I got a completely unexpected phone call from the Child Study Team today.
Vince was approved (AHEAD OF A WAIT LIST) to attend a special Pre-K that's taught by a Special Ed instructor and has specialized aids in the classroom.
It's an inclusive class (meaning children with and without special needs are included together) and relatively mainstream.
Best of all, he begins on MONDAY!!! MONDAY!!!
Can you believe it?
I almost can't believe it. When I got the call, it was like a dream.
They had a spot open up? They skipped us ahead of the wait list? Vincent was a "perfect fit" for the room? He could start Monday??? You want us to fill out paperwork tomorrow???
YES, YES, and YES!
God has just been so incredibly good to us throughout this entire process. Every time I was beginning to feel painted into a corner, He came in to point out the window I had my back against.
Gotta keep reminding myself that...
Even finding a Pre-K program when we most needed it. Even finding it in the middle of a school year amidst wait lists that extend to double digits.
I'm just... I am in awe of how perfectly He sets the stage for us.
Thank you, Lord! Thank you for taking such good care of Vincent. Thanks for having this fall into my lap just when John and I were beginning to go a little nuts trying to come up with a solution ourselves.
These were the cute little crafts Vincent and I put together for my mom and John's mom for St. Valentine's Day. I saw something similar on Pinterest and thought I could adapt it to Vincent's skill set. I'm really happy with how they came out. They're simply adorable!
All you need:
A frame (I chose 8x10)
Fabric leaves (optional)
What to do:
1) Paint your child's hand with red paint (or, as I did, let your son smash his hand around in a dish of paint).
2) Press hand firmly onto poster board (top center leaving about an inch border).
3) If you're using fabric leaves, you can thread a green pipe cleaner through the stem, or you can simply glue them in place as sepals. If you'd rather, you can simply paint, draw or use pipe cleaners to create the sepals.
4) Use different colored pipe cleaners to form letters. This was something Vince needed help with, but once I showed him how to do it, he kinda liked trying to bend the pipe cleaners into shapes.
5) Glue the letters into place. We chose to spell out "Love," but obviously you can spell out whatever you'd like.
6) Date the project!
7) Insert the poster board (now completed) into the frame after allowing time for the paint / glue to dry.
Super easy and super fun. I absolutely loved how they turned out, and Vincent's really proud of them, too. Plus, it was a great way to work on his fine motor skills. We can't wait to give them out. Hopefully the snow goes away so we're able to do that soon!
Pictures like this make it look like I'm great at making friends. They make me look like I'm the life of the party... a social butterfly... the center of all that is awesome and fun.
Truth is, all of those things USED to describe me. I really was great at making friends. I was a TOTAL social butterfly and inserted myself into the center of everything. However, all of that changed when I became a mother. I slowly began to hang back from social situations. I'd devote all my time to Vincent and allow John to go to parties and social events on behalf of both of us.
However, over the last year or so, I've realized that I missed having a social life. I've missed hanging out with my friends and doing things outside the realm of "Mommy." I've also realized that my reluctance to build a social life outside my comfort zone was detrimental to Vincent. After all, if I didn't have other "Mommy friends" who brought around their kids to play with, he was just as socially ostracized as I was.
So when John and I signed him up for a special class for sensory children, I knew I was being given a special opportunity. There are currently 6 or 7 kids in the class, and they're all Vincent's age. The parents are my age, and they're all dealing with the same struggles John and I have endured in trying to diagnose and treat Vincent. They were PERFECT candidates for the Mommy-group I'd been looking for.
After a few weeks of small talk, I gauged interest. I asked, "Would any of you like to start a Mommy-group with me? We could support each other, offer tips and tricks, and meet up for special play dates given the close age and special needs of our kids."
All of them agreed.
So the next day, I put together a basic website for us to use as a sort of forum to share things like DIY sensory toys, favorite sensory places, and articles on issues like Autism and ADD. I called the center to ask for contact information for those parents I hadn't spoke with. I wanted to let them know we were doing this and to invite them to join in.
Their response made me sorta feel like St. Peter as he was "handed the keys to the Kingdom of Heaven."
Not only was the director in full support of what I was doing, she offered me full run of their facility on Sundays. She'd even staff a therapist (free of charge!) to help run things as the kids used the various therapy centers.
And then, she offered to host seminars on specific topics like Sensory Processing Disorder and even Dyslexia if we so desired it.
HOW CRAZY AWESOME IS THAT?!
Apparently they'd been looking to do this for a long time, but they didn't have anyone with the skill set to put a site together. Since I had already done it (and was already willing to run everything), they wanted to throw their support behind this little group to see it blossom.
She asked if I'd be open to allowing other parents from their center to join in. I said "Yes" but asked if she'd be kind enough to wait a few months until I got things going with my original group. I want to get a feel for how things will run with a smaller number of people, and then when I feel comfortable adding members, I'll happily expand to include others.
But can you imagine??? I was calling for an e-mail address and she gave me keys to the center. That's just... God is so good. So incredibly, awesomely good.
And I guess that's the reward you can expect when you step outside your comfort zone to multiply the love, folks. For so long, I've been content to stay within my cocooned little shell of a life, but I knew I needed to change not only for myself, but for Vince, and look... what a blessing it turned out to be!
So that's where I've been the last few days. I've been busily fleshing out a forum / website for this parent-group and trying to come up with a game plan for how everything is going to run.
For those of you who have experience doing this sort of thing, PLEASE message me! Also, for those of you who have good online resources for things like DIY sensory things (toys, games, etc), I'm all ears!
I've had Vincent's 1st birthday invitation hanging up on my fridge since I made them a few years ago. I kept it up on the fridge because I just love seeing his pudgy little face.
Last week, a friend of mine asked if I knew of any good 1st year poems she could post for her son's first birthday (which is coming up next month). It reminded me that I'd written one for Vincent's invitations. I hadn't looked on the backside of his invite in such a long time that I'd forgotten I'd written it!
So I sent it to her and am posting it here for anyone interested in using it for their children. You'd have to tweak it for a girl, but you could make it work!
If you like the invites, I got them from VistaPrint. I seriously get all my printed materials from them. They're fast, cheap and always give great service. Plus, I love how easy it is to personalize items.
When asked about the hardest thing I've dealt with regarding Vincent and the confusion of the last several months (years, really), my answer was fear.
At first, I actually said that there haven't been any difficult changes to deal with. Vince is still the same happy, affectionate child. He still loves sports and kitties and trampolines. He doesn't attend daycare or school, but honestly, that means he gets to spend more time with Mommy and Daddy who don't have to spend 45 minutes each way to pick him up or drop him off each day.
If anything, this has made things easier for us (no worries of him catching that stomach bug going around, being bullied, being put in the principal's office for over-stimulation).
