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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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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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Baby Steps

Yesterday was a great day- spent with my son. We worked on schoolwork sporadically throughout the day, interspersed with fun activities; we built a clay volcano, made bubbles, and flew his drone. Unfortunately, the drone is stuck 40 feet up in a tree – so hopefully the wind will push it down in the coming days. Losing the drone was heartbreaking. My son is an incredibly sensitive little boy, and has yet to stop beating himself up over it. The controller glitched. I was watching, he pushed the joystick to raise it a foot or two, and it took off- up and forward. He tried immediately to power it down, but that didn’t work. (Smart child!) He came running to me for help; and try as I did, the thing had a mind of it’s own. Talk about feeling like a parental failure – I couldn’t help with something that simple? Fortunately, he did not breakdown into hysterics like the last time we lost it in the marsh. My father and I were able to recover it that day. We needed a kayak, rake and step ladder, but in less than two hours we were successful. I can’t say the same for yesterday. We can’t even spot it with the binoculars- as it’s the same green as the fresh oak leaves it now rests in. I know how much he’s hurting. I do the same thing to myself. The constant drumbeat “I’m so stupid/ useless/ a waste of space…” echoes in my mind as well. I try to put a smile on my face, and not share how bleak I feel, but I’m starting to realize there’s no hiding it from him. I don’t know how to help him with this. I’m 41, and have been dealing with this my whole life. Fifteen years of therapy hasn’t undone the record on repeat in my mind. I’ve learned to accept it. It’s become part of who I am. The hardest part for me is to stop myself from believing it on bad days. It’s so tempting to allow my mind to slip into the dark tide. I’ve lived from there for so long, that it’s like a comfy safety blanket from childhood. Sure, I’ve tried almost every antidepressant on the market- and none have helped. I’ve been on mood stabilizers and antipsychotics; all meds just numb me. The thoughts are the same. Dark, angry, full of self hatred. Nothing big pharma has to offer helps. I end up on meds, then more meds to quell the side effects of the original meds. All of a sudden I’m taking four different medications, and noticing how much is the same, just a little bit slower. This is NOT what I want for him. He’s an incredibly gifted and beautiful soul. I know he will go far. He is on a waiting list for therapy, with a local agency. Two months ago, prior to the start of the pandemic, we were told it would be about eight weeks. They had the shortest waiting list in our area, but offered so much he needs. The agency offers individual counseling, family and behavioral therapy, social skills groups, parenting groups, and DBT skills groups for children. I’m praying we are able to get him in there. So much of what they offer fits his, and our, needs. DBT has been a life changer for me, and I’ve only been studying the skills for about a year now. When I’m able to catch myself and remember what skill I need in the moment, it’s miraculous. To be able to give that to my son, at the age of eight, would be wonderful. See, I bet, learning these skills at a young age may make them part of who he is. Unlike trying to reinvent myself at forty… The good news is we are getting along much better – there was no violence or back talk when I said those magical four words: “Time for school work.” He came willingly. I’m doing the exact opposite of what his teachers want, but it’s what works for my child, and therefore me. And yesterday? During remote learning? He didn’t once utter “I’m so stupid.” No, he powered down and proceeded to get every question correct. He received much needed, and well deserved praise. Topped with chocolate ice cream for dessert. ❤️
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Free Appropriate Public Education (FAPE)

So I’ve mentioned how my son was diagnosed with severe ADHD, and a communication disorder in May of 2017 at Boston Children’s Hospital.

We have been working with a developmental pediatrician there since, who believes our son should be on an IEP. We do too, and tried for one, back in kindergarten. The school refused to accept the communication disorder, and chose to give us a 504 plan, stating he does not meet the requirements for an IEP.

After the past two months of remote learning, and both my husband and I trying everything within our power to get our son to work on his schoolwork, with absolutely no success; it’s time to put in another request for an IEP. And now, we are ready to hire an advocate.

The administrator in charge of the 504 plans is the vice principal at the school. She tends to make offhand remarks, without much forethought.

Take, for example, “I was in the classroom yesterday trying to get a good read on S and where he is in relation to his classmates. He really does have the most severe case of ADHD I’ve ever seen, and I’ve been doing this for over twenty years!”

Both my husband and I were stunned, and speechless. The two classroom teachers jumped in and tried to diffuse the comment; but the damage was done, in my mind. How could she make a statement like that, and he not qualify for an IEP?

