Breaking Free: Setting Boundaries, and Choosing Growth

It’s been a minute. I intended to share more of what it means to be neurodivergent and to offer others resources to help themselves. To those of you that have offered support I can’t tell you how much that has meant to myself and my family. To those of you that have found my content and my personal story helpful, my heart is warmed to know that we are on similar paths and that my words were impactful.

My family and I have been processing a lot over the last 6 months, dealing with the fallout of speaking our truth. There were moments that I wondered if we had made a mistake. If my words had destroyed relationships. But as we have dealt with what seems like never ending drama, we have realized that these people did not ever care to know who we really were. They had an expectation of who we were and how we should behave, and we had outgrown their mold. This drama had everything to do with their inability or refusal to really see us and respect us as our true selves. 

That little voice of self-doubt was the remnant of my people pleasing self that I had walked away from. The only people in my life that I have that level of responsibility to are my children and my husband. My husband and I have a duty to provide our children with healthy relationships with healthy adults. That includes modeling that behavior in our own relationships. If the adults in question refuse to try to live healthy lives, if they refuse to respect who we are, who our children are, we certainly can’t force them.

What do people do when they find themselves surrounded by unhealthy individuals? Those that hope time will heal our wounds, because we’ve “been through a lot”, but also refuse to do any self reflection or take ownership for their part. We have tried to talk to them, we’ve asked for space, I have written a letter. We have read books, found helpful websites, watched content creators on both sides. We’ve both spent so much time with professionals processing. I still find myself wondering what more can I or my husband do?

Give me a fucking break. Actually give yourselves a break. We all deserve better than that. 

If you ever find yourself in this position, surrounded by the types of people that see you as a wounded creature, but never mind that they did the wounding, they are not for you. When those people are your family of origin, that is a supremely hard lesson to learn. Everyone is worthy of really being seen and respected, especially by those who proclaim to love us. If you have tried and all it does is create more distance, it’s time to walk away. 

My husband and I realized that we need to let go of this hope that his family will realize what their actions, recent and long past, have done. Holding on to that hope serves no one, and does nothing but cause us and our children pain.

So the boundary is: get professional help, or leave us alone.

To my husband’s family of origin: please seek out someone professionally trained who can explain to you why your actions have created this distance. Find someone who can give you perspective and encourage your own growth. Feel free to talk amongst yourselves all you want, but your echo chamber is not even serving you.

To the extended family that we know is watching and talking: please encourage personal growth and self reflection. Doing otherwise just feeds the toxicity. Those of you staying out if it, I hope you are enjoying the show.

I debated on whether or not to share certain things. I have had to fight the urge to aggressively defend myself and my husband. It’s truly not worth the energy. We have to weigh whether sharing ourselves so publicly will benefit us or hurt us. But I believe that sharing this will help provide some closure and allow us to focus on the future. We want to spend time with the people in our lives that are supportive, that are willing to listen and understand, even at a basic level. People that bring joy to our lives and enjoy seeing us become who we were always meant to be. We want to celebrate with our growing supporters and have the time and energy to support them in return.

Sharing Your Diagnosis With Family: A Cautionary Tale, Part 4

This is a multi part story of the insane falling out we had with my husband’s family. Click here for Part 1, Part 2, & Part 3.

When Dave and I got home we talked for a long time. We were honestly in shock. How could what started out months prior as a request for support and understanding turn out so badly. It seems that at no point did Dave’s siblings consider how he felt, or question why he may be saying any of these things to them. All of his family immediately went on the defensive, then conflated a conflict with one sibling with his request for help then switched to attacking him and I. That evening began with Dave attempting to protect his wife and son, but when we got home we understood that this whole thing had nothing to do with our Autism or me at all. It was all about his family’s dysfunctional dynamic, their avoidant behavior, and an unwillingness to see outside of their world view.

We had earlier received a text from A stating that she wanted to continue the conversation. It was surprising, but welcome. We thanked her but it felt odd as she did not really seem interested in a resolution that night and seemed more interested in angrily defending herself.

After we left G called and texted Dave over and over again. Asking Dave to come back and go for a walk with him to get cigarettes. His wife K also texted Dave, she seemed to be defending her husband, while also admitting he may have been out of line, but it’s not clear what she wanted from Dave.

By now I felt the need to protect my husband from his family. With Dave’s approval I sent a text to the main family thread essentially saying that Dave put a lot of effort the last few weeks into meeting his family where they were when asking for their support and understanding. That he did not feel heard, and was met with disrespect. I encouraged them to do their own work in order to meet their brother where he is. Essentially, we were looking for an actual conversation, not a dogpile.

A’s response was sarcastic, angry and defensive. Saying “nope” & “bye” and that I couldn’t send texts like that and that talking in person was work. Never mind that what happened that night was not a conversation or work. It seemed like an attack because we were out of line, from their perspective. We are not interested in being talked AT in that way. If they want a conversation they certainly weren’t in a state to have one. I let them know that when they are willing to meet Dave where he is, without judgment, that he MAY be willing to talk.

I’ll let C’s response speak for itself:

“Free Dave! Give me my best friend back. I love you David.”

“Horsey Fat Dick!!!”

This is the same person who essentially ignored Dave months prior when he shared that life had been challenging. I hope he gets help for his alcohol issue at some point.

G’s response was to continue to demand Dave come back and talk with him. Seeming to think that because they were brothers that Dave owed it to him. I would argue that because they are brothers that he should have stayed out of his siblings’ conflict, instead of taking sides in a situation he knew next to nothing about.

I did ask K to talk with me when she was able. My goal was not to resolve the conflict between the siblings, but she seemed to think that was the case. My goal in reaching out to her, and honestly at every step, has been to preserve my children’s relationships with their cousins. It is worth noting that she, as the only person willing to really facilitate a healthier conversation that night, also married into this family. I tried to relay that I understood first hand what it meant to not have a relationship with cousins because our parents could not get their crap together. She was unwilling to talk further.

