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It’s A New Dawn, It’s A New Day…

Well, it’s January 21, 2021, and in America, a new day has dawned. For the first time in four years, I was able to sleep last night. My heart broke for my country on November 9, 2016, when I awoke to the news that a man who bragged about sexually assaulting women had won the presidency. A man who ran on xenophobia, racism, white supremacy and demagoguery had somehow won the most powerful position in the world, for the next four years. I knew it was going to be a dark time in our country, but didn’t think it would turn out with over 400,000 dead Americans due to his genocidal ways, because “optics”.


On November 9, 2016, I said goodbye to one of my closest friends. We had worked together for five years, and spent much time outside of work socializing, with our partners. I thought he was an environmentalist. I thought having children would make him think harder about his vote that year. I thought appreciation and love of his wife, would make him think. I thought wrong. I woke that morning to his Facebook post, gloating about 45’s win: “Thank god T***p won! Now I won’t have my guns stolen from me!” I was stunned. I didn’t realize we were so diametrically opposed. I responded with something to the effect of: “You have children. Doesn’t the exploding level of school shootings unnerve and worry you?” Well, this conversation ended in a private message I sent to him, expressing my disappointment and sadness that our friendship had come to an end. Some may think that was drastic of me, but it was what I believed, and still do.


How anyone could look past the horrendous record 45 brought to the nomination is beyond me. Those who voted for him? Wether enthusiastically, or like another friend, holding their nose, I just cannot associate with them anymore. I was surprised by a few more friends, those I thought very well educated, who had fallen into the “Deep State” conspiracy. One was an executive at our local newspaper; again, with children.


I sat politics and news out for over three years, because I mentally could not deal with the level of hate, misogyny, corruption, white supremacy and nationalism being pumped out by the administration. I couldn’t watch the national embarrassment who was supposed to be representing all of us. I had a child, and I had work to do. I had to educate my four year old, on how to be a good human. Thankfully, we haven’t had television in over seven years, so I was able to shield him from most of the hate. His teachers were also instrumental in making him a wonderful human; whose heroes are Martin Luther King Jr., Kamala Harris, Michelle Obama, but most of all, Brayden Harrington.


Everything changed in March of 2020. My son’s school announced March 13 that school would be closed for two weeks, starting March 16. We had no idea what was happening. So, like many other Americans, we tuned in to the briefings from the White House, hoping for some clarity on the frightening situation. We were quickly let down (no surprise), by being told to inject bleach, shine lights into our innards, and “One day, like a miracle, it will disappear.”


No, none of that has happened. Instead, over 10 months later, my son and I are growing feral from being locked in the house for our safety. He spent one whole week at school this past fall, in the hybrid model, before school was closed due to cases in our town.


Fortunately, we have a competent Governor, Charlie Baker, who was out front and center, almost every day, sharing everything he possibly could with his citizens. Prior to this crisis, I wasn’t really aware of him as a politician, but how he’s handled this crisis, I’m impressed. We may not agree on everything, but he has made his citizens his top priority, in an impossible situation.


I’m not going to get into the months which follow. I would rather talk about the joy, love and patriotism I found in my heart yesterday. I cried tears of joy many times, watching the inauguration with my 8 year old son. He watched, mesmerized, at the process of government. We have our country back. Justice, science, hope, decency, equal rights, civil rights, civility and diversity were on display, and hopefully how our country will be run, for the next four years.


There is one piece to Joe Biden’s convention and inauguration party that makes me so emotional – and that is Brayden Harrington. That boy, from a neighboring state, met Joe Biden. He shared with President Biden that he stuttered, as Joe has dealt with. My son watched in awe, each time Brayden spoke. I think it has shown him that obstacles can be overcome, and there is no limit to what you can do. My son deals daily in school, with being told unkind things, and often being disciplined for his neurodivergence. (One part of remote learning that is beneficial – he doesn’t have to deal with that now). Brayden is one of his heroes, and mine too. I just hope he knows how much hope he instilled in my son, and hopefully millions of others.


