Hostility and ADHD (A Story From My Life)

Why do people look down on others with ADHD?

It's hard to imagine that not everyone's brain functions the same way when our outsides all look the same. Even among others with ADHD it can be hard for people to accept that someone has different symptoms or diagnosis than you do. Especially when the behavior that ADHDers exhibit from a small clip makes perfect sense. When your problem is self-regulation, it means that almost anything you do can be normal, but it's how the events are strung together that make the difference.

Even in people with ADHD we don't always understand another person who has our same condition because the severity and presentations are differently affected. Some people need medication, others are able to use practical or holistic approaches, and others (like my son and I) need a combination of both. If you need more or less help, some people will berate you. This is because they either feel they are better than, or that it feels like someone is holding up a mirror to their own flaws.

Many people who meet others have founded their belief in the world that everyone else who fits into certain boxes. (Race, Gender, Sexuality, Diagnosis...) When they meet someone who doesn't fit into a single labeled box, they become angry or upset. They lash out, which hurts everyone.

A Story

Keeping all of this in mind, I had an experience this weekend that I feel needs to be shared. I went to my new psychiatrist this weekend for my second appointment. I had talked to some people about anxiety and realized that what I had been experiencing was not, in fact, normal anxiety. At least, it isn't just normal anxiety, but someone else brought up a rare symptom in ADHD, called Rejection Sensitive Dysphoria, that had the jumbled reactions to emotions that I was experiencing (physical pain, strong emotion, and then having a thought connected to the emotion). Because I haven't done any research on it, or had heard of it until the day of my appointment, I figured I would ask about it since I was told that treatment for this symptom was vastly different than anxiety.

During my first appointment, I had told her a few side effects that I was having with one of my medications. It was something that my old psychiatrist (who moved practices and no longer takes my insurance) had been toying around with, but it just wasn't working. It was actually killing the little motivation I had to do things, and was making me uninterested in anything. Not sad, just glued to the bed and being dragged by hyper-focus.

When I walked into this second appointment, it started normal enough. She asked how I was doing, and I told her that I still wasn't doing well with the anxiety meds, but I was developing new coping skills that were helping me in other areas. I told her that I had found out about my odd emotional reaction sequence and asked if it was a good idea for me to be re-evaluated given this new information. I was expecting a yes, no, or "You're a fairly new patient, and I'd like to work with you a bit longer before making a decision." None of things would have offended me, but what I got was none of those responses.

This is where everything went wrong. ABSOLUTELY EVERYTHING. She told me that re-evaluations "simply aren't done" and that I was learning too much about ADHD. She asked why I was so invested in it and berated me for saying that up until a year ago I was practically non-functional. I explained that my knowledge was needed not only for myself, but for my son. This was something I needed to improve so that I could guide him in the right direction. "Why is is that bad? Why is researching coping mechanisms and figuring out how to help my child a bad thing?"

She dodged my questions and told me "I'm exactly the same as you. I was diagnosed with ADHD in my 30's. I have inattentive-ADHD and I have six degrees and a son with ADHD. There is nothing wrong with you."

To this, I want to make a few points. My brain is beautiful, but I don't fully understand it, and for me to be able to cope with that, I need to learn about it. I learn and problem-solve. This is how I cope with everything in my life. Finances, children, illness, everything. Every week I'm researching a new thing and learning about it. The reason I do this is 1) I have a problem with hyper-focusing which often affects the people around me (Yep, laying that on the table) and 2) I love learning about things because it makes me feel more in control by helping me find or create solutions.

Back in the appointment, I started crying. I was crying because as a mom who's job it is to make sure that her child succeeds in the world, I was terrified of the mirror she was holding up to herself. I immediately knew that the problem wasn't about me. It was about her seeing her own shortcomings. She asked me about how I had coped before I was married as an adult, but I was married right after after high school. Yes, in my late 20's I've been married for 10 years, to the same person, and he is my rock, world and everything. I don't think she could understand that I wasn't the same as her, and I wasn't fitting in her ADHD box. I don't think that she could compute that I could be in a stable relationship and work toward family goals despite my family being my job, just like psychiatry is hers.

I walked out of that office in tears. I set up the appointment she asked me to for two weeks later, but it was just in case I hadn't found a new provider over the weekend. I now have a therapist, a new evaluation, and a new psychiatrist. I'm dealing with the feelings of rejection that are coming from my symptoms not being accepted by a mental health professional and am trying not to wonder how this will affect me moving forward. A new evaluation and a fresh start are exactly what I need so that, hopefully, my new psychiatrist isn't tainted by someone who looked at me, not with an analytical eye, but an emotional one.