There’s been nothing but crickets from M. The person who started this entire mess. She got what she wanted. Everyone is on her side and we are now the scapegoats for the breakdown in the family. In fact, I would say that she has distanced herself and her children from us even more. Pulling her daughter from her Girl Scout troop when her daughter wanted to stay. She manipulated everyone to make herself out to be the victim. In a completely avoidable situation, that she had every opportunity to try to resolve. Can’t say that I’m surprised though. Pretty standard of an avoidant person.

One of our therapists suggested that Dave’s family, as a whole, were having their own version of a meltdown. I have to say that idea totally fits. Dave has done a lot of growth over the last 18 months and when someone grows as much as he has it’s hard to continue in the role you’ve been put in for so long. Dave doesn’t fit in the box they have for him, so they would rather banish him than hold space for him.

Dave’s brother G did indicate that he wanted to speak while they were still here, but flaked out. Essentially giving a non committal response of potentially talking to Dave later. It’s been months now…

Dave’s sisters have essentially ignored him since that night. He isn’t surprised, but he had hoped for more, especially from A. I am happy to see that M has finally gotten the relationship with her sister that she so craved. It’s just a bit sad that there had to be a death and a huge falling out in order for that to happen.

Dave’s parents are actually trying pretty hard in the ways they know to bridge the rift that has occurred. We definitely feel some disappointment in them, and there is some resentment on Dave’s part. They did separately allow Dave to talk, though I’m not sure they understand how deeply this has affected him. With a lot of work and time they could well be safe people to share our lives with. Though they do have to be willing to move beyond the superficial in order for that to happen.

As for Dave, he tries to just carry on with his life, but I can hear his sadness when he says “it is what it is.” He is so incredibly hurt by their behavior. He feels betrayed and disregarded by his siblings. He feels as if he doesn’t matter to them. He has considered reaching out to them, but they have shown him, by their actions and words, that they currently can’t care about anything beyond themselves. There is nothing that tells him that things would be different if he were to try again. Afterall, he was the only one making any effort in the first place.

My children, and my nieces and nephews, feel like a separate situation. These kids shoudl never see this type of behavior. They should never wonder if what has happened will happen to them. Dave and I are honest with our children, age appropriately, about what has been going on. Even before we said anything, my 6 yr old son was intuitive enough to know that his relationship with his cousins was at risk. “Mommy, will we ever have another cousin pool party?” Imagine answering that question, after a conflict like this, when you were hoping for understanding and support. My daughter actually talks to me about things. She lets me know how she feels and what’s going on in her life. What she has told me of her experience of that evening and her limited interactions with cousins since is quite concerning.

Most of the 11 cousins were in a room talking when all this was going down. “The cousins know that when Uncle C & Uncle G are like this, it’s because of alcohol.” Another cousin told my daughter that they have noticed how their mother, M, treats me and they don’t like it, and that every time they have asked her about what happened they are ignored. These kids shouldn’t have to turn to each other to get honesty. They have more awareness and understanding of things than their parents are giving them credit for. Trust me, as someone with firsthand experience, they will blame us when they become adults. When they realize that they don’t have relationships with their cousins because of the issues their parents weren’t willing to work out, they WILL be resentful and disappointed. I would rather be honest with my kids now and risk their sadness or anger, than to risk their resentment as adults.  Frankly our children aren’t angry with us. They are angry and disappointed in their grandparents and their aunts and uncles.

And myself? Being the last spouse to join a large family is hard enough on its own, but to realize that you have been unfairly judged the entire time, is heartbreaking. I did initially feel some shame and responsibility for the “chaos” as K put it, especially regarding the kids. Thankfully I have seen a niece a few times afterwards and she knows that I love her. I did tell her that we, and Grandma, will facilitate relationships as much as possible. It was not my place to say anything more. As our therapists and a friend have said, I am not to blame here. There has to be some responsibility on all the adults in that space for what happened. Just because someone had too much to drink or was angry doesn’t mean they get a pass. Just because you said the right things or nothing on one occasion, does that mean that your actions, or inactions, absolve you of responsibility. Abusive behavior is still abusive behavior regardless of the state you are in when you commit it. Your justifications will only perpetuate the bad behavior.

Writing and talking about things is how I process and I feel like I am finally coming out of the processing stage. I’ve talked about this ad nauseum with my therapist, and some trusted people. I waited months in the hopes that Dave’s siblings would make any kind of effort. I didn’t want to risk angering them and burning a bridge before it was built. Personally I have no interest in a relationship right now. It’s also came out in all this that there has been some judgment of me and of my relationship with my husband. I don’t have any interest in people who would rather silently judge me than be real with me. If months or years later Dave comes to me and says that he does have an interest in a relationship with any of them, I will cautiously support him. Just like he has supported me when I reconnected with my brother.

SO, to bring this full circle, when sharing your neurodivergence diagnosis with family, you need to be keenly aware of their shortcomings. I have seen so very many people talk about the ways in which their family and friends have let them down, or shunned them, when they shared their life altering diagnosis. It truly is like seeing a unicorn when someone shares that their family became supportive and understanding. We had hoped that for us things would be different. We thought that by seeking advice from professionals and doing so much research that we would be able to bypass the hurt that so many people have experienced. Unfortunately what happened to us is very typical. Ask yourselves, are they really willing to learn about who you are? When you start to unmask will they feel threatened? How supportive can they actually be? Can you trust that they won’t use your diagnosis, your disability, against you? Because these people certainly did just that. Use our story as a lesson.

Be so very cautious, because even those who should be the most supportive can turn on you in an instant.

