breakfast
breakfast consumed
coloring with buddies (so very seriously)
Poppy came over from the west coast to take us out to dinner.
Then we played in Tradition Field
Time to open presents.
A new Harold book! Woo-hoo! (Actually, three new Harold books.)
And then we put on an episode of Harold and the Purple Crayon he's never seen before thanks to his new DVD.
And then... good night.
Posted at 08:00 AM in Fragile X, Photo of the Day, Toby | Permalink | Comments (0)
Happy Birthday, Toby.
What, you don't know that name?
Hmmmm, How about Tobes, Tobikins, Tob-EE-as, or (surprisingly enough), Tobias.
Yes, you know those. As well as Cutie Cutes, Stinker Stinks, Sweetie Sweets (sensing a theme?) and Poopy Doopy.
It's a good thing your Dad and I took so long to agree on your name, huh? After all, we're sooooo committed to it.
Well, here we are. My "baby" is three. Last Friday we said our goodbyes to Ms. Amber your play therapist. This Monday we had our last appointment with Ms. Elaine your OT. Later this afternoon we do your outtake assessment with Early Steps. Breath in. Breath out. (That's a reminder for me. You're totally like, whatev.)
Yesterday I watched you play in our new kiddie pool, chasing Blue and mimicking him as he jumped over the side and splash crashed inside. You gleefully followed suit, purposefully sliding into him, and I thought, when did you start playing like such a big boy?
The guest room closet is used for the "in between" clothes. Too small for Kaden, still too big for Blue. Too small for Blue, too big for you. Except, Mr. Weed-Fast-Grower, more and more clothes are going straight from Blue's drawer to yours. Your father has a hard enough time as it is if I ask him to put clothes away. Now, it will be impossible. Blue is FIVE, today you are THREE. What are you trying to prove, kid?
You are my snuggle buggle boy. The best part of my morning is the five (sometimes ten!) minutes you relax against me and drink your almond milk. I hope this is our tradition... forever? Is that too much to ask? You especially love to snuggle in "my bed" (which is what you say even though your talking about my bed). But you don't just reserve snuggles for me. You'll put that little head into any old shoulder that gives you a squeeze. You've won over many, many a heart that way.
I love your giggle. Especially when you're over-tired. The sillies attack and you pretty much can't even stand up you're so overcome with the hilarity of life.
I can always get a laugh out of you by saying, "guppy," or "bootsie." To you, these are just the silliest words. And when I say, in my best Woody voice, "There's a snake in my boots," you may even come out of a tantrum, you like it so much.
You're skinny. I'm a little worried the doctor is going to yell at me on Friday at your check up. Sometimes you eat. Sometimes you don't. You will never turn down a slice of turkey (a compromise in our veggie household), raisins, bananas, fruit bars (Target's Archer Farms brand), or Publix chocolate chip cookies. Everything else is hit or miss. One day you're a bread addict. The next day you turn up your nose to it. One day you act like you could eat a whole carton of strawberries. The next day you refuse to acknowledge their existence on your plate. Sometimes when I'm cooking dinner you try and steal every cherry tomato you can get away with. Other times, when such cherry tomatoes are legitimately yours, you decide they are meant for nothing but squishing between your fingers. So. Rotten. But when you want to eat you do and until the doctor tells me otherwise I think you're eating enough, so unlike your big brothers who have to try things or eat certain amounts before they can be done, I just totally follow your lead. Because the few times I've pushed you, you've just thrown up on me. Lesson learned!
You recently survived your first trip to the dentist and, a few months back, your first "professional" haircut. I put you through these new things and you totally exceed my expectations. But this not being potty trained yet thing is holding you back. It's gotta happen for you to get out of the baby room at church and if I'm going to ever sign you up for any type of Mom's Day Out, which, now that you're three, I could possibly do.
No pressure, kid, but Momma's got goals for you this year. Yup, like use the potty. I also hope you'll string more words together and use more verbs and pronouns. And not give up on utensils quite so quickly. You start off your meals with the best intentions, and then midway I'll look over, and see fistful-of-dinner approaching your mouth.
Now that your three, these aren't just MY goals, but they're on paper typed up in your IEP. Totally official. Seriously, where you poop and pee is now of interest to the St. Lucie County School District. Embarrassing? Well, master the skill, and off the list it goes!