However, upon further reflection, there has been a major uptick in fear. I can't deny that. It's been my driving force these last few months.
I was terrified that Vincent was going to be misdiagnosed and put into a program that would not seek to challenge and engage him. I was afraid he had fallen behind his peers with his social skills. I was ceaselessly worried we weren't doing enough as parents to get him to where he needed to be... that I was missing pieces of the puzzle or overlooking some obvious trait that others could so plainly see.
Above all, I was terrified that I was failing my son. I was failing as a mother, and that really did cause me some sleepless nights.
Each time someone asked about Vincent, I physically and mentally braced myself to defend him against the misunderstandings and suggestive conversations I knew were to come.
"Did you ask the doctor about Autism yet?"
"I read this article about Oppositional Defiance. I'd like to send it to you."
"My friend knows a lot about learning disabled students. She works with kids like Vincent all the time."
"I know you don't think he's got Autism, but did you look into Asperger's?"
"Wow, he sure is fidgety. He's probably just got ADD or something."
On and on and on this sort of conversation would take place. Well-meaning individuals (family and friends alike) who were doing their best to guide me through waters which they, themselves, had no lighthouse to follow.
For the most part, I did appreciate their intentions. I just had to tune them out after a while. Behind each good-intention was an unspoken judgement: There is something wrong with Vincent.
Did they mean it that way? Of course not. But I'm his mother. I see him as perfect. I want everyone else to see him that way, too. It was killing me that others were starting to see him as a problem needing to be solved than as a beautiful little boy wanting to play Ninja Turtles.
And I felt that I, myself, was being judged as inferior. I was being deemed a parent incapable of "fixing" my son... of allowing him to spoil in some way.
Isn't that terrible? Each keystroke of this entry feels like I'm pulling tears higher and higher out of the well of my soul.
THAT was the hardest part in all of this. Feeling like a failure. Feeling like others were judging my son... judging me. Feeling like they were judging correctly and feeling absolutely worthless for being unable to change that judgement because they were right.
That sort of paranoia... it is devilishly intense. I'd beg, barter and plead with God to just lead me down the right path because I had no idea what I was doing.
And in all those times of desperation, He answered.
He gave me the mental dexterity to show EI the door when they pushed for Autism testing before Vince was even three. He opened the doors to TLE when I had no idea where to place Vincent. He dropped the most perfect speech therapist into my lap who took flawless notes about his progress. He reminded me of those notes when I read Cam's entry on her own daughter, and He put the pieces of the puzzle together for me before I even knew I was holding puzzle pieces.
Each and every time I found myself doubting His sanity in placing Vincent into my care, He'd swoop in and reassure me that He wasn't, in fact, crazy. He just had a lot more faith in me than I had in Him.
And when I finally realized that, I was amazed and infinitely grateful to be counted worthy of raising my son. He is a gift, and with God in my cheering section, what is there to be afraid of?
As parents, we're always going to fear we're failing. We just need to remember that God would have never placed these blessings with us if He didn't think we could do it. Together, we can. :)
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.
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.
I hate winter. I hate the cold, I hate the snow, I hate the over-inflated sense of "busy-ness" that causes people to get crotchety for no real reason outside of "My to-dos are more important than yours, so get out of my way."
However, today was a complete departure from that, and it's all because of how much my son loves the snow.
As soon as we came downstairs, he bee-lined for the windows in excitement as he saw snowflakes dancing in the wind. He immediately wanted to run outside (in his pajamas) to begin making snowballs to throw at yours truly.
Given the snow was coming down pretty hard, I suggested we wait until the afternoon when it let up a bit. He grudgingly accepted that and we spent the morning cuddled on the couch watching TV, playing "elevator" with his Toy Story figures, and making random snacks that somehow all incorporated peanut butter (he's all his daddy, this one).
After his nap, I bundled him up and set him loose in the front yard. He helped me out with his very first snowman. I decided it'd be easier (and more fun) for him to use Mr. Potato Head pieces for the features of the snowman. Turned out to be a stellar decision because after he'd finished pushing the pieces into the snowman, he filled the actual Potato Head bodies with snow and used them to make snow-balls for himself. How smart is that?
So yeah - with all the fun Vincent was having, how could I not have a little fun, myself? Seeing winter through his eyes made me realize that this season isn't all terrible. Sure I still hated being in the cold and wetness of the snow, but I was in it doing ridiculous and fun things with my son. An hour or so of cold toes was more than worth it to hear him giggling and laughing at the wonder this time of year brings.
Kids - they will teach you how to be more thoughtful human beings whether or not you like it. I am grateful his joy chided my curmudgeonly self.
I had Vince try on some Spiderman pajamas on Saturday. At first, he loved them because he looked like Spiderman. Then he realized they were one-piece and he felt constricted, so they didn't last too long.
That made me a bit sad because I used to adore the one-piece PJs he'd waddle around in as a toddler. I guess those days are officially over, huh?
Anyway, he was playing with a tabletop bowling set for a while. He'd set the pins up and knock them down over and over again. I looked over at one of his layouts and had to snap a photo - it was impressive!
He'd set up the pins in a very unique pattern, and when I asked him why he'd done that, he said, "Bigger level, Mommy!"
Playing games with John, he's learned to understand that things get harder and harder as you beat previous levels. So instead of the familiar triangle setup most of us are familiar with, he decided this would be the "bigger level" for himself:
Seriously! How creative is that? :) Subsequent levels were more of the same. I was so proud of him coming up with these "levels" all by himself. Patterns... the kid loves patterns. Math of any sort is like Christmas morning. :)
Anyway, when he saw me taking pictures of his levels, he wanted me to take pictures of he and I, then his next level, then him again. Definitely a fun activity for a cold weekend.
I posted this on my FB page yesterday:
No matter the circumstance, no matter the inclusion of hypotheticals, the word "disability" used in reference to my son will always be like a cattle prod to my heart. He is not disabled; he simply goes about things differently. I'd like to think he's just got things figured out better than we do.
Right now, he's playing with a litany of children and they're all following him in a ridiculous game of "Run-to-the-top-of-the-slide-and-scream-your-head-off." His joy gives me joy, and no label can take that from us.
We had just finished the first part of our whirlwind day - the Child Study Team. John and I were thoroughly displeased with the results of that meeting; absolutely nothing was accomplished. As I had feared, it was simply an introductory meeting that established the need for evaluation.
I hate the backwards way our system works sometimes. I had specifically stated I wanted him evaluated when scheduling the appointment. I didn't need to be introduced to their program because I had read all about it online and had asked the case worker about 100 questions before even agreeing to come in.
