Author Archives: Jamie @ SensationalFamily

We made a decision

For almost two years now I’ve had a little noise in the back of my head saying “Kennedy Krieger”. I usually hush it up and go back into my denial world. I’m usually up front and open about “we need help” and “things aren’t right”, but somehow making the phone call to the children’s hospital seems extreme. It means we’ve hit the big time. I’m not totally ready for the big time.

Almost two years ago when we started with behavioral therapy, we were warned at that point we might not get all we need through local services. We weren’t promised cures, just a good ole fashion try. We were willing to go the least intensive route. Local behavioral therapy, local occupational therapy. And why not, even the school psychologist couldn’t give us 100% diagnosis. Everyone hovered over autism, PDD, anxiety disorder but were in agreement that something was off and most likely Molly was not a case of pure Sensory Processing Disorder. But, then again, she could be. We had a 3 1/2 year old and 18 month old. Least intensive seemed to be what would suit our family best.

We aced behavioral therapy and felt we could breathe. We plateaued in progress in occupational therapy. We started therapeutic riding. We couldn’t deny her improvements. There were many. She was becoming more social with peers. She was wiling to get on her bike. She occasionally would eat something other than pasta. She started using the bathroom at school. Occasionally. We also couldn’t deny the massive behavior problems that continued. The unwillingness to break from routine. The violent, and I mean violent, tantrums. The unwillingness and inability to be independent. The denial of what her body was telling her.

For those of you who don’t really know what Sensory Processing is (and I realize I’ve never really explained it here), it’s a incorrectly wired nervous system. Problems arise in hearing, smelling, tasting, feeling, seeing, balance and internal regulation. The Sensory Spectrum has a great picture, and article explaining SPD here. With Molly, we deal with noises, with balance (proprioception) and internal regulation mostly. And although it seems small, the anxiety and need for perfect routine are enough to drive you crazy. Then we deal with the fact that she doesn’t know she’s hungry, thirsty, hot, cold or any other body sense you could think of. Ever tried to get a picky eater to eat that doesn’t think they are hungry??? It’s impossible. We eat noodles every day. She becomes “hangry” quite often.

So here we stand. We are two months out of going to kindergarten and six months into some of the worst behavior problems we have seen in a long time. Each time we get through one batch another creeps up and we have more defiance, more stubbornness and more battles over every. little. thing. 

Our social worker thought we needed to go to the big guns. We were past what she could give us. We had done everything on their treatment scales. What we need is not here in town. It’s time to call Kennedy Krieger. However, knowing that I am in denial, she also gave us a few names of in town people that might be able to help. Might. I am tired. I am tired of going from therapist to therapist. I am tired of resolving and living through melt down after melt down. I’m losing patience. Fast. It took a week of deliberation between Stampy and myself but we agree. We need it. Our family needs it. Our daughter needs it.

I make the call tomorrow.

Wish me luck.

 

Imperfectly Perfect

“Every mom wants their child to be perfect.”

Those words felt like a punch to my gut. Anymore these days, it doesn’t take much for people’s comments about parenting (or how I choose to parent) to really get me riled up. I am who I am and I make the best choices I can make in the situation I have to make them. For some reason, this statement made me think. 

I don’t have perfect kids.

I don’t want perfect kids.

I am the mother to one child who had to have his urethra reconstructed (he was born not perfect) and now has a malfunctioning immune system. I have another child who has a malfunctioning nervous system and digestive tract. I know a lot about imperfection. 

It’s those imperfections that make us a perfect family. 

We cry together, we flip out together, we laugh together. We all avoid overly loud places that Molly can’t tolerate and restaurants that will easily send Charlie to the hospital. Molly teaches people how to use an epipen and Charlie hugs Molly and tells her everything is OK when she can’t quite get it together. My kids learn compassion and fairness. They learn that everyone has a bad day and that sometimes you have to wait your turn.

