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Thursday, August 29, 2013

Big Boy Hangers

So much happened last week! We packed into three days about a month's worth of activities. Ella went to her first Cheer class! She was beyond thrilled. She says when she grows up she wants to be a "pom pom girl and a massager." Can't go wrong with that! 
 Then I took the kids to Apple Holler to have one last summer outing before school starts. We had a great time, even though it was sweltering. We climbed in an wagon and got a ride out to the apple orchard where we picked about 200 unripe apples. (We were there for the experience, not necessarily ripe apples) I couldn't get the kids to leave! We had a snack, played around, looked at the farm animals. It was really a nice afternoon.

Tuesday we had therapies in the morning, followed by a psychiatrist appointment for Ben and Aidan. We talked about how Aidan has taken the summer off ADHD meds, and although he displays a lot of ADHD behavior, we made it through the summer pretty well. We increased his anti-anxiety med at the beginning of the summer, which has helped him a little bit in dealing with all his worries, but it has also made him a little less inhibited when out in public. Like he doesn't worry about running away from us in a crowded mall all the way to a store where he wanted to buy a toy. Eek. So some of the effects have not been exactly positive. 
Aidan started the same ADHD med that Ben takes. What was really interesting was that the psychiatrist showed me the chart of different meds and said that basically our boys are the minority because most ADHD meds do not work for them, or cause very bad side effects. I asked if you were a "normal" kid, not in the minority, if you took a medicine to help with your ADHD, would it be like flipping a switch and all of a sudden you would just be more focused, clearer, more in control? Would there be a night and day difference? 
The doctor said yes. If you react typically to ADHD meds, that is what happens. I told him that boggles my mind! Because that has not happened for us, ever, with any of the boys. The doctor said then that leads us to question their diagnosis and whether or not they actually have ADHD, or maybe they do have ADHD and are just extremely sensitive to medication and tend to have negative reactions to most medications. Who knows. Either way, it's difficult to treat our boys with medication because we have to try so many different kinds and most of them don't work. We always implement behavioral strategies too, and the boys get counseling of their own to work on strategies themselves. But we have needed a medicine component also in order to be more successful in treating our boys' diagnoses.
On Wednesday, Ben had to have a cardiology checkup to see what the results of his month of wearing a heart monitor showed. He had an EKG and an echocardiogram also. The cardiologist said Ben's valves are a little stickier than they were last year, but that doesn't really affect anything at this point. Everything else is the same as last year, so that is a good thing. It also tells us that Ben is really having panic attacks and these "spells" are not related to his heart defect. I explained to the cardiologist, in front of Ben, in Ben Speak, what Ben's fears are regarding whether he is having heart attacks and whether his heart defect is killing him. The cardiologist was awesome, as he has been for the past 11 years in dealing with our boys. He told Ben that his heart defect is not killing him and he is not having heart attacks. He may never need anything done to fix his heart. If he does need fixing, they may be able to work on his heart without doing open heart surgery. So the doctor put some of Ben's fears at ease. I appreciated that, especially right before we launched into the new adventure of middle school, which if anything could produce a panic attack, that would.

Ben and Jonah got to go to their new school, get their schedules, unpack their lockers, and find their classrooms. Aidan got to go to his school and do the same thing. He was so joyous about getting the 2nd grade teacher that Jonah had! I had hoped the exuberance would last a while, but it was gone on School Day #3. From the moment Aidan wakes up many mornings, he has some difficult behavior. I asked him what the problem was. He said he didn't want to go to school. When he hangs back from getting on the bus, looking apprehensive and reluctant, I take his little hand and lead him onto the bus steps. I am sure he is fine from that point on. Here we go again, with another year of school angst.

