I’m not sure where to begin with this entry, so I guess I’ll just start at the beginning.
Many of you are aware that Vincent was practically deaf for the first two years of his life. I had to fight long and hard to get him approved for the surgery that would finally allow him to hear the world around him clearly.
That surgery was completed the day after his 2nd birthday.
Since that time, he’s seen both occupational and speech therapists to help him “catch up” to the verbal / comprehension level of his peers. Test after test has proven Vincent is intellectually at level (or above) for things like reading / math, but when it comes to actually speaking and following directions, he’s still lagging significantly behind other kids his age.
Well, about a year ago, his case worker decided that he needed to be tested for Autism. I immediately rebelled. I’ve taught plenty of children on the spectrum. Vincent doesn’t “fit” on the spectrum. Plus, I knew that if he was tested by the district, they would be obliged to share those results with every public school in the area, and I absolutely refused to allow my not-yet-3 year old son to be labeled.
They argued that they wouldn’t continue services without the test, so I showed them the door. I was so angry. I remember that final meeting clearly. I told them in no uncertain terms that they could take their theories and shove them. I would NEVER allow testing of my 2 ½ year old son for autism given they hadn’t even taken into consideration the 2 years he spent in a mostly soundless world. I was so sure they wanted to slap a label on him and be done with it that I could’ve torn their heads off.
So I not-so-charitably told them to find the door and let it smack ‘em on the way out. Children should never be so carelessly categorized.
I explained the situation to my mother and best friend (mom’s a kindergarten teacher and Mary has her Masters in psychology). I asked if I was just being a blind parent. Were they seeing something that I was just refusing to?
They assured me I wasn’t being blind and they, too, were surprised the district was pushing so hard for such testing.
Fast forward a few months. I noticed that he was still having difficulties with eye-contact and comprehension. Speech had gotten significantly better, but comprehension was still lagging. I was consistently finding him off by himself as opposed to playing with his peers.
I admit, flags were going up, but I still didn’t believe Autism was the answer.
As the months progressed, and signs of Vince being slightly “off” piled up, I began to have doubts about my read. Was I too close to him to really be objective? Was I allowing some sort of fear to inoculate myself against the prospect of Autism?
I again brought the issues forth to Mary and my mother. Both of them assured me – again- that I wasn’t ignoring anything and I wasn’t trying to convince myself that he was perfect. However, both of them agreed there might be some underlying issue that none of us could put our fingers on.
So that brought us to his first day of preschool I’ve been excited about for the last two years.
After speaking with the principal (and the teacher - both of whom, by the way, are complete rock stars), I decided it would be best to come in to observe Vincent, myself. I took the day off and just watched him. Sure enough, everything they said was spot on. He was defiant, aggressive, and he screamed at both his teacher and the aid. I was dumbfounded.
The principal, his old daycare teacher, and myself had a bit of a pow-wow to discuss what was happening. His old teacher was just as surprised as I was to hear about the extreme change in Vincent. He was, after all, one of her favorites. She’s pregnant, and she noted Vincent was always very careful with both her and the baby he knew was inside her. He was friendly with the other children, and he never screamed or acted defiant.
Hearing this, I think, made the principal hopeful that Vince was just in the middle of transitioning to a new place. As a result of this conversation, she agreed to give me two weeks to help him make the transition. I agreed that, if at the end of the two weeks he was still a handful, we would make other arrangements.
Well, here we are two weeks later and Vincent is in a new school.
This was a very difficult experience for John and I. It was especially difficult for Vincent. I still feel terrible that we put him through such stress. I feel terrible that we put his teacher and classmates under such stress.
However, I’m grateful to God that we endured it because without it, I don’t think we’d finally be on the right track with getting him the help he so desperately needs.
You see, in my quest to deal with Vincent’s sudden changes in behavior, I reached out to everyone and anyone for help. In my search, I began getting suggestions for Autism testing again. My friend suggested he was oppositional defiant. My mom suggested Autism testing for Asperger’s.
I still refused to entertain the notion because my experience with teaching Autistic children shouted at me “No.”
There was something else, and I couldn’t figure out what it was. So I kept looking. I kept asking. I kept praying.
That’s when I ran into Cam’s post entitled “Mae’s Journey.”
Suddenly, the last two weeks of chaos and confusion began to come into crystalline focus.
You see, Cam did something incredibly brave. This isn’t surprising given that she’s been known to tackle some pretty big issues. However, this particular topic is different in that she publicly acknowledged that her precious little girl might not be “perfect” by society’s standards. Of course she’s perfect in God’s eyes, because she is exactly as He wished her to be, but no parent likes to paint anything but the rosiest picture of their darling children.
I’m the same way. I think most parents are.
Cam, however, took the incredibly brave step of noting the struggle she’s had trying to help Mae grow and learn. She, too, heard talk of Autism. However, she also heard talk of something called Sensory Processing Disorder or “SPD.”
Those three little letters jarred something within me.
I quickly grabbed his therapy notes off the shelf and combed through them. Sure enough, I noted the various “SPD” notes littered throughout. I remember asking his therapist what those letters meant. She, at the time, explained them as activities they did or techniques she used (weighted vest, hand combing, etc). I just accepted that the “SPD” was a code or something that they used to help keep track of the various exercises they did.
So once I realized “SPD” actually stood for something, I reached out to his therapist. We’re still friends via Facebook because she wanted to be able to keep up with Vincent even though he was no longer in her care.
I confronted her with the notes.
She admitted to me she had always been believed Vince to be a Sensory Seeker (a type of SPD). She wasn’t legally able to tell me because I guess she’s not a psychologist. Point is, she agreed to come over and observe him, herself, now that he was older.
She came and observed, confirming she believed him to have SPD.
The next few nights found me pouring through material online. The more I read, the more Vincent’s behavior made sense. I finally felt like my confusion was being answered.
This might sound weird, but it’s that feeling you get when you try on “the dress” for your wedding, I guess. Everyone who suggested something to “fit” Vince felt wrong. Autism, Asperger’s, ADD, ADHD, ODD… none of them felt right.
As soon as I read up on SPD and compared my research to Vincent’s erratic behavior, all the pieces of the puzzle lined up and I began to see my baby in a new light.
I’m currently waiting to hear back from the child-psychologist on when we can start therapy for him, but in the meantime, I’ve been doing my best to research ways to help him cope with new environments. Unsurprisingly, the various techniques I’ve learned via Pinterest and Google really have helped tremendously, even in such a short span of time. This just highlights for me that I’m on the right track.
Thank God! And thank you, Cam, for being such a brave mom to post such a personal struggle online. Without that entry, I don’t think I would’ve been able to put the pieces together for my own son.
Stuff I Found Helpful:
Free online seminars, webisodes, classes, etc. GREAT library on SPD-specific information.
Great jumping off points for folks curious to know how Autism is related to SPD.
Hugely helpful, this article is a blog entry by a mom with an SPD son who is very similar to Vincent.
SUPER helpful because it's written by a woman who, herself, struggled throughout childhood with SPD and has learned to cope as an adult. She, too, shares many similarities to Vincent.
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