I get not all parents are as prepared and pro-active as I am, but geez. Don't make me wait a month for a meeting only to tell me that I'll need to wait another three months for the evaluation I specifically said I wanted to begin with.
That sorta thing makes me so frustrated and angry that I'm tearing up just thinking about it. This backwards method is basically saying, "We realize you're in a tough spot and have no real options outside of us, but ya know what? We don't really care. You're on your own until after the New Year because we're legally given this amount of time to twiddle our thumbs."
WHY WASTE MY TIME with a meeting that's sole purpose is to schedule a secondary meeting? WHY?! Tell me what sense that makes!
ARGH - that sort of bureaucratic nonsense makes me want to stab forks through my temples. I hate having my time wasted. I took off from work to attend this meeting only to be told I'll need to take off again three months down the road.
And while this brilliance was being passed back and forth in a tiny room crammed with 5 other adults, my son was happily coloring and showing off his art skills to anyone willing to listen. Everyone politely humored him, but they started throwing out words like "disability" and "special issues" and I instantly felt my stomach clench. I wanted to lash out at them and say, "No. My son does NOT have a disability. He learns just fine and is able to do everything other kids his age can do - even more if we're talking about math or basketball! He does NOT have a disability. His abilities just need to be arrived at differently than you might be used to."
I didn't, of course. It's not as if they were accusing Vincent of being slow or deficient, but how can I not instinctively throw my heart in the line of fire when such labels imply he is somehow broken... something less than other children?
He is not broken. He is not deficient. When the teacher asked him how many beads were on her string, he said "11."
She said, "No, Vincent. Let's count. One, two, three, four, five. Five beads."
Vincent pointed to the other necklace she was still wearing (with matching beads) and said, "Eleven."
That's right. There were 6 more beads on the other necklace that she didn't account for.
Vincent's not deficient. He's not disabled. He just thinks differently.
And God bless him, he was so good throughout the 45 minute meeting. The speech-therapist was surprised he spoke so well given the 2 years he spent mostly deaf. Obviously he's behind his peers, but he picked up in two years what those same peers took four to master.
He's NOT deficient. He's NOT disabled.
Just hearing those words be used - even hypothetically about him (since they hadn't done an eval)... I just hate being thrown into a world I don't understand. I feel like my son is being looked at as a list of pros and cons on a sheet of paper. They see such things as "hyperactive," "loud" and "impulsive" and miss out on his constant affection, his zest for life and his desire to experience 5 things at once because he's just so excited to learn something new.
It makes my heart hurt to think there is anyone in the world seeing him as somehow defective... as something less than the perfect little boy I've been so blessed to have grow up before my eyes.
And maybe it's all just in my head. I'm sure these folks aren't out to get him. I guess this is more a venting post than anything else. I'm venting my fears and frustrations at a system that I don't trust can help my son. And maybe that's because right now, I'm a deer in headlights and the glaring light is distorting my perception of escape routes. I just want to do right by him, and I am terrified that I'm just not going to figure it all out fast enough.
So a really sad, but ultimately beautiful, thing happened last week.
After storming out of Vincent's daycare on what proved to be his final day, I realized I'd left his sleeping bag and extra pair of clothing behind. Eventually I'd have to go back to collect them.
Well, I finally made my way back to their building just before close on Friday. The remaining children were all huddled in one room around a TV playing a cartoon. When I walked in, I saw William. He saw me, too, and instantly looked around for Vincent. He said, "Don't bring Vincent back. I don't like him."
Again, my heart hurt. William was sitting off by himself, having been removed from the other children for God only knows what. I said, "Vincent says 'Hello,' William." He turned his face away from me, so I walked over, dropped to my knees and hugged him.
He instantly bristled. He pushed me away and turned his body around in his seat. One of the teachers sorta laughed (either at me, or the situation, I have no idea). I was so, so sad again, because I just had this intense feeling that he doesn't get enough physical affection. So I released him from my hug and walked across the hall to find Vincent's stuff.
When I came back to say goodbye to the staff to let them know I was leaving, William was still sitting at the back table but he called out, "Vincent's Mom!"
I looked back and he said, "Tell Vincent I say 'Hi," too."
I'm not ashamed to admit I drove home crying.
Just a little love. That's all this child needs. Just a little bit of love. Isn't that all any of us needs?
"Don't come back to school ever again. Nobody likes you. I hate you."
Let the words settle in your ears.
For me, they bypassed every sense I had and cut straight into my heart.
Those evil, terrible words were directed at my little baby boy - a kid whose only crime is wanting to be friends with everyone.
These words came from another little boy in his class - William. Day in and day out, Vincent cries to me about how mean William is. Every night at bedtime, Vincent tells me he doesn't want to go to school because William hits him. Each time I speak to his teacher, it's about William bullying my son.
Yesterday when I picked him up was the last straw. I watched as William shoved Vincent. Vincent, for his part, did not shove back. He only cried and screamed out for a teacher and came running to me saying, "Mommy, see? William hit me. He hit me so bad."
My heart broke. When he cried out to me, it was almost with relief. It was like he was happy William shoved him in front of me so I could have proof that all the mean things he told me about William were true.
I never doubted him. He had the bruises to prove it. Bruises I confronted his teacher about. Bruises I was told resulted from regular child's play.
I knew better, and I was never going to let him be hurt by this child again.
As we were leaving daycare, William snarled at him with the words above.
"Don't come back to school ever again. Nobody likes you. I hate you."
In that moment, I wanted to tear that little boy to pieces. He had the audacity to say such a mean and hateful thing with me standing right next to Vincent! However, God was good. It was as if my persona grew to encompass and protect Vincent. None of the words he said were heard by Vincent because they simply bounced off my protective cocoon. Instead of giving him a death stare, I told him that his words were very mean. Good little boys don't talk so mean to their friends, and bustled Vincent out of the class, never to be seen by that horrid child again.
On the way to my mother's, it was all I could do not to cry. I was so angry that this child had been so mean to Vincent. I was so upset that Vincent had spent a month with him... I felt guilty that I'd had no other option.
But no more. I didn't care if I had to quit my job the next day, there was no way I would ever allow Vincent to walk through those doors again. It was obvious his teacher didn't take William's malice seriously, and it was obvious the other staff didn't care that Vincent was so upset by him.
My husband and I both witnessed him throwing blocks at other students, and John saw him slap a little girl.
As I was stewing over how terrible this child was, I realized that he had to have learned this behavior somewhere. All of my anger and disgust for him translated instantly into disdain for his parents. My heart then broke for William who was obviously the brunt of this behavior at home. No child is born acting this way. No child wakes up and thinks, "I can't wait to terrorize another person."
No. That behavior is conditioned into a child by someone they look up to... someone they trust. And the fact that he acted so hateful in front of me, Vincent's mother, was like a punch to the gut.