So what did I learn?

Providers are humans. They're subject tot their own biases and personal flaws, just like the rest of us. We all judge each other, and in some cases it can be a good thing (the guy holding up the bank probably isn't in a good state of mind) and others it can be a bad thing. We often do judge others based on our own experiences, but there needs to be a true acknowledgement that they aren't everyone's experiences. Despite being told to from others around me, I did not report her. She may very well be fantastic with other patients who don't hit so close to home for her. We're a similar age with children and the same diagnosis. I truly believe that she sees too much in me to think objectively and as it stands I understand that she is human first and foremost.

Your Child's ADHD Team (And why they need to work together)

The ADHD Team and Why it Matters

Your child's ADHD team is all of the professionals including your family, medical staff, psychiatric staff, and teachers/school helpers that work with your child. All these people work best when they're in-sync, but it's essentially been like pulling teeth to get permissions for them to talk to each other. Not only that, but I only had a vague understanding of what my son's school was doing in his OT and Speech therapy sessions. It made it frustrating when everyone was asking me questions about what everyone else was doing and my ADHD brain couldn't remember all the details, or I just didn't know. I have binders filled with all sorts of paperwork that made the school's head spin when I presented it all to them. So many different types of evaluations and medical paperwork. But no one reads all of that, and when you're dealing with psychological things it's an every evolving process.

We had lots of different people who had totally different plans and goals for G, and it was hard to keep the tools straight. It was to the point where I had picked one or two things and then was having him do things with each person separately. It wasn't working well for me, and it wasn't working well for G, because he only used certain tools once a week, or once every two weeks, and none of them really went together. Most of the tools were great, but I needed guidance and education to implement them at home, and an actual plan to have all these random pieces of information guide my son toward better executive functioning. I kept asking people for help on his team and everyone gave me tools, but we didn't have a good way to organize them. I didn't know how to interrupt a behavior without escalating my son, and neither did anyone else, because everyone was on different pages or even on an entirely different book in the series.

Coach Mom and Dad

I had finally realized that this team was basically a little league baseball team, and there was no coach. I had to be that coach, and I was failing at it. This failure was leading to me not being able to help my son as he was regressing from the pandemic. We weren't having meltdowns any more, but now we were. These had originally gone away with meds, but having this regression made me realize that he didn't have the coping skills I thought he had developed. So, I had to make a plan. I checked in with everyone on his team individually about my son's emotional regulation and found out that he had a system at school that I had never learned. It was a big part of the reason that he was doing better in school, but since I didn't know about it, I couldn't use it and I couldn't tell anyone else about it. This was a big problem, but it was also a big piece of the puzzle that I needed to make a plan.

Getting Everyone Together

When I finally had a framework, I was able to make a plan that was universal across everyone his team. I made a list of all the tools we had and found a way to piece them together in a way that made sense and was easy for G and I to work through without having to rely on my faulty working memory. I made the plan on a document and tagged everyone in his team so we could finally have a real plan. (More on this in an upcoming post!) Suggestions were no longer repeated and complimented the existing plan. When my son had problems with one of the steps in the plan, I had someone who could jump in and give us another tool that worked with it. Even though they weren't talking to each other, we were starting to be able to move together toward the goals we needed to reach and everything my son was working on (behaviorally) was starting to make sense to him. All these tidbits weren't random anymore.

Working as a Team

Now my son's various sessions are looking different. Yes, everyone still has their specialty, as it should be, but since we have a clear plan on how these bits fit together we can fix problems that need collaboration or give advice that touches into a different area. It means that many of the tools that we have could be moved into a simple chart that G and I could understand and hand out to family, as well as babysitters and teachers.

OT and 2E

Although I've shared G's Story in a previous post, I wanted to touch on one of the biggest tools in our therapy toolbox, occupational therapy. When G was 3-5 years old, a lot of his symptoms we attributed to his ADHD were much worse. Yes, he got older, but it was so much more than that. He didn't play with toys for more than a minute or two, he hated loud noises, and he used to hit the things around him on accident ALL THE TIME, and then there were the obvious focus problems. When we started worrying about handwriting meltdowns in kindergarten we talked to his doctor who referred him to OT.

