A New Freedom
The past couple weeks have flown by. We’ve been immersed in a flurry of assessments and activities for Vista.
She started preschool this week, with her aide, Lynda. It went better than everyone thought it would. Lynda has been a huge help in managing her tantrums and heading them off before they begin. She’s been able to very quickly pick up Vista’s cues that she’s getting overwhelmed.
And for the first time, yesterday, Vista was able to tell another kid at her therapy group “No. Stop. I’m playing with that toy,” rather than dissolving into an instant puddle of hysterics. It’s something so small, but such a huge thing in V’s world for her to be able to do that.
I’ve also discovered that when you’re trying to dress a kicking, screaming, squirming, crying child who is refusing to leave an activity, it’s MUCH easier with another set of hands.
Having Vista’s aide has been such a huge stress release, I can’t even begin to describe it. Even the ability to go out and do things with V in the community has been huge. It’s a freedom we’ve never experienced before.
We also received Vista’s IPP (Individual Program Plan) today. This is a document where each of her therapists lay out the specific, measurable goals for Vista over the next few months and how we’re going to achieve them. It also gives her aide a framework of things to be working on with Vista in the classroom and out in the community.
In addition to her aide, V will be working with a physical therapist, an occupational therapist, a behavior consultant, and a learning support teacher. They’re also going to be adding a speech therapist into that mix, as well.
It means our days are booked solid.
But?
It’s so worth it. We’re already starting to see small improvements in her behavior.
The fact that I’m not so stressed and butting heads with her all the time, also means the quality of my relationship with my daughter has improved dramatically.
And that makes us both happy.
Don’t Expect This To Be Coherent
I haven’t been purposely ignoring my blog.
Life got in the way. It happens sometimes.
Vista finally has an aide. We met her last week for the first time and she’s lovely. I think she’s going to work out well. She’ll be spending a few hours every morning with V, either working with her at home or going to preschool or other activities with her.
We were supposed to have the aide here this week, but we had to put it all on hold because V’s been sick. (I believe that’s referred to as Murphy’s Law. That Murphy is a giant douche. He probably didn’t like puppies either. Jerk).
It started with a mild cough Sunday night that progressed to a fever hitting 107 on Monday …and a little bit of mommy freak out when the temp was so high that the thermometer couldn’t read it. Did you know some digital thermometers have a max temp reading, after which it just says ‘High’, which – note to manufacturers- isn’t really fucking helpful? Yeah, neither did I. It’s something I would be happy still not knowing.
She also had her first febrile seizure. That would be what ended up prompting hospital visit #1.
Three hospital visits later and we have a diagnosis of pneumonia with a throat inflammation that caused her to start coughing 100 times a minute. When she gets sick, she doesn’t do it half-assed.
It’s been a long sleepless week.
The cough syrup with codeine, that the ER doc prescribed for her cough, is my new best friend. And Vista actually likes to take it. Yes, you read that right. My child who fights every med we give her, willingly takes the cough syrup. I don’t get it, either. It’s a fight to give her Children’s Tylenol, but this disgusting cough syrup is OK in her books. *sigh* Whatever. I don’t have to fight to get her to take it. This is a good thing.
Unfortunately, with her being so sick, it means I’ve had to cancel my trip for next week down to California with @FlyGirlWS, to see a taping of the Ellen show. Which sucks. Big time. *insert giant sad panda here*
So with all that going on, even the thought of blogging takes too many brain cells.
I promise I’ll be back when my I can think coherently again. Which will hopefully be soon.
Therapy. We Needs It
Conversations in our house are never normal. Sometimes they’re weird. Sometimes they’re scary. Sometimes they’re borderline psychotic. Kinda like me.
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*standing in the kitchen talking to Bil while I fill a glass with ice*
Me: “Do I ever scare you? I mean, do you ever worry that one day you’re going to come home to find I’ve finally totally and completely lost it?”
Bil: “There’s an ice pick in the drawer over there….”
Me: “Right. Okay then.”
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Bil: “God… another damn email with Microsoft trying to convince the world how awesome SharePoint is.”
Me: “Isn’t it awesome?”
Bil: “Have you read my blog and twitter stream??”
Me: “Well…why do you specialize in it, then?”
Bil: “You can still specialize in something if it sucks.”
Me: “Good point. I want to specialize in something that sucks too…. What sucks?”