Did he not understand that I would shield Vincent? That such mean words would be met with some sort of reprimand?
Not if his own mother doesn't protect him... if his own mother isn't reprimanding a boyfriend or husband or sibling who is saying such things to him.
Do I know if it's his mother? Of course not. But it's obviously someone close to him that has bred such anger within him.
The rest of the car ride to my mother's house was spent in tears for this child. How terrible to be only 3.5 years old and have been influenced by hate to such a degree.
For now, Vincent is being watched by a friend who has a little boy, herself. God was good to give us this option right when we so desperately needed it.
See that dirty-faced little boy over there with the hair that looks oddly parted to the side?
That's Vincent fresh from the play-yard of his daycare.
I got a call early Thursday morning alerting me to the fact that he'd used his scissors to cut his hair instead of his paper pumpkin.
Instead of freaking out, I just laughed. I asked, "How bad?"
She said, "It's all the way to his scalp, so I guess it's kinda bad."
I replied, "Eh... every kid gets one, I guess. We were growing it out for his Halloween costume, but since he changed his mind, it doesn't matter anymore, anyway."
She was surprised. She said, "You're taking this better than some parents."
I said, "I've been there. At least my son was smart enough to get his self-styled haircuts out of the way as a toddler. As a freshman in high school, I had no excuse."
Ah well. So after work, I took him straight to the barber to get his hair buzzed off. His teacher was right - he cut directly over his scalp, so she had to buzz everything to get regrowth even.
Oh Vincent... *shakes head.*
When I saw his hair falling away in big chunks, my heart sorta sank. Beholding his bald little head, I realized how lucky I was to be in that barber shop voluntarily. So many other kids lose their hair due to illness. Mine was losing his due to curiosity and a misguided sense of independence.
Vincent's would grow back. My heart ached for the children who weren't so lucky.
I couldn't get that image of Vincent out of my head all weekend. His hair is finally starting to come back in, but my prayers were directed in a special way this weekend for childhood cancer victims and their families.
Oh Vincent... my handsome little monkey has a smile that can light up the world regardless of his hair (or lack thereof). May God bless you and keep you, munch. <3
Oh, and no more cutting your own hair. Please. LoL!
Vincent's been on a big "hero" kick lately. Instead of calling himself a hero, though, he's always saying to me, "Mommy, you my hero! Thank you SO SO much!"
I'll then say "You're MY hero, Vincent!"
He'll follow up with, "Yeah. I really your hero! I love you so much."
I really hope, in his mind, he equates being a hero with how much you love someone. In truth, he's exactly right.
John and I were both out of commission this weekend due to a terrible cold we caught from Vince. Vince, for his part, was much better (yay!), but for John and I, the cold was just hitting its stride.
As a result, we spent the entire weekend either in bed or on the couch (typically rotating who was where so Vince had at least one set of un-drugged eyes looking after him).
I felt bad that we couldn't do much beyond a few minutes of floor play with him. We were both just so sapped of any energy that it was a challenge just to drag ourselves from bed. It was such a beautiful weekend, and our poor son had to spend it cooped up in the house.
What do you folks do on days like this? I hate to admit it, but we definitely resorted to the television. It was on non-stop with barely a break or two in there for board games or play-fighting with swords.
I admit, however, that we both enjoyed giving each other "stamps" by way of magic markers. I'd draw a happy face on his hand, then he'd drawn one on mine. I'd draw a star on his leg, he'd draw one on my arm. This went on for quite a while until it looked like we'd gotten ourselves into a messed up tattooing contest. I actually had to scrub him down a bit with wet wipes before my husband thought he'd caught a wild disease. *Grin*
There have to be some good activities that will keep him occupied, help him spend some energy, and not have me terrified he's off playing with knives. ;)
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.
Since this past week has been so frustrating and difficult for Vincent, I wanted to take him somewhere completely different to give him a chance to really run off some steam.
There is a massive playground a few towns over that he hasn't been to since he was very, very small. I decided that would be the perfect spot to forget the stress of his new environment and just have fun.
Vincent knew he was going "to the park" today, but he figured it was the one we regularly go to right around the corner. When we didn't make a right-hand turn off our street, he knew something was up. He started to whine, "No, Mommy. I want to go to the park. Turn right, Mommy. Turn right!"
I said, "Vincent, no whining. Mommy IS taking you to the park. We're going to a special park for you today. You're going to have SO much fun!"
He, however, was having none of that. He started to cry. I guess the poor kid was expecting his routine playground, and when his expectation for "normal" was once again smashed, he got upset.
I looked at him through the rear-view mirror and said, "Vincent, did Mommy tell you she was going to take you to the park today?"
He said, "Yes. I want the park."
"I'm going to take you to the park, Vincent. We're going to the park now. It's a BIG park with LOTS of fun things. You're going to like it, so stop crying, okay?"
His crying slowed to silent grumpiness. Clearly he did not trust Mommy to bring him to this big, awesome park that supposedly was better than his trusty old one.
I was confused as to where this distrust in me came from. I'm his Mom. When I tell him I'm gonna take him fun places, I take him fun places. Was the trauma of school really so much for him that he now thinks I've only got challenging things in store for him?
I drove on, but since this playground is a few towns over, it took longer than he's used to. He began to whine again that he wanted to go to the park.
I admit I was starting to get annoyed.
Then I felt this little knock on the head and an inner voice chuckling, "How do you think I feel when you do the same thing to Me?"
I really DO whine the exact same way when God tries to lead me down roads I want no parts of. I don't trust that He's leading me to goodness. I want to stick to my comfortable life of sin. What could Heaven possibly have that I can't find on my own down here on earth?
Vince's whining painted that picture better than any homily ever could. I was the crying kid who wasn't trusting her Father to take her to joy. How OFTEN I am that crying child.
And why? What has He ever done to cause me to doubt His goodness? Nothing. Some experiences have been tougher than others, sure. But all of them have helped me to grow when I've allowed them to. Heck, even when I've tried NOT to.
Point is, how often are we whining little children in the backseat of God's caravan?
We need to trust our Father to drive us to Heaven. It might take longer than expected. We might go down roads we're unfamiliar with... that might be a bit bumpy. But in the end, He's the very best driver there is, so we'd do well to trust Him.
By the time I'd finished that meditation, I was pulling my car into the parking lot of the playground. Vincent was in awe of how massive the structures were. It was pretty funny to see him go from whining to flipping out with excitement.
I imagine that's how we're going to be when we finally get to Heaven. In the end, we'll realize just how worth it that caravan ride really was, and we'll likely want to kick ourselves for all that pointless whining.
Here's a slideshow of Vince enjoying the playground. :)
After a great day developing a partnership with Vince's teacher and principal, a call today threw me for a complete loop.