I may not use the potty but I can work this fake flower like a nunchuck!
AND a broom!
You are my greatest source of laughter. Sometimes we just lay on the floor and laugh and tickle and do airplane where you're up high on my feet. Before I know it twenty minutes have gone by.
I love watching you "read" to your stuffed animals. I love how you say "Phineas and Ferb." I love how excited you get to watch the garbage truck go around in our neighborhood. There is just so much about you that brings joy to me which is why birthdays are bitter sweet for this old mom. I'm excited to watch you grow, but I'm fearful about what endearing habits you may leave behind.
But, onward we go. For in the words of Dr. Seuss (who's a very popular guy in our house these days), "And will you succeed? Yes! You will, indeed! (98 and 3/4 percent guaranteed.) Kid, you'll move mountains!"
I've got a shovel for ya. Lead the way.
Special Birthday Breakfast! Someone was still waking up and little unsure of what to think of all the hoopla.
But considering the contents of the plate, it didn't take much convincing to get Toby to dig in.
Posted at 10:15 AM in Faydra, Photo of the Day, Toby | Permalink | Comments (1)
I love the whimsy, colors and silly rhymes of a Seuss story. The kids are right there with me. Blue would have us read Hop on Pop every day if we'd agree to it. All have loved Mr. Brown Can Moo Can You? And The Grinch (as played by JIm Carrey) is a hero in our house.
But I've never done a Seuss party.
It was time.
(How can this be? Our youngest thing will be three?!)
A person's a person no matter how small.
(This is a small hay wreath, plastic left on, with about 1,000 mini water balloons (or so it seemed!) pushed in with greening pins - about 8 balloons per pin. I used two boxes and a few pins from a third box but I still didn't get to the outer edges. The sign is card stock, took the Cat in the Hat pic off the internet, ran ribbon through the top and then I pinned it into the wreath - I figure I'll just change out the sign and use for different events as needed.)
The most fun aspect of a Seuss party is the decor!
From there to here,
from here to there,
funny things are everywhere!
Grinch in the entryway! And The Foot Book is there because I had six blue foot prints taped to the floor with words: Left Foot. Right Foot. Feet! Feet! Feet! How many different feet you meet!
Just past the entryway, this "welcome" table:
The "runner" is just wrapping paper. The basket was for donations. It was nicely full by the end of the party! And on the other side we had Seuss's Happy Birthday To You as a guest book.
The message on the sign reads, "Wait, Mate! Stop, Pop! Here is the place for you to drop a birthday message or simple, "Hi," for our very special birthday guy! Write on any of the pages something Toby can treasure for ages! Just grab a pen or maybe ten (if you think you'll need a lot of ink) Then get to signing this guest book, Friend!" The pen holder is just a tin can covered with paper with ribbon around it.
Our dining room is to the left of this and there sat the dessert table!
On this table: Red velvet cupcakes with cream cheese frosting and blue cotton candy, mini chocolate cupcakes with frosting and red life savers, jello parfaits, strawberry and marshmallow kabobs, and Oreo Hat in the Cat cookies.
Runner is more wrapping paper. Stuffed Cat in the Hat was so on sale at Target I couldn't resist. Spoon holder is another tin can covered in paper and ribbon. Kabobs are also in paper-covered tin cans, the skewers are stuck into flower foam covered in tissue paper.
I couldn't get my Thing Three circles (internet image I put at 12 to a page and miraculously printed at the exactly right size for my circle punch) to stick to the cupcake paper so they just got tossed about. Oh, and the cotton candy starts to dissolve after awhile so it has to be put on at the last minute.
The red layers are just strawberry jello. The white is panna cotta as explained in this recipe. I made these throughout the day on Friday and gave each layer many hours to set. I meant to add a dollop of whipped cream to the top, but I always make this fresh and just ran out of time. Once guests start arriving I'm done. (Otherwise I could tinker and add... oh to infinity.)
Enter the kitchen. On the counter sat drinks. Just soda and well, this:
(pink lemonade and citrus seltzer)
Also on the counter was this:
Maybe the live prop idea wasn't such a good one. This poor 'lil guy didn't end up living long enough to be named. Sigh. I kinda wanted to have a gold fish too, but then Kevin told me how often the pet shop guy said we'd have to clean the bowl and just like that I'm over it.
