advocating for our son

I had the privilege of recording an interview for an upcoming parent panel that will be part of a two-day training for occupational, physical, and speech therapists. I would have done the panel in person but due to COVID it was rescheduled for LP’s birthday and I would rather spend the day with him.

I was asked to do the interview because of our unique experience with the NICU as adoptive parents. At the very end of the interview, I was asked what I would want future therapists to know when working with families. That’s what I’m going to talk about today.

I had two major areas that I wanted to focus on: (1) learning the important adoption terms and ideas and (2) empowering parents.

learning about adoption

For the most part, we haven’t had too many strange interactions with regards to the adoption, but I think that even one strange interaction is too many. Most of the questions, and I really do welcome questions as I think folks should be educated about adoption, were about the process of adopting. Most people don’t know how it works.

For reference: Most domestic infant adoptions start with a informational meeting that outlines the process and costs for prospective adoptive parents. It’s a good time to vet an agency to see if they’re a good fit for your family. From there, you submit a preliminary application and pay a fee. If you pass the screening, you then start the home study process. Once your home study is approved, you enter the pool of other waiting families. As I’ve noted before, the wait varies quite a bit, but can take years. Matching occurs when your family is paired with a birth mother (or in our case a baby). Placement occurs when the baby is discharged from the hospital. (In our case, after a lengthy nicu stay.) Then, after six months and several visits from your caseworker, the finalization hearing finally comes and the paperwork catches up with your family. 

I can’t count the number of times that I explained the process to folks. Some were simply curious and others wanted to know when we would be his parents on paper and out of the strange limbo.

Unfortunately, one nurse had a hard time with the concept of adoption. Upon our arrival at LP’s room and after she gave us his update, she asked for my identification. (Mind you, we had been his parents for a couple of months at this point and very well known in the NICU.) I explained to her who I was and that all of the paperwork was in his file. I also explained that while we were allowed to have all of the information about him, major decisions had to go through a bunch of other people. (More about that below.) Eventually, she dropped it. But things got super awkward after that when she insisted on referring to me by the birth mother’s name. I had to get the hospital’s social worker involved and this nurse never cared for LP again.

More benign things happened with other people like calling LP by his birth name since it was still on the chart instead of his given name or saying that he must look like his dad since he looks nothing like me. (Fun fact: He looks nothing like his dad either…) This is all pretty easy stuff to correct or to simply ignore.

In terms of therapists, all of ours were great. However, there’s even a story there. One afternoon, LP’s physical therapist, who we really enjoyed working with, came by with an student. He asked if he could share some of LP’s history with her. Of course, I said it was fine. He then jumped into LP’s complicated medical history without mentioning that I’m not his biological mother. It was one of the few times where leading with that information would have made all the difference. The phrase “if looks could kill” comes to mind. I had to quickly set the student straight about my role.

We also ran into folks who meant well, but would either say unflattering things about the birth family or some variant of “he’s better off with you guys.” Neither are appropriate. We started countering the former with, “We have a rule in our family: No talking shit about the birth family.” That usually fixed things or at least let the offending party know that we’re not interested in what they think. (We still have that rule.) For the former, we would counter with something about it being a tough situation all around and that they don’t know the whole story and we were just happy to be able to provide for him and love him.

empowering parents

As I mentioned, the other theme that I wanted to hammer home during the interview was the importance of empowering parents to make decisions for their kids. While we were in the NICU, we had very little decision making power. We could make decisions about minor changes to his schedule, but the big stuff like procedures and surgery were not ours to make. This is because we were matched with LP, but hadn’t been able to take placement yet. The adoption agency was technically his guardian and had the final say over his care. I had to continually explain all of this to his doctors. I would tell them that while we didn’t have the final say, we were allowed to have an opinion. The limbo was exhausting.

Then there were times where medical professionals would just make decisions without asking. One particular evening comes to mind. LP had a new-to-him nurse that night. (I felt lots of anxiety about leaving him with new people.) After his last meal for the night, I said my goodnights and headed out to get some sleep. The next morning, I came in to hear LP’s monitors beeping. All of his values seemed in range, so it took me a second to figure out that she had changed his alarm parameters to go off when his oxygen numbers went above 93. She had decided, without asking or checking, to follow the letter of some automatically generated orders from his eye surgery. Those orders weren’t necessary and hadn’t been followed in the previous four days. Plus, we were three days away from being discharged. Since no one was going to tweak his oxygen amount, the alarms only served to drive me nuts. I had to get multiple doctors and a charge nurse involved for them to realize that fact and put the parameters back to normal. Getting people to see reason was a nightmare and I felt helpless.

Things did change a bit once LP was discharged. At placement, he was put on our insurance and we had full decision making authority. However, since the adoption wasn’t final, we were still technically considered his foster parents. We both got the sense from multiple specialists that we were somehow less than his parents, even though we had been with him from the beginning and knew more about his history than they ever would. We felt like we were being constantly watched and monitored.

The one bright light in all of this has been our physical therapist. Every week we go over our visits and changes/test results from the previous week. She always asks how I feel about what’s being asked of us and reminds me that I am the parent and can decide whether we’re going to follow the doctor’s recommendations or not because, at the end of the day, the doctor’s work for us and we have to balance all of their competing demands in a way that works best for LP. It’s been challenging.

When we started out on this journey, we didn’t know that we’d have to learn so much about the medical community and treatment of premature babies with additional needs. There are a lot of days where I don’t feel strong enough to keep fighting, but I carry on knowing that this tiny human depends on us to make sure that he’s going to grow up with all of the chances and opportunities available to him.

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