I am SO grateful that for the most part, when Tenley grows up (and even now), she will pretty much do everything that everyone else does. There is hardly anything in her every day behavior that would suggest to a passerby that she has "issues", in fact to most people it appears that she is a normal three year old that is just overwhelmed, most would just think she just needs a nap.
This is a blessing, but it is also a curse. I'll tell you why.
Recently I had a pretty invalidating experience where someone said "I'm sure the Dr's know what they are talking about, but Tenley seems fine sometimes..." and they went on to suggest that her problems stemmed from my lack of consistency.
It wasn't the first time I'd heard the "but she seems normal" or "I know so and so with an SPD or Autistic kid, she doesn't behave anything like that" verbage. I try not to take it personally. I know people have a picture in their heads of what a child with Sensory Integration Disorder or an Autism Spectrum Disorder behaves like. They picture kids rocking themselves, shouting, never
ever making eye contact, and memorizing the TV guide.
They don't picture anyone like Tenley.
I try not to take it personally, but it gets to me after awhile. It makes me second guess myself constantly. I think to myself, "Am I trying to fill some desperate need for attention of my own that I am so willing to accept an erroneous label of Special Needs on my child?", or "Have I failed THAT horribly at establishing a routine that I caused these behaviors, these behaviors that are slow to change or unchangeable, in her?". I am, of course, faulted as a parent. I am aware that I am less than organized and have pretty inconsistent self motivation. But the answer to those questions I ask myself is, of course, no.
I then remember the things that brought us hear. I remember marveling at how many words this smart little less than two year old knew, only to see her in pieces not ten minutes later over something she couldn't tell me because she couldn't access the ability to communicate effectively. This didn't just happen on occasion, it happened all day long and seemingly with little to no provocation. I could see it in her eyes, she was fearful and frustrated. I remember the nights I laid awake thinking of new strategies, new ways to tweak her schedule, meal times, what is in her meals, order of activities such as bath and book and play, new ways to help her recognize bed time or other pieces of a good daily routine. I remember notebooks full of logs and lists and brainstorming sessions. I remember watching
Happiest Baby on the Block, reading the
No Cry Sleep Solution, logging countless hours in parenting forums, several trips to the pediatrician, and scouring Google on sleep training advice. I remember keeping sleep logs in my phone of when she slept and woke. I remember trying to enforce all of these methods and routines with surprising militancy considering my own tendency to check out when things get rough in my own life. I also remember throwing my hands in the air, giving up the militant diet and stopping all of the forcing her to into things she obviously was not going to do. At some point you just have to say, ok this isn't working. Clearly, we have a unique situation on our hands.
I know that I am less than go-getting, but let me assure you, if this were as simple as being home for a specific nap time and reading Goodnight Moon every night at 7pm sharp and keeping the house dark and quiet all night, I'd be all over that like white one rice. But it is not, it won't ever be.
So-
Well intentioned family, friends, and onlookers, while I appreciate you and your concern and support, I have this to say to you:
If you cannot refrain from the "Maybe if you (insert one of many tried and true obvious solutions found in nearly every parenting resource known to man here) it would help", then just please don't talk to me. It sounds harsh but I'm that serious. I am so TIRED of trying to validate our situation to you, I don't have the energy, and more importantly I don't have it in me emotionally. It takes a lot out of me. I hardly have any patience left and I don't need to be spending what is left of it doing THAT. I will probably just stop talking to you, and that's the gospel truth.
However if you are willing to follow our journey with an open mind and compassion, I invite you to, whole heartedly. There are a lot of families with children with mild forms of developmental disorders, and it's more of a tricky place to be than you would think. I would love to be one to help spread awareness so that the world may become more sensitive the varying degrees of these disorders and the attention and heart they require.
Let me just say Tenley is on 50mg of a medicine that her developmental pediatrician thought would knock her out completely back at 12.5mg and then be weaned from six months after beginning. The 50mg dose not only doesn't knock her out, the only purpose it serves is to keep her asleep through *most* of her night terrors, and keep her nightly sleep length somewhat consistent. It has been over a year.
Tenley goes to a special pre school program and her IEP showed that in the best areas she has only made a 20% move toward our goals for her in the best areas, and in some areas she has shown no progress at all. The goals aren't even aimed at what her peers are doing, they are Tenley specific small goals.
Anyhow, I could go on all day, as this has been something that has really been on my mind lately.
This is a great article called "Why Mild Matters", that illustrates what I am trying to say much better than I can.
http://www.sensory-processing-disorder.com/why-mild-matters.html
