You're Not Listening to Me!
I have been having a very rough time getting Vincent to pay attention to directions. Because he's all over the place, I need to be very firm with him sometimes.
"Vincent, look at me. Look at me in the eyes, Vincent. VINCENT."
Then he'll finally realize I'm talking to him and look at me for a split second before turning his attention elsewhere.
"Vincent. Mommy is talking to you. You need to look at Mommy."
He looks at me again for about two seconds. When I think I've got his attention, I begin to tell him to get on his shoes. No dice. He's not paying attention again.
"Vincent, put on your shoes or we're not going outside."
Begins to move towards shoes, but clearly only discerned the word "shoes" because once he gets to where his shoes are, he makes no move to put them on.
"Vincent, you're not listening to Mommy. Look at me in the eyes."
He looks into my eyes.
"Put. Your. Shoes. On or we're not going outside."
UUUUUGH. Then the process all but repeats itself if he needs to put on his jacket or take a back pack with him. It's enough to drive me bonkers sometimes.
He's also having issues with impulse control.
"Vincent, stop smacking your stick against the slide."
Not two seconds later, he's smacking at the slide again.
"Vincent, look at Mommy in the eyes. Did I just tell you to stop smacking the slide?"
"I don't know."
"Vincent, stop smacking the slide. If you smack the slide again, I'm going to take away your stick. No more smacking the slide, 'cause if the stick breaks, you might get hurt."
He stops smacking the slide, but maybe two minutes later, he's at it again and I need to take the stick away.
All day, every day, this is what I sound like. I'm trying to splice together the negatives with positives ("Good job being gentle with Zoey!" or "I'm so proud of you for playing so nicely with your friends!"), but I've been feeling really overwhelmed by his inability to really listen and process directives (an ability he HAS to have for a productive experience in school).
I'm beginning to worry that I won't be able to prep him in time for school in July and that I'll be faced with him being removed again. I realize that's not likely, especially because this school had worked with him for two years successfully, but I can't help but worry.
And then there's his litany of "I'm Sorry."
Since he hasn't been listening to directives, I've had to punish him (taking away the stick, for example, or not letting him go to the park because he'd thrown a temper tantrum that morning).
When he realizes he's about to be punished, he immediately says "I'm sorry" because he knows that's what is expected of him. However, he's not usually sorry. He'll say "I'm sorry" and in the same breath, "I'm really angry with you" because I'm taking away a toy or something. He's not sorry he didn't listen. He's sorry he's in trouble.
I was about to say to him "I don't want to hear 'I'm sorry' from you ever again" until I stopped myself. Why? Because I saw myself in him. Painfully so.
How many times do I have to apologize in the Confessional for the same stupid sins over and over and over again? I have to wonder - am I really sorry at all? If I were, wouldn't I stop myself from getting into the same trouble?
And if God were to shirk my apologies, what would I do then? He even accepts my miserable contrition and extends mercy. How much more, then, should I work to extend that to Vincent so he has an example of what God's mercy looks like?
So I stopped myself from giving into my own frustration and sat him on my knee. I said, "Vincent, when you say "Sorry" to Mommy, it means you're not going to do the bad thing anymore. Sorry means you're going to work really hard at listening and doing the right thing, okay?"
He instantly shook his head "Yes" because that's what he thought he was supposed to do. I just sighed and let him loose. I imagine that's how God feels sometimes when He sends us forth from the Confessional.
I'm going to try a lot harder to be more steady in my resolve to "sin no more and avoid the near occasion of sin."
A lot harder.
Sorry, Lord. Really. <3
John, Vincent and I attended the surprise birthday party of a friend of ours this past weekend. It was really nice of Vincent to be invited, too. Several children were in attendance with Vince being the oldest (and most active!).
Unfortunately, John and I didn't know there would be a pool at the house. Had we known, we would've gone out of our way to find a babysitter. Vince, like every other child in the universe, can't be near a pool without wanting to dive in head-first.
