Friday, December 31, 2010

One Last Post

For 2010 anyway.

What a year this has been. So much has happened...so much I dreamed of for Dakin. Visiting amazing places, acheiving amazing things. All in all, I can sum it up in a single sentence: in 2010 Dakin thrived. And I can't ask for more than that.

I hope you all have a blessed and wonderful New Year! And thank you all for your well wishes. I am now not sure if this is a cold or some kind of sinus issue, but he is doing better today, and I thank you!

Thursday, December 30, 2010

A First

I do believe we are in the throes of our very first cold. Don't ask me how it snuck in...I have no idea. You would think the entire germ universe would know about me by now and run the other way when I approach...evidently not this one. Brave, he is.

Ah well. It was bound to happen sometime. I can't keep Dakin wrapped in a bubble forever.

Anyhoo, it's just a lot of lung secretions and dribbly nose and fever for now. Any well wishes or thoughts on our behalf to whatever part of the universe you worship or don't would be appreciated...I am really hoping to keep this out of his chest.

Tuesday, December 28, 2010

Volcano Nose and Christmas Weekend

First off, we had a wonderful Christmas. Nice and quiet, just like I like it. Dakin got a lot of wonderful gifts: a pet puppy (the kind that looks like it's sleeping--it breathes even!) that Dakin named "Question Mark" and will deign to brush occasionally, some play-doh stuff, a rotating light lamp from his girlfriend in Utah, DVDs from his aunt, a mini globe, a carousel music box (he loves merry-go-rounds), beautiful pillowcases from his great-grandma, some neat projector flashlights, 2 cars and lots more. I think, though, the most exciting one is the one Nana got for him (and he doesn't even know what it is yet!!): tickets for us to see the Imagination Movers in concert, and to attend the meet-and-greet following the concert! That will be awesome...more to come on that.

Now for Volcano Nose. I don't think he's fighting off a cold because he hasn't had a fever, but boy howdy, the secretions have been non-stop. He's never been junky like this--even to his nose dripping. Of course, the nose dripping is a great source of amusement to him, and he has dubbed his snotty nose "volcano nose". He enjoys trying to make it erupt too--he laughs so hard when he blows his nose and gets snot out. Hilarious, right? Yeah.

Anyhoo, it was a wonderful weekend. We hope everyone had an equally wonderful one!!

Friday, December 24, 2010

Although It's Been Said Many Times, Many Ways...

"May Kibby" to you.

(**notes: you might be wondering if Dakin is wearing what appears to be a tank top in the dead of winter...well, he is. It's his spinal jacket undershirt and it's really warm. :) Also, Big Jet is the bad-guy character on Little Einsteins and Dakin's newest obsession, in case you were wondering.**)

Merry Christmas Eve!

Just some random Christmas pics...here is Dakin 'helping' me make marshmallows for Christmas gifts: Powdered sugar on the head and nose...
And our yearly tradition, Santaland! This year we waited way. too. long. to go, and were thusly in a car line for TWO HOURS. Fortunately, the little one was in an exceptional mood the entire time and seemed to enjoy watching all the cars. We got him a 'glowy stick' from one of the roadside vendors and he just loved that. I think the part he loved best was making it turn off. We would hand it to him and he would tap it on the back of the seat in front of him to turn it off, at which point he would laugh like it was the funniest thing ever. One time it didn't turn off quickly enough, so he kept tapping it and (in frustration) finally said, "OK! Broken!" (because he wanted it to be 'broken'. Ha!) He also learned the expression 'bull honky!' from when a car cut in front of us. He repeated that quite happily for some time thereafter.

Wednesday, December 22, 2010

First Day of Winter

I don't know if the 6 weeks of 115 degree heat we have during the summer is really worth a shorts/t-shirt first day of winter, but Dakin seems pretty happy about it. :)

Friday, December 17, 2010

Conversations with Dakin--Yogurt

Day Nurse Jane (feeding Dakin peach yogurt): Dakin, what color is this yogurt?
Dakin: Yellow.
Jane: And what flavor is it?
Dakin: Yellow.

