Neurodivergence: A Lesson in Identity

This school year was Mr Orange’s first year of school!! And we followed in big brother’s footsteps and used the playing preschool year 1 curriculum. He definitely wasn’t as excited about doing it as Mr. Blue but he did really enjoy the songs and poems with my made up moves to go along with them. He also liked the stories and hands-on activities. He was not so much a fan of the arts and crafts, so we skipped it most of the time unless he actually seemed into it (which was rare). For Mr Blue we did a combination of kindergarten and 1st grade material. Since I didn’t love the language arts/reading material from the curriculum we used last school year, I decided to repeat kindergarten year for that subject to really make sure we mastered those early reading and phonics skills. I love to read and would love to see him get into it as well, so I definitely didn’t want to miss some of those crucial skills. But he absolutely soared through math so we started with some kindergarten skills just to make sure he was truly ready - and he was extremely bored - he needed the next challenge. So onto 1st grade math! We often would start our days with breakfast and then grab our school stuff and take it with us while we walked to the park. The boys would then play awhile and we’d sprinkle in some school between play and then walk back home. We were still going to our weekly homeschool group as it goes year round and were enjoying the various adventures we went on. 

The friend I had met online with a son who also has PDA had given us the name of a therapist who is knowledgeable with neurodivergent kids, funnily enough was at the same place the boys used to go. She had told me about her not long after we first began to chat (in early spring) and I called weekly all summer long until we were finally able to get in her schedule towards the end of summer. Mr. Blue and her hit it off right away, and I was so glad to have found a good fit - it helped that she had a therapy dog there during most visits. After a few visits I began to inquire about having him officially tested, I was initially hesitant until I learned how good it could be for his mental health to be able to have that as a part of his identity. Rather than going through life wondering why certain things were so much harder for him than his peers, this part of his identity would give him a better sense of self and not cause so much turmoil as there would be a true reason for some of his hardships. His therapist agreed that he was a good age and recommended a person in the same office that also came highly recommended from other parents we had talked to. Luckily, we were able to squeeze into her schedule fairly quickly. Over the course of 4 appointments she was able to gather information for a whole picture of him. The first appointment was with him and I and she just asked various questions to gain some perspectives and get some more background information. The next 2 appointments he was with her by himself for 2 hours each and they ran through 10 ‘tests’ total between the 2 appointments. And then he was scored based on how he did on those ‘tests’. Shockingly, he didn’t do too bad with her and being ‘forced’ to do things that he probably didn’t want to do and didn’t fight when it was time to go again. The last appointment was with both Nic and I to then gather as much more information as she could from both of our perspectives - separately and together, to round out the big picture of who he is and how he operates. She also had sent a few electronic surveys to us, a teacher of his at church, and his grandparents to gain a few more perspectives. Finally we were able to have a zoom call with her to discuss her final diagnosis. She diagnosed him with ADHD, and Autism Spectrum Disorder - with a profile of PDA (pathological demand avoidance). None of this shocked us, but still took awhile to fully process as it was finally real - printed in black and white. And while we knew that ultimately this diagnosis would benefit him in multiple ways, it’s still hard to digest the truth that his life is going to be harder than most in many ways. But on the other side of it was extreme relief, that we weren’t crazy and our intuition was correct. For us as parents, it also felt extremely validating, because we had heard for years from others that he didn’t seem or look neurodivergent/autistic - and we would just shut down. Rather than try to argue the state of our household the past few years or how it felt to try to parent him, it was easier to just not bring it up anymore. And not that we didn’t advocate for him, we absolutely did, we just felt stuck because we didn’t have a “true diagnosis”. But now that we did we felt that it was easier to say he’s been diagnosed with autism and even just having that word alone in front has made people back off a bit or maybe be less vocal of their skepticism. It’s wild to me though that that’s even something we’ve dealt with as often as we have, just because his diagnosis isn’t visible doesn’t give anyone the right to brush it off. You wouldn’t argue with someone if they told you their child, who very clearly is in a wheelchair, that there’s nothing wrong with them - so why invalidate the struggles of those you may not be able to see? It doesn’t make sense to me and has been very frustrating. 