In the breakfast nook sat the food table with red and white streamers behind and Foo-Foo the Snoo (from I Can Read with My Eyes Shut) looking on.
The pic above her has pages from Oh the Thinks You Can Think covering what's usually there. I had an extra copy of this book so pages of it were used over other pictures in a few places in the house.
Along with Foo-Foo and food, we had a Yottle in a bottle?!
(from There's a Wocket in My Pocket.)
Menu was this orzo salad (recipe doubled), gold fish, green eggs (no ham for our veggie family), and some puff pastry spinach things from Sam's.
Streamers are the best.
Moving into the living room...
And over the tv I had some quotes, but that was it for this room because it was needed for the Kindermusik class we had. I told the instructor about the Seuss theme so she brought Seuss's ABC Book and read that too. Toby loves My Gym circle time, so I knew he would be into the Kindermusik hour we planned.
I know he isn't smiling in these pics, but he was very intent on doing what the teacher was doing and even though it was an HOUR, I'd say, he was the one who stuck with it the best!
So did my Mom.
(She's holding my niece and singing, "Move on back," from Wheels on the Bus.)
Meanwhile Kaden was outside with another little boy his age.
So... onto outside fun.
It's opener out there
in the wide open air.
We had a Splash Zone, Lorax Garden around our sand box, and a table on which I drew cats for kids to color and add hats. Oh and juice boxes and ice pops.
(The balloons, filled with water and frozen, served as ice. On the other end of that ribbon I tied on scissors to cut the ice pops.)
Lorax Garden:
I drew The Lorax and one barbaloot.I had four bags of colored sand sprinkled around and filling three flower pots that had big, fake polka dotted gerbera daisies in them. I bought new kids gardening tools for the sand box and made six Truffula trees. Four were made out of PVC, spray painted and held up by re-bar and two were drawn on paper and taped to the fence. All the tree top tufts were made out of tissue paper.
My nephew digging in. (This photo cred goes to his mommy!)
In the "Splash Zone" we just had a kiddie pool, water balloons and those splash-bomb water balls, bubbles, and a target made out of cardboard and spray paint mounted on the fence as a possible place to aim balloons and balls.
Toby and his cousin, Chloe. (Colton's twin sis)
And the coloring table:
I loved my little bud vases (caper jars spray painted white with red tape rings) but having water on a paper table covering wasn't the best idea because the wind blew them over.
See the spillage :-( For these cats, since I needed them mass produced, I printed up a pic, drew over it to make it darker and then traced. (All other Seuss creatures were free-hand.) Even with some wet spots, there were plenty left for coloring.
And a few final touches:
You have brains in your head.
You have feet in your shoes.
You can steer yourself
any direction you choose!
We had come paper hats from the teacher supply store:
And even places that didn't look as I would have liked, I made it work...
(The week of the party Kevin cut these big, beautiful bushes down to nothing but sticks and then, as soon as he was done, thought, Faydra is going to kill me.... Faydra considered it, but came up with a different solution.)
I made a playlist consisting of birthday songs, music from Seussical the Musical, music from The Lorax (my kids cannot get Let it Grow out of their heads), a few Jim Carrey Grinch monologues, and rounded it out with some of our general kids music favorites. I also found, when searching for "Seuss Music," a song called Dr. Seuss by Trever Hall that I really like.
Today you are are you, that is truer than true.
There is no one alive who is youer than you!
It was a perfect Toby party. Lots of food and friends and fun, but he never really clued into the fact that all the hubbub was about him. We didn't do a candle blowing out time or have any moment where he was on the spot. We did sing "Happy Birthday" but it was at the end of the Kindermusik class, so it was just another song to him.
(another Marissa photo cred for this one)
Great day.
Posted at 02:00 PM in Birthday Parties, Food, Fragile X, Photo of the Day, Toby | Permalink | Comments (1)
Dolphins! Zebras! Moose-camels! Show me now!
Toby, show-off that he is, decided to break out with the sentence, "I want see animals," at his assessment with the school board back in April. I know this, because yesterday I went for the follow-up appointment to go over their findings and subsequent recommendations.
The school board assessment was April 30th. Friday, May 11th Toby had another assessment with a speech therapist where he currently goes. Results were the same. In expressive and reception speech Toby is on the lowest end of "normal."
