J makes a very clear distinction between doctors that worry him and doctors that don’t. His psychiatrist doesn’t worry him…much. That’s who we refer to as the “Talking Doctor.” There will be no poking, prodding, auscultation, drawing of blood, use of any type of needles. The only anxiety J feels when we go there is when he encounters other patients in the general outpatient waiting room.
As with every other mental-health facility, the one we visit is full of people with a variety of situations that, when gathered in one room, can be a bit overwhelming. Some people don’t like crowded rooms, low ceilings, things that are not orderly…many anxieties in one room can bounce off each other, and the vibe can be overwhelming. J puts off these vibes, too, so when they come back to him from someone else, it seems to emphasize them. Yesterday he locked eyes with a young lady who stared at him in a way that unnerved him, and I’m sure he unnerved her too, but their responses were different: she started laughing nervously while fingering a rubber band she was wearing on her wrist, and J just burrowed into me and started squeaking anxiously.
We have come a long way because I simply had to say “I have you, dear. I will make sure you’re fine,” and he allowed the nurse to lead us to a smaller waiting room closer to our doctor’s office. This smaller waiting room is divided into an area for older patients and an area for children. J likes the rug in the children’s area so he sat in one of the bucket chairs while I sat next to him with a low table between us. While we waited I read stories to him; I am in the habit of carrying several of his books with me when we go somewhere that involves a wait.
People started coming in to wait for their doctors, and there we sat reading and giggling. I realized that in this scenario we were the odd birds: two adults happily sitting where the more colorful rug dominated the room with The Fat Cat Sat on the Mat, Froggy Gets Dressed and Peek-a-Boo! for entertainment. The other patients, many of them children under the age of 12, sat with cell phones in their hands; their parents were also on cell phones. J had his iPad, of course, but he was turned towards me, and we were both looking at the book and animatedly interacting over the words. When we ran out of books, we both looked at his Hugless Douglas and Charlie Brown apps on the iPad. Several times we looked up to see people giving us strange glances, as if we were doing something terribly unusual.
This was our next-to-last visit to the psychiatrist. He is pleased with J’s progress and development, and since he has been med-free since last December, we agree that we have moved past the more serious issues that used to hinder our young man. A calmer, more focused J went into that office yesterday, and sat calmly listening to what we had to talk about. He didn’t interrupt or ask to leave as he usually did in the past.
The doctor and I talked about how TGG’s absence has affected J. We also talked about how the sudden integration and equally sudden disappearance of his nephew from our family life has affected J. The doctor agrees that these things are very difficult for J, and that it may take him a very long time to overcome the resentment and antipathy he seems to feel for his brother now.
I also explained to the doctor that TGG came to visit for Dada’s birthday and announced that he is about to become a father again. He also has decided to get married. He had known about the pregnancy for a while but had opted not to tell us. We don’t know if the marriage proposal was the result of finding out about the pregnancy, or if that came first and the other second.
Were we upset? I don’t know. We were not surprised. TGG has moved so fast on all these life-altering decisions over the past three years that we cannot say any of this comes as a shock. We have never met his girlfriend, or her two children. We have never met her family. We are still recovering from the previous girlfriend pulling a rug from under us; we opened our hearts and our homes wholeheartedly, and then discovered that there were many conditions to our involvement in our grandchild’s life. Things got emotionally messy, and it was proving overwhelming for J. We had to tell ourselves that, while we are probably being horribly selfish, we have to think of J’s well-being first and foremost. He has no one else to look out for him.
We asked TGG to please understand that an instant family is not an easy thing for J to adjust to, that it’s been a rough year, and to give us time to see how we can navigate this situation so that we don’t have any regression that will affect J’s transition into a more independent life. We don’t think TGG gets it, though. That very night he was asking when we could get together for lunch or ice cream to meet everyone. Dada and I have spent many hours talking about how this is going to affect everyone, and we don’t see J taking like a duck to water to two toddlers, a baby due in February, and his brother’s soon-to-be wife as frequent fixtures in our home. The year-old baby we introduced last year who disappeared shortly after turning two was heart wrenching for him; I had to make the PECS that indicated his visit disappear, and J spent a good long time not wanting to watch The Three Little Pigs because that is what he and his nephew used to watch together. The high-chair we have stored in the garage is now covered with a blanket because J would stand there and stare at it when he went in to get his snack box ready in the mornings.
The doctor agree with me: J’s equilibrium and mental health are a priority. We need to make sure that we take him into consideration as we move forward with all these changes, and that might mean that TGG has to cool his heels for a while before introducing his whole family. Of course, TGG has never been one to cool his heels, and he seems to have lost touch with what we’re up against here. We know what it’s like to have small children; we know what it’s like to go from me to us to ALL OF US in short order. We understand, but…we are middle-aged people looking at the shorter side of life while caring for a developmentally-disabled adult who has mental-health issues. We have to tread with caution and exercise wisdom.
So many things have happened this year: my father passed away, TGG moved out, we gained and lost a grandchild in a very short time, J finished school…and now we have more skipped beats, lost stitches, knots, and hiccups in our story. It is inevitable, but it also has to be handled with a certain finesse. The doctor wants to make sure that J doesn’t feel like he’s being imposed on and reverts to the unmanageable anxiety that caused his bouts of aggression, SIB, and depression. We don’t want to go back to meds. We want J to move forward, and that takes work.
I was recently told that I am a narcissist. As a child I would run to a dictionary when a word I didn’t know what used around me; the definition I know of narcissist doesn’t really apply to me, but I suppose it could be used in a wider sense. Because it’s what I do, I’ve gone back and read what this means, and I still don’t think it applies to me, but I am not as intelligent or successful as the person who called me this. If anything, I think I simply am an introvert, and I focus on my family because, well, no one else outside of this environment will do it for me. Our well-being as a unit, and the well-being of each of us as individuals is important to me. I make no bones about not being a people person, and I know that people, in general, do not like me. It is not a loss to either entity.
In the past weeks I have realized that, yes, we live in this bubble that is hard for others to understand. I understand everyone has their own bubble, but ours seems to carry with it certain pitfalls that are outside the realm of understanding for outsiders. I can easily empathize with people’s situations because they are more easily and readily accessible to human experience; our situation, unless you have experienced it more personally, seems to elude the grasp of those who don’t deal with ASD on a daily, non-professional basis.
The doctor gave me a measure of peace of mind. He is concerned about what all this upheaval can do to J, and he wants us to be as sensitive to his needs and reactions as we possibly can. Dada and I have talked about it, and we will set up an opportunity to meet with TGG and his family to explain in person WHY we need to take things very slowly. Will they understand? Ah, that’s another matter entirely…we’ll see. We can only hope…
So…there you are. Feel free to give your opinion. I listen to all, and I do take them into consideration.