Vince had eaten something that didn't agree with him, and as a result, he had an accident.
I got a phone call asking me to come for him immediately. Apparently they do not help children wipe themselves, adjust their clothing, and they certainly will not change a child's clothing after an accident.
I was beyond floored. I began to argue, but realized I wouldn't get my point across and didn't want Vince being forced to wait any longer than he had to for help. Sitting by himself in soiled clothing is not only unhygienic, it's embarrassing and upsetting. I told the teacher I'd speak to her and the principal later as I wanted to contact my husband (who was much closer) so he could come for Vince.
After calling John and making him aware of the situation, I got onto the computer and sent the following letter:
Dear Mrs. X and Principal X,
Obviously I'm contacting you regarding your wiping policy. Given I'd written to you this morning about the issue, I'm not altogether surprised it reared its head in this manner after lunch.
However, I'd like to make very clear that I am incredibly disheartened by this policy. As an educator who has been in this situation and changed children ranging from Pre-K through 3rd grade, I am surprised that you don't have some sort of plan in place in the event of an accident- even if that plan is the school nurse, a trusted health care professional.
I understand the basis for your policy. You're worried about legal repercussions should a child claim inappropriate behavior.
However, fear should never be a substantial reason to allow a child to suffer an embarrassing, harmful health situation - and that's exactly what this amounts to.
His bowel movement was an abnormal occurrence precipitated by something that didn't agree with his belly. As such, even if Mrs. X was unable to dedicate time to handle the situation because she had to attend to the class, there was an aid present. If the aid was also wrangling the class (given girls and boys use separate rooms), the nurse can surely be sent for.
But to leave a child for an indefinite amount of time in a soiled state because you're afraid of being sued, especially after I've made every effort to let you know that I do not view you as enemies, but as partners in my son's development, I'm just floored.
I've been in your situations. Both of you. I've been the teacher juggling 20 kids while trying to clean up the one who had an accident, and I've been the principal trying to protect her teacher from any sort of legal worry for being in close proximity to a child's genital area.
I understand FULLY where both of you are coming from. Now please understand where I am coming from.
I know full well that a child's fine motor skills (necessary for properly wiping himself) are not fully functional until they are between 4 and 5 years old. Vincent is not yet four. If you need me to, I can get a letter from his pediatrician. That being said, I expect that should he ever be sick and have an accident like this in the future (which should rarely happen, if it ever happens again at all), he be sent to the nurse's office with his change of clothes.
After all, why else would you request them unless you expected to use them in cases like this?
I am doing everything in my power to make this transition to school possible for Vincent. I am his willing advocate and I will gladly do everything in my power to fall in line with requests you make of me. This, however, has me baffled. You are effectively asking something of my son that is simply physically impossible for him at this point. He's able to use the bathroom and has some ability to wipe himself, but should he have an accident, there is no preschooler that can handle cleaning him or herself up without the help of an adult.
So as I mentioned above, if you need a letter from his pediatrician, I'd be more than happy to comply.
I received an e-mail from his teacher about an hour or so later, and just as I responded to her, I got a call from the principal.
I was spot on with my analysis regarding why they wouldn't touch him, but given the points I made and the obvious willingness I've shown in working together in establishing a partnership with them, the principal agreed to allow the nurse to help Vincent should this problem ever arise again.
However, it was clear that she still expected Vincent to be farther ahead regarding his bathroom capabilities. I'm still surprised by that given all of my experience with children Vince's age (and even older) has set my expectation that kids that age are going to have accidents and will sometimes need help wiping.
Have my experiences just been wildly different from everyone else's? What age were your children able to properly wipe themselves? Button their pants? Tuck in their shirts?
I dunno. I'm glad that his teacher agreed to help him when necessary, and I'm glad the principal agreed to have the nurse could help with this situation in the future, too. I felt like it was finally something I did right for my son. I'm all for challenging him, but setting an expectation so high that he has no chance of touching it seems excessive.
It's all due to these ridiculous laws put in place to "protect" children. All of this fear of pedophiles... we are our own undoing. The sins that we left fester have given us this as our legacy... stupid policies that end up hurting more than they help.
We're able to teach kids to masturbate and use condoms, but we can't help them with basic hygiene. What kind of world are we living in anymore?
God help us.
I love his teacher and his principal. I really do. They are beyond what I could have ever expected for Vince. Observing them only made me love and appreciate them more. They're in my prayers double-time for all the wonderful things they're doing for Vince and all the frustration they're putting up with on account of his difficulty transitioning. But this was just unacceptable to me, and I'm glad it was addressed sooner rather than later.
Really, I'm just glad I finally feel like I did something right for my kid. Seems I've been doing a bang up job of screwing things up lately. It's nice to have a victory every once in a while for him.
I took a personal day Thursday so I could stay at Vince's school and silently observe him to get a better feel for what was going on. His principal kindly rigged a little veil over the door for me so I could peek in without being detected.
I learned a lot that day. First and foremost, I was given confirmation that I'd made the right decision about where to send him. His principal and his teacher are rock stars. I know they are both dedicated to their kids and willing to go above and beyond to make sure they get the necessary care and attention they need. That is extremely gratifying, and I am incredibly thankful that I found such a wonderful place for him to grow.
Secondly, I got to see my son in a wholly new light. He was just as disruptive as they warned me he was. He was screaming in ways I'd never heard him scream before. That being said, I noted that much of his reactionary behavior was, as I had anticipated, completely understandable.
For example, he kept getting in trouble for not sitting where he was supposed to sit on the carpet. His teacher assigned a back spot for him, and he refused to stay there. He'd either get up and go to the table, or he'd try to sit closer to the front (typically squishing other kids in the process).
I immediately understood why he was doing that. First of all, his hearing is still not 100%, so he wants to sit closer to hear the stories better. Secondly, his job at his last daycare was "page-turner." He'd sit on the lap of the instructor and turn the pages of the book. He's probably confused as to why he's not turning the pages anymore, and might think that he's done something wrong to cause him to lose that privilege. So he keeps coming up over and over again to try to be where he thinks "his spot" is.
No one explained to him that he doesn't have the job of page-turner anymore. No one explained that since this is a new school, he has a new spot to sit and new "jobs" to do. When I explained that to his new teacher, a light bulb went off over her head and other little things like that fell into place.
Especially given how Vincent says how much he misses his old school and his old teachers, this really makes sense. He likely doesn't understand why he can't be with them anymore, and he certainly doesn't understand why he can't do all the things he used to do.
Then there were the transitions. It seemed to me that he was behind by 1 transition throughout the day.