Thank you, America, for restoring hope and decency to all of us. Let’s get to work.

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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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Panic

I love my 8 year old son with all my heart. I would do ANYTHING for him! Our relationship is suffering so much for this grand social experiment- I can’t reach him. Can we take a year off? Can’t I quit? Remote learning is destroying his self esteem, our relationship, and really challenging my patience.

We have chosen to keep him home year round this year due to being a high risk family. Safety over sanity, I guess. We worry that the transition from one day in school, one day home, repeated all week will wreck any chance he has of learning. So we decided to keep him home. His developmental pediatrician, and the SPED department at the school understood, and are all doing their best to support us.

I have never had this much anxiety before in my life. And I was diagnosed with GAD as a kid. I’m 42 and worried about this level of stress, and what it’s doing to my body, and my son. I know he picks up on it, I know it triggers his anxiety in response. I do not know how to deescalate us both. I’ve spent years studying CBT and DBT. No coping skills are helping. Therapy helps some. Medications don’t fix situations.

So, we flail. Trying to meet expectations that are so out of reach… setting his little heart up for failure – if he saw the amount of work assigned daily. I don’t show him. I’ve made some massive adjustments in ways of learning. I don’t know if the school will be okay with them, and I don’t give a… He feels successful if I type his words for him. We do all math work on a whiteboard together. Science is his favorite.

We just got an IEP. But how will they deliver services remotely? Cases are increasing in our town, and the school is open for hybrid. Do we send him for services? Do we send him back to hybrid? Will he learn better there? It would be much less stress, and tension between us. But he’s as terrified of COVID as most of us masked people. Would he see it as freedom, or abandonment? How behind is he? How worse would his anxiety and depression be? Does he know I love him? Does he know my anxiety is from the expectations the school places upon us, and not from being with him? How would he do with the transitions? Who do I ask for help?

I’m lucky- I am disabled, so I’m able to be home and focused on his schooling and provide the constant 1:1 he needs. I count those blessings every day. I’m terrified that we are going to fall behind on work- and the school will report us to social services. (It happened to his dad). It’s a real fear – not that we’ve ever been in trouble, but one that is never far from my mind. And I know there are millions more families in much worse situations than us. And my heart goes out to each and every one of you.

Lest anyone think I’m holding the school, staff or his amazing teacher responsible for this – I’m not. Not at all. We are in one of the best schools in the state, and it’s public. They are phenomenal to work with. The IEP process: we worked together for the common educational goal of a free appropriate public education, for my son. There was no need for a lawyer or advocate. All of these women know our son closely, and have been helping him for years. To finally have earned him the IEP? Feels like we won the lottery. I treasure each and every soul at his school. And I know this is most likely more difficult for everyone who works there. I’m not losing site of this.

Each day is an absolute horror show. I’ve yet to figure out a way to alert my son that it’s time to start working, that doesn’t end in him throwing or breaking something. (See, transitions = low frustration tolerance with him). I’ve tried color coded schedules with alarms. I’ve tried rewards, positive reinforcement. I’ve talked assignments up, explaining “it’s a short day – we don’t have much work, you’ll breeze right through it!” I’ve taken whatever trinket gets tossed, and put it away until work is completed. I’ve tried restricting privileges until work is completed. I’ve tried many, many movement breaks. I’ve tried breaking the assignments up into more manageable chunks of time.

What seems to work best? Reviewing the day in front of us, so he knows what to expect. Giving him choices of which subject to start with. Breaking it up throughout the day, with plenty of adventures in between assignments. Keeping with the same routine and schedule. Using a whiteboard for math, typing for writing, and hopefully soon, speech to text software to really give him some independence. Reminding him that I’m his helper and advocate- and that I have nothing to do with the assigned work, other than my willingness to be his 1:1 aide.