Now, I mentioned that G isn't very into playing with toys, but it also extends to writing and anything that really requires fine motor skills. (This has turned into his biggest "Wall of Awful") He just never had the patience to sit down and do... well... anything. He learned to read through my husband and I reading him stories and subtitles on the TV, so the need to sit was at a minimum. Now we're dealing with the consequences of that. They're building the entire system of muscles that are associated with writing from his fingers to his shoulders and core muscles. He's still not a fan of fine motor activities, but we can now hold a pencil and write a sentence without a full on temper tantrum. For G, this was a huge win.

However, it's not just his fine motor skills that are a problem. When he was an infant we immediately noticed that he was more reactive to sound than other babies, and as he got older we found him unable to tolerate crowds or even playdates with more than 2 or 3 kids. It was too much for him and we often had to leave early because of meltdowns. His hypersensitivity to sound made a lot of public events very hard to handle, and for a long time we had to carry earplugs with us. When he started OT, he also started a sound therapy program which has helped him tolerate more and tell us there is a problem BEFORE he melts down. The biggest breakthrough we had this year was going to Bush Gardens and my son telling me through a loud concert that he needed to leave. We had all of my husband's extended family with us and he was able to wait for all of our things to be gathered before moving to a quieter spot further into the park. This was just one way we fond out his body reacts differently to the world around us.

G also has problems feeling where he is in space, which means that he was accidentally hitting kids and the wall corners by accident. We originally attributed this to attention. It's not, and it's one of the reasons he can't sit still. His body needs lots of pressure on his joints to understand where he in space so the jumping and running and pushing were all ways his body was giving itself the pressure it needed. This means that we've had to learn how to help him with that and although he's not perfect, it has reduced SOME of the hyper activity we were seeing. We learned that a lot of his hyperactivity was coming from that need for preoccipital input and have found techniques that can help him feel that pressure and learned how to spot the signs that he is seeking input.

This one was especially surprising, but we learned that focusing was physically tiring for my son. Apparently the muscles in his eyes get sore when he uses them to look at things without turning his head. To cope with this, he's been moving his whole whole head and body. Most people can flick their eyes to the side really quickly if something distracts them during a conversation without moving their head, so the person stays in view, but my son can't (at least not for long). So when he wants to look at something and he has to move his head, taking what he was doing out of his field of vision. Out of sight truly is out of mind with ADHD, so this is likely to be impacting his focus as well.

I'm not sure what the future is going to bring, and every week the changes have been small, but I think a lot of the wins we've seen this year have been due to his OT. If you have a child with ADHD and have the ability to go, it might really be worth considering having them evaluated. The quality of life for both him and our family has increased significantly since he started. He's so much happier and better able to cope with the world.

Marriage, Communication, and Progress (Making and Sharing an ADHD Plan)

The Hidden Problem in Most ADHD Marriages

In marriage, and every other relationship, communication is the glue that holds everything together. But how much are you sharing about your progress towards handling your ADHD? As I've spent time learning about ADHD and talking with others who have it, I've seen a recurring problem in the marriage department. Chores. Now, why is this a separate issue from scheduling? The answer is, that the argument isn't about the chores, it's about something much deeper. It's all about needs that have been communicated by your spouse not being met, and a perceived lack of progress toward meeting that need.

What is the Problem?

When you have ADHD, it's hard to see the forest through the trees, and this argument is no exception. As an ADHDer it took me way too long to start seeking help, and my husband was so incredibly supportive that it made me feel guilty. The dishes were done weekly at most, and as you can imagine, that was terrible. I would look at the dishes while my husband was at work and want so desperately to finish them. I would ugly cry with my head in my hands and torment myself on how it should be something easy. Right? So when your spouse brings it up, it's very hard NOT to be defensive (Especially since ADHD is a delay in Executive Functions) no matter how sweet and compassionate they are about it.

What is happening?

1) My husband couldn't see the struggle I was having, so it felt like I didn't care and was just trying to make him do it.

2) I wasn't trying to fix the problem yet.

I was so overwhelmed and I wasn't really taking steps to make it less daunting since it was already "easy". With ADHD, it's not easy. It was never easy, and I didn't know enough about myself to know what to do.

So how do you fix the problem?

Talking about what the problem is with your spouse and making a plan to fix it. Easier said than done, I get it. Doing this means admitting there's a problem to one of the people who you love and admire more than anyone else in the world. It also means seeking help from strangers. Both of these things can be terrifying. If you need to start the conversation over text, email, or chat, do it. Be honest about your struggle and your feelings.

What helped my husband have a better understanding?