For example, when it was time for circle, he'd be at the table. When the kids moved on from the circle to the library, he'd finally get in motion to move to the circle (and so on and so on). He is so slow and unwilling to transition that he was actually holding the class back from certain activities. The teacher and aid did their best to redirect him and get him on board in a timely fashion, but Vincent's frustration would kick in and he'd just shut down and ignore them.
I think that's the area I need to work on most. Transitioning has been one of the hardest things for him to feel comfortable with, and it's been an ongoing issue since he was a small child. It's why I've always been such a stickler for his schedules. Consistency really is key for my little munch, and now that his regular schedule is being transformed into something else entirely, he's confused and frustrated.
I'm hoping as this new schedule becomes more routine, he feels more confident and less confused. That, in itself, will help quell much of his frustration.
After I finished observations, I gave feedback to his new teacher and took feedback in turn. We shared a lot of good ideas and I'm implementing a few changes at home to help Vince keep the same level of consistency here as well as in school. She, for her part, will try some of my tricks for keeping Vince's focus and coaxing him into transitioning better.
At the end of the day, I felt as though a lot of progress had been made. I felt much better in Vince's chances for success there, and I hope his teacher and principal understood just how dedicated I am to getting him on the right track.
Keep those prayers coming, folks. I appreciate so much all the notes, ideas and comments you've sent. <3
It’s been a long time since I’ve felt like this much of a failure as a parent.
I got a call from Vincent’s principal this morning. My soon-to-be-four year old son was sent to the principal on his 3rd day of school.
Regardless of the situation, how can any parent say “Not my fault.”
On some level, it’s my fault. I did or didn’t do something right that caused him to act out in a negative way.
Friday afternoon, I was stopped by Vincent’s teacher and warned about his behavior. He was acting out by swatting at children and screaming at his teacher. He refused to follow directions and insisted on going off by himself over and over again.
When she said that, my heart practically tore itself in half.
“Going off by himself over and over again.”
Immediately images of him playing by himself in a room full of children as I picked him up from daycare flooded my mind. You guys have heard me talk about this before. I can’t help but feel responsible for my son’s social immaturity.
Aside from the fact that he was hearing-impaired his first two years (which stunted his speech and comprehension), he didn’t have much interaction with children his age outside of daycare. Why? Because he was never given a sibling.
I feel so angry and so guilty for this. When I heard the teacher cite the same exact symptom I was so keenly aware of every time I’d pick Vince up from daycare, I knew in my heart just how disadvantaged Vincent was made by the situation between my husband and I.
I immediately became livid. After putting Vince into the car, my blood pressure must’ve soared as I had visions of tearing into John for his selfishness… his thoughtlessness. How could he not see the damage he was doing to Vincent? All I wanted to do was scream and yell at him, myself. I wanted to punch and kick him. I wanted to do everything that Vincent had done as if John feeling it would somehow make him realize how incredibly wrong he was.
I quickly realized I needed to cool down. I almost felt like I wasn’t in my right mind. On a logical level, I fully understood that my rage was simply masking the root of my emotional maelstrom. I felt guilty and depressed; sad and hopeless. All of visions I had in my head of creating the perfect family environment for my children was taken away from me and I’d let it happen. I never provided Vincent the sibling I wanted him to have. Little Myla, the sister he has in Heaven, slipped away under my watch. All of the anger and rage that I was directing at John was simply a bait and switch. If I was able to focus on him, I didn’t have to realize how much of the blame I shouldered for his deficiencies.
Logically, I fully understood all of that. Emotionally, however, I didn’t give a hoot. I wanted to call him and tell him that if he was home, he should leave. Maybe find a friend to spend the night with ‘cause I didn’t want him home with me. I wanted so much to lash out in the most spiteful, angry way I could to make him feel just a fraction of the hurt I carried.
Thank God my logical side fought back, because my emotional side was gunning for separation. It really, truly was. That is not, however, the Christian way of handling problems, and I really have tried so hard to grow myself into a better example of what it means to be truly loving in my actions, especially with John.
Plus, in my heart, I know that’s not the answer. It’s not fair to John who is not entirely to blame. So I forced myself to calm down. I forced myself to refrain from spewing lava the moment he walked into the house.
However, he could quickly tell I was upset. I said we’d talk after Vincent went to bed, and he backed off. Somehow, by the grace of God, he actually backed off. Normally he will push until his curiosity is satiated, but in this instance, he did not. That gave me enough time to collect myself and slowly vent, alone, until I was ready to discuss things in a manner that was fair to both of us.
So after Vince went to bed, he asked. At first I didn’t know how to delve into it. I was really worried I wouldn’t be able to restrain my tongue. I wanted to be fair, but I was still emotionally raw. I have no doubt I didn’t handle myself perfectly, but I can say I made the right decision. I’m glad that I waited until Vince went to bed, and I’m glad that I resolved to talk things through with John rather than remain dedicated to heaping blame and anger on him without his knowledge.
I explained what the teacher said. I explained my experiences picking Vince up from daycare. I then explained that I truly believed Vince wouldn’t be as socially behind if he had a sibling. I felt guilty for not providing him one, and I was angry that John couldn’t see how damaging that was to him. I explained why I didn’t say anything earlier, and I also explained how incredibly angry I was on the way home. However, I also explained that I understood anger is my self-defense mechanism, so it’s the emotion that crops up most strongly when I feel sad or guilty.
In fact, it’s pretty safe to say that the angrier I am about a given situation, the more upset I am about it. Anger, to me, is a controlled force. I feel empowered and in-control when I am angry. I’m able to speak eloquently and my mind is razor sharp. However, the second I allow the sadness, guilt or despair creep in, my eloquence goes out the window, I feel as if I’ve lost control and I am left weak and vulnerable.
Doesn’t that seem strange? But it’s true. Angry Gina is like a brilliant lawyer poised to tear into a guilty convict. Upset Gina is the babbling convict who wants to cry in the corner. Very, very seldom does Upset Gina come out to play.
So through my conversation with John, I felt a tug of war going on between these two sides of myself. I knew that in order for John to understand that I didn’t hate him or fully blame him for everything, I had to be honest about my feelings of failure and guilt. However, in order to get my thoughts across in a clear manner, my words were edged with anger – not to reprimand John, but to help me keep my composure.
To my surprise, John did not defend himself or try to make me understand that my view of siblings was wrong. Instead, he apologized. He said that he understood I was in a terrible situation. He sympathized that I felt guilty for having failed Vincent in this manner. He did point out that there were other ways of giving Vincent the experience of other children his age, but he didn’t counter me when I said the experience of siblings is without equal.
He just apologized and said he wished he could change his mind on the matter. I waved him off, not because I didn’t appreciate it, but because I was still caught between Anger and Upset.