Sharing Your Diagnosis With Family: A Cautionary Tale, Part 3

This is a multi part story about the insane falling out we recently had with my husband’s family. Click here for Part 1 & Part 2.

To continue on from my last post, I had joined my husband at his parents house where his siblings and there spouses had essentially ganged up on us. We definitely felt attacked. I was at the end of my rope and went into an autistic meltdown. This was probably the biggest, outward, meltdown I can remember having as an adult. If you would like a great explanation on what a meltdown actually is and ways you can watch this video from an amazing autistic YouTuber, Mom on the Spectrum.

I sat there in a dark room melting down for a short while. I could hear my husband Dave in the hallway saying to T and K that this was a meltdown and to let it run its course. He later came in and helped me calm down. I felt so embarrassed, hurt, angry. But mostly I felt confused.

After a short time I left the room to look for my SIL K, as she seemed the most grounded person there, to thank her and to try to finish what I was trying to say before I was triggered into the melted down by my BIL’s G & C. K seemed to want to actually talk so I agreed to go outside. On my way outside I noticed my niece crying with her mother M. It felt horrible knowing that I may have scared her. Later after some time and inner work I realized I did not have to hold all the responsibility for the emotions of a child.

While talking outside with K it became clear that she had a very limited perspective on what had been going on the last few months, and more. She could see that things were weird and said she was uncomfortable about the sibling visit that didn’t include us. Her questions seemed so far away from what Dave and I had been focused on. Also, what little she seemed to know of the current situation very much felt like it was from M’s perspective. She kept going back to the idea of me specifically feeling left out and asking why I didn’t talk to her. Keep in mind that she “has a good relationship” with M, and K and I haven’t really been able to connect in that way. I don’t understand why she thought that I would be able to talk to her about any of it. Remember, this entire situation wasn’t about me feeling left out, it was about my husband’s siblings completely disregarding him, his family, most importantly his feelings, and my husband reaching out to his siblings for support and understanding. I do really respect that K made an effort that night to understand, but what has been going on is not something to work through in one conversation. 

While I was talking to K my husband was sitting inside in the hallway, in shock I suppose, trying to compose himself. He overheard something kind of cemented that his siblings don’t care about him. He overheard G and C make themselves another drink and talk about how “wrong” Dave was. How can you be “wrong” about the way you feel, as Dave has said.  All while his father, who up until this point was MIA, sat in the room watching TV. For context Dave went to a small high school with C and was supposedly good friends with him. Afterwards Dave then heard M crying while G told her over and over again that he was on M’s side and Dave was wrong. Listening to his brother say these things was so hard on Dave. Since then he’s said quite a few times, “you can be supportive of one sibling without throwing the other under the bus.” G finally noticed Dave in the hall and asked how long he had been there. Dave was so hurt and disgusted at that point that he knew he couldn’t engage with G. He simply said that he had heard everything. G immediately became defensive and pleaded with Dave to go for a walk with him to talk things over. Dave held his ground and repeated some form of “I am not talking to you like this” as G followed Dave outside.

While I was talking to K, which I felt was beginning to be productive, T came over and wanted to participate. K fell silent and let our MIL talk. I was still feeling agitated and was uncomfortable, knowing how defensive T had been in the past. Recalling the specific words here is difficult as I was still in the realm of a meltdown, but I recall some things quite clearly. As T was talking I began to stim by rocking, trying to regulate myself, she then requested that I look at her. T had previously said she’d read the materials we gave them and difficulty with eye contact is definitely something covered. I believe this is where I first said “for fucks sake”. It is a phrase I tend to repeat when I am beyond frustrated. It could be considered a form of echolalia. Her request for me to look at her was too much and I got up to pace. I let her know that her request was out of line. When I turned back I saw that T’s hands were thrown up in exasperation. I was beyond tired and quite angry at this point. I called her out for the exasperation of my very natural autistic stimming and she claimed that her hands are her stimming, clearly not understanding what a stim is. I very assertively let her know that that is not stimming and this wasn’t about her. She claimed that it is about her because “it’s about family.” To which I reply “For fucks sake T it’s never been about you.” This was probably repeated. T asked me a question, about what I can’t recall, but I knew I wasn’t able to engage anymore.

Dave then approached to support me as he had heard me raise my voice. He was followed by his brother G who immediately switched from pleading with his brother, to aggressively yelling at me, demanding that I answer his mother’s question. K tried to get her husband to stop, but he was beyond reason. Dave actually physically stepped between me and his brother. I told Dave I couldn’t do this anymore and we just walked away. We gathered up the kids and left.

I remember stopping in the front walkway and all four of us hugging and crying. 

I honestly couldn’t believe what had just happened.

Sharing Your Diagnosis With Family: A Cautionary Tale, Part 2

Click Here for Part 1

The dysfunction in husband’s family had become appallingly apparent when my husband’s brother G was here for a visit. Dave initially enjoyed visiting with his brother and his family, with just our son as my daughter and I were at the Girl Scout camp. That is, he enjoyed it until his sister M arrived.

As she did with me, she was also pretending everything was fine with Dave. It was so very uncomfortable for him. When I arrived back from the Girl Scout camp he left his parents house to help me unpack my troop and so that we both could decompress. He shared how hurt and confusing his sister’s behavior was. Because M had one of the cousins with her when she picked up her daughter my daughter so desperately wanted to go to her grandparents house and see all her out of state cousins. We agreed to let both kids go to their grandparents house for dinner and cousin pool time. I was too drained to participate, while Dave needed a break and wanted to stay with me. I was hesitant to let the kids go because of how tired I knew they were, but I had hoped that with my MIL T’s newer understanding of Autism she would be able to manage the kids. 

