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Cooking

My father is a Johnson and Wales Culinary Arts graduate, and worked a good portion of his life as a chef. Since I was old enough to be trusted in the kitchen, I’ve been cooking with him. I remember learning at age eight how to scramble eggs, my first official meal cooked.

Since that day, he has taught me so much in the kitchen. Today, I still text or call him for advice. We excitedly share delicious new foods we find; and that happens often because he is now an employee of my favorite market. He was so excited to share these cream filled gingerbread cookie sandwiches with me. And for good reason- they are now my absolute favorite.

I have a secret though. For most of my adult life I’ve fought what I guess is considered eating disordered behavior. Since my teen years, I’ve restricted my own food consumption, when my emotions get out of hand. I avoid mirrors and scales, like it’s my job. It was an issue that I held close, and did not share with anyone. Including my therapists over the years. It got out of hand, and I developed an exercise compulsion, and between that and the restricting, lost too much weight. I couldn’t stop – I tried everything. Giving up my Fitbit. Adding Ensure, eggnog and daily smoothies. None of it worked- I could not get “lose more” out of my mind. I ended up 20 pounds underweight, which earned me a ticket to a local eating disorder program, for two months.

At that program, I relearned how to eat properly, was taught healthy coping skills through CBT and DBT. We worked on body image issues, but not nearly enough to get me past mine. I still can’t look in a mirror or step on a scale. I can’t wear sized pants, preferring leggings or sweatpants which are more forgiving in size and shape. I try to rationalize this is healthy; this is what healthy looks and feels like. Often I find it doesn’t work though.

I get this too big for my skin feeling, that I just can’t lose. My family, and especially my husband, are always encouraging me to eat. He tells me I could stand to gain double digits in pounds; but I take that and mentally twist it into an insult. I’ve finally started responding with, “But I have to live in my skin. And gaining weight makes me too uncomfortable.”

I’m at my target weight from my program. It’s been a yo-yo year with weight, but I’m making an effort to stay near that target number I graduated with.

I’m mortified to be in my 40’s, and having to seek treatment for an eating disorder. I thought at this point in my life, I’d have it a bit more together. I thought those days of inpatient/ outpatient treatment were over. My pretreatment physical and lab work were an absolute mess. My blood pressure was irregular, potassium was off, and many other values which made me nervous. I didn’t realize skipping a meal here and there was destroying my body. That was a sobering realization, and one which helped me to change my ways. I want to see my child grow up, so I started eating.

I don’t know what is at the root of my eating disorder. I don’t know what caused it to flare, to the point of needing treatment last year. I wish I had the willpower to will it away, but I now know that’s not how these issues work. I have stopped the compulsive exercise. I don’t wear my Fitbit anymore, I put it away at the start of the pandemic. I don’t think it’s a helpful tool for me. I want to get to a healthier spot, where I can put it back on, and not have it be a challenge to reach 20,000 (or 25,000) steps a day.

Back to cooking. Between the eating disorder, and then the pandemic and all the stress which came with, I haven’t been cooking. We have been eating easy meals, nothing made from scratch. This past weekend, my shopping list for my husband was different. I decided to put together a list of ingredients to make some homemade meals. It’s been a while, since I went “home” in the kitchen. I’ve been avoiding it since treatment. It was too large of a hurdle, and I couldn’t figure out how to get past it. Turns out, it was just a decision I had to make.

Most of my homemade meal recipes are memorized. Many have been passed down from my father to me. I was able to plan out a solid two weeks of home style cooking meals for us. And I’ve spent four nights in the kitchen cooking. It feels so good, so right, so comforting, to be home in the kitchen. I think I may be able to get this eating thing conquered this way.

Yesterday, on a hike with my dad and my son, my father asked me for a recipe. He asked me, for a recipe. I was shocked. It was a first, and it was a huge compliment, which I took as such.

Returning home, I started cooking dinner. Once we sat down to our ham, mashed potatoes and green beans, my husband and son looked to me: “It’s wonderful to have you back in the kitchen. We’ve both missed your amazing meals. Thank you.” I think I’m making progress, and with feedback like this, I can continue.

In all of this eating disorder stuff, I discovered an author who has changed my life. Glennon Doyle- who I cannot recommend enough. She’s had a messy, beautiful life, and shares it with the world. I’ve drawn immense strength from her work, and found it inspirational to continue my fight. She too, fights body image/eating disordered thoughts – and is close in age to me. Her books are so readable, relatable and real, that I often find myself rereading them. She’s my hero. 💙

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Stigma Post #1

The stigma associated with any health diagnosis can be difficult to live with. Mental health and neurodevelopmental diagnoses are still very sensitive topics. As a society today, we act as if we are so enlightened and accepting, but many times, that’s not the case.

Take, for example, the current handling of remote learning for students across the nation. There is no nationalized plan to implement IEP’s; nor anything offered statewide even. My son is on a 504, which has been rendered useless, since he’s not physically in school to receive the built in supports and accommodations.

Living in Massachusetts, school is cancelled for the remainder of the year. Our Governor, Charlie Baker, has been having daily press conferences throughout the stay at home period; keeping citizens up to date with the latest information and advisories. Our state is in the first phase of reopening.

This post though, it’s not about that. It’s about how invisible our special needs children have become in this pandemic.

Special needs children (and adults for that matter), have been completely neglected from inclusion, anywhere. This is the exact opposite of how it’s supposed to be.

I’ve heard Baker and Cuomo both repeatedly speaking of the graduating seniors, and how sad it is they are losing out on their chance of physically graduating, attending prom, banquets, etc. I feel sympathy for them, sure. However, these young adults have their whole life ahead of them. They made it! They are off to great things – the world is their oyster.

Like a mom friend on Facebook mentioned, our children are being left behind. They are invisible. When I try and talk with others in real life about how far behind my son is slipping, I’m dismissed with, “Well, they won’t be holding this time against anyone.” It’s invalidating and infuriating.

When both Governors Baker and Cuomo were asked about what’s being done to support adult disabled populations, neither was ready with an answer. I was not impressed. This population is just as at risk as those in nursing homes, especially if in congregate living. I’m aware they can’t be on top of everything, but we’re in week ten here. (And I’m not meaning to negate any of the wonderful work both have done to keep their states safe. This is just a matter very dear to my heart).

Perusing the Massachusetts Department of Education website, I’m saddened to see that there’s absolutely no mention of special education administration, or expectations.

As a special education family, we are left floundering. I felt invisible before this- now I feel as if we just don’t matter. And my husband and I have fought a long, hard battle over the past three years to be where we are with the 504 Ed plan. Our son has fought even more so, and to see him regress is heartbreaking.

I submitted a request this week for a re-evaluation for an IEP for my son. I don’t know when that will happen, but at least it’s been sent and received.

I just want for him what should be rightfully his. A Free Appropriate Public Education. Is that really too much to ask?

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