So, I haven’t written here in ages. I have meant to. I have begun to type posts to share about appointments, incidents, challenges and cheers. But, one thing or another has distracted me, and I have ended up publishing nothing but comments on others people’s posts, which, I admit, sometimes could have been posts in and of themselves. (Thank you, by the way, for moving me to dialogue with so many of you!)
Yes, since the inception of the SPD Blogger Network, other folks’ words have made me think, made me smile, made me cry, made me realize I am not alone and… Okay, I admit it. Sometimes done the opposite. Sometimes, reading about others’ experiences has made me feel even more alone than ever.
Because my son is “unique”. (Oh, for a dollar for each time I have heard him described as such!) His symptoms and behaviors don’t seem to fit into any official diagnosis neatly. In fact, I have been told by a neuropsych that my son is “unique even among the children (that he) sees” and that we have a “long, hard road ahead of us”, since our son does not fit classically into most dx’s, but definitely has ADHD and sensory challenges.
Likewise, a neurologist recently called my son “unique and complicated” and advised us to see a psychiatrist to further unravel what is going on with our boy. So, it seems that the professionals are stymied by our son, which, I feel, leaves me figure things out with fellow parents. But, hey, perhaps that’s because many professionals just don’t buy into SPD.
(Allow me to digress for a Mama Tirade here: Might I grouse about how the neurologist we just saw? I thought he was on board with SPD since he works at the same center my son goes to OT and Feeding appointments at, and since he kept mentioning my son’s tactile defensiveness during our appointment. But, after biting my tongue through two hours, on consecutive days, with this man who so obviously was not accommodating our son’s sensory needs, I figured out why he didn’t use simple strategies to quell sensory needs in order to help my son better attend to testing. Near the end of Day 2′s appointment, the man actually said to me that SPD is something “OT’s have made up” and that it will never get into the DSM because doctors and psychiatrists feel it is something Ayres came up with that OT’s have latched onto. Sensory issues are a symptom of other things, but there is no such thing as SPD. What?!?! And, even if it is “just a symptom, “why the heck couldn’t you, Mr. Neurologist, give us a better handle on what it is a symptom of, instead of passing the buck and directing us to go to a psychiatrist. Argh! It was all I could do not to pop my cork, which I must have to a degree, since said Neuro labeled my husband and I as “intense parents” in his note to our primary care physician, who, luckily, knows us better and interpreted the words to mean “vigilant…in a good way.”)
(Okay, tirade done. Now, back to why I feel alone here sometimes…)
So, it seems that medical professionals have yet to find a DSM-endorsed fit for my son and that SPD might just be the missing link? Right?
Or, maybe not.
Sometimes, when I read posts here, I think, “us, too” or, “I so relate”, or, at the very least, “I can understand that.” But, at other times, I wonder:
Does my son really have SPD? He doesn’t respond much to many of the traditional treatments, such the brushing protocol. He can survive days when I neglect his sensory diet. We get reprieves from meltdowns, sensory overload and other tell-tale SPD signs and symptoms, which I don’t hear many others speak of much. In fact, at times our experiences with our son seem mild, even negligible, in comparison to those faced by others here at the SPDBN. Maybe I just have a unique boy that I jumped too soon to slap letters onto.
And so it is, I spiral into a place of feeling alone instead of united. I struggle with the ominous questions: Behavior or SPD? Both? Something entirely different or something in addition? I wonder if I have been imagining things for years on end, misinterpreting signs and symptoms, labeling with letters that don’t fit… I feel badly that I may have bandwagoned or guilty that I have allowed myself to see “wrong” in my son instead of simply blessings and grace…
At such times, I rally myself to stop DOing everything – OT, Behavior Therapy, Feeding Therapy, rounds of dx appointments, reading, researching, sharing and searching – and to just BE the best mom I can be to my “unique” boy and his siblings, forgetting all labels, neglecting all support systems and simply hunkering down to get through inevitable meltdowns, overload or quirkiness some days so I can better savor blessed “normalcy” on others without all this, well, lonely wondering.
And, then, I read something, witness something, feel something or simply hear a whisper in my Mama Soul that says:
You aren’t alone and you need to share. You need to be there for your boy, to advocate for him, to listen to others who have children somewhat like, to offer support and be supported, to recognize that every child – SPD or not – is unique and every situation is, too, some to a greater degree than others. Moreover, you are called to DO and to BE. Move on, Mama. Do what you need to do, what you can with what you have, right now, even if it’s just questions. Be just who you are to exactly who your boy is with precisely who is sent to join you along the way, even if you do not understand much of any of it.
I listen to that voice. I am doing and being right now, right here, as I lay next to my child whose busy brain took literal hours to shut off into slumber and share with you this completed, albeit unpolished, post in which I thank each of you for sharing your journeys and own up to part of mine in the hopes that if there is another parent feeling alone out there tonight that you might realize you are not. Your child is with you. Other parents are with you. This SPD Network of folks is with you. I am with you.
I get it. I, too, know that sense of feeling alone, even when I am not.