It was still too chilly for a swim and we hadn't brought bathing suits anyway. That didn't stop Vincent for begging, bartering and pleading to go for a dip, though. When he realized John and I weren't going to budge, he placated himself by zipping around the edge of the pool, successfully giving John and I enough agita to last us the rest of our lives.
I had to put him into a time out for disobedience. He wouldn't stop running around the edge of the pool even though I'd asked him not to three times. So I stuck him in time out.
My friend, Leo, made a well-meaning comment. He said, "What's the worst that can happen? Skinned knee? Soaked pants? Just let him be."
Oh Leo. How I love Leo. He's a new parent, himself. He's got a little princess named Maggie who is about 8 months old. He hasn't had the pleasure of her testing boundaries yet. He hasn't tasted the anxiety of seeing her (in his mind) tumble head-first into an ice-cold swimming pool. He can't even imagine what that's like until she takes those first precarious steps into toddler-hood. It's all fun and games until your kid discovers how much fun dangerous situations are. LoL.
Anyway, Leo didn't realize that aside from me trying to teach Vince obedience (and actions having real consequences), I was also trying to prevent, specifically, soaked clothing. Most people don't like sitting in wet clothes, but for an SPD kid, that's akin to being water-boarded; it's torture.
Vince sometimes freaks out if he feels even a spot of wetness on his pants or shirt. Imagine, then, the freak out that would occur if ALL his clothes were soaked through and clinging to him.
Leo doesn't think it'd be a big deal, because to him, it wouldn't be a big deal. To Vincent, however, it'd be huge.
John was getting increasingly agitated, so instead of leaving, I took Vincent inside and away from the temptation. The poor kid was over-tired and frustrated by several things:
The fact that he hadn't had a nap that day (because the party started when he usually goes down) only added to his upset. After I had him sit and settle for 15 minutes to regroup, he was able to sit on the couch and watch a game being played without issue.
It's funny. I don't fault Leo at all for the comment he made. Several of our friends waved off my attempts at wrangling Vincent as overprotective. They didn't realize I wasn't worried about him bumping his knee or even going for a swim. I was aware of a bigger problem that would come should the latter accidentally happen.
My guess is that's how God feels sometimes. So often, I look at a situation and figure "Eh, this isn't really such a big deal" while God is shaking His Head and saying, "Gina, put down the extra slices of bacon. You don't think it's a big deal, but you've been eating like a glutton recently and are increasing your risk for heart attack. I want you to die saving orphans from a burning building, and you can't very well do that if you're dead of a bacon-induced heart attack."
God is able to see so much more than we can. He knows more than we do. He's experienced more than we have. So when He repeatedly throws up roadblocks to our own ideas of satisfaction, my guess is He has good reasons. Just as I had reasons that went beyond Leo's understanding, God has reasons that extend well beyond mine.
Vince vs. Pasta Sauce
Last night, I took Vince to visit with my friend and her family. While there, Vince had a mini-episode with the pasta which understandably frustrated some folks, myself included at one point.
For the last year or so, Vincent has been very finnicky about pasta - specifically pasta sauce. I thought he was simply getting into the "fussy eater" stage, but truthfully, he's not a fussy eater. He still eats fish, lettuce, carrots, cucumbers, beans, corn, etc, etc, etc. He loves ham and chicken, goes to town on pork chops or turkey, and can eat starch like it was his job.
Pasta, however, he will only eat white or with cheese (mac-n-cheese).
The last year, I just thought he was being picky, but it finally dawned on me that it's a very specific sensory response.
Tomatoes are naturally acidic. In fact, when Vince used to break out in facial rashes as a toddler, his pediatrician warned us to steer clear of tomato sauce, ketchup, etc because he suspected they were the culprits behind his pimpled cheeks. When we cut them out of the menu, Vince's skin cleared up pretty well. Never thought a thing of it again.
His visceral reaction (almost like fear) to the pasta sauce last night suddenly made sense. He kept insisting that the pasta "smelled bad." What he actually meant was it TASTED bad, and not so much that it tasted bad, but that it hurt.