Thursday, December 16, 2010

So My Kid is Bulletproof?

Ok, not really. But it kinda looks like it. Don't you think? See that white thing around his chest? That, my friends, is a spinal jacket. It's purpose is to help straighten out Dakin's back and in general make things easier for him.

We were fitted for it a month ago--an experience I didn't write about, maybe because the whole thing was only slightly preferable to a stint in a gulag. Nightmarish, the fitting was.

Today wasn't much better--think maybe a root canal minus the drugs. The second we parked the car Dakin was saying, "No guy up! No guy up!!" (The orthotist had to stretch him out for the fitting, suspended over two stools--oh, it was horrible). He kept with that same theme the whole time we were in there--'no guy up' and 'no owie!'. Tears and gasping later, we got the jacket on and all of a sudden he was three inches taller. Amazing.

It will take some getting used to, but he only has to wear it when he's in his stander, lying down or in his old stroller. So yay. He rode all the way home in it and was happy as a clam.

Wednesday, December 15, 2010

Bridging the Gap--Announcement!

In keeping with the spirit of awesome announcements recently, here is another!

Introducing..

Bridging the Gap!

Bridging the Gap is our new SMARD blog, created for these intents:
  • To give the SMARD community a place to communicate
  • To help raise awareness of SMARD
  • To forward SMARD research
So come check us out! We will continue to be here at The Daily Dakin as well, so you can get your (sometimes) tri-weekly Dakin fix. :)

Thursday, December 9, 2010

Too Much Cute

I have been meaning to write down some of the amazingly cute things Dakin has been doing, but I keep forgetting. No more! This is really a post more for me than anyone else, but someone might find these funny.

1. When Dakin is lying on his side, he can raise his leg in the air and leave it there pretty much indefinitely. He was playing with his markers on his side and a few minutes later I came to pick him up and there were thirteen markers up his pant leg. He just put them in the leg hole near his ankle. Silly thing.

2. With the aforementioned markers, he had them to play with before he went to sleep the other day. The room was darkened, I was on the computer and he was being quiet, so I wasn't watching him too intently. When the lights came on after his nap his entire face was green. He had managed to get one of the caps off, and, well...he looked like a black ops guy.

3. He has a few favorite phrases: "Over that way", "over here", and "broken" are among them. He tells me where things are and which way he wants to roll with 'over that way' and tells me which eye itches with 'over here'. He was drawing a truck the other day and left part of it off. I asked him where the rest of it was, and he looked at me and said, "broken."

4. He also loves to say "fix it" after telling me something is broken.

5. If something isn't in use, it's taking a nap. If I put down something he's looking at, he'll tell me it's taking a nap. He snuggled his hand up next to me the other day and it was, too, taking a nap.

6. I think it's adorable that he can tell me which Imagination Movers episode a song comes from within three seconds of the song starting.

7. He says, "goo me" after he burps.

8. He was hiding under something the other day and we asked him where he was. He said 'gone.' That's his other favorite new thing to say. If I am searching for something, it's always 'gone.'

Hm, I think that's it for now. Again, this post is more for me. But I hope you enjoyed it anyway.

Sunday, December 5, 2010

Hanta Pictures

That's what Dakin calls Santa. Hilarious, right? Like the Hanta virus? Ok, maybe it's only me who thinks that's funny. Anyhoo...here's this year's Santa picture. You will note how thrilled our little hero is by all this. I was hoping it would go like last year's pic...but you know what they say about the best laid plans of mice and moms... We did get a better one where Dakin was in his chair, but I can't get it to upload. Boo Photobucket.

See our same sweet Santa? This man is so kind and gentle with Dakin, and remembers him every year. He loves seeing him, even if the feeling is (at least this year) not mutual (boy, you should have seen the tears!!).

