A New Journey We Didn't See Coming

As I had mentioned before, we had noticed a lot of challenges from Mr. Blue that we weren’t quite understanding. Before we moved back to Iowa, we had started the process of having him evaluated by an OT with the trajectory of it probably being something like SPD (sensory processing disorder). We were first made aware of this by our pediatrician when I was explaining some of the things we were noticing and she said it sounds to me like he has some sensory challenges. And the lightbulb went off. 

I began a DEEP dive into researching and finally felt like I was making headway. It definitely ticked a lot of the boxes, not all, but most to where this seemed most likely. So we decided to call around to a few places to have Mr. Blue evaluated and then subsequently receive some treatment as well. We did the evaluation a couple months after he turned 3 and then I waited and waited and waited, to receive the results.

I finally called and said they told me it would be about 2 weeks and it’s been over that, when can we expect to hear the results and start therapy. They told me they could have the results sent over but that the therapist who did the evaluation is no longer employed there but that we could be seen by someone else. At this point we were within a couple weeks of moving, so I said forget it just send me the results. Mr. Blue had already developed a relationship and started to build a rapport with the other therapist and it seemed silly to introduce someone new when we were moving so soon. The results basically came back with yes, he had SPD and therapy was recommended to help deal with some of the more difficult challenges he and we face. So once we got settled in Iowa I started to look around to find an OT that would hopefully be a good fit. I made a few calls and found a place with openings, not easy to do, and we could get in soon. I had forwarded her the evaluation he had done in Arizona and since it had been done so recently she said she could not do another evaluation, insurance wise, and would just go off the information on that evaluation even though it was not how they would have done it. 

All in all, Mr. Blue did OT for about 6 months. It definitely did help with some things - like transitions, those were one of the biggest if not THE biggest challenges we were facing at the time. But it got to the point that it was taking 20 minutes of our 45 minute session just to get him in the door. Now I know, most people would say just pick him up and haul him in there, it wasn’t that easy. And we also did not want to make this a ‘scary’ place for him - we wanted him to WANT to be there. So we decided to have a conversation with his therapist and it was mutually agreed upon to take a break since he had sort of reached a plateau in his progression anyway. With transitions now not as big of an issue, it gave Nic and I a chance to really focus on some of the other challenges and try to figure out what we were dealing with. We still felt like there was something that wasn’t adding up, that sensory processing was just a part of the whole, but what were we not seeing. We were praying fervently, please - show us what we are missing! Help us to help our child, we don’t want to go on not understanding him. 

We were then told that we could utilize services through the AEA even though he wasn’t school aged yet, so we contacted them and set up yet another evaluation. We went through that process which involved them asking us questions about him and then having us leave the room so they could interact with him and watch as he plays and how he interacted with them (there were 4 people evaluating). Afterwards they had us come back in and basically were able to give us their results right then and there. They agreed with the sensory processing disorder but also said that he was exceptionally smart - which we had said also. From there we scheduled a few zoom meetings with one of the women who evaluated him so she could coach us through some situations and provide some outside help, beyond that they said they couldn’t do much more since he wasn’t in the school. Had he been in school, they could provide services to him during class times to work through some of the challenges we had discussed, but more in a way of helping during a school day - not necessarily translating to outside of school. We were appreciative of the feedback and help they did give us, but still felt like we were just pushed aside when we were really struggling to understand our son to give him the best help possible. He deserved the best version of us, and he definitely was not getting it because we were out of our depth. 

I continued to research because I just knew in my gut that we were missing something, SPD checked a lot of the boxes but it definitely did not check them all and some of the things were BIG things. The close to hour long meltdowns over something as simple as putting shoes on, inflexibility with play and everything else - it’s his way or the highway, worrying about absolutely everything, everything having to be EXACTLY fair - I had to give him the exact amount of grapes I gave his brother, it could be more but definitely not less. And that’s just the short list of some of the things we were dealing with. Now you might look at that and go oh geez, that is every kid. And under some circumstances I might agree with you, but this wasn’t just occasionally or maybe once a day, it was all of those every single day - multiple times a day. I can’t even count how many hours of meltdowns we have sat through with him, where at some points he has even been able to verbalize he wants to calm down but CAN’T! Not that he won’t calm down out of stubbornness or that he’s throwing a tantrum, he literally cannot calm down. That’s not normal and we just wanted to be able to help him but had zero clue how - your standard parenting ‘handbooks’ or advice from mom groups don’t ever touch on neurodivergence. If your kid is out of the box then it must be a parenting issue (insert biggest eye roll).

We began to work with another OT that was recommended to us by his previous OT, but she lived across the country. I had already been following her on Instagram and saw that she offered classes to help us parent these kids with unique challenges and 1 on 1 zoom calls so she can help to give us advice tailored to our kid. We worked with her for about 6 weeks and took a couple of her courses to continue to help us learn how his brain works so we can work WITH him and not against him. We figured if going to in person OT wasn’t going to work for him then the next best thing would be to educate ourselves. Fast forward a bit and I was still deep into research to try to figure out the piece I just knew was missing - and I think I had finally found it. Enter in - PDA, pathological demand avoidance or persistent drive for autonomy. It seemed to fit but I had never heard of it or really seen anything else about it. By the time I came across this he was now 5, so we had been on the journey of neurodivergence for a couple years but still felt as though we were fumbling through life with him. We felt we were missing out on the joyous parts of him because we were absolutely drowning in the challenging parts because we just weren’t understanding. Very shortly our fervent prayers were answered, in the form of an instagram post that changed everything.

I read a post that came across my Instagram algorithm and I immediately knew that this was what we were unknowingly dealing with - it finally checked every single box of all of the struggles we had had through the years. And it came from someone who was living what we were living - not just an scientific article without real life experiences. Coming across the term PDA quite literally changed our lives. I had finally found something that could help me to better understand my child and hopefully parent him in a way that was actually helpful to him. The next big challenge was that it was relatively newly discussed in the US, so not much was known - especially not to providers. At least with this new information in hand we were able to research this specific nervous system disorder and educate ourselves and bring it to light with providers in the area. But, we had another life situation going on that didn’t quite allow us to pursue anymore therapies at the time. 

To be continued..  

XOXO, mischief managing momma

*****To protect my son, I am not going to go into huge detail of the many challenges we have worked through over the last few years, I will only share brief descriptions to help paint the picture of some of the things we were/are dealing with. 

Oldest (1)- Mr. Blue

Middle (2) - Mr. Orange

Youngest (3) - Mr. Green