More importantly, it’s those little non-perfections that make those kids MY KIDS. It’s what makes them unique. It makes memories and multiple hospital issued baby blankets. It gives us great little personalities. It gives us little fighters.

It is what makes our family imperfectly perfect. 

My Village. My Strength.

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  I started to give up. My friends deserved a much better post than I was giving them. A week went by that I sat staring at this picture, with that tag line “My village. My strength”. It’s how I felt in my heart, but I felt like I captured More in those four words than I could capture in several paragraphs. The problem was bigger than writers block. The problem actually wasn’t a problem at all, it was because my village is bigger than these 7 pairs of feet.

These feet belong to most of my inner circle. The people I cherish more than anything. I love their families and they love mine. We are so lucky to have each other. These are the friends you can do anything with from doing headstands on the beach to crying over wine and everything in between. These are the friends that make you laugh harder than you have ever laughed, think harder than you have ever thought, and be be better than you ever thought possible. However, they already think you are perfect the way you are. I strongly urge you to get some of these friends if you don’t have them. Then I strongly urge you to keep in touch with them. Honor the friendship and do things that strengthen it, that keep it together, that allow you to know each other in a deeper sense. You can truly belong. I love these girls.

However, I’ve allowed myself to branch out. To move away from the inner circle I felt so comfortable with. I let myself become vulnerable to others, to know others and let them know me. I let myself strike up a conversation with someone I barely know. I let them in and in return, they have let me in. With these friendships I have felt the warm embrace at difficult times with Molly, I have felt the acceptance with text messaging asking about safe foods for Charlie, I have been offered safety for my children, and I have felt the joy of moms who also like to drink wine at 2 PM on a Saturday during a play date. 

Each one of these friendships makes me better, makes me stronger, makes my family greater. My kids know a world of comfort and safety. They know community, they know caring, they know a family that extends past their family. That is a tremendous gift.

I can’t go through and thank everyone personally. But know, you are my village. You are my strength. I hope I can return the favor.

40 days have come and gone

I.MADE.IT

We got off to a rocky start here, the first three weeks I was yelling once a week. Which was down from the three or four times it was. We hit that third week though and everything started to flow. Now about that time it warmed up about 20 degrees, days got longer and we could go outside. Might have had something to do with the change in my mood but either way, week three through six blew on by. I didn’t take those last three weeks basking in the sun though. Nope, we started potty training and we hit both kids’ (and mine) birthdays and two illnesses. We were busy. We were running. We were living.

I thought I would share a point when I noticed my change had occured. It was two days before mine and Molly’s birthday. I was working 9 hours that day, eleven the next and I had a birthday cake to make. Like all five year old girls, Molly wanted a Thomas cake and since Charlie has food allergies, Stampy and I were left to our own devices to make it. Things were going well that day and I had scheduled myself down to the minute. I knew if I could just get the cake in the oven, my mother-in-law could get it out as she was watching the kids. Turns out I had just enough eggs and cocoa to make one cake. I had just enough time to make one cake. ONE.CAKE. Dry ingredients go into the stand mixer and the rest is Charlie history. FYI, if you leave a stool next to the counter and if the stand mixer is near that stool, a three year old might climb on said stool and turn stand mixer to high. 
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Needless to say my already risen stress level went from 0-60 pretty quickly. Chocolate cake dry ingredients everywhere. Oh, and did I mention the eggs had already gone into the stand mixer?? Yup. My eggs, cocoa and time were now a dust storm all over my kitchen and three year old. He didn’t have much to say for himself other than “I’m covered in flour!”. I realized that I could yell about what just happened or I could accept what life handed me.
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I chose to accept what life handed me (seriously, I couldn’t yell at that cocoa covered face) and with that it handed me two awesome in-laws at that moment. That not only got new ingredients but baked a cake and cleaned my kitchen. Yup, that happened to. I was pretty lucky.

Did I mention we started potty training that little guy?? I’m sure more will come about that later.