And again, our wonderful friend T at the mall made us an early appointment, came in early so we could do this, let us Lysol the set (and Santa himself!!), and even got Santa a new pair of gloves right out of the box just for Dakin. I know I have said this time and again, but we are unspeakably grateful for these people. Three years in a row now they have bent over backwards for Dakin. And we can never repay them for it. We are so blessed to be put in contact with people who want to help Dakin. Truly, immeasurably blessed.

Thursday, December 2, 2010

Exciting News!

Hi all! We have a seriously amazing announcement to make! My friend Lisa, who is also a SMARD mom, has been working with the Manton Center at the Children's Hospital in Boston. The Manton Center researches orphan diseases, and has agreed to actively solicit doctors to begin researching SMARD!! YAY!

The tiny but awesome SMARD community has come together to help this study happen. My plea to you, dear readers, is that if there are any other SMARD families out there, please contact me so we can get you involved in the study. The more, the better!

I personally want to thank Lisa and all her hard work. I can't believe how far we have come in the last two years since Dakin's diagnosis! When we began, there were next to no other families to commune with, little by way of information on SMARD, and no research we were aware of. Now we have (found out about, thanks, Victoria!!) genetic research going on, as well as the promise of active research, as well as a wonderful community. YAY!

Monday, November 29, 2010

Tis the Season

For Dakin to tell me 'no camera'. Oh yes he did. Here I am, innocently trying to snap some pictures while decorating the Christmas tree, and the boy is telling me no camera. Oh well.

Daddy started out like this, but ended up getting into the decorating. These are the only pictures His Majesty would allow me to take.

So there's our pretty little blue tree. Dakin's favorite part was kicking the ornaments he could reach with his little foot. Later, though, he really enjoyed sitting in front of it and looking. Yay holiday season! We have Santa pics coming soon! (Yes, we already did them...ha!)

Friday, November 26, 2010

Happy Goofy

That's Dakinese for 'Happy Thanksgiving'. Sorry to be posting late, but I just wasn't feeling it yesterday, though we are beyond grateful for everything we have been given. And I should enumerate those blessings, so here they are:

We are grateful for:
  • The people who provide the electricity to run Dakin's ventilator
  • The doctors, nurses, therapists and case managers who worked hard in school to become great, and who continually work hard to keep Dakin healthy
  • Our amazing nurses, who love Dakin like their own
  • A medicaid system that has provided for his every need
  • An insurance company that has treated us fairly and with integrity
  • Yogurt and Carnation Instant Breakfast, since that is the bulk of what he eats
  • The Imagination Movers, Mickey Mouse Clubhouse, Chuggington and Little Einsteins, for getting him through countless vest treatments and eating sessions
  • Our families, for being there for us and loving us
  • Our church family, who has loved and supported us like a real family. We truly feel they are one
  • Dear friends with whom we share the weight of a medically fragile child
  • The countless people who bend over backward for Dakin without even knowing him
  • Markers
  • Books
  • Powerchairs and suctioners
  • And most of all: a little boy who shines with life and happiness. Who believes he runs the world and lets you know. Who loves folding clothes and cleaning closets, singing songs and reading books and playing with play-doh. Who is the light of our world.

I could go on and on. We are truly, fully, and immensely blessed.

We spent the day cleaning closets and eating. (Look, that's just how I roll. I like cleaning. :) ) At dinner, Dakin said yes to being grateful for Mommy, but then said no to everything else until we got to Kamie (you may remember his church girlfriend). He's evidently grateful for her. He decided he was grateful for his nurses too. Dinner was so much fun--with him at the table, of course refusing to eat anything, but yakking up a storm and running his little hand along the table. He did manage to stick his hand in the cranberry jello...I'm grateful that he can do that too.

We hope everyone had a wonderful Thanksgiving!

Tuesday, November 23, 2010

The Presence

Jonas was laid to rest today. I have been thinking about him all day, him and his sweet family. Looking at the clock, subtracting an hour for Utah time, praying for Whit and Lindsey's peace.

We took Dakin out for our customary walk on nice days. I wasn't keeping much of a conversation up, thinking as I was.

But then it happened.

The butterfly. It flittered right across our path. Orange and perfect, at exactly 12:15 pm.