For you and I, our sense of taste and smell are inextricably linked. The same is true for Vincent, only it's a heightened experience. Sometimes he confuses taste and smell as a result of this. Also, his grasp of language still isn't super developed, so he kept using the word bad to express his negative association.
The nerves in and around his mouth and face have been inflamed enough by pasta sauce to instinctively tell his brain the red stuff on the yummy stuff is a bad idea.
He loves pasta, he just doesn't like the sauce, and it's because the sauce causes an overload of sensation.
But he likes pizza! Pizza has sauce!
Yes, but it's also got a lot of cheese, and being a dairy product, it is a base which neutralizes the acidic content of the tomato sauce. Much like a hot wing contestant chugs milk to stave off ulcers, cheesy pizza helps buffer Vincent's mouth against an overwhelming sensation from the acidic tomatoes. He still gets a few bumps on his cheeks after pizza, especially if I don't clean his face right away, but he doesn't complain that his mouth or tongue hurt.
In short, I'm not going to try to force him to eat red sauce anymore because I finally realize why he shirks it so much. It never occurred to me that this was a problem before. Now his disdain for pasta, Hot Pockets, ketchup, and even barbacue sauce makes sense.
I wish I had realized this sooner. Would've prevented a lot of frustration for all of us, especially at family gatherings (given that we're Italian and we love our pasta sauce). So if your child is getting picky about certain foods, give some thought to the sensation that particular food type might pose. It might not be pickiness so much as a sensational challenge.
I'd like to take a moment to reflect on a little known sensory disorder that many times coincides with Autism. This disorder is known as Sensory Processing Disorder (SPD). Autistic persons often have SPD, but not all persons with SPD have Autism.
SPD involves any disorder of your senses. This can range from over-sensitivity to light, smells or sound to an under-sensitivity to taste and touch. SPD can also affect the vestibular and proprioceptive systems which control balance, movement and spatial orientation.
As a mother of a young son with SPD, I've come across so many people who are unsure of and even put off by his unique behavior. Here are 10 things I'd like to say.
Please take a moment to read, share and spread the word. The more we educate others, the better we become at responding to these children who need us.
Some sensations, though inconsequential to you or me, are overwhelming to him. The tag on your shirt isn't noticeable to you, but for Vincent, his nerves are telling his brain that a thorn is digging into his neck.
He fidgets, but he has very good reasons for his fidgets.
You hear the voice of your boss telling you the deadline for your next project. Vincent hears his teacher explaining a math problem, but also hears the humming of florescent lights, the rattling of the heater, the chatter of other students, the footsteps of the aid, the cars driving by outside the window, and even his own breathing. Because his auditory discernment is not as strong as yours or mine, he is unable to focus on priority sounds and, in an effort to push aside all that noise, he makes sounds, himself, that help drown out the confusion.
I did not cause his Sensory Processing Disorder. My parenting style did nothing to bring on his sensitivity to certain situations. I love my child fiercely and do everything in my power to see that he is cared for, protected and loved. I may not be the most savvy parent in regards to the latest therapies available, but don't you dare mistake my novice ignorance for bad parenting. I are fighting to make myself and others aware of this disorder, and I are doing all I can to give Vincent the therapy he needs to cope.
So the next time you see us in the store while Vincent is having a meltdown because the lights hurt his eyes and the cart feels especially frustrating to his backside, refrain from suggesting I stop spoiling him. I might not be so charitable in my response.
We are working on this. Please be patient with him.
In addition to forcing John and I to keep the floors relatively free of items, this also creates a problem with shoes. Vincent is very sensitive to the type of shoes he's willing to wear, and it's many times a fight to get him to keep them on, even when we're outside. He's not throwing a temper-tantrum because he wants to wear his SpongeBob boots vs. his Spiderman sneakers... he's having a meltdown because his SpongeBob boots give him relief from his tactile craving while his Spiderman sneakers compound the frustration and add to his anxiety.