Bil: “Pauly Shore?”
Me: “Perfect. Going to watch Encino Man now.”
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*Vista’s playing with her toys and she has Little People horse. She’s making neighing sounds that are progressively getting louder and angrier sounding*
Me: “Vista, it sounds like you have a very disagreable horse there. Maybe he needs to be put down.”
Bil: “I wonder if they make the Fisher Price Glue Factory? *in his best announcer voice* Now with real glue sounds!”
Me: “I meant she had to put the toy down, not kill the horse…”
Bil: “Oh…right….”
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So, yeah… if anyone can recommend a good therapist…
Tastes Likes Chicken
“Vista! Leave the cat alone, already!” I said for the umteenth time today.
Vista: ”But he’s a chicken…”
Me: “He’s not a chicken he’s a cat.”
Vista: ”No. He’s a chicken!”
Me: “You were not thinking of putting him in the stove in your kitchen, were you?!?”
Vista: “No….. I was going to put him in the microwave…”
Me: *facepalm*
How To Tell If Someone Has A Disability
YOU CAN’T.
No really. I know what you’re thinking. ”But of course you can, Jenn. I’ve seen people in wheelchairs and they obviously have a disability, right? And that kid in my son’s preschool class who can’t walk or talk and has an aide… well, duh … disability!”
And you’re not wrong.
But you are wrong.
Not every disability is physical. Not every disability is obvious. Not every disability is instantly recognizable.
———————
This came up at Vista’s physio/sensory group again.
We’ve been going to this group for about two years. It’s been good for V on so many levels. It helps with her socialization, it definitely works on her sensory issues, it helps with her fine and gross motor.
But Vista looks and sounds normal compared to most of the other kids.
There are several new kids and mom’s to the group, right now. So I knew this question would come sooner or later. It always does.
“Why is Vista even here? She looks fine to me.”
Yes. I’m sure she does.
But you don’t notice how she doesn’t have the balance to walk up or down stairs without holding onto something. You don’t notice her refusal to do most crafts because her hands might get dirty. You don’t notice when we’re sitting in circle and her gaze goes vacant as she has a seizure.
Yes, I know she speaks very well. But that’s the result of 2.5yrs of speech therapy, months spent signing, and countless hours spent reading together and working on her verbal skills. But you don’t notice that she can’t blow out her birthday candles because she simply can’t coordinate her mouth to make that ‘O’ sound. And you don’t notice how she mixes up syllables on certain words. And you don’t notice how her mouth droops on one side in what looks like a mini-stroke when she tries to form words or sounds she’s not comfortable with.
I’m sure she seems charming and engaging. That’s only because you haven’t seen her melt down and try to attack another child or hurt herself. Her favorite thing right now, when she’s stressed, is to pinch her hand over and over until it bruises. But you wouldn’t notice that. All you see is my daughter sitting quietly while she does this.
And you can’t magically look into her brain and see that it looks like swiss cheese compared to most of the other kids there.
Vista is very adept at hiding her challenges.
But the fact is, my charming blond-haired, blue-eyed daughter is considered disabled.
Just because you can’t see it, doesn’t make it any less true.
It’s A Match
I woke up this morning to the sound of Vista sobbing hysterically.
A glance at the clock told me it was a smidge after 6am. In other words, too damn early to be awake. Ugh.
“Vista, sweetie, what’s wrong?” I called out dragging myself out of bed.
She came crashing into my room at the sound of my voice.
“I can’t find it!!!” *sob, hiccup, sob*
*sigh* ”Sweetie, what can’t you find?”
“I can’t find the matching sock. I can’t find ANY socks that match!!!” *cue fresh sobs*
“Are you kidding me? Really? You’re crying at six o’clock in the morning because you can’t find a matching sock?”
By this point I was resisting the urge to slam my head repeatedly on my night table.
*sniffle, hiccup, sniffle* “Yeah… cause they DON’T MATCH!”
“Vista, I love you, but your OCDness drives me nuts sometimes.”
I get myself out of bed and head over to her sock drawer. The offending missing sock that matched the other one she had pulled out, was of course sitting right there on top.
I picked it up and handed it to her. Immediately she was all smiles.
It makes me think back to the days when my dad used to call me ‘Jekyll and Hyde’. I’m pretty sure Vista is karmic punishment for my mood swings as a teen.