It was a message to me: a message of how Jonas' parents are being cared for by unseen hands, and how we will be cared for when our time (I hope it's a billion years from now) with Dakin comes.

That little butterfly was a tiny bit of peace for me. It reminded me of a quote I read recently:

Joy is not the absence of pain. It is the presence of God.

Rest in peace, sweet Jonas.

Friday, November 19, 2010

Jonas

Sweet Jonas passed away last night. He would have been three in less than a month. I am heartbroken for the Coleman family, and pray for their peace at this time. Jonas--you, your beautiful blue eyes and your sweet spirit will not be forgotten.

These are the lyrics to 'Butterfly' by the Imagination Movers. If you know the song, it is an upbeat tune, but the lyrics have always touched me and made me think of our SMA/SMARD kiddos. I can't listen to it without crying. I thought it might be appropriate, so here it is:

Butterfly won't you spread your wings,
Above the green grass and everything.
Got to fly.
Every color floating under the sun,
Paint a picture for everyone.
In the sky.
Butterfly won't you fly away,
A flash of color on a sunny day.
Friend of mine, won't you spread your wings and fly,
(Bye bye, butterfly, hope he's never far away.)

Butterfly floating in the breeze,
Across the flowers and over trees.
High and low.
Flitter out, putting on a show,
Fly away when I get too close.
Where'd you go?

Butterfly, time to fly away,
A flash of color on a sunny day.
Friend of mine, won't you spread your wings and fly,
(Bye bye, butterfly, hope he's never far away.)

Pretty little butterfly,
Painting pictures in the sky.
A flash of color overhead,
Purple, yellow, bronze and red.
(Bye bye butterfly)
Pretty little butterfly,
(I hope he's never far away)
Hope you're never far away,
(Hope he's never far away)
Hope to see you in the sky,
(Hope he's never far away)
Flying on a sunny day.

Butterfly.

The symbol of the butterfly is a powerful one for me, always has been. It has always struck me as a perfect symbol for a child who can't move on their own, as well as being a good description for these kids--they come, they touch our lives in so many ways, and then they've flown away.

Jonas is now free to spread his wings and fly. We will be looking for you on sunny days, and hope you're never far away.

Monday, November 15, 2010

The View From Here

...is this. Dakin 'walked' all the way to the 'big' street the other day, and at one point he told us we couldn't walk near him. So we trailed behind, enjoying him taking in his surroundings--all by himself. It was a beautiful thing.

Friday, November 12, 2010

Conversations with Dakin: Goodnight Edition

I laid Dakin down for his nap today and gave him a few toys to entertain himself with until he fell asleep. He played for a while, and then I hear this:

"Good night. Good night Mommy. Good night Daddy. Good night car. Good night Mommy. Good night car. Good night big car. Good night merry-go-round."

Cute. Cute cute cute.

Tuesday, November 9, 2010

Wordless Wednesday--Freedom


Dakin feeding himself sitting up. For the first time. :)

Saturday, November 6, 2010

Know What This Is?

See what the little boy did with it?
Yep. Ate it all. Now, considering that just a short while ago he would eat maybe 5 bites of mac and cheese...and adding in the fact that in the last two years we have had major eating issues...well...
Great day in all. Went outside in the beautiful crisp fall air and practiced with the power chair...he got all the way to the end of the street and most the way to the 'car road' (as he calls it) to watch the cars go by. He helped me with the laundry (the 'clones'. I've tried to tell him it's clothes, but he insists on saying clone. It's kind of funny).
At this time of thanksgiving, I am well aware of how much I have to be thankful for. :)

Friday, November 5, 2010

Power Chair Practice

It was a cold but beautiful day out, so I hauled Dakin and Jane outside to practice in his wheelchair. He's still not that into it, but since we live waaaaay down at the end of the street (where that white van is), you can see he's moving a lot anyway.
At one point I had to sing "Inch Dakin"--a variation on "Inchworm" that he just thinks is the funniest thing ever.