When Dave went to pick up the kids a couple hours later he walked in to see our son having a meltdown. He said no one appeared to have noticed our son in this state. Dave went to comfort him and investigate the situation. Dave’s parents only seemed to notice our son’s state when Dave walked in the door. Dave explained that it was an autistic meltdown, and not a tantrum. His mother gave a very brief overview of events then turned to our son and began interrogating him in a very loud and direct voice. Dave immediately interjected and advised her that this was not an appropriate way to manage a meltdown. During all of this it’s apparent that the alcohol had been free flowing all evening. Dave was already upset and he admits he did not handle himself well. He yelled at his mother because she was not handling the meltdown well. He has since apologized to his mother. Dave learned that our son hadn’t even eaten yet. If you know anything about Autism you know that lack of food and fatigue can lead to a meltdown.

As Dave was fixing food for our son he watched his sister M happily float around. Dave assertively and loudly addressed M saying “I need you to take some ownership over the conflict with Rachel and work towards finding some sort of resolution” He said that everything was chaos after that. 

His parents ushered all 11 kids into another room and just let the siblings and spouses go at it. Dave immediately felt attacked by everyone, as if they had been talking about the situation without us and were aligned. He told M that she needed to say to me the things she was saying there. M indicated that from her point of view there wasn’t anything else that needed to be done, “I don’t need anything from her.” Really not the point but, ok. He tried to share how he had been feeling left out, but he was repeatedly interrupted and he would just stop talking as they all went around and round accusing Dave of acting inappropriately and wrongly putting blame onto M. What started as Dave trying to resolve a conflict with his wife and his sister and share how he felt, had devolved into an attack on him and a vent fest for the rest of them.  He likened it to a Kairos retreat.

The longer that Dave was gone I had the suspicion that things were not going well. My kids had school the next day and I intended to go pick them up. By text Dave let me know that he needed help. “We have heard M’s side of the story, what is Rachel’s side?  Why isn’t she here?”. His siblings and spouses were pushing for me to be there and he was at a loss. I know he has a tendency to shut down in heated situations and he likely felt overwhelmed. I also knew how close to a meltdown I was, why I didn’t go in the first place, but seeing Dave ask me for help, I knew I needed to go. Dave later told me that he was thinking, “They don’t know what they are asking for.” You could say I delivered on that thought.

When I arrived at my in-laws home they and the kids were no where to be found. Just the siblings and spouses a the table and it was obvious that most of them were drunk; glasses in hand, purple lips, bleary eyes. I stated that I couldn’t have a conversation if most of them were drunk. A and G’s wife K said that they were sober. In retrospect I can’t be sure of that. K, and to a later degree A, attempted to facilitate a conversation with little result. It was an immediate attack. For some reason one of the first things asked of me was why didn’t feel welcome there. That wasn’t why I didn’t go earlier, but I’m sure you can see why I wouldn’t be comfortable there. It didn’t matter what I said either, in response to that question or anything else I tried to say, I was interrupted repeatedly. They certainly weren’t interested in hearing my side.

G was loud, antagonistic, and at times aggressive. More than once he got out of his chair and loomed in Dave’s direction. Dave genuinely thought his brother was going to hit him. For what, I can only speculate. Surprisingly A was on the offense in the things she said, something that surprised us both. M was dead silent the entire time and just glared at me. M’s husband C was up to his usual drunken belligerent behavior, except he seemed to have free rein to focus it all on me. It was insult after insult, sarcasm, and overall dick behavior, with no one batting an eye. At one point I said “fuck you C” and I was immediately jumped on for my language. Never mind all the things that C was saying to me. Apparently it’s ok to insult someone over and over, as long as you don’t curse. One of the few things I actually was able to get out was an apology for raising my voice and to say that I was not angry with anyone there, with the exception of M. The reaction was bizarre, stunned silence, then right back to all the shitty behavior. It was as if they had never heard someone apologize for their behavior. 

Dave and I sat there silent for a while as the rest went round and round. I was overwhelmed and just left the table to look for my MIL T, hoping that maybe she would put a stop to her children’s shitty behavior. I felt so close to a meltdown and this was clearly not a safe space for that. We were in the hallway and I was crying, trying to explain that I couldn’t do this while they were all like that. As T tried to console me Dave came over and vented about his siblings, calling M a spoiled brat, which then turned into me trying to calm him down. I decided I had had enough and needed to leave my in-laws house. But I felt the need to thank K and A for attempting to facilitate a conversation. It did not go as planned. 

As I approached I don’t think I had said more than a few words before C said another sarcastic insult, with G practically on top of it with another antagonist remark. 

I. Lost. It. 

With meltdowns there is no stopping them until they have run their course. Aside from trying to avoid pushing someone into a meltdown, which is very much what it felt like Dave’s siblings were doing. When a meltdown occurs the only thing that someone can do, from the outside, is to provide a safe space and not try to rationalize with the person.

I leaned over that table with my finger in C’s face and yelled at him that I was fucking over his shitty behavior, turned to G and said the same thing. Then turned around, hands flapping and everything, ran to the furthest bedroom, shut the door and screamed into the darkness. I was so incredibly hurt and angry. I didn’t understand why they had attacked us. I felt othered.

Why were they doing this?

Sharing Your Diagnosis With Family: A Cautionary Tale, Part 1

I need to get something out of my head so that my brain stops chewing on it. I want to be done with all of this so that I can move on and celebrate my family’s new chapter.

This is the first in a multi part story. It is long but everything here is true. I am referring to everyone, other than myself and my husband, by their initial.