Again, please be patient. He is doing so much better with this, but it is a difficult skill to learn when your nerves rebel against you.
His memory is better than mine, his math skills never cease to amaze me, and his appetite for his new passion, spelling, makes my heart swell with pride. The creativity and problem-solving skills he's developed while playing adventure games with his Daddy have only proven to me that his capacity for intelligence hasn't even begun to be appreciated. Standardized testing cannot verify his penchant for architecture. Circle time cannot concede to his superior grasp of cause and effect. No Child Study Team will ever capture the wisdom he shows in his thoughtful, gentle care of those he instinctively understands need his affection.
Again, my son is fearsomely, awesomely intelligent.
What joyful music.
My son loves laughter. He loves being "tricked" and surprised. He loves being the cause of laughter around him. He'll clown about or say silly things with the sole goal being laughter... glorious laughter.
In a word, my son is love... pure, unblemished love.
Please remember that the next time his sensory challenges leave you frustrated or confused. Above all, simply remember that he is capable of giving and receiving love. Next time a sensory-craver like Vincent has a melt-down, respond with love. Push aside your own frustration and confusion because it pales in comparison to the anxiety he feels on a routine basis because of this disorder.
Respond with love, too, to the parents of these special children. Do not discount us as bad parents or folks to be pitied for having a "problem child." Far from it. We love our children and are proud of them. We are joyed at being given the opportunity to unwrap their potential and can't wait to see how they change the world.
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Spread acceptance by spreading awareness. <3
I spoke with my two directors today. I don't qualify for FMLA, but they're willing to work with me so as not to lose me as an employee.
So now I've got a little weight lifted off my shoulders. Now I need to come up with a working solution for all involved - Vincent, John, myself and work.
Thanks for the prayers, folks.
Financially, thanks to my husband's fiscal responsibility, we are in a good position. We'll have to cut back on some things, but we're blessed to be weighing our options at all in this regard. This is only a short-term solution. Even should we cut back on yearly vacations, change the way we spend money for holidays and birthdays, alter our eating and entertainment habits, I'm not sure we could justify the thirty-some thousand dollar hit we'd take should I leave my position indefinitely.
That's a lot of money. A LOT of money.
And that puts a lot of pressure on John to be the sole breadwinner. Already he takes on so much responsibility in this regard. I'd hate to burden him with a $30+ thousand deficit to boot, ya know?
Then there's always the question of job availability should I officially leave. There's no guarantee that I'll be able to quickly find a job should I need to when Vince rejoins school. All these things are what have me on what feels to be a teeter-totter.
But again, the fact that I can weigh these options at all is a blessing, and I thank God for his generosity.
I just wish I had a better idea of what the best course of action would be. Ah well. In time, I'm sure He'll reveal it to me. That fact that, right now, I was given respite by my company is a blessing, indeed. A much welcome one in light of this past weekend's anxiety of "What now?"
And again - thank you to each one of you who has sent me messages, comments and e-mails. This is going to sound really silly, but I felt my heart jump each time I saw one pop up. The joy of hearing from folks was enough, even for a moment, to lift my spirits. The suggestions are all being taken to heart, I promise. It takes me a while to process and read all the links that are sent, but I promise, promise, promise that I do, in fact, read them all.
Eventually I'll get around to responding to everyone. Just... please accept my humblest thanks for all the support and love you have shown to my son. It hurts me so much to see him ostracized by his peers and shirked by school systems who are unfamiliar with his unique set of challenges, but I am buoyed by the love you have shown him. I am hopeful for him, and you feed that hope.
Blessings to you all. I thank you with a mother's appreciation.
Can I Homeschool?
That's a question that's been bouncing around back and forth, over and over the last few months.
Truthfully, it's been something sitting in the back of my mind ever since Vince was a baby.
The answer to that question is "Yes, I can homeschool Vincent."