I'd guess for most parents this would be horrifying. For us, it's kinda terrific.
Look at me! I'm kinda totally terrific.
Especially since he still qualifies for services.
So today, along with a trip to Home Depot (When's the last time your party supply list called for rebar? Well, mine does. Kevin tells me this is what I need to get my Truffula trees standing.) I get to stop by Toby's new school and enroll him. He'll get 60 minutes a week of speech/language and 45 minutes of OT. Currently he's been getting 60 minutes of speech/language and 60 of OT, but I'm not entering into a battle over 15 minutes. We agreed easily on his first round of IEP goals. Nope, no battles.
This is after another ridiculous bout of show-offiness last Thursday.
Last Thursday was Toby's first trip to the dentist.
My mom's a little crazy with the camera, but no, she did not go so far as to take pics of me at the dentist. So, here I am with a lion at a splash park.
Toby's teeth brushing habits are intermittent, and I was really dreading this appointment both for what they'd say and how he'd get through it.
I didn't have much strategy going in beyond that I purposefully scheduled Blue's recent cleaning two weeks ago and Toby tagged along so he could remember what a fun and happy place our pediatric dentist's office can be. One week out it was Kaden's turn and again Toby came with. Even so, on the morning of his appointment I reminded the receptionist about Toby's Fragile X (I'd said something when I made the appointment), I gave her some Fragile X info cards to keep with his file, and I told her that she could tell the hygienist that my expectations were zero, that all I really hoped to get out of the appointment was the chance to evaluate how horrible it was in the hopes that we could stand a better chance at the next go.
I really believed this.
We'd just come from My Gym. I'd considered skipping, but he likes it, and it's our routine, and I figured we'd leave early to give us a little downtown before the big dentist appointment, but, of course, this was the day that Toby decided he was going to be Mr. Participatory at My Gym. For the FIRST TIME EVER, he even tried a skill BEFORE the other kids and was the EXAMPLE for the other kids. It is a wonder I did not start crying. So I couldn't tear him away early when he was loving every moment of it, and I rushed a very stimulated, special needs, two year old, to his first dentist appointment.
Brilliant parenting, I know!
But he showed me. He was a rock star totally letting the hygienist brush his teeth, save for one little bite, he let the dentist poke and even scrape a little around in there. And! His teeth are even in good shape!
Can't always be a rock star. Sometimes you just gotta lounge and watch Mickey Mouse Clubhouse.
The funniest part of the whole visit was that we recognized another little boy, Toby's same age, who was also there for his first appointment, but for this "neurotypical" boy it was no-go. There was much weeping and gnashing of teeth and that was pretty much it. No colorful, latex gloves ever got near that boy's mouth.
Yup, funny. (Well, from my point of view. Probably notsomuch for that boy's mom.)
Now if only his rock-starness will continue through when that new potty chair I ordered comes in...
Posted at 01:52 PM in Fragile X, Photo of the Day, Toby | Permalink | Comments (0)
Newsweek has an article on long term care for those with special needs. What happens when they aren't kids anymore? What happens when parents can no longer take care of them? It mentions Fragile X specifically.
A Canadian mom whose son has Fragile X struggles with school and mainstreaming decisions.
And now for the personal PSA...
I may have mentioned a few times in the past few weeks we have a birthday coming up. :-)
In celebration of Toby turning three we would love donations to be made in his honor to the National Fragile X Foundation. As usual (we never do birthday presents at our parties), we are asking party guests not to bring presents either but to donate online as well or...
I'd like to put together a basket of Seuss-themed goodies to donate in Toby’s honor to a silent auction at the 13th International Fragile X Conference to be held this summer in Miami. Seuss movies, books, beach towel, puzzles, stickers, or giftcards to places like Amazon or Learning Express where Seuss things can be bought – it would all be welcome! If we get enough loot we’ll split it into two baskets! Lots of families of young children will be attending this conference (like us!) so it should be a fun auction item. All proceeds from the conference silent auction go to the National Fragile X Foundation.
His party is May 19th. If you love Toby and Dr. Seuss, consider yourself invited. If you don't already have the information, but want to drop in, message me.
Posted at 08:00 AM in Fragile X, Toby | Permalink | Comments (0)
We’re approaching a significant birthday in our household. No, no one will soon be able to drive or drink alcohol or vote for the first time. No kiddos are entering double digits just yet. No grown-ups are hitting a new decade.