The strain this is putting on my marriage can’t be overlooked. My husband works full time, but is always offering whatever support he can give, outside of work hours. To me, that’s not helpful. We have differing strategies for interacting with our son, when it comes to schooling, and that seems to be coming to the forefront. So, like most things I said: “Thanks, but no thanks. We will stick with our methods.”

It really stinks being a control freak, like me. However, we do have our routines ironed out – some such as, giving him gum when he has to sit and attend to a lesson. That was the occupational therapist’s suggestion at the school. She said the physical sensory input of the gum and jaw movement would help him attend, and sit. So gum it is. It does help.

God what I wouldn’t give to be going on a play date – my biggest concern which snack to pack to avoid an allergic reaction from anyone we are meeting. Or to be thinking about what to get for this weeks birthday child’s present. But instead, this is my reality.

My husband is getting laid off the day before Thanksgiving. I’m nervous because I know I’m going to have to swallow my pride in a few weeks, and go to the local food bank. Again, I’m so thankful for their service. I’m fearful though. This year there may not be enough food. Have you seen the lines in Texas?

I volunteered for a year at ours – and it was the most emotional few hours of my week. Many of the regular clients – I was their only social contact, all week. The love and kindness they expressed melted me. I don’t think we hear enough of the stories from the inside. We see the pictures and hear the statistics, but what about the people? What are their stories? Where are they now? I’m rambling.

I’m scared the impact this pandemic is having on EVERYTHING. Sorry to unleash my anxiety on you all. If you have followed me thus far, I thank you. Please know I send all my prayers and thoughts of comfort and health to all of you. I’m going to go count my blessings to keep myself in check.

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School 2020

Well, we’ve had a solid six weeks of remote learning through my son’s school. He is now in the third grade, and adjusting with time, to the new style of school.

As anyone who has read my blog previously, you may be aware he has some learning difficulties due to his severe ADHD, and communication disorder. At home, we’ve learned how to work around these shortcomings. Both his father and I are able to see the signs: when a meltdown is coming, when a movement break is needed, when an explanation of sarcasm is due, and we often dance around his hypersensitive emotions. It is difficult as a parent, having lived with this child for eight years, to objectively weed out his issues, and see them as a negative.

Sure, he’s hypersensitive- but so am I. So is his father. I’ve never viewed this as a negative trait; it’s always been a positive for me. Isn’t empathy something we strive for, hoping everyone is able to experience it? Doesn’t empathy make for a better world? Sure, at times, the stress involved can be difficult, but for the most part- it’s a benefit to society, as a whole.

My boy doesn’t always understand sarcasm, or kidding around, but he loves jokes and joke books. He has a fantastic sense of humor, loves puns and is witty, just like his grandfather and great grandmother. I do have to get involved sometimes to diffuse misunderstandings, but with the extra information, he comes around.

We have been working with his school since kindergarten to get him the special education services he needs. We were denied an individualized education plan (IEP) in kindergarten, and instead he was placed on a 504 plan. We have at least three appointments per year with his developmental medicine specialist at children’s hospital. She manages his care, and has been encouraging us to fight for the IEP, since he was four.

After our experience remote learning last spring, I submitted a request for a re-evaluation. It was a pants on fire emergency, centered around his educational needs. They responded the same day that we would begin the process as soon as the fall semester started. Beginning in September, my son sat for weeks of academic, occupational therapy, speech language pathology, physical therapy and psychological testing. Both myself and his teachers from second grade completed the psychiatric evaluations. Most of the testing ran way past the expected time; often taking a handful of days, where it was only supposed to be two hours.

This wasn’t a surprise to me. My son and I do our best remote learning, but most assignments, which I believe are supposed to take around a half hour or so, can take us all day to complete. There is a fine line that I do not want to cross with him – pushing his frustration to levels that will equal a meltdown.