In theory, my background is education. I've taught children from preschool to high school. I've tweaked curricula to account for struggling students and I've developed entire lesson plans to challenge those gifted with a natural appetite for knowledge. So in theory, I could easily homeschool Vincent.
Theories, however, are often-times victims of reality. In this case, I don't believe homeschooling is the best option for Vincent. While my background with education is proven and strong, I don't have proper experience with Sensory Processing Disorder. Obviously I can learn, but do I want to subject Vincent to months of my own trial and error until I figure out the best course of action for him?
I fear that's doing him a disservice.
Then there's the question of financial feasibility. Are we able to rely solely on John's income? We can for a few months, but long-term? We'd really need to crunch the numbers to come up with a realistic long-term picture.
And then I worry for his social development. Most home-school families have a number of siblings, so they are able to learn social cues even amongst themselves. There are no real homeschool groups in my area... the closest to me is about 30 minutes away and in a different state. Again, that doesn't seem to be the most efficient course of action.
I can always put him into extra-curricular activities, but I truly believe there is something to be said for learning in groups (even small ones). I want that for Vincent because I believe with the proper care, he will flourish in such setting.
Right now, though, it looks as if I'll need to spend the next two months with him. I don't know what that's going to translate to in terms of work. It depends on how my conversation goes tomorrow with my bosses. Will I be able to take a two month leave? I honestly don't know. They can't really afford to lose a worker right now, especially given the contract we just took upon ourselves. But I have no other options for Vincent right now, so I either am granted leave or I give notice. Either way, it is in God's Hands and I'm sure it will work out as it's supposed to.
But I don't put forth that option as a last resort or even a jest. I truly say it knowing it's a valid option... just one I don't necessarily think is right for Vincent. I know I'm a good teacher, but I'm not entirely confident in my ability to learn new techniques that would specifically benefit Vincent in a manner that a seasoned special-ed instructor in a special-ed classroom would have already mastered.
Those are my thoughts, anyway.
I have so much respect for homeschoolers. I don't know that I am organized and effective enough to do it for my own son. That makes me feel like a bit of a let-down, but I'm trying to be as honest with myself as possible because I don't want my arrogance to be the cause of him falling further behind, ya know?
But thanks for all the encouragement and prayers. What a blessing your e-mails and comments were. I love you guys so much. Please know I kept you in my Easter prayers this weekend, too. <3 My family and I are blessed by your generosity of spirit.
My title isn't even a little bit kidding. I feel like I've ruined Vince forever regarding school.
As a child, I always looked at school as something fun. I enjoyed learning and I RELISHED taking tests because I liked to challenge myself to see how much I knew. I even liked pop quizzes. I always assumed my kids would one day be the same way.
How wrong I was and how incredibly harmful my expectation has been for Vincent.
I fear I pushed him too early into preschool, and the experience has left him scared of school altogether.
The knowledge of that kills me. It absolutely kills me.
Once again, I got a call from the principal telling me they could not work with his specific set of issues in the classroom. My husband and I had warned them of this MONTHS ago, but they poo-pooed us and assured us they were more than capable of handling his particular brand of behavior.
Now they realize they should've listened to us a little more carefully, because their Child Study Team could not assess what we'd already seen firsthand - Vincent is not equipped to handle a mainstream classroom. He's certainly smart enough, but from a behavioral standpoint, he is simply not ready to handle mainstream education. At least not yet.
And now they realize it after a grueling two months of frustration on their part and on Vincent's part.
I hate this. Vincent gets such anxiety about going to school which only makes his time there that much more difficult. The teachers are getting overly frustrated with him and it makes for a very upsetting experience for everyone... most especially Vincent. That sort of experience is enough to scare him off of school forever. What's to stop him from being terrified of school next September?
Four schools in 9 months. The Learning Experience (which he loved), St. Theresa's (which helped us diagnose him with Sensory Processing), Tippy Toes (which harbored a bully), and now the public school which gave us an overly confident CST that now only wants to touch him if he gets an Autism diagnosis.
