Monthly Archives: April 2016

“special” moms

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What happens when you put 8 special needs moms at a table? You hear a whole lot of swearing and laughter.

Last night I went out with a group of moms to celebrate an incredible woman who is leaving HHS (she’s not a special needs mom herself, but she gets us and we miss her already). The mood was mixed as we arrived — goodbyes are never easy and change is particularly hard for us special needs moms. Our friendships vary from close to barely acquaintance, but we all share one thing – being the mom to a special kid (or two).

The hostess showed us to a table in the back of the restaurant, where we were less likely to bother other patrons. I guess a table full of ladies always has the potential for loud voices and racy chitchat. Within moments of sitting down, several conversations started at the same time. Far from the discussions I have with my “typical” mom peers, that center around our kids GPAs, prom, college applications and juicy town gossip, most of the discussions around the the table last night were about guardianship, social security and how many seizures in a day is normal in our given homes.

Such different words, but the tone felt similar to any other moms’ night out. I imagine if you couldn’t hear the particulars of our conversations, we looked and sounded just like any other group of middle-aged women. And, once we got settled and the wine got poured, the laughter started.

I’ve never had many “special” mom friends. Remember – Jack was typical until he was eight. By the time our family was thrown into the special needs world, our dance card was full. Besides, I didn’t think I could possibly have much in common with a group of women I felt vaguely sorry for. I figured they must be so sad all the time and overwhelmed and have no time for anything except doctoring and complaining.

Then, one day I realized that I WAS a special needs mom. I’d earned my title and I wasn’t completely buried under the job requirements. Perhaps there were others like me. Other moms with special kids who were still living life and wanted friends who understood them in a way that their typical friends couldn’t.

I started slow and found a couple moms at our last school and was amazed to discover that they were just normal women who happened to know the difference between a grand mal and an absence seizure and what the letters AAC stood for . I had a lot in common with some and absolutely nothing in common with others – just like “typical” people. Amazing!

It’s taken some time, but I finally have a little circle of women that I can call my friends who know one side of me that’s still foreign to most people in my life. We can bounce off ideas about alternative therapies and strategies for shaving/haircutting/and all-around-grooming our teenagers AND we can bitch about our husbands (not me Dan, it was the other ladies) and talk about our new diet plans. AND, we can laugh about (almost) all of it!

I left dinner feeling lucky that I’ve found this group of ladies. I wish it hadn’t taken me so long to realize that “special” moms are just “typical” moms with more patience and a better sense of humor. I look forward to my next “special” moms’ night out!!
Love, Jess

I did learn a few things last night. Wondering what words you should never use? “Retarded” and “normal”. What words are A-OK with special needs moms? “Intellectually delayed” and “asshole”.

Poop, shower and shave

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Jack’s school, Horizon High School (HHS), is having their annual fundraiser and I wanted to write a post encouraging everyone to make a donation. My first draft was filled with all the extraordinary experiences offered to the children at HHS. Physical therapy, occupational therapy, speech therapy, a school store, student government, theater, aqua therapy, an outdoor garden. This is all on top of academic subjects (modified versions of Science, Career Skills, Social Studies, Language Arts, Life Skills, Drama, World Cultures, Art, Music, Technology, and Math).

Horizon High School is amazing for all those reasons, but there is one other reason that not all parents will admit. Horizon High School gives me a break.

I’m always happy when the small white van (no yellow bus for us) arrives, and today when I saw the bus out our front window, I started crying happy tears.

This morning was particularly tough at 26 Clinton Avenue. I knew it would be as soon as I walked into Jack’s room. Even Jack’s brilliant smile couldn’t mask the odor. “Come on JackO! This is gonna require a long shower and some extra cologne.”

If I keep Jack laughing, I have a chance at survival.

Eight years into this new life and I have developed an amazing skill where I can almost shut off my eyesight and sense of smell, so that I can go through motions required to clean up after a messy situation. I can’t even describe this morning’s shower fully, but we went through a half dozen washcloths and I needed to wash the tub when we were finished.

Just as I was getting Jack out of the shower, he surprised us both by peeing on the bathroom floor. One more quick rinse in the shower and I added the floor to my list of cleaning duties. As I got Jack dressed, I glanced at my watch and realized that we had lost valuable minutes and needed to rush through the normal “upstairs routine” in record time – teeth, deodorant, hair brushing. If only I hadn’t told Dan my plan for today. We still had our “downstairs routine” – breakfast, medication, hydration, and those cumbersome leg braces to deal with. And, now I had to shave Jack too. Alone.

I’m not entirely sure why I thought telling Dan that I would shave Jack was going to make the chore disappear. Jack was already in bed when I shared my plan. I couldn’t have expected Dan to wake up his son to shave him. And, I knew the fuzzy hair wasn’t going to evaporate on it’s own. But, it had been over a week since his last shave and Jack was starting to sport a look that was a cross between gangster and homeless. I couldn’t help but mention the need for a shave and that “I guess I will be the one to do it.”