There are rules I work with him by. So many in our life tell me not to give in, or give up; when I do so, he “wins”. I haven’t found that to be the case. If I see his frustration tolerance diminishing, I know he needs a break- or the worksheet will get destroyed, document deleted or just a complete withdrawal. See, it’s not behavioral, and he’s not willingly fighting me. It’s neurological, and he’s doing the best he can. He has developed maladaptive coping skills, because he has no healthy skills to work with. I can’t shame him into doing his work by calling him names, or comparing him to others in his class- because he isn’t the same.

So Friday was the IEP determination meeting. I was a wreck. My stress level is off the charts, and I realized how much was riding on this meeting. Remote learning has been impossible this year. I was preparing to be denied an IEP, and starting to think about withdrawing him, to homeschool. (Which I know I would fail at. I’m terrible at schedules and routines. I have no experience teaching; my background is in office administration and writing).

Well, they were all familiar faces; and unlike in kindergarten, I felt differently. The overall impression I got from all involved was that they were there to help him in the best way possible. I still didn’t expect it to turn out favorably for us. We had met one or two administrators at the school who gave off the impression of: “well if you just medicate him, his problems would disappear.” It doesn’t work like that. Even though both my husband and I are personally against medicating children, we were able to get past that, and hear the Doctor’s recommendation, and started him on a low dose at the beginning of second grade. It helped, some, but wasn’t the magic cure we’d been led to believe it to be. And we are still working on finding a medication that helps him.

The meeting was intense. The specialists all took turns, sharing their evaluations and opinions. Everyone was sure to let us know what an amazing, empathetic and intelligent young boy we have. We heard this often. We also heard many difficult, but truthful things we, and they, witness with him. He’s at high risk to be bullied, has high levels of anxiety and depression in school. He withdraws as a coping mechanism. He avoids playing with others, saying often: “I have no friends,” “no one likes me” and “I can’t do anything right.” I cry now, as I write this. Stop and think about this, a second grader thinks this low of himself. He does have friends, and he is so loved. He does so many things right. I try to protect his self esteem in every way I possibly can- but I can’t be with him always.

We got the IEP. There was no question. As a mom, who has worked for four years trying to get the school to see what we do as parents, this was validating. I was completely unprepared though. I didn’t have goals or a vision prepared. I have to submit those today.

His supports and accommodations are all those we have been begging for, since he entered kindergarten. The problematic areas which will be focused on with his initial IEP are as follows: self regulation, emotional regulation, hyperactivity, focus, executive functioning, social pragmatics and of course general education.

I don’t know what this will look like remotely, nor do I know whether they will support us staying remote for the year. They did pick up on his difficulties with transitions, which is our main reason for keeping him remote. I know they are having children with special needs come to school for services, which would be great.

The relief. The confirmation. This wasn’t about labeling him for life. This was about recognizing what a brilliant, beautiful little boy can do, and with the proper supports, succeed beyond his and our best hopes. He is our shining star, and he will go far in this life. Now, time to go design those goals and vision.

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October 2020 in America

Okay, I’m going to talk politics. It’s not to convince or sway anyone; I just want to share what my view is, from my tiny dot on the electoral map, in blue Massachusetts.

Life is currently quite a stark contrast from where it was one year ago. One year ago last night, was my son’s first soccer championship game. It was definitely one of the most exciting evenings for him, as he scored two goals in their winning game. My little second grader learned that night how valuable a team is, and how important his role was, to the team.

Since March 16th of this year, he’s been learning about different teams we are on. His school was shuttered on March 13, and has yet to open back up. We have been remote learning since.

Starting on March 16th, as a family, we tuned in to our Governor’s daily press briefing on Covid. Governor Charlie Baker is a Republican. However, he puts country over party, and throughout the entire pandemic, he’s governed from what’s best for his constituents. He hasn’t fallen for the “red states vs. blue states” drama which has been top down policy from Washington DC.

In April, Governor Baker was overcome when describing his administration’s efforts to procure PPE for our state:

“We have been chasing personal protective equipment and especially N95 masks basically as much as we’ve been awake for the past few weeks,” the governor said, citing the challenges in obtaining orders of the supplies.

