Betsy Thompson

To My Sister’s HOA,

I am writing to you, not because my sister can’t, but because I have a different perspective I felt needed to be shared.

You see, my sister and her family love your neighborhood so much, that when they felt they needed to move to keep their son safe, they literally moved just a couple streets down.  They left a pool we all enjoyed for a house with a yard that would better suit their son with visual and cognitive impairments. A house where he could be outside with his family in a yard that is safe for him.

I want you to take a moment to look at my nephew, Kahsay. It’s easy to hear about someone’s child with special needs, but it’s another to lay your eyes on him and to see that he is a real human being. Not just another person’s child, but a child in our community. A child who is loved. A child who brings joy. A child who is your neighbor.

You see most don’t even know when they encounter Kahsay that he is a miracle.

My sister and her family adopted him from Ethiopia almost 6 years ago. After having three biological daughters, God called them to grow their family through adoption. Jill and Jason knew God had a son for them across the world.

What they didn’t know was that their son would come home and after a few things didn’t seem quite “right” for a child his age they would seek out doctors and he would have many tests.  What they didn’t know was that a doctor would look at them and tell them that their son’s scans showed massive deficits. They were told he would not talk.  They were told he would not walk.

God surprises us though, doesn’t he? This child that “would never walk” stood up one day and took off. This child that my sister never had thought about needing baby gates or fences stood right up on his God given feet and took off (BTW, if you want to see the very moment this happened take a look here:  The Day Kahsay Walked)

Thus began their journey to make sure he could enjoy the world around him while being able to stay safe.

While Kahsay is a miracle, his world is still so small.  He is cognitively and visually impaired.  You can imagine that for a child with these kind of disabilities the world around him can be scary.  His family celebrates when he explores, but watches cautiously as there have been moments he has fallen and lost his front teeth, slipped and hit a coffee table resulting in stitches, and other such bumps and bruises. When my sister’s family moved into their new home they knew that they would need a fence for Kahsay to keep him safe, but they desperately wanted to allow him the freedom to explore his surroundings like any other 6 year old might.

Now, let me tell you about my sister. My sister is someone who takes pride in her home. She thrives on decorating and she is constantly creating with her home as her canvas. She has mastered the art of design on a dime, and knows how to find treasures and unique pieces to pull a space together. She is a woman who not only wants to protect her son, but a woman who wants to create a beautiful space inside and outside of her home.

My sister and her husband knew that there would be discussions about the type of fence allowed.  The fence the board voted on as “allowed” to keep her son safe (a son none of them met, worked to learn more about, or asked questions about) is one that is not only meant for a farm but is also unfit to keep her son safe.  When she asked for more understanding and clarification on the process to choose such fence she was met with “The Board stands behind this decision.” Period. Done. Questions unanswered.

One might say that they should just move elsewhere, however your neighborhood was one where their older daughters could continue to attend their current school and was within the school lines of one of the two schools that are the only options to best serve Kahsay and his disabilities.

If my sister chose to build a pool she could choose any fence she delighted.  However, if she is choosing to protect her son she is given one option that isn’t even a good fit to protect him. It seems to me that if a fence is allowed that the HOA would want to make sure it was a fence that was aesthetically pleasing, and also did the job.

My question to you is “Would you want this to be your fence?” Is this a fence you would want your neighbor to put up? Is this a fence you would trust to be safe and secure for a child who is visually impaired? Did you ask my sister for recommendations?  Do you know that the horizontal beams in this fence scare them?  Kahsay has proven he will get up and walk without warning, so who is to say he wouldn’t get up and climb? He also has an oral stimulation, and there is fear he will put his mouth on this fence, which is clearly not safe in the least.

My sister’s family doesn’t want to break rules.  They want to live in a neighborhood they adore, in a community they have been welcomed, and at the same time allow their family the ability to be outside with their son and not worry about his safety. They want to be proud of the way their house looks, and we know that this is also important to those who live near to them.

To many it might seem like “just a fence,” but for my sister and her family it’s another roadblock.  It’s another issue to fight for or have to settle on.  I have watched my sister and brother in law fight for this sweet boy since they day they saw his face on a referral letter they got 6 years ago. They have fought to keep him healthy, safe, and thriving.  As a sister who has watched them fight, because things have rarely come easy when it comes to Kahsay, please consider allowing them to keep their son safe while providing a home that is something they can feel proud of.

We know that the purpose of an HOA is to manage what happens in the neighborhood so that certain rules are followed to keep our community looking nice, running smoothly, and that it is a safe place for all. We are appreciative of the work you do (because it is definitely a job I would never want). It is an important job and it is a necessary job. We ask that you take a look at your decision and evaluate if the choice is one that does keep the neighborhood looking nice and is it one that is safe for ALL of those in the community.

This is more than just politics and neighborhood rules.

This is further than the policies in your handbook.

There are moments it is more important to do what is good than to do what you think is “right.”  Today is the day to do something good.

I am currently sitting in Starbucks trying to work as I wait for my Adderall prescription to be filled. I find myself going from chatting on Facebook, emailing our designer about new light fixtures, and trying to promote a fundraising event I am hosting.

I feel like I am doing things, but I know I am wasting time.  I know I am working inefficiently, yet I am trying hard to focus to get things done that are on my list.  I know what I need to work on, but I cannot prioritize those tasks to save my life.

And so I check my phone to see how much longer until that prescription is filled…

Over the last couple of weeks I have read more and more comments and posts from people about how ADHD is fake. That it is made up.  Over-diagnosed. A result of diet and lack of exercise.   And as I sit here in this coffee shop it brings me to tears that people think they have me all figured out.  That if I just ate better, exercised more, or maybe didn’t check my phone so much this daily struggle of mine would just be fixed.