The upset side of me wanted to reassure him that I didn’t hate him for how he felt. That side of me fully understood where he was coming from and wanted to let him know that he didn’t need to “wish” he could change his mind.
The angry side of me realized it was about to lose its edge and decided bypassing that statement altogether would be a safer course of action than responding, because how can anger respond to love?
That is, after all, how John answered me. He listened to me, really heard me, tried to understand my point of view, and sympathized. He didn't agree, and he didn't have to. You don't have to agree with someone's perspective in order to sympathize. THAT is the response I've been waiting for.
I never wanted to force John to change his mind. I'd like him to, sure, but that was never the crux of my frustration. It was always his stubborn refusal to even give my point of view air time. I was wrong, and that was that. This is the very first time I felt as though he'd not only heard me out... he'd allowed himself to accept that my point of view wasn't entirely off-base. That doesn't mean he agrees with it, and that's okay. However, it does mean that I'm not the outright manipulator that I think he felt I was regarding children.
Thus, the conversation petered off. John apologizing for his part in my sadness, me accepting that I was stuck trying to figure out a way around this for myself and my family. As a mother, I have to figure out a way to help Vincent grow into a more socially adept little boy. I accept his current difficulties on account of his verbal / comprehension deficits, but I do not accept that these are permanent limitations. They are certainly not excuses for bad behavior.
So today I vowed to work with both the teacher and the principal on getting Vince better transitioned into his new environment. I’ve enlisted the help of his previous teachers, and I’ll be talking to my mom (a kindergarten teacher) later this afternoon. Obviously I also talked to John and we both agree that we’re giving this at least two weeks before throwing in the towel.
Maybe we find out that Vince really is just too young to begin. I, for one, will not make that decision without giving it a real try. Two days is not enough to judge a child’s ability to meet the expectations of an entirely new environment. The principal agreed with me, and we’re going to see what the next two weeks bring us.
Keep us in your prayers, folks. It’d be much appreciated. This entire experience has been so much more challenging than I’d ever imagined.
UPDATE: Since I was asked - Vincent was practically deaf for the first two years of his life. Given that therapy only got him so far, he's still behind his peers when it comes to communicating his fear or frustration. As a result, he relies on physical outbursts sometimes. Physical outbursts include swatting at others or stamping his feet. Both are negative behaviors that could potentially hurt someone, so they are serious. However, he's not maliciously threatening anyone and is reacting, in my mind, as a child of his cognative level would respond. Our job, as parents, is to teach him new coping skills and help him develop beyond physical response. We also need to work more on his willingness to share the attention of adults with other children (again, something a sibling would've helped with). He consistently demands the attention of the teacher, and if he doesn't get it, he simply shouts louder and louder until she's forced to give him attention (even though it's negative attention).
My background is education. I fully understand the dynamics of what is going on and why my son is acting out in the manner in which he's acting out. It makes sense, but my difficulty is how I can help re-teach him better behavior.
Anyone have any tricks or tips?
John had a special event this past weekend. He set up a dodgeball tournament and I surprised him by both attending and taking photos (I was supposed to be with Vince in Ocean City).
Anyway, I took the photos and of course everyone wanted them posted right away. So, since I had to go through my memory card anyway, I finally uploaded a bunch of other albums that've been hanging out on my camera.
Plus, I really want to have a fresh memory card for our trip, so this "spring cleaning" was a must.
As I was going through the photos, I was struck by how wonderful of a summer this really was. I was blessed with a lot of good memories to temper some of the more frustrating / difficult parts.
So I want to share some of those photos with you fine folks. Many are from my iPhone, so forgive the graininess.
Gram (known as "GG" to Vince) celebrated another birthday with us. We're so blessed to still have her in our lives. She's a wonderful, beautiful woman.
Vince and I on a nature walk at the park and feeding the geese.
We had a surprise pool party for our friend, Jay. Here are some shots of the group (and me on the ground getting said shots of the group).
Some Old Tyme Photos of Vince - we do these once a year at the end of the summer as tradition. This year he was a cowboy. Very Mal Reynolds for you Firefly fans out there.
Then just a bunch of randoms for the last two weeks.
Thanks for letting me share some fun. I appreciate all of you coming along for the ride.
Once a year I set up a booth at a flea market in South Jersey where I sell off clothes, DVDs, books, toys, etc. that my family no longer wants or needs. It’s the one time each year I brave driving my husband’s cargo van because we typically amass enough tubs of “stuff” to fill the back of a van.
This year’s trip was a little different. Everything from the selection of items to the organization and selling of said items was markedly different from previous trips.
As I made my way through the house collecting items, I kept passing nursery items I’ve kept tucked away in the corner of the basement. His bouncer, his walker, his high chair and crib items were all I had left of his “baby days.”
You see, I’d already given away most of his baby stuff to my sister and a new mom I had met through Craigslist. These other items, though… these are the things that I just couldn’t part with. Too many memories were attached to them, and every time I tried to talk myself into giving them away because other folks could use them, I just couldn’t bring myself to do it.
I’d inevitably hear Vincent’s chubby little face falling into laughter as he jumped in his bouncer.
I’d see him smiling as he moved back and forth in the wobbler.
I’d see him clapping for the very first time.
Or my husband playing peek-a-boo as Vincent giggled in amusement from his high chair.
So those items – I kept them with me because I just couldn’t let them go. They sat, unused, in my basement. I secretly hoped that I’d be able to use them again should I find myself blessed with a miracle child.
After my miscarriage, though, seeing these items hurt so much. Every time I’d do laundry, I’d pass them in the basement and my heart would ache. I'd have to recollect myself in the basement before coming back upstairs because I didn't want John or Vincent to see me crying.
I knew that these beloved little items would have to find homes elsewhere. I wanted them to bring joy to a family instead of heartache to mine. So I vowed that these items would make their way onto the van this year. And I made good on that vow Tuesday. The items that weren't claimed by my sister or a friend were put out at the flea market. I sold most of his clothing and donated the rest. Many of his toys were either sold or given away (because I can't help but give free stuff to the kids who get super excited over random toys - heh). The only thing I got emotional over was his nursery set.
Winnie the Pooh sheets, blankets, a crib bumper, artwork, canvas, window treatments, a lamp and a music pillow were part of this collection. I'd only recently changed Vince over from this Pooh motif to his current Superhero theme.
Well, a really sweet grandfather came over to my table and wanted to purchase the lamp. He excitedly told me it was for his brand new granddaughter, Julianna. When he said that, I offered the entire nursery set for a retarded price. $10. And ya know what? I don't care. He said, "No, I can't take all this for $10!" Even my friend, Faith, shot me a look and said, "Really?"
I said, "Of course! It's got everything you need and if she likes Pooh, she'll love this. It's clean, soft and adorable. Just take it."