Pardon me while I cry my eyes out in frustration, disgust, and guilt.
I feel like I've failed him so terribly in such an important area of his life... I don't even know how to handle myself right now. I don't know how to handle him. I don't know how to handle John who is just as upset and frustrated as I am.
This entire year has been one massive struggle after another with his schooling, diagnosis, therapy and ARGH. I don't know how to navigate this for him. It's my job to know... my expertise is education, and I can't figure out what to do or where to turn without causing even greater damage to him.
There is no school that will take him now... not with only a few weeks left in the year. Next year no one wants to touch him because he doesn't have a "proper diagnosis."
WTH is a proper diagnosis??? He's been seen by a developmental pediatrician and she diagnosed him with Sensory Processing Disorder. It's not in the DSM, but it's recognized as a valid disorder by doctors across the world. There are therapies aimed at teaching a child to handle the symptoms. But yet because it isn't in some stupid blue book schools use as guidelines for IEPs, Vincent can't get the help he needs???
THAT ENRAGES ME!
It's not like he's a bad kid. All of his teachers insist that his intelligence is above average and he is perfectly sweet, obedient and docile in a small group environment. He's super affectionate and compliant. It's only when he's in a large group that his symptoms show and he falls apart and becomes a wailing, inconsolable mess of screams, tears and frustration.
I can understand that. It's like asking a blind kid to read a book. It's going to solicit frustration and tears because a blind kid CANNOT READ until you give him braille.
Vincent CANNOT learn in a large group. He is best suited to a small group environment. We've known this since the beginning of the school year, yet no one wants to try that because he doesn't have an Autism diagnosis.
What they're telling me is that they don't want to try that approach because without a "proper diagnosis" the government won't subsidize him as a special ed student. If they're not getting paid to teach him, why bother?
*Cue more tears*
I hate this so much, and I pushed him into it thinking that along the line, they'd finally understand he needs a small group and allow him access.
Stupid me. Arrogant me.
And now my son has almost 9 months of fear and anxiety under his belt by being bounced around in my attempt at giving him what I thought he needed.
And what has it done for him? What have I done to him long-term?
I shudder to think of it.
And now I don't know what to do. Short of quitting my job and homeschooling him, myself, I have no idea what to do.
I am lost. God help me, I am lost.
This is Vince and our friend, Chrissy. This photo was taken today, right after we got back from the pediatric office. Vincent had such a fun time there that he promptly dressed up in his doctor costume (a Christmas gift from my mother - thanks Mom) and went to work on her. It was adorable!
Anyway, the evaluation was pretty straight forward. The D-Ped did two types. The first was a history log of my pregnancy with Vince and his behaviors since birth.
Good thing I kept a meticulous baby-book for him, because I needed each month to remind myself of which milestones he hit and when he hit them. I highly recommend keeping up with those books for your children if at all possible. I always thought his would be a keepsake memento. It's actually been more of an archived medical history given what I've now learned about milestone achievement and their connection to autism and sensory disorders.
But I digress.
After the history, she did a current snapshot of Vincent's behavior through conversation. She asked me questions, I answered. She took notes the entire time and was sure to ask for clarification on anything she was unsure of.
The entire time we were having this discussion, there was another D-Ped in the room simply observing Vincent. They had a train table set up and the 2nd D-Ped was there strictly to observe Vincent and his behavior as I spoke to the first doctor, as I interacted with him, as the other doctor interacted with Vince, and as he was left to his own devices. I thought that was great. Two doctors for the price of one, and each could focus on a separate task instead of one trying to observe Vince while getting a family history down.
Anyway, once the D-Ped was done asking questions of me, she had me fill out a GARS-3. For those unfamiliar, GARS stands for "Gilliam Autism Rating Scale" with "3" being for the 3rd edition.