One of my husband's biggest breakthroughs with ADHD was learning about the "Wall of Awful" because he doesn't actually experience it, especially to the same extent I do. He didn't realize that there's a mental pain that stops us from doing certain tasks and he certainly didn't know how to help because I didn't either. I had to start researching how my brain worked, and that gave me the ability to talk to him about what I was learning. I started to try new things, and many of them failed, but I kept making plans to succeed and doing research to help me with those plans. He also did his best to support me by asking me how the new things were going and reminding me of the plan.

As I did more research and tried more things, I felt better about myself and my husband began to really admire the effort I was putting into doing better. When the dishes still weren't done, it was easier to be understanding and help me problem solve. The problem wasn't the chores, it was that I wasn't making progress and I didn't have actionable plans to make progress. Now we have "ADHD Plan" meetings where I discuss things I have learned, and how that impacts what I am doing to make things better for myself and the family.

What does an ADHD Plan need to have to be fully thought out and well communicated to your partner?

1) Start with what you've learned.

"Hey, honey! I was reading this blog about ADHD and they talked about marriage and communication."

OR

"I was watching this YouTube video about ADHD and they talk about an executive function fuel tank."

2) What is the problem that this information can help you to solve

"And I realized that I need to be more open with you about what I'm doing to make chores easier for myself."

OR

"I think that I haven't done a good job of spreading out my work and I've been getting overwhelmed in the afternoon."

3) What is the change that you are going to make to fix the problem?

"So I want to sit down with you after the kids go to bed and update you on what I'm doing to try and get better at doing things around the house."

OR

"I'd really like to find a time that we can sit down and come up with a schedule that works well with our family."

4) Listen to their concerns and be open to explaining your reasoning.

Partner: "I really like that idea, but I'm really tired at the end of the day and I don't know how well I can focus on it after a long day. How about we do a weekly update on Saturday mornings?"

OR

Partner: "My work is looking really busy this week. Can you make a schedule and email it to me? If it needs changes I can let you know."

5) Compromise and explain further questions.

"Saturday mornings I have my yoga class. We could do Sundays."

OR

"I know that you're busy, but I need a little help deciding which things need the most attention. Maybe we can make a list of things for the schedule now, and I can send you the schedule tomorrow."

The Results

I'm happy to report that my and my husband's communication is doing really well. He's been great about telling me if I need to bring up something in my appointments. I've invited him to attend future appointments so he can communicate changes that I might be missing. I'm glad that we can be open and honest about how our lives are being affected on both sides due to my ADHD.  It really makes a difference in the kind of help and support I receive, which strengthens our relationship even further.

Special Note:

*Be aware that the ADHD plan will be an ever-evolving and most things will either not work or will need to be changed. Even things that worked for a long time will change, and that's okay. Open communication is what makes the difference.

*This only works well if your partner is willing to communicate with you, which is a big part of being in a healthy relationship. If you find that your partner is unwilling to listen to your plans without an argument erupting, it might be time to consider couple's therapy.

G's Story

My six year old son, G, is twice exceptional or 2E, and anyone that's met him can tell the second he opens his mouth. He's gifted and can tell you about every single Minecraft update that's ever been uploaded along with more than you'd care to know about Archimedes' screws. He doesn't like to play with toys, which has been hard.

At 3 years old he was reading, but couldn't sit still. He was nearly kicked out of two different preschools even without being violent. Just busy, unable to sit down or listen, breaking down anytime someone asked him to use fine motor skills or the room was too noisy. Now, after occupational therapy you wouldn't know about his sensitivities as much, but the ADHD is still very much there.

I've had to grow and learn everything I could about childhood ADHD and giftedness just to fight for my son's education. His knowledge is at a fourth grade level, his executive functions are at a 4 year old level, and his body is 6.

We started the year as a kindergarten boundary exception at the best public school in our area, the school they send the rest of the gifted children to, but he wasn't thriving. In fact, he was becoming depressed, and I watched everyday as the light dimmed from his eyes. His teacher tried so hard to work with him, the school psychologist loved him to death, but didn't know enough about being twice-exceptional and I had to send him my own research when I used psychological jargon above his understanding. Their solution was to send him to Special Ed with 3rd graders. He couldn't stay there.

We found a new school where the lady at the front desk knew what twice-exceptional was and actually used the term herself. They've given him REAL services and have an aide in his regular classroom to help him as needed rather than removing him. He's finally being challenged and helped equally so he can rise to his full potential.