If people wanted you to write warmly about them, they should have behaved better. -Anne Lamott

Around the beginning of the year my husband, Dave, and I realized we needed to seek understanding and support from his family, whom we live very close to, for the process we have been going through. You see our family unit, us and our two kids, had recently been diagnosed as some flavor of neurodivergent. When adults receive a late diagnosis of either ADHD or Autism there is a unique grief process that happens. We grieve for who we thought we were, for who we could have been, and for what we never were. Adults then typically go through an unmasking process, where we shed the mask of who everyone else thinks we should be and begin to honor who we actually are. There is also a unique process that happens for parents when their children are diagnosed. Parents grow increasingly protective of their children’s needs. Many ND parents strive to make sure that their children don’t have to experience the stigma and shame that they experienced growing up, and are likely still experiencing.

We realized that while going through this process we had inadvertently isolated ourselves. We thought we had done this to ourselves. We had pulled back on some family functions in order to protect our peace. If you are also ND you know that activities with lots of moving parts are especially draining for the brains of ADHD/Autistic people. For those not already up to speed, our brains have a harder time filtering out the stimuli that a neurotypical brain would ordinarily ignore. We had been giving ourselves the freedom to decline invitations when we weren’t feeling up for something, and not initiating as much in spaces or with people that did not feel safe for our needs. For instance declining invitations to family dinners when we’ve had a busy week. Or deciding to stay home Christmas Day so that we could relax and our kids would not be pulled away from their new presents. Limiting the amount of time spent doing things we knew were taxing for us. 

Months prior, when we all first received an ADHD diagnosis, we did share, enthusiastically. But it was not well received by some. We heard dismissive phrases like: 

“But you are still you.” Implying that this doesn’t change anything. 

“Don’t you want to talk about something else?” Well this life altering diagnosis feels pretty all consuming, especially when it’s every person in my household. And it’s genetic, so there’s a good chance you share some of these genes.. 

“I wouldn’t go talk to a doctor (about a diagnosis) unless someone told me there was something wrong.” There isn’t anything wrong with me or my children.

In response to these and others we became very guarded. We limited how often we talked about ADHD or Autism to avoid the shaming or dismissive comments. We knew these moments were born out of ignorance of the topic, but we felt that it was not our job to educate people that would not make the effort on their own. Especially when we were very new to our understanding of it all. We were also feeling pretty drained by the process we were going through and by all of the life stuff we had going on; my Dave’s work, both of our volunteer work, our children’s school and activities, selling our house, and more.  We just did not have it in us to do this for them. Especially after we received the Autism diagnoses.

This process can be pretty lonely. I have been able to share with a couple friends. My family, the ones I am connected with, were generally receptive and even curious. Dave and I understood that some people just weren’t able to understand, and that others were not “safe” to talk with until we felt more comfortable in our knowledge.

Because we had been so careful with our time we noticed that there were family interactions we were missing. We live so close to most of my husband’s family that it began to feel hurtful to not receive an invitation to things, even if we knew we wouldn’t be able to attend. It’s not like we assumed that we would get an invitation to every little thing that the family was doing. It was becoming so frequent that we wondered if we were purposely being left out. We were finding out about things after the fact, through the family text thread or through people outside of the family. One of the moments that felt pretty hurtful was when an acquaintance made a comment to my daughter about a trip that two sets of her cousins were on that we knew nothing about. “I saw your cousins having so much fun in the snow.” 

We decided we had to take some ownership over the position we were in. Though we know now that the isolation we were feeling had less to do with us than it did with my Dave’s family. We knew that nothing would improve if we didn’t try something. Oh boy did we try, probably for far longer than was warranted.

Dave, at the advice of our therapists, was to lead the conversations with his family about Autism & ADHD, from his perspective. He started with his sister M, who I was doing volunteer work with and saw frequently. She and I were Girl Scout leaders of our daughters’ troop. When he called her, “Hey you’ve probably noticed that we have pulled back from family functions…” the conversation quickly turned into her venting about me. She actually told him not to say anything to me. This call lasted more than an hour. She was trying to convince him that I was mean, told her brother that “actions have consequences”, said I was uncooperative, that my tone was condescending. Complaints about our tones are an almost universal thing for autistic people.

When talking about this with a friend she was shocked to hear someone thought I was uncooperative. She said I was one of the most flexible people she had met. Much of M’s complaints could be attributed to my autism, and are more likely due to her insecurities. When Dave pushed M she admitted that she had never communicated or addressed anything with me. How can I know that I’ve offended someone if I don’t ever hear about it? I can’t apologize for something I wasn’t aware of.

For transparency, I had recently had to be very firm in an email with my SIL M’s friend who was the troop’s current cookie manager. She wasn’t doing her job very well, ignoring my requests, was not communicating clearly to me or to the parents, began to get passive aggressive with me and had brought up my personal life when it was not relevant to the situation. With the troop on the hook for more than $10,000 and counting I was concerned when after weeks of back and forth she was not cooperating. Her response to my firmness  was to quit the role of cookie manager. Now I had a lot of unexpected work.

Months prior I had stated to them both, very clearly, that I am a direct and literal person and that I would appreciate them seeking clarity instead of assuming my intentions. This was in response to them both assuming that I was taking something away from the girls, when I was actually seeking consistency and trying to more closely follow the rules we had to follow for Girl Scouts. So for there to be a lack of clarity and more assumptions made I was very frustrated. For what it’s worth I shared with Dave what I wanted to say before I sent it. I typically do this because I am frequently misunderstood and I want to make sure that I am being clear. Because I was shocked that she abruptly quit I also shared what I wrote with a couple others who all stated that I did/said nothing wrong.

After the initial call with his M, Dave had a follow up call with her to clarify some things and push back on others, his words. It was very clear that she had a narrow perspective and it would take much work for her to be able to see anything outside of herself. She and I had some upcoming troop things we both had to be at and these were very hard for me. She seemed content to pretend like everything was fine, while I struggled. How was I supposed to continue working with someone who thinks so little of me? I asked her to meet to talk about the future of the troop. My thought was that we could figure out a transition. I did not want to continue in the way we had been, but I now had much more work due to her friend quitting the cookie manager role. 