I got the Pinterest guilt

I haven’t written in awhile. Life picked up the pace on me. Work got busy, birthdays came and went, the weather got nice. During all that, Stampy and I have been having some quality time. I guess you can say I’ve been too busy living my life to write about it. But something happened to me today that I feel has happened to others, so I thought I would share. I felt the Pinterest guilt.

Tomorrow is Charlie’s Easter party at school and I’m one of the party moms. Naturally, I volunteered, or really stated, that I would bring the snack. Being the mom of a food allergy kid means I will always “volunteer” for that job. Up until today, I just assumed I would make cupcakes with pastel Eastery colored frosting. That sounded easy. I didn’t search recipes online or in cookbooks, I just planned on making chocolate cupcakes. Then today hit. I started at work at 7:30am, managed to finish up with just enough time to drive the mile to Molly’s school to for our parent/teacher conference, then to home for a quick lunch and out the door for a play date. Once we got home I was just too pooped to make cupcakes and frosting. So, I headed to Pinterest. Big mistake. Huge. After looking at numerous fun sweet treat options, I came to the conclusion that I didn’t have the time, energy or ingredients to make anything other than cupcakes or brownies. Brownies were the easier choice so BAM! brownies it was. Only something happened after I decided. I kept thinking that brownies just weren’t enough. How could I make brownies better? How could they be more Easter-y? I literally spent a good ten minutes contemplating this fact and starting to feel worse and worse about my decision to bake brownies.

Luckily, I snapped back into reality. I felt bad about making homemade brownies. I realized I hit a new level of crazy. A new level of mom-perfection guilt. I’m not even sure who I was trying to impress with anything. I’m taking food to twelve 2-3 year olds. I’m pretty sure that they don’t care what they get. I could probably give them anything that contained chocolate and/or sugar and they would be happy. So, I made brownies. Delicious, gooey, chocolately brownies. And I feel good about it.

I will continue to internet hoard though, because I do love Pinterest.

3 weeks, the non-yelling continues

Sort of. Well, I’ve yelled 3 times. But only twice at the kids, once was really to no one in general. Maybe it was towards Stampy, but it was more I’m-having-a-nervous-breakdown-and-no-one-is-listening-to-me yell/cry. 

Either way, the bigger part is that I’m learning ways to control my mood when things really start to irk me and I feel like I’m losing control. These past 3 weeks have also taught me what really pushes my buttons and makes me want to start yelling at the kids. I now know what I need to learn to control. 

I need to control my urge to be on time. Nothing gets me riled up faster than being late. I hate being late. I hate when people are late in general. It’s probably one of my biggest pet peeves. Want to put me in a bad mood, show up late. Of course a 3 and a 5 year old have no sense of time. At all. None. Since I’ve stopped yelling, we are now consistently one of the last people showing up for school which means my blood pressure is consistently up before 9 AM. It’s a good thing we live a half mile away or we’d be much later since I’ve been buckling my kids in to their car seats when we should be there. Today we were actually early, but Molly sat in time out twice before we got there. 

I need to watch Full House reruns more. That Danny Tanner rarely loses his temper, he has a lot of patience and good advice. I didn’t realize that back in the early 90s. I also didn’t realize how bad the fashions were. Nick at Nite is really good at reminding us what not to wear.

I need to exercise more. I really try to make it a priority but with work and 2 kids, it sometimes takes a back burner. However, I am much more relaxed and calm after a 3 mile run. I’m also too tired to fight. Yoga just makes me realize that things aren’t so bad. At least the kids aren’t asking me to bind while squatting.

The tickle monster needs to visit more. Really, you want to choose 5 minutes before walking to the car to argue about getting a cowgirl hat? That’s fine, I can’t hear you over the tickle monster. You don’t want to brush your teeth?? That’s ok, the tickle monster will do it. He doesn’t mind your silent crying and thrashing.