Inch Dakin, Inch Dakin. Measuring the inchy things. You and your power chair will probably go far...(though the version yesterday was 'you and your power chair aren't going very far.' It was like pulling teeth!!)
Dakin eventually gets sick of the paparazzi act and tells me 'no more'. He's still cute even when he's complaining.

Sunday, October 31, 2010

Happy 3rd Birthday!

What a weekend!! From Friday morning it was run, run run. So here's the lowdown: Friday was orthopedic clinic. All was well and Dakin's scoliosis is 'not as bad as it looks.' So yay. We hurried home and got ready for...

A birthday party!! We held it at a local Rotary Club park, which is specifically set up for handicapped people. It's perfect--the tables are all longer on the ends, the playset can accomodate a wheelchair, etc. And as I had made a pact with the weather gods to have a sunny day (sorry, East Texas, as a result of that pact, I'm afraid some ugly weather is coming our way!) it was absolutely beautiful on Saturday. We decorated pumpkins and cupcakes and attempted to break Dakin's pinata--boy, that didn't go well. When he saw everyone beating his ghost with a bat he got really upset. So we broke the candy out of the bottom and the ghost is sitting here in my living room intact.



It went great, considering this is the first birthday party we have had with actual children. We had a great group of kids--dressed adorably in their costumes, but I didn't get permission to put up their pics, so you'll just have to imagine.



Saturday evening we had the Trunk or Treat at the church. Dakin and Mommy, who tried to do a Snooki pouf. Boy, was that a lot of hairspray.

And then today, Dakin's actual birthday. We went to church, relaxed, had dinner and cake, and opened presents. Dakin's cake was supposed to be the awesome pumpkin one from last year's Disney Family Fun magazine, but I ran out of time. So there you go. He knew it was a birthday cake, though, and said so very clearly.
He made out like a bandit, as usual. He got cars and a ton of markers and coloring books, as well as some clothes and toys. In this pic he's holding the Toodles from his Mickey Mouse Clubhouse playset.

So that was our weekend. I remember shortly after Dakin was suspected of having SMARD, we found another SMARD family whose kiddo had just turned three, and I remember feeling hope that we would get to that point. And here we are.
Dakin is not just surviving. He is literally thriving. He is joyful, full of life and love and happiness and attitude and kisses and music and light. I don't know if I can properly express how proud we are of him. Dakin, we love you more than words can say. You give so much more to us every day than we could ever give to you, and we thank you for it. You are our light, our inspiration, our reason for being and our reason for joy. So we hope you had the happiest of 3rd birthdays, and look forward to a million more.
We love you.

Wednesday, October 27, 2010

Costume Time!

Dakin the Imagination Mover! And a bit of hilarity, since that's how we roll...

I (read: me and my awesome friend Liz) made this costume. What do you think?

Saturday, October 23, 2010

I Need A Permit

Does anyone know how to get a permit to have pigs on your property? It seems my son has taken on some porcine traits and I don't want to get a fine.

No, really. Dakin ate THIRTY-NINE caloric ounces today, with the final total plus water coming to, like, fifty five. Piglet! I don't know where he's putting it all. I checked to see if it was dribbling out his ear, but it's not. So I obviously need a permit if I'm going to keep pigs in the city limits.

Anyhoo...today was a great day. After he woke up from his nap, we played and snuggled on the couch for a while, and then took his new powerchair out for a spin. He really wanted to see the truck parked across the street, so he made his way over there. He did great driving--took himself all the way down to the end of the street and partway down the other. The other day he could only go a few inches! Major progress. We would have stayed out longer, but this huge storm complete with tornado warnings blew through, so we hurried home, turned on the Halloween lights and sat under the porch for a few minutes before it got going. Good stuff.

Monday, October 18, 2010

Surprise!

We came home from vent clinic/perfect pumpkin day to this:Can you see what this is? It's a RAMP.

Yep! A ramp. Which may seem like a small thing, but it's huge. See, Dakin's new power chair, which weights approximately 4,000 lbs, is--understandably--difficult to get up in the house over the threshhold. We had to put it at it's top speed and hope it didn't spin out and slam Dakin into the wall.