ADHD qualifies students for an IEP under the health qualification.

His 504 plan is useless to us with remote learning. The accommodations run from extra time for classroom assignments, different styles of teaching (visual, auditory and written), heavy work (when he gets too distracted, send him on an important errand), and on the list goes.

To be honest, most of the accommodations don’t help- as his amazing co-taught classroom teachers explained to us in the last 504 meeting in February. They did work for kindergarten and first grade, but he needs to be present for all the lessons this year. So sending him to the office for busy work when he gets too distracted and hyperactive doesn’t work. He ends up losing out.

What’s become most apparent throughout this entire remote learning experience is that he needs 1:1 intervention, to keep him on task, at all times. This is something the developmental pediatrician has been pushing for since day one. It’s also the most difficult and prohibitive accommodation to have written into an IEP or 504. Schools don’t, and in many cases can’t, afford to provide 1:1 assistance- it’s cost prohibitive to hire on a staff member for just one child.

We’ve tried all their suggestions. We’ve had at least two 504 meetings per year, and been treated as if that’s too much to ask. The results have been less than stellar. His kindergarten and first grade teachers were at their wits end. This year was the first year of medication for him; and with it he was placed in a co-taught classroom with the two best second grade teachers.

His teachers have been going above and beyond for him, and us. The weekly emails and Zoom conferences throughout the school closure will be our documentation for the new request for an IEP. They recommended last week that I can do the writing of his assignments for him, IF he can dictate the words to me. After a full week of trying this, we were able to complete 2/4 days of work.

So now I have to organize, research and plan. I have to email the director of the special education department to request an another evaluation for an IEP. Who knows when it will happen, or how. It has to be done though.

We are losing him. I say, “Okay, time to start some schoolwork in five minutes,” as I set a timer on my phone. At the mere mention of schoolwork, he self destructs. Things get thrown, he breaks his favorite toys, tells me and my husband how much he hates us…. and that’s just the beginning. We can’t reason with him when he is like this. We can’t reach him.

I wish I knew how to reach him. Last night, once things had cooled off some, my husband asked him why does he react like that? And that little seven year old boy was able to articulate: “When I get angry like that, I lose control of my body and just can’t stop. I need help mama and papa,” as the hysterical tears started up again.

I did the only thing I knew how. I held him tight, and let him know I loved him.

I’m hoping to find some answers in this book. Has anyone read it? I’d love any and all suggestions!

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What ADHD is for us…

I want to tell you about the strengths based view of the disorder which we use in our house. I came across this view which Edward Hallowell MD and Peter Jensen MD recommend in their book “Superparenting for ADD”. Instead of looking at what our son can’t do successfully, we are choosing to see what he can succeed at, and all the strengths which travel with his deficits.

Edward Hallowell breaks the news of ADHD to kids in his office by explaining they have a Ferrari race car brain, with bicycle brakes; and that is a most accurate description, for my son. Russell Barkley, one of the great researchers in the field of ADD, conceptualizes ADD as a state of relative disinhibition. The inhibitory circuits in the brain fail to work properly. This leads to the 3 core symptoms of ADD, what Barkley calls the holy trinity of ADD: distractibility, impulsivity and restlessness or hyperactivity.

And here’s where Hallowell gets interesting. He says: “I don’t want you to think of it as a disorder, but rather as a potential gift that can be hard to unwrap.”

See, my son is as Hallowell describes many with ADD. He is a highly imaginative child, with a real knack for thinking outside the box. He is fun loving with a crazy sense of humor, just like his grandfather. He is most intuitive, and often comes up with ideas and solutions to problems, while his father and I are still trying to work out what the actual problem is. He has a special quality which draws people in to him, he’s been described often as an old soul.

I worry more than anything that the constant criticism is going to destroy all this specialness inside him. I’m eternally grateful he chooses not to give up in the face of it – and instead perseveres. He’s tenacious.

Energy, curiosity and creativity are nourished and noticed here in our home. He has a tendency to forgive, being unable to hold a grudge for long. He is big hearted and generous. He is highly sensitive, and also has sudden, unexpected insights. He is love, personified.

And In Hallowell’s book, he speaks with a mom. She’s most concerned that all the good will get lost under all the negative criticisms he has had to deal with. “Not just from school, but me, too.”