On the bright side, she was actually able to put on her socks by herself.
This is a new skill she’s acquired recently, so we’ll celebrate that instead. Is it too early for champagne?
Routine
One of the weird brain things Vista has going on is called ‘Partial Agenesis Corpus Callosum’ (Partial ACC). It’s sometimes called ‘split-brain syndrome’. Your corpus callosum is what connects the right and left side of your brain and lets them talk to each other. Vista’s, however, isn’t properly formed. And so it is to blame for some of her issues with impulse control, recognizing emotions, and decision making.
The other day, a blog I read that shares stories of people living with ACC linked to an interesting video on split-brain.
There’s a part where the parents talk about having to learn that getting mad and yelling at their child is a waste of time and effort, which made me laugh. This is so true of Vista. You can get upset with her and she’ll just stand there with a blank look on her face, or say something random and walk away. That would be the point where I head for the liquor cabinet.
Watching the video, though, did give me some other insight on how to get Vista into some sort of routine.
As much as she hates leaving an activity, once she’s stuck into it, she’s not a strict routine type kid. She’s much more like her father, in that regard. They’re both free spirits. And it drives me crazy. Seriously. I’m the person who lives and dies by my calendar. I don’t do well with unstructured.
I’ve been struggling to find a happy medium with Vista. Something that’s easy for her to grasp and makes sense to her little brain and allows us a tiny bit of structure to the days. Also something that will help reduce the battles for simple everyday things like brushing teeth, getting dressed, and going to bed.
So, this is what I came up with.
A ‘chore chart’. Right now it’s meant to help her with basic life skills. As she gets older, it will evolve to include more ‘chore’ based items like making her bed, or helping with dishes. But for right now, we’ll start with the simple stuff. Heh.
It’s made with a piece of white poster board, stuck with magnets to the fridge. Each chore is a piece of paper glued to poster board then mounted on magnets, so we can switch or add chores and tasks easily.
For the actual success/failure of whether the item was completed, I wanted something meaningful that a 3yr old could understand. Check marks are random. She’s just not going to get that. And stickers really don’t mean much to her either. So what I settled on was circles of yellow and red paper (I used a circle craft punch to quickly make them) and drew a happy face / sad face on them. We then use small magnets (which make up a nose on the faces) to stick them onto the board. I did it this way, rather than gluing each circle onto a magnet, because it’s easier to store flat pieces of paper when they’re not in use. (that’s a Canadian quarter to give you an idea of size)
The way we’re working this is if she goes the full day with 1 or less sad face, then she gets a treat from the treat basket (which is an old easter basket filled with random dollar store items). And so far she seems to be grasping the concept very well. She’s asking for almost everything she does, if that means she gets a happy face on her chart. And the mere mention of a sad face was enough to stop a tantrum in it’s tracks this morning.
The whole thing cost me about $5 in dollar store supplies to make. Cheap and easy, just like me. Wait…what?
For those who want to make their own, here’s the chore items you can print out. It’s done in a Word doc and the pictures are simple clipart.
PDF version: Chorelist PDF
Word version: Chorelist MS Word doc
*just a tip – I glued the whole chore list page to poster board and then cut it out. Much easier than trying to paste little strips of paper onto poster board.
** And another tip – this is a kids chore chart. Stop trying to make it perfect. They’re not going to notice if the lines aren’t exactly even or the faces are a little bit off.
It’s Time
My friend Melissa came over for coffee yesterday. It’s a weekly ritual we’ve had since our girls were only a few months old. A break from the usual routines to stop and enjoy someone’s company.
It’s funny how with some people, you never run out of things to talk about.
And I think that’s the sign of a good friend. When the most mundane details of your life are interesting and important to them. And vice versa.
As we sat chatting yesterday, I quietly told Melissa that I had finally handed in the papers to qualify Vista for an aide.
“This is a good thing,” she said, leaning across the table. ”It’s time.”
It’s time.
Yes it is.
When we first started down this path of diagnosis with Vista, we were told by several medical professionals “well, I wouldn’t worry too much about her delays. Most kids normalize around the age of 5 and you can’t even tell there was any issues when they were younger.”
Part of me has been holding on tight to that. Tighter than tight.
It’s was like a mantra. ”She’ll turn 5 and then she’ll be OK. We just have to wait until she’s 5.”