Well, the other day we had a carpenter at our house working on the new door we got put in. Upon seeing all the spare wood in the back yard, day nurse Jane asked if we could use some. The carpenter asked what for, and Jane showed him.

And a few days later, we have a ramp. No charge--a professional, perfect, sturdy ramp.

As I have said before, it never ceases to amaze me the lengths people will go to for Dakin. Thank you so much again, sweet carpenter! This ramp will make our lives so much easier!

Friday, October 15, 2010

Ma Mao

You know, sometimes the generosity that others have shown to Dakin just floors me. Total strangers have gone so far and above what they 'need' to do or 'should' do for him. It is constantly a source of amazement.

Take Ma Mao here (aka How Ma Mao--for those who don't speak Dakinese, that's Warehouse Mouse from Imagination Movers). I had wanted to get Dakin a Ma Mao for a while, but they're not currently being sold, and the only one I could find was 35.00 on eBay. So in steps Day Nurse Jane's sister--I won't say her name since I didn't ask her if I could, in case you're wondering...

She is a maven of all things involving sewing (she made Dakin a beautiful blanket a year or so ago--don't know why I never blogged about that!!), and so she offered to make Dakin a Ma Mao. Her granddaughter insisted on watching an episode right away so they would be sure to get him right. And here he is.

Isn't he great?! Dakin LOVES him. He is so perfect--fluffy, soft and squeezable. Thank you so so much, Jane's sister, for putting in so much time and effort to create something for our little boy to love. It really means so much to us.
(And he's going to go perfectly with Dakin's Halloween costume...but more on that later!!)

Tuesday, October 12, 2010

The Pumpkin Patch, Perfectly

So Pumpkin Patches are usually a no-go for us...for a few reasons. The hay ride, the fields, the dust, the mud, etc. The last two years we went to churches that had pumpkins strewn about--which was great, mind you--but this year beat all. By maybe a bijillion. Today while waiting to go to vent clinic, we went to the Dallas Arboretum. Amazing is an adjective I use a lot, but it's the only word that describes this place. It was picture perfect for Dakin--more pumpkins than I have ever seen in my life, all over the place.




They even had houses made of pumpkins, as you can see.

Dakin got to color a picture at the craft table, but I couldn't work up the courage to let him get his face painted.

The pathways were lined with pumpkins...
And then there was this: the picture doesn't do it justice. A beautiful pathway to the frog fountain!
This place is magical. The weather was perfect, the pumpkins vibrantly orange and green and red, and most of all, Dakin loved it. It was all the perfection of a pumpkin patch without the concerns. Perfect.
And guess what we found? Tee hee...this is where we ate lunch.

Vent clinic went fantastically, as usual. Dakin gained a TON of weight, so our strategy for upping the pressure support on his vent is obviously working. He got his flu shot, but everyone please keep your fingers crossed that he will be able to get his RSV shots this year. With the double whammy of ventilator/trach and neuromuscular disease, he might be able to get them.
What a great day.

Sunday, October 10, 2010

Dakin-isms

It's 10-10-10. I have to blog today, right? Too cool of a day to waste. So I thought I'd talk about some of my favorite Dakin-isms from this week.

Firstly, he has decided he's in love with Lucy from Peanuts. We've watched "It's the Great Pumpkin, Charlie Brown" at least 4 times this week. He just wants to see her...it's cute. Though she's horrible (and we have had that discussion with him) there's just no stopping the love for "Lulee." In this pic he has her mask on his head (it's a vinyl sticker from his book version of The Great Pumpkin).
of course, as I was trying to take this picture, he was attempting to pull the sticker off after he had placed it there so nicely...

Secondly, he's discovered he can whisper. Today in church he was being his loud self and I was trying to shoosh him, so he started whispering--very cute. That was just while the Sacrament was being passed, though. After, he went right back to being loud.