We had given M, and everyone locally, some material on autism, because not only am I autistic but so are my children. Our children will likely face similar challenges to what we were facing now and had faced in the past. These materials were not pointed at anyone directly and were meant as simply relevant information. She met with me, with Dave present, and she essentially said that she couldn’t work with me because I made her feel XYZ and that she was quitting her role as a leader, “effective immediately.” She was visibly uncomfortable and did not seem interested in talking about all the challenges she had dumped on Dave. Now, these things she said I had been making her feel, I was feeling around her at times too. But I knew that they were my feelings to work out and I did what I could to either resolve them, in myself or with her, or just deal with it. 

Even though she had said that she could continue to be at every meeting I knew that that wasn’t something I could do. She wanted to be just another parent, and I needed someone I could work with and depend on. She had proven that she wasn’t that person. So even though this meant more work for me I let her know that she wasn’t needed at meetings. This meant less emotional stress for me, and I could hopefully have space to process. 

I felt very hurt by M. It was horrible knowing someone had complained at length about me to my husband about things that seemed to be years in the making, when they had made zero effort prior in finding a resolution. Also, knowing that she had essentially tried to get him to turn on me was bizarre. See, I had felt the distance between her and I for a long time, years. I had tried to bridge the gap, in multiple ways multiple times, but every effort I made did nothing, except perhaps create more distance. In retrospect, I’m sure that I could have done some things better, but I was also the only one making any effort. A theme that repeats itself in all this. How can I bridge a gap with someone that’s unwilling to work with me and would rather just pretend?

It’s weird how pretending everything is fine doesn’t really work.

During all this Dave was also having conversations with his grandmother and parents who had moved to the area recently, as well as his  other sister, A, that lives a bit further away, then later his brother G, who lives in another state. Some of these conversations I was present for, as mostly a bystander, but Dave did most of this on his own. The conversations seemed to go well with his grandmother, and we thought the same with his sister A. He said his parents did not understand and were defensive. This was made clear to me when his mother came to our house and tearfully read us a multi page letter talking about, amongst other things, how much she and my FIL had done for us. It was clear that they were not understanding their son’s perspective. Though she said that she had read all that we had given her, so we had hope that, in time, there would be some understanding and support from his parents.

I guess at this point you may be wondering what exactly were we trying to gain from all this. Well, Dave was essentially asking his family for help, something he admits he doesn’t know how to do well. We wanted to create a safe space for our family to be our Autistic selves that was free of judgment and where there was at least a basic understanding of Autism. Sadly this story doesn’t end well. It seems as if we will never have a safe space within his family. 

We had continued to feel left out of family functions and were still learning of things after the fact and/or through that family text thread. One of the things we had learned about by text was a visit by both sisters to the brother, G, who lives out of state. Happy pictures of the cousins, all nine, and all the siblings & spouses. There wasn’t even a heads up from A whom we had recently seen that they had a trip planned. While we were hurt, I was feeling especially sad for my kids who were missing out on spending time with their cousins, whom they cherish.

Now it was very clear that not only were we at odds with the one sister, but my husband and his family were being excluded, without even a heads up from the rest of them. Imagine how hurtful this all was to him. Years prior we had moved back to the States to be with our families, and so many of them are so wound up in their dysfunction to see outside of themselves. It’s so disheartening.

Dave’s brother had an upcoming visit to our area and we knew that this could be uncomfortable when around M. We had hoped that there could be some improvement so that any awkwardness be alleviated some. This visit was also something that we found out about late. I had a Girl Scout camp planned that I could not get out of. Especially as I now had no co-leader and was doing all the work myself. Work that was made harder by M’s actions, like deleting shared troop files then lying to me about it when asked. 

Dave continued to try and get his sister M to work things out with me. She had said almost nothing to me other than a few sentences and was pretending that everything was fine, when it was very clearly not. I had troop parents asking me what was going on. They could see, and I had to figure out a way to navigate this by honoring my feelings as well as M’s request to “not make a big announcement” to the troop. Dave would talk with M and she would indicate that maybe she would try, but he would come away from those conversations being the one doing the work. Like I said above, our therapists both advised us that all of this had to go through him since it was his family. I desperately wanted to do something, anything, but I held off.

This is a long tale. Stay tuned for part 2…

Is CBT good for Autistic people?

This is a question that until recently would have been a “yes!” from experts. Newer research has suggested that that may not be the case.

“We fundamentally need to ask ourselves: If it’s working, then whom is it working for?” says study lead Shivani Sharma, head of the psychology division at the University of Hertfordshire in the United Kingdom. “Because it’s really odd that there’s such a difference between the clinician ratings, the parent ratings, and then the person themselves, their own rating.”

I have read in books, forums, and articles about CBT not being as effective for autistics but haven’t come across an easy to digest explanation. Now there is one! This is a great video about CBT and WHY it’s not always good for us, from someone I consider a great Actually Autistic advocate. Seriously go check out is youTube channel: Autism From The Inside


Not long ago I was contacted about AbleTo, an online mental health & coaching services my insurance is contracted with. I humored the woman on the line and let her go through her spiel while I did a little research. On their website I saw that it mainly utilizes CBT.

After explaining that I am recently diagnosed autistic and that CBT is not always helpful for us, I asked her if CBT was the only method employed. This was a question she was not prepared for. She put me on hold to talk to her supervisors and came back with the non-answer that the therapists were trained in multiple methods. Though she could not answer the question on if other modalities were actually employed. I thanked her for her time and said that I would do my own research and call back if I felt like AbleTo would be good for me.