Even in different interactions with others it has helped to have a true diagnosis because we very often felt judged when we had to say no to various activities or get togethers. He can get overwhelmed very easily in new places or around new people, and especially if it’s in large numbers and is loud. And before it felt like others were very much judging our parenting and way of life, without them really understanding. Some might have understood on a surface level, but there were few people who really got it. So we have lost relationships, and stopped being invited to places and activities. And to be honest, that’s been hard for me because I like to be social and have a big case of fomo (fear of missing out) when we have to say no to things - which we do more often than not - and I am a huge people pleaser (something I’m working on) and I really don’t like to disappoint others and it felt like that’s all I was doing. Eventually I have gotten to a point that my family comes first no matter what and I’m working on not caring what anyone else thinks, because they don’t live our lives. I would be lying though if I said I didn’t sometimes resent our situation for all the things we’ve had to miss out on, but I also know it’s not forever, right now I am his safe person and act as his second nervous system until he is old enough and mature enough to self regulate more consistently. After all, at the root of his diagnosis is it being a nervous system disorder. And until we reach that point, home is where he’s most comfortable, so that’s where we’ll be and where we’ll continue to work on his emotional regulation and coping strategies for when things get to be too much. 

One thing that has been equally as hard through all of this, is how much it affects Mr. Orange. He tends to be the punching bag (not always literally) for all the big emotions that Mr. Blue is dealing with. He gets ultra bossy, his tone turns harsh, sometimes gets aggressive and is just an all around hard person to be around when he’s in one of his moods. And we’ve noticed that if we’re dealing with a particularly big meltdown from Mr. Blue - Mr. Orange tends to withdraw into himself. When this happens, either Nic or myself will go talk to him and try to talk him through what’s going on with Mr. Blue and then talk through how these things make him feel. He has mentioned feeling scared, wishing he were the older/bigger brother, and wishing that it just plain wouldn’t happen anymore. With him being younger, and neurotypical, sometimes it’s hard to explain as he also feels deeply but is able to move forward from disappointment/being upset/etc. But something we weren’t anticipating were all the copycat emotions and feelings, so it almost felt like we were parenting 2 kids with the same disability but one is just copying the behavior and actions and feelings based on what he regularly sees. Mr. Orange has now really clung on to the anxiousness that he sees Mr. Blue go through when we don’t feel like that is actually how he feels, but just acts that way because it’s all he knows. It’s been extremely hard to parent because we want him to be his own person but he’s still at the age of always wanting to do what big brother does. Something that has been very interesting to witness is the emotional maturity and social awareness of Mr. Orange that is more so than Mr. Blue. He for sure has picked up on social cues that just go right over Mr. Blue’s head. He has been able to tell when people are making fun of or just being generally unkind to Mr. Blue and he has taken it up on himself to be his protector. Which as a parent is an extremely sweet thing to see, but also sad since it’s usually the other way around. It’s also been hard because I don’t want him to feel like he HAS to and then come to resent Mr. Blue for it - if that makes sense. 

Overall I’m glad we went through the testing process and truly knew what we were up against so we can continue to educate ourselves and do all that we can to advocate for him and do what’s best for him in all aspects. The saying I have to remind myself over and over again is that he’s not giving us a hard time - he’s HAVING a hard time. Sometimes just shifting the perspective can be all the difference in the world. It’s not without its challenges and our days, weeks, months can be very hard - but we’re making it work. Some days it feels like we’re drowning and other days are what we live for as parents, it’s all a rollercoaster but these are the people God has blessed me with and I’m going to do all I can to be the best mom for them. 

XOXO, mischief managing momma

Oldest (1)- Mr. Blue

Middle (2) - Mr. Orange

Youngest (3) - Mr. Green

Just some photos of life during that time.