With a little over 3 weeks to go, I think I’m going to make it! Probably not without yelling again, but at this point at least the kids now know that when I yell, I mean business. Plus, I’m Italian. We yell sometimes. It happens.

Why I’m not worried about Frozen

We’ve been hit by the Frozen bug here. Frozen songs, Frozen the movie, Frozen the book, Frozen the YouTube videos, it’s everywhere. Why, because my son LOVES it. He can’t get enough. I have read him our book at least three dozen times in the past 3 days. I have seen the YouTube video of Let It Go more times that I can count today and I’m bombared with “let’s watch Frozen” morning noon and night. Never once did I think that watching it might turn either of my children inot homosexuals. That is, until last week.

This topic was brought up to me by a patient that had heard a pastor on the radio talking about how Disney has created a movie to endoctrinate our children into homosexuality. Later that day I found a friend had posted this article from Huffington Post and I started to dig into this line of thinking. I mean, seriously, how did I miss this message? Oh, right, because I took the movie at face value and not at some underlying plot theme. Also because I was probably cleaning while the kids were entertained so I wasn’t paying much attention. I sat down the next time with them to watch it. I didn’t want to miss out on some contraversial movie!

Then I started to think, “well, this does make sense. I could see how you could correlate Elsa’s struggle to that of a gay child”. And there was the shop keeper with a husband. And Elsa did turn fabulous after accepting herself. And Olaf did kind of have a lisp and was pretty happy…. However, that being said I don’t think the movie could possibly turn my child into a homosexual or that my child would even get that message.

Why?

Because my kids don’t know what “gay” or “homosexual” means. The other week I heard them asking Stampy if he “loved the girls or the boys” to which he replied “I love your mommy most, but there are boys and girls I love” to have Charlie retort “No, Daddy, you love the boys”. Obviously, we might need to sit them down and explain things to them. Or, Charlie finally solved the “Is Stampy gay” riddle. Either way, they are 3 and 5, I think they are fine in thinking that love is love.

Then there is the fact that these kids that can’t make the connection of hearing “dinner’s ready” to understanding that they need to go to the table to eat it. These are children that need every step verbalized and accounted for. Literally, every step. Phrases like “clean up” are too general for them to comprehend so how could they ever see and underlying point in a cartoon movie?? They can’t. To prove this point, I asked Molly what the movie was about. After all this is the same little girl that answered the question “why do you guys have to make everything so difficult?” with an answer of “because we are little” so I figured if any child could figure this out she could. In the end I was left more concerned by her becuase she didn’t even think the movie was about sisters. She said it was a wintertime movie. Clearly, the homosexual messages have been lost on her. 

But mostly, I don’t worry about my kids becoming homosexual after watching Frozen 8,000 times becuase for the basic fact of you don’t become that way. They either are or they aren’t. Plain and simple. And honestly, if they have a character that they can attach to and become confindent from, good for them. Good for Disney for putting it out there. I’m more than happy so see a strong, empowered role model. Especially a female one.

And this is one of the few movies where the villian doesn’t die. He just gets punched in the face and then exiled. There’s something to be said for that fact as well. Or am I the only one that noticed that?  In most Disney movies, the stand off between good and evil ends with evil being slayed, or jabbed with a jagged edge of a boat, or hung by vines in the jungle. I could go on and on. I was a teenager when the whole Little Mermaid, Lion King and Aladdin scandals broke. I had seen all those movies more times than I could count and you know how many times I noticed a penis? None. None times. How many times did I see “sex” spell out in the dust made by Simba? None. I also never really heard Aladdin instruct teenagers to take off their clothes, but I digress.

So, I will continue to enjoy the smile on Charlie’s face as he bolts out “Let it grow” at the top of his lungs knowing full well that Charlie will be who he will be and Molly will be who she will be. No matter if they watch Frozen or Transformers Rescue Bots (Molly’s favorite show) or any other show that they become obsessed with.