For those interested, AbleTo does not seem to be any more effective than other online therapy services, like Better Help, but it is covered by some insurances. Nothing I saw in my very quick research suggested that it was good for autistics. I won’t be calling them back as I am more than satisfied with my current therapist. There do seem to be plenty of people out there who feel satisfied by virtual therapy and I am not against using these services. Especially if obtaining quality professional help in-person is challenging.

*Disclaimer* I have never used an online/virtual therapy service. I would be curious to hear from #actuallyautistic people that have used these services. If you have used them please share your experiences!

Autism Acceptance

April is Autism Awareness Acceptance month! Though we are all pretty aware of autism now. Most #actuallyautistic people are now pushing for autism acceptance over awareness. It’s the end of the month so I will leave that discussion for the more informed autistic voices who have already voiced this perspective. Please check out this article from Forbes. It does a great job of explaining the perspective of acceptance over awareness and offers information and links to help understand what autistic people experience.

“Whilst it is sadly true that parents struggle and Autists often do experience social rejection from their neurotypical peers, the perspective in which these things are the fault of Autism itself is loaded with ableism and fails to reflect on the society that is exacerbating these problems rather than supporting inclusion, understanding and acceptance.”

It was completely by accident that we scheduled autism evaluations for our kids this month.

When our son was diagnosed with ADHD last November It triggered in me the drive to actually understand what it was. Even though I’ve always been aware of it I was woefully uninformed about it. Learning about ADHD led me to Neurodivergence, which led me to Autism. I have done a lot of research on all of this already, and I feel like I have barely scratched the surface. The more I’ve learned about neurodivergence the more I recognize these traits in me and my family. When I say family I mean everyone, not just my husband and children, but also in my parents, my extended family, and also in the family I married into. It is definitely weird to finally recognize something that has always been there.

I have family members that are diagnosed with ADHD and Autism. Learning about the genetic component of both prompted me to finally seek answers to why my children feel more deeply, and react more strongly than other kids. I shared earlier that all four of us, myself, my husband, and both my children have all been diagnosed with ADHD. But I felt that there was something more. No doctor or family member has ever suggested that my kids were different. When I voiced my concerns about my son I heard from family “He’s fine, don’t worry about it. He’s just fine.” And yes, my son is just fine, and so is my daughter. But what if they aren’t fine later on? What if they need more help than we’re aware of?

This month we learned that both of our children are autistic. I was right.

I’ve also been noticing the similarities between the challenges my children are facing and what myself and my siblings faced in our youth. One of my siblings has been diagnosed as autistic, and I wouldn’t be surprised if the other does as well. If I have a sibling and cousins with diagnosed autism, if there is a genetic component to autism, what does that mean for me?

I have gone through every available screening test and questionnaire that I can find. These are tools developed by clinicians to help determine if an adult or child meets the criteria for autism. Every. Single. One. came back as meeting the criteria for a diagnosis of autism. Every one. I even took a couple twice to be sure. I had never considered autism for myself, but I have always felt different. I’ve just chalked it up to my challenging childhood, or my atypical life.

So what is one supposed to do with this information? I do have an upcoming autism evaluation. It is a total of four appointments totaling 10 hours, and it will cost me $2,700 out of pocket, as it is not covered by insurance. In contrast, my kid’s evaluations were about three hours and we only had to pay the copay.

Because of the high cost of adult autistic evaluations a self diagnosis is widely accepted in the autistic community. Some people simply cannot afford to get an evaluation. The research on autism is also rapidly improving so many providers have an outdated understanding of autism. There is also significant stigma and rampant misinformation in the lay population. Why would people be willing to pay so much money for an evaluation, or self diagnose themselves as autistic? Because we finally have a reason for why we feel different. We can begin to recognize and celebrate what makes us unique. We can shed these masks we’ve been using, sometimes not very effectively, to try and fit into society. We can forgive ourselves of the shame or guilt we feel for not living as the world expects. We can finally feel that sense of belonging that has been missing.

While I do not yet have a diagnosis, I now identify as an autistic person. I will still pay thousands to get a diagnosis because it may help me later in life. A diagnosis may even hurt me down the road too. I will likely receive push-back from people until then. But I feel like I am finally understanding myself. And isn’t that the most important thing in life? Feeling comfortable and confident in our own skin? Understanding who I am, and how my autistic brain works will help me be a better mother to my autistic children as well.

I am autistic. My children are autistic. And I wouldn’t change that at all.

I wasn’t sure if I should publicly share this information. Heck I’m still processing what this all means and what I’m supposed to do next. But I’ve been made aware of the shift happening in the autistic community. Autism is nothing to be ashamed of. It is not a disease to be cured. Autistic people are not less than. We are just living in a world not built for us. Autistic people deserve the same respect and equity that everyone else has had the luxury of living with. If I can participate in and help move this shift towards acceptance, why in the world would I keep quiet?

“Autism cannot be separated from the Autist, it is a major part of a person’s identity and treating it like a problem to be solved is demeaning. Awareness is not enough and acceptance is the conversation we need to be having.”

I am Burnt Out

It’s been a minute! This was originally going to be about the basic housekeeping that I’ve done on the website, but it quickly shifted into describing my current state of burnout.

Life has been sooo busy for me the last few months. Multiple items on the calendar each day for me, my kids, and my husband. Doctor or dentist appointments, psychologist or psychiatrist appointments, physical therapy, training sessions, school tours, hair appointments, cub scout and girl scout meetings, baseball practices, etc. My kids got invited to 7 different birthday parties this month! Having so much on my calendar means that I am losing track of things I’ve committed to. I’ve had to rearrange appointments or just flat out cancel things, sometimes at the last minute.

I’ve recently started fostering a cat. I impulsively applied to a rescue and was approved. Generally cats are pretty easy for me so I did not expect this to be challenging. And it has been easy, with one notable exception. Earlier this week I woke up at 5 am and I drove an hour to the vet clinic for the cat’s alter appointment. I waited almost an hour to speak to someone before I realized I was at the wrong location. When I finally got home I next realized I was a day early. I am NOT a morning person. So not only did I stress out myself and the poor cat, I also lost sleep because of my mix-up.