Stop.  Please stop it.

There is so much more about ADHD that you are missing.  I bet most of you didn’t know that ADHD has three types. That the reason I wasn’t diagnosed as a child was because I don’t fit into the “typical” category most people place kids who have ADHD.  I actually bet you that for as many kids who are misdiagnosed as ADHD there are equally the same number of kids who aren’t even considered ADHD. We fly under the radar with passing grades, fantastic behavior, and don’t even see the effects of ADHD until we hit adulthood.

You see, I have had ADHD my whole life.  I didn’t have the diagnosis, but I have always had ADHD.  I had it through grade school when I couldn’t keep my room clean to save my life, but I somehow aced all of my tests.  My brain wasn’t stimulated by picking up my room, but I loved to learn and school came easy.

I had ADHD when I was in high school and had 2 hours of volleyball practice a day. That daily exercise couldn’t do much to help me when it came to misplacing my car keys, keeping my locker organized, and time management.

I had ADHD when I was on the Weight Watchers. I was eating healthy, yet the only thing I could do to stay on track was to focus almost 100% on my points. My ADHD couldn’t be successful unless I hyper-focused on my nutrition, which meant other areas fell apart, and eventually I exhausted myself with burnout.

I have used essential oils that might take the edge off or calm me down, but they don’t take ADHD away. They didn’t “fix” the problem for more than 20 minutes.

And don’t even get me started on the doctor that looked at me and said “hmmm, why don’t you just try some deep breathing exercises?”

ADHD is as real for me as the sweaty palms I get when I am nervous, the overstimulation I feel when I am touched too much, the anxiety I feel when there are too many noises all at once, and the mental exhaustion I hit at about 11am which makes me want to shut down and take a nap.

And you know who else it is real for?  My husband.

He has watched his wife shut down, he has seen her frustrated with not being able to focus on how to accomplish a task, he has seen her ignore every other responsibility as she tries a new stimulating activity, and he has watched as she instantly relaxes as she draws or paints or crochets.

You know who else it is real for?  My kids.

They have seen their mom lost her S!@#$ and come back to them apologizing because the constant need for her was overwhelming.  They have seen their mom be frustrated with forgetting important dates at school or question why she can’t follow through on a chore chart.  And they have watched their mom sit down with them for hours while they make a mess but create beautiful art or try a new science experiment.

I am not saying that ADHD is not over-diagnosed at times (which I have a lot to say on this but that’s for another day), but I am saying to stop calling it fake. Saying it is over-diagnosed is completely different than claiming it is fake altogether. The two concepts are completely different, and one should never be used to defend the other. Ever. Every time you say it is fake you tell someone like me that I just need to get my !@#$ together, because there should be no reason I can’t.

Every time you say it is fake you tell someone like me that I just need to get my !@#$ together, because there should be no reason I can’t.

And you are right.  There is no reason I can’t.  However, there are resources, tools, and coping skills available to me. I take hold of these and hold on tight. I share with my husband what I need. I make lists. I set boundaries. I am certain to make sure self-care is first and foremost.

And you know what helps even more? Adderall.

Meds aren’t for everyone, but for me they are.

Imagine with me for a minute that you are trying to watch your favorite TV show. And as you are watching other TVS around you start to turn on and play other shows. You want to keep watching your show, but the noise and the distraction become overwhelming.  There are three choices here. You have to work SO hard to focus on your TV if you really want to make sure you don’t miss anything, you get so overwhelmed that you turn in circles watching all of the TVS, or you simply pull the plug on all of them and shut it all off.  Even the show you really wanted.

Now imagine for me that you found the plug that all the other TVs were plugged into, except yours. You pull it. They all shut off, except yours. Now you can watch your show. You can pay attention without the mental exhaustion, and when it is done, you can turn it off and turn on the next TV.

This is what Adderall does for me. It turns off the noise of everything else so I can focus on what I need to. It calms me down and helps me prioritize and tackle things one at a time.  However, Adderall doesn’t just take away my ADHD. Most days it just takes the edge off and I still have to work hard to keep myself on task.

I have learned to love my ADHD amidst how much I hate it. I have learned that it is where my creativity stems from and it is what drives me in my passions.  However there are many days I get mad about it.  Days I ask God why he made my brain the way it is while my friends and sisters have clean homes and organized papers. There are days I feel that I am failing my husband because I can’t get the laundry done, and I am disappointing my kids because I forgot about another school activity.

Having ADHD comes with enough of its own shame, and the last thing those of us need who have this very real diagnosis is for those who don’t to seek to understand, to stop assuming you know all about diagnosing, that we need to stop taking meds to alleviate symptoms and start eating better and exercising to “cure” ourselves.

Let me show you the face of someone who struggles day in and day out with the complexities ADHD brings, and I will also share with you someone who celebrates the gifts her ADHD has given her, but don’t you dare say her ADHD is fake. Don’t you dare say her struggles aren’t real.  Don’t tell her that what brings her the greatest shame, but is the source of her greatest pride isn’t legit.

Before you want to share all of your thoughts about how and why ADHD is fake let’s talk first.  Follow me for a day.  Come have coffee with me. I’ll invite my husband too. Let us share with you the reality of life with someone who has ADHD.  Let us share with you how ugly, chaotic, messy, beautiful, exciting, and very REAL ADHD is.

Let us share with you how ugly, chaotic, messy, beautiful, exciting, and very REAL ADHD is.

Enough hyper-focus for one day.  I’m off to pick up that prescription…