Massachusetts had ordered a shipment of 3 million masks from BJ’s, which were “lost” in the Port of New York, he reiterated. The governor said Friday he assumes those masks were confiscated and put in the federal stockpile. Marylou Sudders, the state’s health and human services secretary, has said they were impounded by the federal government on March 18.”

https://www.google.com/amp/s/www.boston.com/news/local-news/2020/04/03/charlie-baker-emotional-response-kraft-mask-delivery/amp

So, my son, husband and I have watched in horror as this played out. We’ve seen countless other missteps by the Trump administration throughout the summer in their handling of the pandemic.

We haven’t been able to hug, or visit, my 92 year old grandma. We used to see her at least every other month. She lives two hours away, and it just hurts so much to know this is how it’s going to be for some time.

See, I’m high risk, as is my grandma. My life has stopped. I haven’t been to a market, mall, or any public place since February. I’m starting to feel pretty feral.

My son has had one play date since this started. His best friend is high risk, with asthma, so we have been extra careful with him.

Other friends have reached out for play dates, but their parents don’t believe in masks, and their child is in the YMCA program for 10 hours a day; with many other children. I worry about the risks there, so have ghosted the mom. I don’t feel it’s her business knowing our health issues; and if they don’t believe in masks, or the threat this virus poses, I really don’t care to spend time together.

I have witnessed my son grow so much over this pandemic. His knowledge of civics and American government is much more advanced than your average third grade student. He is extra cautious with mask wearing, sanitizer use, and social distancing.

We’ve had so much time this summer to learn, and teach him about social justice. His school was instrumental in laying the groundwork with him; teaching him early about Martin Luther King Jr., and many other heroes who stand on the right side of history.

George Floyd and the Black Lives Matter movement, brought up so many questions from him. I knew I had one chance to get this right. Though we don’t have a TV, he somehow saw what went down with George Floyd, at someone’s home. We have spent many hours, over many days speaking about racism, and how wrong it is.

I found a phenomenal book on YouTube, and it really helped. https://youtu.be/LnaltG5N8nE

I hope for a better future for my country. I hope for health for us. I hope we are able to have a leader who cares for us, willingly leading the United States of America as a country; and not “red states versus blue states.” I want to be able to send my son to school; to extracurricular activities, to play dates, and on fun trips to museums, farms and vacations. I want him to have a “normal” childhood. I don’t want him locked up, isolating for another four years. I want to hug my grandma, and all my other extended family. I don’t want to be afraid to go to the beach, the market or the movies. I am tired of worrying about catching COVID, and that being the primary focus of our lives.

Reality is, no matter how much therapeutics, and vaccines are lauded by this current administration, we wouldn’t get the Walter Reed treatment. I can’t take vaccines, not even the flu, due to chronic pre-existing conditions. So, this masked up isolation is my reality for the foreseeable future.

I’ve been involved with politics and presidential elections since I was in college. I’ve always tried to stay impartial, and primarily worked at every campaign since 2004, with registering people to vote. It is our civic obligation to cast our votes. In 2003-2004, I registered so many students at my college with Rock the Vote, that as a thank you, they sent me and a friend to Boston, for the Democratic debate at Faneuil Hall. What a memorable night! To be in a room with 10 highly qualified candidates for presidency was a powerful moment in my life. Since then, I’ve played some part in each election.

I was taught the importance of civic engagement from an early age, by my family, not through school. My grandmother taught me so much, as did my mother and father. I’ve spent time at protests. I’ve stood outside the post office with petitions against overreaching spying through the Patriot Act. I’ve heard Howard Zinn speak, in person, on the Boston Common. I spent a year volunteering with the local food pantry. I’ve advocated for decades for people with disabilities, and the elderly. I’m on a first name basis with our representative’s office. I’ve written letters to the editor.