I know it sounds ridiculous reading it. But it was that light at the end of the tunnel. Five was the magic number.
And so I put off getting an aide. After all, we really didn’t need one. By 5 or so she’d catch up. I mean, look at her. She looks perfectly normal. She’s not one of those kids that needs an aide.
Only she does.
And it’s time.
Time to let go and realize that Vista isn’t going to magically be all better on her 5th birthday.
Time to admit that we need help and we can’t keep doing it all on our own.
It’s time.
Only… I wish it wasn’t.
Holding Pattern
Warning: This is a boring Vista medical/health update and also a bit of a novel. If you’re not interested, you should go check out @Psychmamma’s pretty snow pictures instead 
Sooooo… yeah. Way back in November I wrote about how Vista hadn’t been doing well. I originally suspected her sudden weight loss, rash, lack of appetite, etc were due to the new anti-seizure meds she started at the end of October. Of course, being just a mom, I was pooh-poohed, and told it was just viral. I wasn’t convinced.
I really wouldn’t have fussed it too much, had it not been for the 10lb weight loss (which left her looking frail), and the fact she stopped having bowel movements altogether.
I finally took her into our family doc, who is awesome. We decided to rule out EVERYTHING it could be, until the only option was the meds. He ordered abdominal xrays checking for a blockage or obstruction, as well as a blood panel checking for diabetes, cancer, thyroid, you name it. These all came back normal. All of them.
It was time to call her neurology team and tell them she was still not well. Every other possible explanation had been ruled out, and, as it was right before Christmas, I wasn’t buying a virus that had lasted two months, especially when all her blood counts had come back normal.
They agreed, and we decided to keep her on her meds over Christmas and bring her in early January to discuss options. Then the nurse mentioned that perhaps we could try splitting her med dose. She didn’t think it would make a difference, but it would be something else to try until we went in to see them.
So, rather than the full dose in the evening, she now gets half in the morning and half at night. And guess what? Rash? Gone. Bowel movements? Returned. Weight loss? Stopped. *poof* All her symptoms magically disappeared.
We’re still not sure why she was reacting so badly to the full dose (she is still solid in her status as the ‘little anomaly’) but we’re just happy to have it figured out. For now, we’ll leave things like this as they seem to be working.
Our project now is to get her to put some of her weight back on. At 38lbs and almost 3’6″, she’s too slim for her big frame.
The other thing we had going on during this, is the first part of her pre-surgical testing (in preparation for the possible eventuality of brain surgery for her epilepsy). This was a neuropsych evaluation that tested her IQ, cognitive abilities, and other brain functions. We got the results right before Christmas, and the results were… interesting.
She has problems with impulse control (so telling her not to do something can actually make her do it. Doh!) and executive brain functions (these are to do with planning, abstract thinking, troubleshooting, stuff like that). These are consistent with her abnormal EEG and the spiking they saw in the back of her brain.
So, what does this mean? Essentially, that V could be a danger to herself. She can’t stop herself from touching a hot stove if her brain decides to do it. It means, as we already knew, she requires constant supervision. It also means that we’ll need to change some of the ways we parent her, because they’re not working and they’re not ever going to work.
The neuropsych team has written a recommendation that V have a behavioral aide with her, so I will be putting all the papers together tonight to get the application in place for that. That will take some of the stress off us, I think.
They also recommended further testing. When she’s older they would like her to have a MRI neuropsych eval, that would fully map her brain functions. The next step, as far as the surgery goes, though, is a 5 day hospital stay, with her hooked up to an EEG machine and video monitored, while we pull her off her meds and hope she seizures. Yay. There’s no date set for this test, yet, and I’m, quite frankly, in no hurry to do it.
For now we’re in a holding pattern. As long as her meds keep working for her, and we have no more adverse reactions, we’ll keep things as they are. And keep our fingers crossed.
Happy Holidays With (Sensory) Kids
I originally started writing this as a post for how to deal with kids with sensory issues during the holiday season.
But then I realized, a lot of these could apply to all children.
I think kids have more pressure to perform during the month of December, than they do all year.
And by perform, I mean, play the perfect, well behaved, child. Which we all know, for the other 11 months of the year, is the furthest thing from the truth.
So take a moment to realize that the planet is not going to self destruct if…
- Kids leave the table before the meal is finished.