Hallowell states: “As is almost always the case with parents of kids who have ADD, Sam’s mom is a wonderful mom. It is only natural that she gets frustrated with him now and then and becomes critical…’It can be unbelievably difficult being the parent of a child with ADD, especially before you have it diagnosed. That’s why today is a good news day. You are all finding out what’s been going on and what to do about it. What to do about it won’t be easy, but life should get considerably better for you all from now on.”

I put these words out there to remind myself of my beautiful child, and what a wonderful soul he has. We have our rough moments, but we make it work. I’m so blessed he chose us. 💕

ADHD stands for attention deficit hyperactivity disorder, a complex brain disorder that impacts approximately 11% of children and almost 5% of adults in the U.S ADHD is a developmental impairment of the brain’s executive functions. People with ADHD have trouble with impulse-control, focusing, and organization.

Neuroscience, brain imaging, and clinical research tell us a few important things: ADHD is not a behavior disorder. ADHD is not a mental illness. ADHD is not a specific learning disability.

ADHD is, instead, a developmental impairment of the brain’s self-management system. Common ADHD symptoms include:

  • inattention
  • lack of focus
  • poor time management
  • weak impulse control
  • exaggerated emotions
  • hyper-focus
  • hyperactivity
  • and executive dysfunction

From ://www.google.com/amp/s/www.additudemag.com/what-is-adhd-symptoms-causes-treatments/amp/

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Teacher Parade

Yesterday, my son’s elementary school held a teachers parade throughout the town. We were able to catch it in two spots.

It brought tears for me. Tears for my son and this new world we’re living in. Tears because here was his community; almost every car had someone calling to him by name, waving, and telling him how much they missed him so. Tears because they have to be apart; now, when he most needs them in his life. Tears because I can’t give this to him – and that’s what I want most. I want normal back for him.

I knew we were blessed to be a part of this community- yesterday just confirmed that even more so.

As we pulled away, my seven year old son said “That was special! That made all of this worth it. I miss them so much and can’t wait to be back!” To hear, and see the smile in both his voice and face, lightened the weight on my heart some.

I knew, as we left, that this was a turning point for us. I’m hoping this helps strengthen his resolve for the 19 remaining days of school. I know it strengthened mine to continue with remote learning.

His teachers aren’t just there for the paycheck. These women (and yes, they are all women) are there to teach, but also love our children like they’re their own. The signs, the comments, the organizing…. all of it, for a community that’s been torn apart by the virus.

The teachers put the children first yesterday. We need to keep doing that, today. This world is frightening for adults right now – we must band together and make it less so for the children. Thank you to my sons school for reminding me of that 💕

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Bipolar Disorder

I’ve mentioned bipolar disorder, but haven’t written about it. I’m ashamed, still, 20 years into my diagnosis, to admit I have bipolar disorder. Half the time, I’m denying it’s an issue, and convincing myself the medications aren’t working.

But they do. You see, each time I think I don’t need them, and stop them on my own, I almost always end up back in, in or out patient treatment, while being stabilized on my meds.

It’s an insidious disease. It tells me I don’t have a disorder. Just think about that for a moment.

I have an incredible support system surrounding me, thankfully. My husband has been on this merry go round with me for over two decades. My parents and sister live in the next town; as do my godmother aunt and her husband. All of them have stepped in and helped raise my child, when I needed help myself. Our village is huge and filled with love.

But bipolar. I hate and love this part of me. I love the highs: the creativeness, the expansiveness, the positivity, the energy, smiling. Inevitably, the high is followed by a crashing low: numbness, emotionally stunted, ambivalence, and negativity. And then there’s the mixed states, the most dangerous place for me to be: racing thoughts, nonstop anxiety, irritation, anger and insomnia. The meds are supposed to curb these wild shifts, but they don’t. They temper them. I still cycle, just not as high and low as I would without the meds.

And after twenty years of this, you’d think I’d understand that meds don’t cure everything. I wish they worked; and stopped these lows and mixed states. They hurt us.

See there’s really no place in my life for my own stuff right now. And of course, my depression is on the rise, because of this worldwide situation we are all in. I can’t be selfish like normal though. I mean, I can’t be swept up in the dark tide; I have to be strong for my son, who needs me more now than ever.