After our “upstairs routine” was over, I helped Jack down the flight of stairs and I fed him, gave him his medication and 12 ounces of water through his g-tube. Then I sat him down on our steps to put on his leg braces and sneakers, already cursing as he did very little to help with the process. Once we were done, I took a deep breath, put Jack in a headlock and took out the electric razor.

As soon as Jack heard the motor, he started wrestling. If anyone had witnessed the scene, I would defiantly have lost my parental rights. He was wiggling and trying to grab my hand as if I was pummeling his face. I did my best to keep him safe and I attacked the beard while yelling one four letter word after another. After about five minutes we were both exhausted and Jack’s face looked better – not great, but better.

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Now, we were ready for the bus. Just an hour since the alarm went off and I was already in need of a nap. Horizon High School to the rescue!

Horizon High School is amazing for so many reasons – it’s individualized curriculums, warm and brilliant staff, beautiful facilities, but sometimes the thing I love most is that it’s a place that Jack can go every day, be safe and loved AND I’M NOT IN CHARGE. I love our boy and can deal with a lot of crap, but sometimes I need a break.

Love, Jess

Please consider supporting our wonderful school.  DONATE TO HORIZON HIGH SCHOOL

 

 

 

I’m a mom

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Senior year of high school all the students in my class took a “Career Aptitude Test”. It’s goal was to provide you with ideas for careers that you would be well suited for. I don’t remember the particulars, but there was a long list of personality questions, and I definitely remember cringing when I saw that I needed to include my GPA. I went from being excited about the process, to feeling less than hopeful about the results.

A few weeks after completing the test, we were handed large manila envelopes in homeroom. Although we were encouraged to wait until we got home, without hesitation everyone ripped open their envelopes; eager to discover their futures. I was an outgoing girl as a teenager, but in school I did my best to get lost in the clutter of high school. There was no need to draw attention to my less-than-stellar academic achievements. This was definitely one of those moments.

“Lawyer!”

“Teacher!”

“Chemist!”

People started popping out of their seats as they read their results. I sat quietly for as long as I could, but finally opened the envelope to reveal what the random algorithm had chosen for me. I held my breath as I pulled out the white sheet of paper. There was a list of several suitable options, but the one that seemed to leap off the page was “Cake Decorator”.

 

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Today this quirky career would have been thrilling, but 1987 was a time before reality television highlighted obscure careers. There was no Cake Boss or Top Chef. I had never known a single person in the food industry, let alone someone who decorated cakes for a living. I sat frozen as I pictured myself alone in a back room of a bakery icing cakes.

Instead of sharing that result with my peers, I focused on something else on the list. Something that didn’t include icing. Then, I went home wondering what on earth my life was going to look like. Until that moment, I hadn’t focused too much on what I wanted to be. The only thing that seemed certain was that I wanted to be a mother.

I’d always known I wanted to be a mother. Not just having a few kids within my otherwise filled life, but being the kind of mother who stays at home, making PB & Js and helping the PTA. An old fashioned dream for modern times, but for me it was my greatest ambition. I’ve never judged women with big careers and busy lives (my own mother raised my brother’s and me while juggling jobs, being a corporate wife, getting her PHD and baking her own bread), I just didn’t really want all that for myself.

But 1987 was a time when girls where encouraged to “dream big” and the glass ceiling were getting higher. It would have been as hard to share this 1950s dream, as it would have been to share the idea of being a Cake Decorator. So for years, I sat silent when the the “What do you want to do when you grow up?” question was asked.

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Of course life winds around, and I’ve had a long list of jobs. I’ve been a wife (not that it’s really a job Dan), a teacher, a photographer, a writer (you don’t need to be paid right?). I’ve had my share of successes away from home, but when I look at my life, my proudest achievements have been as a mom. I’m grateful that Dan and I set up our family so that I could focus on my 1950s dream. It’s allowed me to devote all of my attention on my family when it’s been required — and it has been required a great deal.

Now, when people ask me what I do, I always start with, “I’m a mom.” I say it proudly.

Although I haven’t always been the perfect mother, I think that my successes safely outweigh my failures. If I can take even a tiny part of the responsibility for who my children are, I know that I’ve done a good job. Two kids with entirely different lives, and both are happy and succeeding (in their own way) as young humans. People that I don’t just love, but who I enjoy being around – most of the time. I’m still not quite sure what I want to be when I grow up, but so far MOM has been my favorite title.

Love, Jack and Anna’s mom

 

I never did find a job in a bakery, but I have decorated a lot of cakes in my time – just most have been of the “birthday” variety. And, I have come to know a few VERY talented cake decorators and often regret not taking that path. After all, I could have been a cake decorator AND a mom.