the same doctor who delivered Jonah and Ben, and not one that specialized in high- risk pregnancies since we didn't have any reason to believe I was high risk). I looked at the doctor, who was about my age, completely appalled. I could not believe she would say those words to me, even if she had thought them! I completely lost all confidence in her. I said to her "Listen, I've been down this path before. I know that you need to do an emergency C-section right now!!" Especially since our new little baby's heart rate kept decreasing.
The doctor agreed with my 'clinical assessment' of my situation, and decided that was what we should do. Mom called Alex to tell him not to bring the boys to see me, but to come back right now because I was having a C-section. Once again, I was wheeled to the OR. Once again, waiting to see Alex's blue eyes above a mask come to hover over my head. Reassuring me that no matter what, we'd be ok. 


Aidan was born at 11:11, on 11/27, weighing 3 lbs 11 oz. 11 is our lucky number, I'm pretty sure. Since Alex and I were first dating, we'd say "Oh, it's 11:11! Make a wish!" Our wish certainly came true that day. Sweet, feisty little Aidan made his entrance into the world and we've never been the same. He didn't need a ventilator, the drugs had helped his lungs develop quickly. Aidan was in good health, just very very small. He needed to stay in the NICU for 3 weeks to grow and learn things like how to drink from a bottle. I was in disbelief that this had happened to us again, and that again I had to leave the hospital without my baby. Again my arms were empty as I was wheeled to the exit and Alex drove our car up to get me. Again.
Suddenly I was thrown right into the middle of having Mommy Guilt. I couldn't spend every waking moment of the day with Aidan at the NICU like I had when the twins were born, because Ben and Jonah were home and needed me too. Aidan had nurses to take care of him, that's true, but in my humble opinion there's no one as good for a baby as his mama. It was so difficult to be at home with the big boys, knowing that Aidan was two blocks away, alone in his incubator. Or to be at the NICU snuggling with Aidan while knowing that my three-year-olds were at home missing me. I wondered what the trauma of all this chaos was going to do to all three of my boys.
Aidan finally came home after 3 weeks. He had an apnea monitor like Jonah and Ben had had. Everything with our NICU experience with Aidan was a little bit fuzzy around the edges. Yes, we were scared he would have problems long-term. Yes, there were beeps and heart dips and breathing halts, but it didn't seem as Crisis Mode as it had when Jonah and Ben were born. Aidan seemed huge compared to his brothers when they were born so impossibly small. Had Aidan been our only preemie, I'm sure it would have all seemed much more terrifying. But for good or bad, we had been down this road before. I knew all the questions to ask. I knew what tests would be done. I knew what signs of trouble to watch for. We had to get trained on the apnea monitor before Aidan came home, but we knew all that too. Been there, done that. 
When I finally left the hospital with my third little boy, I felt nervous and fulfilled all at the same time. Worried about how I was going to care for my two older boys, with their therapies and doctor appointments and challenging needs, and now my new baby, with all his baby needs, his apnea monitor, his doctors appointments...every time I have had a new baby, my brain feels totally overwhelmed with the magnitude of what has just happened. What I will have to remember to bring places for another whole person. How I cannot forget to bring the new person, himself. How I have to get three kids in car seats, two of whom flip out if they're away from me for a second- and one infant. How any time a stranger even looks at my three-year-olds, they melt into a big pile of mush because they're sensory and nervous systems are still so bonkers. How in the world will I do this, I wonder.
Ben, Aidan, Jonah
When we brought Aidan home from the hospital, Ben and Jonah were not in the least impressed. They had seen their new baby through the window of the NICU, but weren't allowed to go in and be with Aidan. I don't think the whole reality of the new baby situation had set in for the big boys. When Aidan was carried into our home, sleeping in his carseat, they looked at him from afar but were scared to go closer. My mom and dad had been watching the boys while we picked Aidan up. Dad loves the story of how Jonah had told him before we arrived that Jonah was NOT going to say hi to the new baby. After Aidan had been home for a little while, Jonah came up to Papu (Dad) and whispered "I said hi to Aidan!" Dad chuckles with joy every time he tells that story. 