As I filled out the scale, the doctor turned her attention to Vincent. She did a brief physical exam, and then she spent some time "playing" with him. She wanted him to draw certain things, point to certain things, or do certain things as she tested various capabilities. At this point, the second D-Ped interjected because she was so excited by Vincent's drawing of me. When asked to draw a picture of a person, Vincent kept drawing various scribbles. It dawned on me that the word "person" was not part of his vocabulary, and when I suggested they use a different word, he was able to follow through with the request to "draw Mommy."
Vincent kept looking at me and then adding features to his stick figure (glasses, earrings, my ponytail, etc). The silent D-Ped couldn't resist commenting on how detailed his drawing ended up being. I was delighted she took such joy from his art. I was even more delighted that she acknowledged how intelligent he was - something I sometimes fear people neglect to realize when they're busy looking for labels.
The original D-Ped finished her assessment of Vince a few minutes after I'd finished the GARS. It only took her a few moments to add up the data and place him into percentile rankings. This standardized scoring method is useful in predicting Autism. It doesn't, however, diagnose it. Rather, it establishes a baseline of probability and possible severity level based on 6 areas: Restricted / Repetitive Behaviors, Social Interaction, Social Communication, Emotional Responses, Cognitive Style and Maladaptive Speech.
For Vincent, his percentile ranged him as "Autism is Likely" with "Level 2" severity (out of 3) which would require "Substantial Support."
However, as the D-Ped pointed out, he "failed" the DSM-V criteria for Autism completely.
How is this?
Well, the DSM-V (read: Psychologists' Bible) notes that for Autism to be diagnosed, three persistent deficits MUST be present: Socio-emotional reciprocity, non-verbal communicative behaviors for social interaction, and developing, maintaining and understanding relationships.
Now, in addition to those top three criteria, there are things like repetitive patterns of behavior, inflexibility and fixated interests that are also added to the list, but in all Autism diagnoses, the three I mentioned in the preceding paragraph MUST be present. Since they were not, she explained Autism could not be a diagnosis. I asked about Asperger's Syndrome. It's not technically an Autism disorder anymore, but given it is still spectrum, I wanted her feelings on that, too.
She explained that Vincent didn't measure up to that diagnosis, either. The closest she could come up with was Sensory Modulation Dysfunction which, again, is another way of saying Sensory Processing Disorder. It was exactly what I had anticipated based on my own research and findings.
She did mention he exhibited signs of being hyperactive, but this is not surprising. She explained that many children with SMD / SPD can either be hyper- or hypo- active depending on where they fall on the scale. Vince, being easily over-stimulated and constantly craving a stream of tactile sensation, was obviously going to be on the hyperactive side of things.
Point is, all of his "Autism symptoms" were strictly related to his sensory issues. Since the two do overlap at times, it's easy to understand his GARS ranking. However, since the D-Ped was able to add her own analysis and evaluation through the DSM-V, I was able to walk out of the office with a diagnosis that would finally take Autism off the table for Vincent's child study team.
I felt like I'd finally be able to tell the surgeon I needed kidney surgery vs. a stomach surgery. The CST will FINALLY have the D-Ped report they've been hounding me to get since Vince was in Early Intervention from 18 months of age. I can finally prove to them that he is not so easily labelled.
He won't be so easily placed into their bucket of special needs children to up their state funding.
Not my child. I will never let him be a statistic or a financial victory for those people. I know how the system works and I absolutely refuse to let it take advantage of him like that.
So two hours after walking through the doors, I walked out victorious. My son was confirmed as having Sensory Modulation Disorder (or SPD) and the current course of therapy that John and I currently have him on is exactly what was prescribed.
Vindication is glorious. I finally, finally feel like we are going to get somewhere with his education now. There is no excuse not to proceed now that they've got everything they demanded of us. I find it delicious that the diagnosis they were so SURE we'd get today not only falls short of their expectation... it falls completely in line with mine.
Parents know best.
And praise God for allowing things to line up so perfectly for this today.
Pediatric Lottery Win
This is Vincent dressed up in his rain gear this morning. I had to get him up at 6:45 AM so we could be out of the house by 7:30. It was a rainy, wet morning, but ya know what? I was feeling pretty amazing, and by the grin on Vincent's face, he was, too.