Who made up the rule that kid have to sit for the whole holiday meal? Seriously? Who? Your great-great-grandmother’s third-cousin-twice-removed? What is going to happen if the kids leave the table before the meal is done? Relax. It really isn’t the end of the world if kids don’t eat every last morsel on their plate. And if your house is anything like ours, they’ve probably been snacking on goodies and treats all day and really aren’t that hungry anyways. So, let them go. Let them get up from the table once they’re bored and send them off to play. You know what will happen? You’ll have a nice, quiet dinner with adult conversation, and without wanting to pull your hair out while they fidget and whine. - Your kid doesn’t want to eat holiday dinner at all.
It’s new food. Different from what they’re used to. That can be a huge deal for some kids. Do yourself a favor and bring along some of their favorite foods and snacks, so if they don’t want to eat the fancy turkey with stuffing and cranberry sauce, then can at least have something. - They open one (or two…or three…) presents before Christmas Day.
This is another of those ‘who made that rule’ questions I have. I wrote about this last year, and we’ve implemented the same thing this year. Christmas Day is out, the 12 Days of Christmas is in. Throwing a ton of presents and wrapping paper and lights and noise and family and the list goes on at a kid and expecting it not to be overwhelming? Is simply not realistic. So instead, Vista opens her presents from friends when they are received, and her presents from us in the days leading up to Christmas. Christmas day is reserved for stocking and Santa presents. That is plenty. The bonus of doing it this way, is it also gives her time to open and enjoy each present. - There is no Santa picture.
Malls are noisy, loud places during the holidays. The lights, the music, the people. Do you leave the mall after a Christmas shopping trip feeling relaxed and renewed? No, of course not. It’s hella stressful for adults. So for kids? Is it any wonder that they’re a complete mess by the time it’s their turn to see Santa? And THEN we expect them to smile and hug a complete stranger in a red velvet suit. Uhhh…yeaahhh… about that.If a Santa picture is really that important, take the money you’d normally spend on a Santa pic, pool it with some friends and rent a Santa suit for someone to dress up in. Then take the pictures at home. Sure you won’t have the sleigh backdrop, but you might actually have a smiling kid in the picture instead.
- They don’t wear that fancy $200 Christmas outfit you bought them. And the same goes for the reindeer sweater.
Lets face it. Fancy dress up clothes are not conducive to being comfortable. And they’re really not meant for playing in, either. If it’s really that important that everyone see them in that ‘ZOMG! It’ll look SO CUTE on her’ outfit, then have them wear it to the party, but bring some comfortable clothes they can change into. The other option is to find a happy medium. V’s wearing velour pants (http://bit.ly/velourpants <-not any sort of affiliate link, just sharing a pair of comfy pants) with a sparkly top. Cute, no? Both are comfortable, but still dressy.
- Your kid doesn’t want to hug your aunt’s brother’s cousin’s daughter.
Touching can be a big thing for sensory kids. And a lot of people (never mind just kids) don’t like strange people in their personal space. Instead of hugs, try a handshake or the knuckle bump (or as V likes to call it ‘punch it out’). Just be ready to throw yourself in front of Aunt Erma before she gets her sticky paws around your kid.I know for V, the other part of being around people, is that smell is a HUGE thing. So someone wearing strong perfume? Forget it. She won’t go near them. The same goes for someone she knows changing their smell. My BFF came over for coffee once and wore a different perfume than normal. V wouldn’t go near her because she didn’t smell ‘right’.
Another thing you can do is show kids pictures of the people they will be meeting, ahead of time. This lets them prepare, and makes that uncle he sees once a year a little less of a stranger.
- They just want to play by themselves.
New people, lots of noise, people wanting to pat them… Nightmare waiting to happen for a sensory kid. We’ve learned to bring an iPad, or DVD player, and a set of headphones with us when we go places. If it’s still to much for V, we designate a ‘quiet room’. Somewhere she can go and sit by herself, away from the hustle and bustle, until she’s feeling ready to rejoin us. When she disappears, we just politely explain that it’s a bit much for her, and she needs to wind down a bit.
The biggest thing is to follow their lead and pick your battles. Nothing’s worse than spending your holiday arguing with your kid. And if it means deviating from the norm so everyone ends up enjoying themselves a lot more? Then do it.
Your sanity will thank you.