One thing that has always been a driving force in my life is fairness. I feel everyone should get the same chance, the playing field should be level, at the starting point. I don’t identify with any specific political ideology; what drives me is the urge to see us all treated fairly, with similar opportunities. I cannot tolerate any “isms”: racism, classism, and ableism. I refuse to believe rules apply to me, but not to those at the top of society. I believe in political correctness; because what gives others the right to condemn those who are different? I believe in masks: I wear my mask for you, please wear one for me. I believe in science, because unlike magic, it’s real. I believe good will always win, over evil.

I’m praying my country makes the right decision next Tuesday. I apologize to the world for these last four years. I did everything I could to make sure the misogynistic fool wasn’t elected in 2016, and I’ve done as much as I can in 2020 for the same. Praying for unity, science, sanity and empathy for 2021.

Disclaimer: if you are going to comment on 6% of Covid deaths were only from Covid/ Q sent Trump/ masks cause Covid: kindly unfollow me. You will be blocked. We don’t see reality the same, and I don’t want to engage. Thank you.

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Memories of a swingset…

My father handbuilt my sister and I a swingset; set in the far back corner of our yard. I think I was 5 or 6? I mastered swinging. And reading at the same time.

Our childhood home had a large backyard, with mature gardens. The entire back and both sides of the large yard were lined with old growth lilacs; wisteria and grape vines battled for the arbor off the back of the garage; while a majestic willow could be seen from the path to the beach. There was also a very old, and not very healthy crabapple, great for climbing.

The scents as the world woke up from the winter slumber were intoxicating. I chose to spend as much time on that swingset as I could. Surrounded by the sweet smells of spring, with a touch of the sea mixed in, from the beach just a few hundred yards away…. we were so blessed.

And now, I live in a cottage, a few hundred yards away from the sea. Surrounded by lilacs. With a large vegetable garden plot, with many raspberry bushes.

My son gets to pick them fresh from the bush; they are by far his favorite fruit. They come in for his birthday in July; and he has been in awe each year at the sheer amount he is able to pick at once. He told me sunny raspberries taste better than ones from the fridge, I agree, little one.

We spend hours outside. We have a great big barn at the back of the property that is so much fun to explore. Oh, the possibilities! There are bunnies, deer, and so many different birds to watch. Some days we count planes; find familiar faces and shapes in the clouds.

Other days, we head out on a nature scavenger hunt. Filling a box with treasures only found on our little patch of Earth.

Last year, we raised caterpillars; and watched them turn into painted lady butterflies. My little one saw one; he thinks it’s a baby of the ones we released last year, perhaps it is?

We rent. I’m happy with that. We can’t afford to buy.

I have to find my voice. And ask permission for a swing for my little one. It might help him. I know it helped me. At least we may have some fun. 💜

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I Love You, Mama

Yesterday I woke not feeling well, and feared the day in front of me. I’m responsible for my son during the day, while his father works. This was one of those sick stomach days, and with it came exhaustion. Try as I did, I couldn’t seem to stay awake.

I could tell my husband felt caught between wanting to stay home to help, and needing to go to work for the paycheck. I told him to go, knowing if I wasn’t up to caring for our son, we could go to my parents for the day, as they were home.

What I didn’t realize was how hard the exhaustion would hit; I slept from 8-1:30. Slept right through his Zoom class, and on into the afternoon.

The most amazing thing occurred yesterday. My son took care of me, for the first time.

He called me up to his room, around 9. I made my way up, and found he had made me a bed to lie on, and snuggle up with him. We stayed there watching videos of Godzilla together, as I faded in and out.

He woke me at one point, and put on a favorite reggae song for me, telling me, “I’ll be right back, mama. Don’t move, enjoy the music.”

Next thing I knew, he was back, handing me an envelope. The sweetest boy in the world had written me out a get well card. My heart melted.

Later, around lunch time, he poured me some juice, and served it to me. He was looking out for me, just like I do for him when he’s unwell.