So this is my promise: I’m stronger than depression. I can do this. I know you can too. I’m going to wake up each day with fresh eyes, and just try to put the most positive foot forward I can. I know today won’t be perfect, I know I’m going to mess up. But for today, I’m not going to focus on what’s wrong, I’ll focus on what’s right.

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School Refusal

When I became a mother, I was warned that my heart now would live outside my body; in my child.

It’s true, my heart fills with his successes, and breaks with each failure (and right now, he’s seeing so much failure in his life with schooling – and my hands are tied). I’ve followed the protocols- reaching out to his teachers often, updating them weekly on his refusal to remote learn. We have tried numerous creative solutions, with no positive results.

I DON’T BLAME HIM. Not one bit. This is more than should be expected of any second grader; especially one with learning disabilities.

Yesterday we made it to the Zoom meeting, and that’s it. I couldn’t bring myself to even attempt to try to get him to work on his assignments. Not after hearing him tell me all day Monday “I’m so stupid,” on repeat.

See, this whole remote learning has shredded his self esteem. He witnesses his classmates attending to Zoom, in a way he can’t. He is so bright – his teachers and developmental pediatrician both remind us of this whenever we meet; and it’s blatant when conversing with him. His vocabulary is stronger than most adults I know, and it amazes me, daily. Yesterday, he was able to get us back on track while on a hike – without a map or compass. His sense of direction was in tune, better than my GPS. He creatively solves problems for me, all the time.

I am so proud of my little boy. But it’s breaking my heart to see what these insurmountable demands from the school are doing to him, mentally. I feel backed into a corner. My mama bear instincts want to call it all off – but I’m sure that would invite repercussions into our home.

He is a wiggly one, always on the go. At five he articulated to me: “Mama, sometimes my brain says stop but my body keeps going. What do I do?”

We’ve learned to work around these issues. We hike, deep into the woods, many times per week. Nature grounds our home – and burning off energy makes schoolwork easier. We don’t follow any specific diets, but do try to eat more of a whole food approach. We don’t have a TV, and that definitely helps. I know a strict schedule and routine is helpful, but we generally aim to do things around the same time each day.

I try, in my own way, to use life as teaching moments. Like baking a cake, or keeping a nature journal, or tracking our vegetable garden, daily, in our journal. He’s learning so much, elsewhere, and reads on his own now. Doesn’t this count?

I don’t know what I’m trying to say here. I guess it’s just to admit defeat, letting the world know I’m at the epicenter of parental failure. I want nothing more than to protect this little soul – hold him close and not let any of this hurt who he is as a person; but know that goes against what is expected of me, as a pandemic parent, and now part time teacher.

Yesterday, an article from http://www.understood.org showed up in my email. It was perfectly timed.

School Refusal: What It Means When Kids Won’t Do Schoolwork

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My Mom

My mother is an amazing woman. She gave birth to me at the young age of 20, and my sister at age 23. Around her 25th birthday, my sister, at age 2, was diagnosed with leukemia. Throughout my sister’s successful treatment, she mothered us both through it all. My father was there too- working, to keep us clothed, fed and housed. I remember the both of them and their devotion to my new schooling; as well as how they did their best to normalize life as much as possible for me. They were still kids themselves; potentially facing losing their youngest child.

My sister was cured, and went into remission on my mother’s birthday.

But this is about my mom, and her strength. She was the glue, the locomotive that kept our family together, and running smoothly through the chaos. When I was sent to school, my lunch was packed, books were in my bag, play dates organized. She kept my life as normal as possible under the circumstances, and I don’t know how she did it.

She decided to become a nurse, and went back to school. She’s continued her nursing to this day. During the pandemic, she has been showing up for her clients, and caring for them as if it’s just any old day. Her devotion is commendable. I don’t know how she does it.

We’ve always been incredibly close, all four of us. My mother has been my confidant, my helper and my guide. She’s cared for me, when I was unable to care for myself. She’s cheered me on; as a child, and still to this day, as I try to navigate motherhood. When I’m at my wits end, she always steps in with a helping hand – advice, time off, creative solutions, or an encouraging statement when it’s most needed.

She’s creative, and full of ideas on how to tackle problems. She thinks outside the box. She encourages all three of us to be the best people we can. She keeps us on top of staying in touch with important people in our lives. She inspires us to follow our dreams. She loves fiercely and unconditionally.

Happy Mother’s Day to the best mom there is. I love you mom.