Meanwhile, Ella has been having more (normal) tantrums- trying to express her independence and being dismayed when it isn't possible to get her way. I know these are age-appropriate and not due to mental health issues or diagnoses of any kind, which is reassuring. But frustrating and tiring none the less. No one is sleeping well, I think due to worries about our new school year. And the thing that really sticks out to me is how mental illness (or any other diagnosis for that matter) doesn't take a vacation day. Is it your birthday? Bipolar doesn't care. Is it the first day of school? Depression doesn't care. Are you trying to have a nice family dinner to talk about the first day of school? Bipolar-induced rages just don't give a hoot. And usually, all the diagnoses that reside in our house become more pronounced because of the stress that is involved in anything out of the ordinary. So if it's someone's birthday in our house, the excitement and sensory input is even higher than normal, which leads to more exaggerated anger and frustration. If you're trying to sit and have a nice dinner with nice conversation about the first day of school, the anxiety the boys all feel about it plus being exhausted from holding in tics and worry and anger and sensory overload all day explodes in a mushroom cloud and there is no conversation at all. Only fighting. It does get exhausting. Why can't diagnoses just take a day off once in a while? Maybe once a month, just be on vacation so we can have a nice calm normal day? 
One big milestone: I gave into the constant battle with Ben and Jonah's shirts and bought big boy hangers. I've been fighting Jonah and Ben's shirts for the last size and a half, trying to manipulate the shirts into staying on little-person hangers. I finally gave in. I bought grown up hangers. How is it that my boys are so big? This is something that they should write about in all those parenting books- someday you will have to buy your little babies big kid hangers, and it will be traumatic and make you tear up at Target as you put the big white hangers into your cart. No more powder blue little person hangers. Now, granted, putting the boys' clothes away is much easier since the shirts actually stay on the hangers when put there! But it was a little sad for me when I had to make this purchase. I never thought about how there would come a day when I'd be buying big boy hangers. 
One foot in front of the other. In the next couple weeks we have a mountain to climb. Ella will start preschool. Before that can happen I have 2 meetings at her school. Therapies continue for all the kids, but at our school year times, which means we have to find a way to juggle homework too. Ben and Jonah are going to start going to our youth group meetings at church, which of course happen to meet the same evening that we have all our therapies scheduled, so we have to do some major rescheduling. Jonah and Ben have IEP meetings! I'm anxious about that, worried they won't qualify for the services I know they need. Aidan is in a defiant, anxious phase. Ella is in her normal, "independent" 4 year old phase. Ben is more angry than usual. Jonah is more reactive than usual. 


Sometimes life just feels like a mountain. One foot in front of the other. I told Alex the other night- we only have to get Jonah and Ben through six more years of school. He just about passed out at the thought of all the work ahead of us.

Middle school schedules, big boy hangers...what will come our way next?
Middle School Schedules!!

Thursday, August 15, 2013

Fill My Yard With Bikes

Today was the epitome of a kid's greatest summer day. We didn't have any therapies (shocker, I know), and no plans, so we spent the day at home. The kids had a bunch of friends come over to play, and they were busy and happy all day long. There were what seemed like dozens of bikes tossed in our yard as neighbor friends came running to play. There were quite possibly hundreds of shoes strewn in our entryway. There were laughing, joyful screeches coming from our yard all day. Kids- in and out- upstairs and down- on walks to the forest preserve and treks to neighbors' houses- all day long. It was wonderful.

It's funny to see Jonah and Ben with their friends now. They're all so old, and they've known each other for 7 years. When we moved here, they were all teeny little almost-kindergartners. This year they will all begin middle school together. When the kids come over and hang out here, it's amazing just how much space they take up, compared to when Ella's little friends play here! How did these kids get so big? Ben and Jonah will take their friends to the backyard to lounge on the hammock or to the basement to play. And it feels like I have a house full of teenagers! I don't know how that happened! They were all just babies! I'll check in on the kids to make sure all is well and everyone is doing ok (and behaving), and the boys get their grownup voices on and say "Uh, yeah Mom, we're FINE."

Today as I listened to the sounds of happy kids, I felt so wonderful knowing that each of my kids has good friends. We have a life full of support and love and good friends. Despite so many challenges and difficult moments, my kids are still liked by their peers and loved by their friends. Neighbor parents could easily say they don't want their children playing with ours because of some "special need issues" that are inappropriate in normal life- things like one of my kids yelling swear words at a friend when he's angry. But the parents of the boys' friends understand that our boys have good, kind hearts, and sometimes their special needy brains just go "wacky," as Ben says. That's not the TRUE them, and the people who are closest to us know that. 

Today I was grateful for the sounds of summer fun coming through all my windows and filling our home with childhood happiness. Social skills are something that so many kids who have special needs struggle with, and so it makes today even more meaningful to know that my kids were able to just hang out with friends from morning until night, using appropriate social skills all day long. We didn't have any fights, or swearing, or yelling, or arguments about whose turn it was for the computer. It was just a day like summer days should be, and I don't take that for granted. Thank you, to my children's friends, for being kind and understanding to my children. You all hold a very very special place in my heart.