And then I got sick with a mild stomach bug.

The last few weeks I have been lamenting the lack of freedom in what I do with my days. I’ve been longing for the boredom I felt while initially recovering from my hysterectomy. I am way past my limit, and now my body made the choice for me. I am burned out!

Check out these videos on burnout & recovery from burnout. They are from the ADHD & Autistic perspective, but most of this is likely applicable regardless of your neurotype.

Now that I’ve taken a couple days to recover from the stomach bug and the resulting weakness from not enough food & sleep, what now? I have been avoiding putting more things on my calendar, but that doesn’t solve the problem of the items I still have on my calendar. This means that I am now in the process of eliminating or rescheduling some of my commitments. This is hard for me to do. Some of these things I really did want to do at first, but now I have no interest (or energy!) in doing. I feel like I am letting others or myself down.

If I don’t make time for myself I won’t have anything left to give to others.

As the recovery video pointed out, letting go of some things so that I can say yes to the things that I actually want to do will help me immensely in the long run. I need energy and time to be present for my children and husband, and all my animals. I need to be able to devote time to leading my daughter’s Girl Scout troop. I want to have the freedom to tend to my plants. I want to have time to explore hobbies and crafts.

I need to have the energy and time to devote to this website. For me this is a need and not a want. I need to have an outlet while I am on this road of self discovery, understanding, and acceptance for myself and my family. Because I’ve been so busy I have not had a chance to properly research and share my perspective on any of the many topics I have been collecting. But I am making changes so that I can consistently have this outlet that I so crave.

I have set up a poll/form listing all the topics that I am interested in researching and sharing. Please let me know if you would like to know more about any of these, and I welcome your perspective and experience in these spaces.

Comments *should* be available now. Please let me know if they are not visible to you here. Anything entered into my Contact Me form prior to the last couple weeks is lost, unfortunately, but it is now properly up and running so feel free to resubmit.

Until next time!

It’s Neurodiversity Week!

Welcome! I did a thing! I have my own website now! Which I am still trying to figure out, so bear with me a bit. Neurodiversity Week made me do it…

I have typically shared through Instagram and sometimes Facebook. But recently I’ve been sharing these long posts that don’t really fit with those platforms.

I decided to finally start a blog. Like an actual blog, not the dabbling I’ve done in the past. I wanted a place that I could share whatever I wanted, in a way that I wanted, without feeling the pressure to censure myself, or feel constrained by the platform, or worry about offending contacts on my friends list. I want to share my journey through life in a way that feels authentic to me. I wanted to be able to info dump and use any “foul” language that comes to mind.

So why the name “Life Organized by Chaos”?

I have always loved the phrase “organized chaos.” As a teen I used it to describe the way I decorated my room and the collage art I did. As I got older and life became more complex I realized that my life, the lens I saw it through, had so much chaos; for a few reasons, that I will get into here at some point. I have always been trying to organize the chaos of my life, with varying degrees of success.

So what the heck does all this have to do with Neurodiversity Week?

Well, myself, my husband, and both of our kids, have all recently been diagnosed with ADHD, Attention Deficit Hyperactivity Disorder. As a person with ADHD, a partner, and a parent of people with ADHD, our brains are wired and behave very differently than the typical person. We are neurodivergent, and I kinda like it. Knowing why we behave or think in certain ways has been liberating.

BTW ADHD is a horrible name for this condition, which I can explore another time.

Now that we know we have ADHD, we now know that we are part of the neurodivergent crowd! And oh boy! Does it feel good to have a clearer understanding of how my brain works.

Some of you might not know what neurodiversity is, or what it means to live with a condition that falls under the neurodivergent umbrella. For this welcome post I’ll share a couple definitions with links to help you understand some neurodiversity basics, as I now understand them. As the mood strikes me I’ll explore some of the deeper aspects of it all.

Neurodiversity – ND: Is the variation in the human brain regarding mental functions like attention, learning, and mood. The main point of using this label is that these are simply different ways of being versus conditions that needs to be cured. For instance left handedness is now understood to be a difference, and we no longer try to force left handers to use their right hand. It is now just a difference that can be accommodated. shares that “Neurodiversity is a viewpoint that brain differences are normal, rather than deficits…. That’s the basic idea of neurodiversity — that differences don’t have to only be looked at as weaknesses.” Conditions that fall under neurodivergent are Autism, ADHD, and learning disabilities like dyslexia, dyspraxia, etc.

Attention Deficit Hyperactivity Disorder – ADHD: is a neurodevelopmental disorder “that impacts the parts of the brain that help us plan, focus on, and execute tasks. ADHD symptoms vary by sub-type — inattentive, hyperactive, or combined — and are often more difficult to diagnose in girls and adults.” As defined by

Autism Spectrum Disorder – ASD: From “Autism… is a complex, lifelong developmental condition that typically appears during early childhood and can impact a person’s social skills, communication, relationships, and self-regulation. The Autism experience is different for everyone. It is defined by a certain set of behaviors and is often referred to as a “spectrum condition” that affects people differently and to varying degrees.” And like ADHD, it can be very difficult to get a diagnosis if you are female and/or an adult.

This is the barebones of what neurodiversity is. There are other conditions that fall under the umbrella of Neurodiversity broadly, and there many other syndromes or conditions that fall under the categories of ADHD & ASD. There are so many fantastic websites, blogs, YouTube channels, Podcasts, and everything in between that have amazing content that can give you any and all of the information you might want. I’ve just linked just a few that I’ve come across. Take a look!

I hope that you will stick around while I give you a glimpse of a neurodivergent life through my lens.