(Warning: this is a really long musing)
I have no idea how many bumps are in the journey ahead, what turns or twists to anticipate. It has been +6 months since the dx and it has been a surprising and unexpected route. I am the type that likes a plan, some sort of structure, to prepare myself and feel secure in knowing what is ahead. But of course, life doesn’t go that way, much less this type of journey.
Waves of Grief
I suppose the first wave was the initial shock. Even though W and I expected it to some degree, it was overwhelming as we learned more and more about our son. As we researched, things started to make sense about him and why he was/is the way he is, and where he is coming from. It was comforting to finally have answers, and terrifying at the same time. And then the pressure to advocate for our child and fight for services, while still learning about him and processing it all — it was a lot to swallow at once. Like sipping through a blasting fire hose. Drowning.
The second wave came when I sensed that services were not going to come easy. In fact, I had a feeling that we were going to be denied across the board, and the pending situation revealed in me a hidden security and hope I had placed in services/therapy. And with the possibility of it being gone and unavailable, I was sent crashing downward even more. The future felt like a big black hole, desperate, frantic, frightening, and unknown. By this time, I had read/researched enough to have some good understanding of potential future outcomes with N’s current trajectory, and a lot of them terrified me. It was another layer in grieving and saying goodbye to my idealized child. I couldn’t get through a single day without breaking down every couple of hours. I couldn’t see “regular” kids or talk to “regular” parents/friends without suddenly feeling overwhelmed with a wash of emotion. I devoured God’s Word like a starving person. The pain inside felt actual real physical pain. It was around this time that I knew I had to downsize, fast. I felt like a sinking ship and I had to keep my buoyancy by letting go of a lot of things and (unfortunately) a lot of people. I deactivated my facebook account. I stopped talking to a lot of people. I stopped crafting. I was in lockdown, a personal fast, a private retreat, to stay afloat and find my true north. And to shift my hope and security towards something different, Someone different.
Today I’m in a different place. The emotions of the previous pains are still around, but to a lesser degree. God has (and still is) meeting me where I am at, with very specific situations and scenarios and words of comfort and through individuals… in a very personal and specific way. I am overwhelmed with hope and the experience of His love in every direction.
And at the same time, I realize that I am also grieving a third component, and that is my community. Every person that is ahead of me on this journey, has warned me about this, and I was naively hoping I would not have to go through this, but it is inevitable. I cannot maintain my current community, or my current relationships, at previous levels. It’s hard to relate to others, and have them relate to me. It’s like I’m in some alternate universe/twilight zone where I am unable to meet them in their world, and they have no idea how to enter into mine. And on top of that, well-intentioned people throw at me “advice” or comments that diminish the serious reality that I live in, and the very real challenges that my son goes through on a daily basis. I have even had others “argue” with me about my son’s dx. That is not up to debate at all, their dismissive and judgmental attitude and words injure me and it will literally take me weeks to recover. It’s as if 90% of my community want to offer me their own diagnosis/opinion. One individual even questioned my competency as a mother. I feel whispers around me, hushed conversations about me and my son in private. I cannot handle it, their words are like cinder blocks thrown at me; and the weight of them causes me to sink further and further, and I do not want to drown, I cannot afford to drown. I need to be present and fit and able to be there for my family and actively care for my young children. If only they would show their love by wanting to learn about our situation/N’s situation, and be accepting and not judging, I would gladly share articles and information. (A few have asked, and I am grateful for their openness and acceptance.) But I cannot, and will not, take other people’s opinions. Unless you are a diagnosing professional that specializes in this particular field of study, please keep your uneducated opinions to yourself.
It pains me to have to even go through this part of grieving; this is harder than swallowing my son’s dx. I am a people person and because of how I was raised, I have ended up being people-pleasing and seeking other’s opinion/approval to validate my worth and well-being (messed up, I know). And this current situation flies right in the face of all these issues. I naively assume that everyone is “safe”, when in reality, most people are not safe enough for me. My self-protective self tells me to keep my nose to the grindstone, ignore everyone, and keep doing what I’m doing. I have enough on my plate as it is. There is no auto-pilot parenting here, that’s for sure.
I’m not sure where the future will take me. I know practically speaking, N’s prognosis is quite bright; the past 6 months I have seen so much growth in N. No doubt, there are things that he will struggle with all his life, but despite that, his prognosis is positive. For me, I am still reeling from the dx that was almost 9 months ago, despite seeing N’s encouraging progress. My calling is crystal clear; it is my children and my self-care. Self-care has always been a struggle for me, and so I continue to ask God for guidance and wisdom as I trudge through these uncharted waters.
The past couple months, N has developed a lot of fears (age appropriate). I bought a couple great books for preschool kids on various “negative” emotions and how to deal with them. N wants to read the “When I Feel Scared” book every night before bed, and we talk about it. And because N loves to draw, his OT suggested doing some sort of drawing version of a social story, something that would embolden him and help him feel more empowered in the process. So N and I sat down together and drew a couple scenarios in the past with the theme of N being brave. N is very proud of the pictures.
Getting a haircut (drawn mostly by me as an example for N):
In his room at night in the dark:
At the doctor’s office, getting shots (W and N in the doorway of the exam room, doctor opening the door for them):
Next up will probably be a picture of a dentist visit…
The sensory stuff is always difficult to explain to people, so I just kind of stopped doing it. But I know it is a large part of N’s experiences and how he views and interacts with his everyday life.
This morning he got a haircut. For any parent with an SPD child, you know how difficult that can be (among other things). We did our best to prep him ahead of time. I prayed with him in the car as we headed out. And we talked about it some more as we waited in the waiting area.
And then something miraculous happened. The previously panicked and worried kid suddenly said he wanted to sit in the chair all by himself, like a big boy. And he did terrific!!!
He did his best to stay as still as he could, trying to “power through” as hard as he could, with his eyes squinted shut. I could tell he was really nervous, but he really did try very hard. I was so proud of him. When it was over, he was proud too. We took a trip to Starbucks for a couple juice drinks as a reward afterwards.
The rest of the day, however, went downhill. He became ultra sensitive to everything (his tolerance was suddenly a lot lower than usual). He had a couple of panicky meltdowns over things that normally wouldn’t shake him up that badly. And looking back, I realized how much that haircut took out of him, and he didn’t have as much resolve for the rest if the day. I wished I was more sensitive towards him about that. I guess tomorrow’s another day…