So come on over, sweet friends. Fill my kitchen up with growing bodies looking for food in every crevice. Fill my basement with hooting laughter. Fill my yard with bikes and my entryway with shoes. Fill my driveway with chalk-drawn monsters. Fill my hammock with stories. Fill my bathroom with forgotten Barbies. Fill my children's hearts with camaraderie and youthful, careless bliss. Fill our summer days with joy. You are loved and appreciated.

Special Birthdays

On July 23rd, my littlest baby turned 4 years old. I don't know where the past four years went. I am so grateful to have lived these past four years beside my daughter, being touched by her soul of pure light every day. Her Birth Day was a scary one, as were all our kids'. It's incredible to think how far we have all come in the years since those terrifying Birth Days. For Ella's birthday, she had her first big girl party, where she got to paint ceramics with her friends. She was beyond thrilled. It was so much fun to watch her with her friends, her balloons and cake, laughing like the happiest girl in the world.

On August 11, Jonah and Ben turned 11. We had a birthday party for them and their friends. They got to play paintball, win tickets and prizes at an arcade, have pizza and cake with friends. Just like normal kids. Love it. 11 years ago right now, I was going through the most horrible, frightening experience of my life, knowing that my fragile little babies would be born soon and they were too little to be outside of their safe little Mommy Cocoon. That day, and for many afterwards, we didn't know what would happen to them. We couldn't predict how their brains, eyes, ears, muscles, livers, any part of them would develop. We are truly blessed. Times four.

When Aidan, and now Ella, turned four, part of me was filled with dread. Four years old was the age when our already-fragile world began to fall apart even more. It is the age when Ben's struggles intensified. So every time another child turns 4 years old, I worry that that same thing will fatefully happen this year to this child- that they will begin to show signs of deep, desperate trouble. Each time I have a four-year-old, I hold my breath for the year I have a four-year-old.

"4" and "11" sound so old, so different from previous ages. It sounds like we don't have a toddler girl and little boys anymore. It's exciting to think of the adventures and changes that are coming our way with each new age and stage, but it's also sad for Mama to feel the littleness of each child slip away. Tonight we were out driving to get ice cream. Ella laughed a huge belly laugh because she saw a semi-truck without its trailer attached. She said it was so funny because she "saw a truck with just a head!" Things like that I will miss as all my kiddos grow up. Their innocence, their discovery of amazing life in every day. 

I know that each age holds a 'specialness', and it's a gift to be able to watch my children grown and make their way through life. I am so grateful that my children are here, beside me, every day. I am lucky to be able to share their lives with them, and that blessing is always most palpable and present on their birthdays.

Tuesday, August 6, 2013

Pockets of Fun

Today after our morning of therapies, the kids were bored. First we did shaving cream on the table, but that didn't last too long. The dog got to eat most of it that was splattered onto the floor by my energetic children. 
Ben went onto my Pinterest account and looked up fun crafts I had logged for just such a boring day. He decided we should make sock bubbles. It was a blast! And super easy. We added food coloring to the bubbles, which looked pretty but was permanently messy. And it made Ella's feet change all colors of the rainbow. We called her "Christmas Feet" for the rest of the day. 

Little Miss Christmas Feet
When I talk to my kids and really want them to pay attention, I preface what I'm about to say with "Look at Mommy." I say "Look at Mommy" a lot. Last night I was trying to talk to Alex, and the kids were being crazy. The house was loud and Alex was distracted. In the middle of all the chaos, I was exasperated because I was trying to get Alex's attention, so without thinking, out of my mouth came "Alex, look at Mommy!" I laughed so hard. It just tickled my funny bone. 

 Ben and Jonah had their 11 year checkups at our pediatrician today. They were supposed to get shots, so on the way to the doctor we were talking about what to expect. Aidan asked if they were getting "fruit loop shots." Jonah laughed and said "No, you mean the FLU shot." Sometimes having a challenge with word retrieval is hilarious.
Where did those bubbles go?