Eventually, Ben cautiously got closer to where Aidan was, still in his car seat sleeping. After studying his little brother, he turned to me and declared "I think we should bring Aidan back to the hospital to live with his nurses now." Hm, if only all our problems were that easy to fix, Ben. 
Ben, Alex, Aidan, me, Jonah
I remember sitting in a chair, in pain from my C-section, in tears because I was so overwhelmed with the daunting task of being a mama to these three little boys. Somehow, we got the hang of it. I figured out how to push the twins in the double stroller and pull Aidan in his carseat in the grocery cart, all at the same time. I figured out how to get three kids to bed without Daddy being home. I found ways to balance our therapy and doctor's appointments, with three boys in tow. It slowly became our new "normal", and I cherished each moment of being a mama to new little Aidan. I would hold him in my arms, feeding him his bottle and rocking him, and feel so blessed that I had the privilege of loving this little baby. That I had the chance to hold a baby while I fed him, instead of having to feed twins who sat in carseats, a bottle in each of my hands. I realized this is what it is like to just have one baby at a time, and as many things as I loved about having infant twins, it was an experience I truly enjoyed- having just Aidan to hold and snuggle and love.
"Aidan" means 'little fire'. When I was pregnant with him, I could already tell he was a fiery little guy. He would roll and kick and do summersaults. He would do jumping jacks and cartwheels. When he was born, he grew and thrived and got stronger, and we knew we had given him the name that was meant for him. He is a little fire, from the top of his spiky hair to the soles of his sensitive feet. Our little Aidan couldn't wait to enter the world, and we've been so blessed ever since to have him in our lives.

Tuesday, May 8, 2012

Tic Tales

Jonah, Aidan, Ben
2006
Four out of the six of us in our family have tics. We talk openly about our tics, what they are, why we might have them, etc. We talk about people's differences and similarities. We stress how important it is to respect other people, no matter what they look like, how they talk, whether they different from us or alike. The kids all know that Daddy, Jonah, Benjamin, and Aidan have tics. We've created a safe, honest environment in our family in which our "special" needs are special, and yet normal in the context of our home. Sometimes it's been funny to see how comfortable the kids are with their diagnoses.


Once when Jonah was about 8 years old, he had a friend over. They were sitting on the couch, playing around with some toys.  Jonah had a couple tics at the time, like blinking and making tiny grunting noises. His friend finally turned to him and asked why he was doing those things, grunting and blinking so much. Jonah exclaimed nonchalantly "It's my tic!" and continued playing. I watched from the kitchen to see what would happen, if the friend would need more explanation than Jonah had given, how Jonah would handle the situation...but Jonah's explanation of his tics apparently satisfied his friend and they just continued to play. 
Ben
2005


I was in awe of Jonah and his ability to be honest and confident in dealing with his friend. I don't think Jonah saw his tics as a big deal, and since he didn't, his friend let it go too and accepted Jonah for who he was at that moment. There are so many times I think we can learn so much from our innocent children.


Another time about a year ago, we attempted having a puppy as a family pet to see how it would go. We were hoping the dog would have a calming effect on the kids, like a therapy dog. Apparently therapy dogs have to be trained, they're not just born that way. Go figure. Long story short, the dog didn't work for our family because of everyone's intense needs. It wasn't the dog's fault though, she was lovely. We found her a wonderful home where she is deeply loved, so it all worked out ok. 


The whole family went to pick up the puppy and bring her home for the first time. As I held her on the way home in the front seat and stroked her fuzzy fur, I found a little tic on her neck. I said to Alex "She already has a tick!" From the far back seat of our van, I hear Ben's little voice pipe up "REALLY?? What's HER tic??" It took me a second to figure out what he was talking about, and that he thought our new dog had a tic disorder like all the rest of the boys in our family! Alex and I laughed so hard we almost peed in our pants. I explained that no, our little puppy didn't have a tic like a twitch, instead she had a tick like a little blood-sucking animal that has to be removed! It was so funny. 


Aidan 2009
This year in fourth grade, Jonah has a classmate who also has Tourette Syndrome. One time recently Jonah said that the boy was chatting with Jonah and said he had Tourette's, and asked if Jonah knew what that was. Jonah got so excited and said yes! That he had it too! So they compared tics, and talked about their similarities. Jonah was so excited when he came home from school and told me the story. He was happy to identify with someone else who had tics, and happy to have something in common with a classmate, not just all the boys in our family. Now I get a weekly report on what the classmate's tics are compared with Jonah's. Jonah acts out the other boy's tics and then talks about his own tics in comparison. It's a cool thing to find a friend who happens to have so many things in common with you! At any age.
Jonah and Benjamin
2005

My boys have shown me that being different is ultimately ok. Everyone is different. And as much as I reinforce this fact and pound into my kids' heads that we should be tolerant of everyone in the world, my kids have really taught me how to walk the walk. None of them have tremendously visible special needs, so when people do notice that there is something "different" about our family, in the past it sometimes has shocked me for a split second before I react. But my kids don't miss a beat. They explain what their diagnosis is. They help friends understand what makes them different. And what makes them so very special. If only we were all as accepting and sensitive to others as my kids and their friends are. The world would be an even better place to live.
Jonah
2005