The mom guilt of him being stuck inside on a gorgeous day really got to me, and I finally was able to get up to get us out. We were heading to my parents, and I was driving. I apologized to him for my sleepiness, and having wasted so much of the day indoors.

“Don’t worry mama. I get it. I know when I get sick, all I want to do is sleep. You couldn’t help it.” How did I get so lucky with this sweetheart?

At my parents, my seven year old son was put to work, in the garden and yard. He was operating hand tools, even using pruners. He’s serious about getting the job done correctly, as I witnessed yesterday. Sure, he’s still a seven year old boy- and occasionally still has to be reminded that we don’t run with tools in our hands. But he’s also pruning trees and shrubs, knocking down Japanese Knotweed, ID’ing weeds and plants, and helping plant the vegetables.

I’m so blessed to be the mama of this intelligent, empathetic and loving little boy. 💕

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Sunday Thoughts

Yesterday was a difficult day for me, mentally. I wanted to spend the day working on the garden; digging and turning the beds, and dividing and moving plants. I’m putting a vegetable garden in, and moving my perennials elsewhere. What I thought would be a relatively simple job is turning out to be way more than I’m physically capable of, and that’s really frustrating to me.

Knowing my failed spinal fusion and chronic pain were not up to a day full of gardening, I suggested we go on a nature hike, as we do each weekend. Both guys were into it, and it was the perfect sweatshirt weather for one.

I filled the water bottles, grabbed our masks and packed up some snacks. We were off. We took a different way into the woods than normal, and I thought we were close to turning around… then the boy asked if we could go on a salamander hunt. When asked if I was up for it, I gave a halfhearted “sure”, thinking we were only going to venture a little off track.

Our hike was 13,568 steps or 5.86 miles, according to my Fitbit. My body feels it. It’s a good hurt, an ache of accomplishment. I have to be careful though, as I’m known to compulsively exercise, pushing myself much further than I should. These hikes can lay me out for a few days- so I try to keep moving throughout the week. My family thinks I’m crazy, as does my doctor. But all seem to understand this works for me. I have to keep moving or I seize up.

See, physically I shouldn’t be hiking like this. Mentally though, I need it. If I don’t get out and exercise daily, I can’t concentrate or follow through with tasks. It’s this nervous energy that has to be burned off. I think it’s part of why I understand my son so well. He is the same way. If we hike, he’s not hyperactive. If we don’t, he is all over the place.

Another bonus to getting out in nature for me is that I’m able to think things through. I haven’t had a telehealth appointment with my therapist in a handful of weeks, as my insurance has been switched, and he doesn’t accept my new plan. In place of that missing link, I’ve had to be much more self reliant; thinking things through for myself, as well as being more open with my husband.

See, in the past, I’d keep my mental illness musings to therapy alone, and my marriage separate. My husband is incredibly devoted, and willing to do just about anything to help me, but I oftentimes am too embarrassed to let him in. These past few weeks have changed that, and it’s freeing to finally open up to him.

I realized yesterday on our walk that I was grumpy because I knew I couldn’t do that which I wanted – to garden. However, instead of having a misplaced meltdown, I thought it through, on my own. Once I’d realized that, and accepted it, I found it much easier to enjoy our hike. I even found lady slipper orchids on our walk! They are so rare around here- and super exciting to find!

Lady slipper orchids

When we returned home, I had the chance to sink my hands in the dirt. I dug some plants, divided a Hosta, and turned a portion of the bed. It’s not even a third of the way complete, but I decided to work on it in small stages. A little bit each day, that way I’m not hurting myself too much.

Pre-back injury and surgery, I’d spend a day down in the garden: weeding, digging and amending the soil. Even with a healthy back, I’d be down a day or two with all the physical work. I could never do that now.

My new plan is to make this a mother – son garden. He’s always been such a big help in years past, I know this year will be even better. I can’t wait to see him eat his first Sungold tomato fresh from the vine. There’s something magical about witnessing it 💕

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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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