 Today I was talking to a friend of mine and she said her family had had "pockets of fun" on a recent trip. I love that! That completely describes family life, I think. At least our family life. We have pockets of fun that punctuate the difficult times we frequently face. It makes you cherish those pockets even more because sometimes they feel pretty infrequent. It's like being on a diet but you're allowed one dessert a day. That dessert tastes pretty awesome, and you savor every bite. I savor every pocket of fun with my kids, because sometimes they're too fleeting.
 Today we had several pockets of fun. My pockets are full enough tonight to carry me into whatever we'll face tomorrow.

Monday, August 5, 2013

No Ordinary Weekend

From the outside, this past weekend may have seemed like most family's weekends. Aidan was supposed to go to a birthday party for a friend. Alex and Ben were supposed to go to karate. We decided to take the kids to see a movie. No biggie. Just a fun, normal, family Saturday.

If you look at it from my perspective, it was a weekend full of opportunities to practice life skills. 

I knew Aidan would be anxious about going to a party by himself. So I worded the morning very carefully, because if you say even one thing wrong it can set off my little guy's anxiety radar. The party was for a friend Aidan has known for 2 years, at the boy's house, in our neighborhood. All good things- nothing too new and scary. It was a "water" themed party- squirt guns, a baby pool for messing around in, a sprinkler. Sometimes water play and Aidan don't mix, so this was another hurdle I knew he would have to cross that could cause problems. I also knew Aidan would prefer Alex or me to stay with him at the party, but it just wasn't possible this time. 

We signed our card and off to the party we went. Aidan was beyond thrilled to see his buddies. He happily scampered off to play in the backyard, without even a goodbye. That's how you have to handle Aidan- you let him lead. If he wants to say goodbye and give you a hug, fabulous. If not, you have to be ok with that. I learned that in preschool when I wanted to give my tiny sweetie a hug goodbye. If I forced it when he was fine just running off into his day, it would cause an unecessary meltdown. So if he doesn't need a goodbye, I've learned I don't either.

Meanwhile, Ben had had a pretty rough night. Since his panic attacks started two weeks ago, there are nights that are filled with nightmares and anxiety for Ben. Some nights are just bad and none of us get very much sleep. I ended up, after hours of back and forth with Ben to his bed, just crashing on his floor with a pillow. I woke up two hours later with carpet imprint from head to toe on my whole left side. That hurt a bit. But at least Ben was able to sleep from that point on. 

Alex had to wake Ben up for karate in morning, but because he had been up for so much of the night, he just didn't have the energy to go. So he schmupped around in his pj's until after lunch. Poor guy. We finally have gotten his heart monitor fixed. It kept beeping, so the company that monitors the monitors called and said Ben had a faulty wire. We had a new wire shipped out. When that didn't fix the problem, the company said Ben had a faulty monitor. So he was without his monitor for almost a week. Which made him very happy, but made Mama a little worried. So now we have him all plugged in and working correctly. Whew. A few more weeks of that and we'll see what his cardiologist has to say about the results. The panic attacks keep coming, but fewer and more mild, so that's good.
Alex went to karate alone. I had the three non-party-going kids at home. There was a quiet moment, so I had the audacity to pick up the phone and call my parents. Ha. Child Phone Radar went off across the land, as usual. Ella started wailing about stubbing her toe. Jonah yelled from another room over and over with a question he impatiently needed answered NOW. Ben wondered quite loudly if we were actually going to see a movie today. And then, the icing: the mom from the party where Aidan was called to say that he wanted to come home. 

Aha, now I remember why I never attempt to make phone calls!

I talked to Aidan, who was near tears, on the phone and asked him what was wrong. He said he wanted to be done. I zipped over to get Aidan. After he knew I was coming to get him, he was able to relax and have a few more minutes of fun while he waited for me. I had figured he would have some anxiety about being at the party and want to leave early, so this didn't surprise me. I celebrated the fact that he had been able to stay at the party without me at all, and for a whole 54 minutes! This was a success! I apologized to the parents of the birthday boy, but they were fine with Aidan leaving early and understood. Later Alex asked Aidan why he had wanted to leave the party early. He responded that he didn't want to be wet today. There you go. I was happy that Aidan tried to go to the party alone, and was able to handle it for any length of time. 