Well, we had won what I'm henceforth calling the Pediatric Lottery yesterday afternoon.
You see, on December 31st, I was told I'd need a "proper diagnosis" from a Developmental Pediatrician for Vincent's Sensory Processing / Autism symptoms in order to move forward with his district evaluation. So, I set to work getting him in to see one.
For any of you lucky enough to never be told your child needs to see a D-Ped, you might not be aware that wait time for these rare birds is about 12 months. 12 MONTHS.
I spent that afternoon calling 6 hospitals (which had between 2 and 3 locations each) trying to locate one for him. Every.single.one. was booked solid until December 2014.
I was somewhat disheartened by that (not just for Vince, but for all the other families being told they needed to wait so long for the tests needed to move forward with district evaluations). However, I wasn't going to let a little thing like ridiculously long wait lists slow me down.
I asked each hospital to pre-register us over the phone in case something popped up between now and December 2014. Only two hospitals agreed to take my info this early. I kept a running tab of hospitals, wait times and pre-registration requirements on a list on the back of Vincent's evaluation folder. Then, starting January 2nd, I went down the list of hospitals and called every other day, hoping for a cancellation.
Yesterday, January 13th, I struck gold and was given an 8AM appointment with a leading developmental pediatrician who specializes in autism and sensory issues.
Seriously - I was running around the office like this:
Euphoric, I must've thanked God about a thousand times before I'd even called John. Miracle of miracles, I just cannot believe we got in a full 12 months early! That's just INSANE!
So really, thank you, Lord, for being so amazing to Vincent!!! What an unexpected (and immensely awesome) blessing!!!
I gathered all of his materials together and called in a last minute referral to be faxed over by Vincent's regular pediatrician. They obliged, but couldn't believe I'd gotten an appointment that fast. They had to call me back just to make sure they'd gotten the date right.
Pfffft... this is why I don't stress about things. My God is an Awesome God.
I couldn't even sleep last night because I was so excited for today. Seriously - I didn't sleep at all. I just kept watching the clock as it ticked away the moments until I could finally get his diagnosis confirmed by someone with more authority than me.
Truthfully, the last few months have been incredibly taxing. I've had so many people tell me I was missing something. It seemed like everyone was trying to prepare me for the autism diagnosis they were sure I'd hear. His teachers, the school district, family members, friends... it was beginning to really wear on me.
I know folks meant well, but I hated constantly being second guessed about my own son simply because I don't have a PhD behind my name. I would NOT allow him to be labelled autistic if he was not, in fact, autistic. I wasn't going to just "settle" for the label because it is something easily identifiable to insurance companies. I wasn't going to allow the Child Study Team to throw together a one-size-fits-all IEP based on expectations for a child with Autism.
If I had even an inkling that Vince was autistic, I'd be singing a different tune. I'd label him, myself, and make sure everyone was aware of his strengths and difficulties. I'm not afraid of labels, and I'm not afraid of Autism.
I am, however, afraid of a system that routinely misdiagnoses children and haphazardly categorizes them into programs that are more detrimental than they are helpful. I would NOT allow my son to fall victim to that.
So I educated the heck out of myself. I've spent weeks pouring over everything I can about Sensory Processing Disorder. I poured over Autism research, Asperger's research and even dabbled in the ADHD, ADD, ODD suggestions that were thrown my way. I analyzed Vincent at home and had him try activities suggested by the Pinterest Boards I'd looked into. I even joined a parent-group and spoke to others struggling with the same issues.
I was not crazy. I was not blind. I was simply refusing to accept their "professional opinion" when they, themselves, didn't have the PhD they scoffed at me for lacking.
So to say I was anxious to hear the Developmental Pediatrician's evaluation is a total understatement.
I was going in with the expectation of war, and I knew I'd be coming out victorious. I had to. I was fighting for Vincent's future.
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