But on May 23rd Toby will be turning three.
I know right. THREE!
You have no idea why three is significant do you?
Then you must not have a child with special needs.
Three, in the life of a special needs child is a big deal because three is when they age out of the state’s Early Steps program. (Different states have different names. Here in Florida it’s Early Steps. When we lived in Texas it was Early Child Intervention. In North Carolina, where we lived when it was just Kaden who received services, the title was the biggest mouthful: Children’s Developmental Services Agency.)
Toby was six months old when we moved to Florida. He began speech therapy services by the time he was eight months old. He started play therapy shortly after that. And occupational therapy shortly after that. I can still remember his very first speech therapy appointment. The therapist casually used the words, “sensory defensive,” and I was almost brought to tears. Here was my beautiful baby boy. He could sit up. He was on the verge of crawling (and did by the end of his eighth month.) He could exchange an object from one hand to another. He smiled and cuddled and seemed genuinely affectionate. Ok, maybe he had a Fragile X diagnosis, but I’d gotten used to his one and only label because overall he still just seemed like a baby who could do baby things. Now suddenly here was another label. I had officially entered the world of tests and labels. I had a baby who wasn’t responding “neuro-typically.” I had a baby who wasn’t doing enough baby things. I made it through the appointment, but I cried in the car.
It got better.
This world of tests and labels really was out to help my boy. My skin thickened a bit. We forged ahead.
We eventually grew to love our speech therapist. And our play therapist. And our two occupational therapists. But now we have to say goodbye. Therapists who have known Toby since before he could crawl! Therapists who used to carry him back to their rooms but eventually walked hand in hand with him to his scheduled activities. One even came to his second birthday party.
If we kept up their services we’d be paying out of pocket, 100%. It would count toward our insurance deductible, but that’s so high, we’d never hit it and see insurance kick in. Instead, we are saying our goodbyes.
And transitioning.
When a special needs child hits the age of three he enters the world of school board services. Last week we trekked up to the Fort Pierce offices for Toby to be tested. In another week I have my follow-up appointment to review their assessment and find out their initial plan for Toby’s new services. And then, because Toby’s birthday falls with two weeks left on the school-year calendar, he may even start that new plan before summer begins. We’ll see about that. It’s a lot of change for a kid who faces the Fragile X symptom of anxiety particularly heightened by changes and transitions.
He’s not the only one hitting some anxiety about these transitions.
This Mama Bear wants what’s best. I get that the school board has many kiddos with many needs, but this is MY kid. I want a service plan that best meets his needs. Period.
And I hate that he won’t have services through the summer.
Then again I also realize that because he’s MY kid, ultimately it’s MY job to keep up his services. Although I can’t financially fill up his schedule with private appointments, I can take an even more active roll in his day-to-day at-home therapies. Play therapy has always been Friday mornings for one hour at the house. We aren’t going to fill that hour with Sesame Street or independent play. We’ll have puzzle time and matching games and sensory play and finally give riding our very ignored tricycle a better go. Yes, these are things we sometimes do, but not in a regularly scheduled way. Pushing Toby, is something that happens inevitably because he is the youngest in an active family. Will Toby play in the ball park and handle ball park noise and concession smells? Yes, he will, if big brother has a game. Will Toby get squeezed into a life jacket and tossed onto a kayak to be glided along inlet waterways reflecting back Florida’s glaring sun? Yes, he will, if that’s what Mom decides we’re doing to celebrate Mother’s Day. And he goes with it. Fragile X or not, like most kiddos third in the line up, he is one helluva trooper. But… that doesn’t mean there isn’t room for more structure and stimulation of a more deliberate design within our week.
Yup, this mama gets to add “therapist,” to her chef/housekeeper/chauffeur/nurse/party planner/teacher/activity coordinator/family photographer/videographer job title.
Have I mentioned that I’m now 30,000+ words into the novel I’m not writing?
Oy.
And the other thing about three… The baby title is a distant memory. Toddler doesn’t even fit. He is officially a preschooler.
High chairs, diapers, and cribs are not the trappings of a preschooler.
We have some more adjustments to make.