And of course he did. I was happy to turn over these items to someone I knew would use them well. Knowing these were going to a brand new baby girl just made me happy. However, after I bagged up the items and sent him on his way, I did choke back tears. I mean, how couldn't I? While I was happy to send that grandfather away with the set, I was also sad that the whole of Vince's nursery just walked away with him.
The day brought more of the same as folks went through the various items I had for sale. I was selling stuff off for stupid low prices if I saw it was going to a good family. The only time I "overcharged" was for Vincent's 3-in-1 swing. I think that was the item closest to my heart because of all the memories I have of him using it as an infant. An unhappy woman asked me how much I wanted, and I immediately didn't want to sell it to her. I quoted a higher price, knowing she wouldn't take the bait, and happily said goodbye when she turned her nose up at me.
Meh. I guess I wasn't as ready as I thought I was to give that one up.
So my house is now relatively clear of infant / toddler items. I honestly don't know how I feel about this right now. Sometimes I'm glad to have a cleaner house that is also free of the heartache associated with those items. Other times I'm really sad because I feel like I've given up hope for those children I never got to meet.
Right now, I'm okay. Though I don't have the physical items, I have the memories, and when my memory fades, I've got my videos. :)
So yup - there's my most recent flea market experience. How about you fine folks? Do you routinely do garage sales / flea markets? How do you handle parting with such sentimental items?
Me: “I’m just not feeling very well.”
John: “Why do you think you’re sick? Did you catch Vincent’s stomach bug?”
I stopped myself from angrily retorting, No, John, I did not catch a stomach bug. This is not a cold, this is not the flu, and it’s NOT my imagination. This is our CHILD, and she is being unceremoniously taken away from me… from US.
Instead, I just shot him a look that shouted, C’mon, you’re not this dense, John. To hit home the point, I said, “It’s only been a couple days, John. I’m still bleeding, and I just don’t feel well.”
Immediately he took his hand from mine and recoiled into himself. Here he was trying to have a fun, cute time talking about our upcoming “honeymoon” to the Bahamas, and there I go bringing up things he’d rather pretend didn’t exist.
This is going to be a long, long road. I just don’t know how to handle things right now. I don’t know what to say or do, so I mostly remain silent. For the most part, I think I’m okay. I’m certainly sad when I think on my child, but I’m also buoyed by my faith that this child is happy and praying for us.
That being said, I want to talk about this. Problem is, I don’t want to talk about it with just anyone. I want to talk to John, but John absolutely bristles at the thought. The last time we spoke about this was Sunday night, and he was itching to be done with it throughout the brief moments we discussed things.
In his mind, I am just wrong. I’ve been so desperate for a child that I tricked myself into believing I was pregnant and got my period early. All the other signs were just coping mechanisms. In a nutshell, he closed himself off to the possibility that I was pregnant.
I’m not sure if he fully believes that or if it’s his way of coping with the possibility of a miscarriage. He said the idea of a miss is upsetting, but he also says that since there’s no way to prove a child existed, I was probably just wrong.
I admit… I almost want to believe that because the thought is comforting. I’m now going back and forth on whether or not I want to believe it was all in my head. But I don’t believe it. In the deepest part of my soul, I know I held a child.
I’ve been yearning for children for YEARS. Why, all of the sudden, would I start developing symptoms now? What would have changed in the last month that would have suddenly set my psyche off balance enough to delude myself (and the physiology of my body) into believing I was pregnant… only to then suffer the heartache of losing that pregnancy within the month?
I just… no. I don’t accept it. I want to. I really, REALLY want to, but the more I try to rationalize that as my situation, the more my heart revolts and says, “No. You shall NOT ignore this gift you’ve been given. You shall NOT forget the life you briefly held that now beckons you, through prayer, to Heaven. This child was made through love in the Image of God. You shall not write her off as some mistaken illusion.”
Chided by love, I’m back to square one. I’m struggling to handle these feelings but I don’t know what to do with them. At times, I’m perfectly calm. I’m able to move about my day as if nothing has happened. Other times, I need a moment to recollect myself in private… a tiny moment to remember what it is to breathe.
Roller coaster implies highs. I don’t feel as though I have any highs. Plateaus of “okay” might be more appropriate. Plateaus of “okay” interspersed with dips in the road. I don’t believe I’ve spiked down into depression, but the hurt and the sadness and the utter hopelessness of my situation does drag me down some dark alleys sometimes.
I just keep chugging along, though. I keep telling myself it’s normal to feel this way. It’s normal to have bouts with these emotions throughout the day, especially given I’m still at ground zero.
But sigh. I just don’t know what or how to say things right now. So I keep silent because I’d rather stay silent than cry. I’d rather stay silent then go off on an angry tangent that only masks the guilt and feelings of failure that I have.
Really, that’s all the anger is there for. I’m not really angry. I’m hurt. Dear God, I am so, so hurt. Sometimes I hate my heart for its ability to keep beating. At least my lungs forget to breathe sometimes, but my heart... What a nasty little contraption to keep on beating – thump after painful thump – when everything else within me wants to crawl into a corner and die.
No… maybe that’s a touch dramatic. I don’t want to die so much as leave this world to see my child. To tell her that I love her and to let her, for even a moment, feel my fingers on her cheek.
Cruel, cruel heart with your rhythmic taunting. I’m grudgingly grateful that you are deaf to my soul’s plea for solace. Keep marching, for though you don’t march for me, you march for Vincent. Maybe that’s enough right now.
Our Lady of Sorrows, pray for us.
I took this video about a month ago.
Last night was a repeat performance, but instead of crying about letting them go, he just told me the fireflies were going with their "mommys and daddys."
He's growing up. But lucky for me, not all at once!
Vincent still does his "No Jesus!" whining when he realizes we're on our way to Mass. He does it every week, regardless of which church we go to. I no longer give it a second thought, because he's typically excited about going by the time we get there. It's just the idea of having to stop playing that gets him, I think.
Anyway, John still smirks at times when he hears Vincent doing that. He thinks I don't see it, but I do. And in my head, I just say a prayer that God keeps Vincent for Himself and gives him a deep, true love of Jesus and His mom. After all, if you've got that base covered, you're pretty much set.
Well, for every smirk John gets in, I am granted my own. Here's evidence of my latest one:
I snapped this when I went up to check on Vince after putting him to bed. When I'd left him, the dolls were on the table next to him. When I came back up, it was obvious that he'd tucked them in under the blankets (on either side!) with him. I had such a gratifying appreciation bubble up in my heart when I saw this. God's gonna make sure Vincent knows Him and loves Him.
And because I couldn't take only one shot... here's a clearer one! :) I chanced the flash for the second one... totally worth it!
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