I had a secret motive for wanting to see a movie with the kids today. Since Ben had a major panic attack at the movie theater a couple weeks ago that led to me taking him to the ER, he hasn't wanted to see a movie again. Ever, he said. I keep talking to him about how you can't let your anxiety rule your life, and you have to be brave and face life head on even if you're scared. Because most of the time that will lead you to incredible experiences and discoveries and joy. So I wasn't about to let Ben never go to a theater again. (Thank goodness I have a major in psychology and a Master's in social work! I was all set to go mental health on his fanny.) 

I wasn't sure how anxious Ben would be about going to the movies again. Every time I had brought it up in the past two weeks, he freaked out. But I calmly and matter-of-factly told him that Dad and I had decided we'd take the whole family to see a movie this afternoon, and I knew he'd be a little worried about having a panic attack again but since both Dad and I would be there, he could sit on my lap the whole time if he needed to and we'd make sure he was ok. He was a little nervous, I could tell, but decided that was ok.

We made it through the movie without rushing off to an ER. That was an improvement. Ben did come and sit on my lap at one point when I think he was feeling a little funky, but then went back to sit with his siblings in their "Kid Row." So we were able to work through some of Ben's anxiety and get him over the hurdle of the first time doing something that had caused a panic attack the last time he did it. Phew. Ben- 1. Panic Attack- 0.
On Sunday we drove to Milwaukee to see grandparents and go to the Wisconsin State Fair. Before we left I had to think through all our special needs requirements. Should I bring the epi pen? Did I have all the doses of meds for all the kids for all the time we'd be away from home? Did I need noise-blocking headphones? Did we have all electronics necessary to make it the one hour ride to Grandma's house without too many meltdowns? Did we have chargers for said electronics? Did we have extra clothes along for messes? Sunscreen? Sweatshirts in case kids got cold? (I know, some of these are not specifically special needs issues, but they're more intense than typical issues. For instance, if one of my SPD kids gets cold, it's like they're dying and it's an EMERGENCY and we must get them warm ASAP. And they will yell and scream and whine and fuss as if the world is ending until they are warm.) Did I have all the emergency supplies we might need- bandaids, itch cream, sanitizer, antibiotic cream, nail clippers (Some of the kids can't handle any kind of hang nail. It must be dealt with immediately.). Do we have snacks in case anyone feels a quiver in their empty tummies and needs something to eat when we are not anywhere where we can get food right away? Do we have drinks in case Ben gets dehydrated and that leads to another panic attack? These things don't sound special-needy, but the intensity with which my kids react to these unremarkable issues is quite special-needy. Any small problem in any of these areas can cause a meltdown the likes of which the Wisconsin Fair has probably never seen.

I am exhausted before we even hit the road!

We had a great time at the fair. But we should have known we were staying a bit too long. Jonah started to get overwhelmed by his tiredness, the noise level, and the people jostling about him, touching him. Aidan was pooped from walking and demanded Ella's stroller. Ella was a saint and decided to hold Daddy's hand and walk a bit so Aidan got to go for a ride. Ben was getting tired, hot, fiesty and snappy. 
The ride home from the fair was. not. fun. It's an hour, for crying out loud! You'd think some almost-11-year-olds could handle an hour-long ride! But no. It was a pretty miserable hour. Yelling, screaming, phsyical fighting, name it, we have it in the car on a regular basis. If you get into the special needs mindset, these behavior problems happen because the boys are bored, or hungry, or overly tired, or over-stimulated, or having a mood swing, or sick...but that doesn't make it any more enjoyable to deal with. 

So we made it home after a fun, long, tiring weekend, to all crash into bed and call it a day. From the outside, it may have looked like we were a big family having big fun all weekend. But on the inside, it was work to make it look like that. And on the inside, there were deeper reasons for everything we did than just having fun: A chance to conquer anxiety. Exposure to sensory input that doesn't normally happen. An opportunity to deal with changes in our schedule. It's a lot of work to have kids. It's a lot of work to have kids with special needs. But on a Sunday night, when everyone is in bed and I'm able to reflect on all the "normal" things we did this weekend, I'm happy that we can at least show up for life. We may be messy, anxious, worried, and irritated for some of it, but we show up! I try to remember it's awesome that my kids got to experience a birthday party, a movie, a drive, and a fair this weekend! They may not have stayed for all of everything, but they showed up. Maybe that's the most important thing.