We still have a high chair in our dining room, but Toby sits in a regular chair now for most breakfasts and lunches. His bed is still set up like a crib, but he sleeps in a big boy bed when we travel and the plan to convert his crib to a toddler bed is in place. (After his party weekend we have a little paint update and remodel scheduled for his room).
As for the diapers…. He hates the potty seat. There is much, much anxiety surrounding his potty seat. For months now I’ve been asking him if he wants to try his potty seat. No way. I have tried bribes. Still, no way. That boy is getting a potty chair for his birthday and finally trying on the new Thomas the Train underpants that have been waiting and waiting for him in his pajama drawer. Oh yes he is. Not saying that it will work. Just saying we’re giving it a more concentrated effort right as soon as we turn that three corner.
Kaden and Blue started swimming when they were three.
Swim lessons already scheduled.
Three is also the age when I will consider meds. I will start that discussion with his pediatrician at his three year appointment, pay much, much attention to this at the Fragile X conference in July, and then, if I think there is something that will just help bring things down a notch, calm that distracted brain a touch, we’re trying it.
I’m telling ya. Three. Is. BIG.
At his last Friday play therapy appointment his therapist asked what my goals were going into his school board IEP (Individualized Education Program). I looked her, wondering if she’d think I was crazy but answered, “That he be mainstreamed by the time he starts kindergarten.” She nodded. She hopes for that too.
We’ve got a lot of work to do.
Meanwhile I’m still making my truffula trees and attending to Seuss party details.
Because, it’s still, well, just three.
Toby’s three-year-old world may now include words like school board, IEP, potty training, meds… but it still has to be a world of whimsy. A world with silly tickle fights, cupcakes, cotton candy, story time and snuggles. A world with Sesame Street.
One day at a time, right?
(And then before I know it, he’ll be four.)
Toby during our recent kayak adventure. Is it just me, or is there a look of Old Man and the Sea determination in his eyes? In any case, he was ready to get back onto the water after a brief island stop.
Posted at 03:00 PM in Faydra, Fragile X, Toby | Permalink | Comments (1)
I got it in my head that I wanted us all to go kayaking. To keep the adults to kids ratio even, we invited my mom and called it her mother's day present. (Then she paid for lunch and called it my mother's day present. Win - win!)
I was pretty positive at least one kid would end up in the water, but nope. Even towards the final stretch when Toby started getting restless and Kevin and I kept passing him back and forth between our kayaks - we managed to keep everyone in a boat.
FANTASTIC morning.
Posted at 04:10 PM in Faydra, Florida, Photo of the Day, Toby | Permalink | Comments (2)
In recent Toby happenings...
Yesterday morning I was sitting on the couch with my lap top and Toby came up, pulled my glasses off my face, and said, "Surprise." No idea where he got that from, but it made me laugh.
We have a small plastic moose that Toby insists is a camel. Note to self - buy a small plastic camel so he can see the difference.
Toby correctly identified an ostrich in a Noah's Arc picture at church. Didn't know he knew that word.
Have heard him correctly use the word "my" the past few days. Seems like progress. (In the past he would say, "My bed," and then go to, well, MY bed, because he was just repeating what he'd heard me say.)
This morning he wanted Elmo to eat breakfast but he didn't want to. Um. No.
In OT related skills, yesterday I got him some turkey slices and left him at the table with his plate while I ran to the bathroom. When I returned like 37 seconds later, he had eaten his turkey, gone to the counter and fetched the rest of the turkey (oops, I hadn't put it away), peeled one slice off and placed it on his plate, and was trying to close the bag. Well, isn't he Mr. Independent these days?
We need him to not show off these new skills on Monday. Well, we need him to show off a little, but not close enough to age appropriate. He has his testing/evaluation with the school board because three is one month away and with three comes "graduation" from the Early Steps program. I wrote more about that awhile back.
And finally, today, we tagged along with Blue's class for a beach clean up field trip. Afterwards the kids sat in a pavillion to eat snack, and after that, they ran around in an empty field next to the pavillion. Toby ate snack with the big kids but wanted nothing to do with the running around. He continued to sit and play with a dinosaur and a Woody toy he'd brought from the car. But when the kids were signalled to line up - oh boy! He threw those toys to the ground and ran right up to join 'em.
Posted at 05:19 PM in Fragile X, Photo of the Day, Toby | Permalink | Comments (0)