Let's see...what else? We went to a local craft fair on Thursday, and the Kiwanis had a giant (I mean massive) black Newfoundland walking around on his leash. Dakin of course fell in love with him (his name is Rico). As we stood talking to Rico's owner, Jane (our day nurse) asked the owner what kind of a dog he was. Without hesitation, Dakin piped in and said "black." Well duh, Jane.

Dakin's been learning the 'weirder' colors--lavender, sky blue, olive green. He likes to tell me what kind of color it is after naming it. Ex: He'll say 'lalaba, ty purpa.' (Lavender, type of purple). Well, the other day he had a plain purple marker in his hand and said, 'purpa. Ty purpa.' Yes Dakin. Purple is a type of purple.

We've just been up to a ton of stuff this week. Mud Hut and the library (his favorite place besides Walmart) for storytime, the park for playgroup and the craft fair. I got to take him with me to the library and Walmart again yesterday, as well as Hobby Lobby. With all this newfound freedom, I am reaaaaaaaaaaaaaaaally going to hate going on lockdown... :(

Friday, October 8, 2010

Double Fisted

Dakin had to take his olive green and green today on our walk. He clung to them tightly the whole time we were out!

Thursday, October 7, 2010

Yippee!

Oh yes. It's that time of year again. I don't know if I should be embarrassed to tell you we have actually been decorated for Halloween since Sept. 27th. It's the most wonderful time...of the year...(insert music notes).
And this picture is just because. See? Dakin's happy it's Halloween too.

Tuesday, October 5, 2010

Here Comes the Sun

Dakin was drawing on his whiteboard tonight, and all of a sudden looks at me and says, "sun." And here it is. See it? The circle with the dots around it. That's a sun. My child is amazing.

Wednesday, September 29, 2010

Naptime

What can I say? This boy loves his markers!

Sunday, September 26, 2010

Sooo...

I have reconsidered my idea about placing Dakin in public school. I am really feeling now that I need to homeschool him, at least for now.

Here in Texas, Dakin would qualify for services through the local school district here in a few weeks when he turns three. We had decided to wait on the program a year for germ concerns and were going to stick him in next year, buuuuuut...

Nope. I'm going to homeschool. And here are my reasons:

1. Germs.
2. Germs.
3. I am a product of a mother who worked in the public school system for nearly three decades, and I have worked in it myself. She saw appalling things happen to the 'special needs' kids. So did I. I won't have it. Anyone that spends any time with Dakin can see that he is clearly intelligent, but due to his physical limitations he will be considered special needs. I will NOT have him labeled, placed in box and left there (it happens!!!). Won't do it. Saw it happen, and I won't. No no no.
4. Germs.
5. Dakin, at not even three, can count (he got all the way to 29 the other day!), knows his letters, all his colors, shapes and animals. Even the weird ones. I don't want him sitting in a pre-K class wondering why he's the most advanced kid in the room. Bored kids cause trouble.
6. I just feel good about it.
7. I forgot to mention germs.

Now, don't get me wrong. I am a graduate of the public school system. I got an amazing education. If Dakin were running around like other kids, this would not even be a question. He would be in public school. But I think, considering everything, this is best for him right now. If in a few years he decides he wants to be in public school, I will put him in.

I'm actually really looking forward to it. I have a degree in education and have done a lot in curriculum planning, so I know I have my work cut out for me. Starting up next fall!! Wish me luck!

Friday, September 24, 2010

If You Give Dakin a Marker...

You end up with this:
Our OT extraordinaire came up with the idea of using his old IV pole to rig up a thingy that would enable him to lift his arms. He loves it! Unfortunately, he has decided to use this newfound ability for evil and proceeded to color all over his face today.
This pic isn't great, but it more or less shows the setup. And yes, that is a skeleton mat in the back...I'm a little early--don't judge me.

Oh, and he was such a pill as he was coloring on himself. I told him multiple times to quit and made him say sorry. One time I turned around right after he had just barely gotten done saying sorry, and he was at it again, with a big old smile on his face--as if to say, "neener neener."

Only six more weeks of the terrible twos...they're lovely and well-behaved at three, right?!

*edited to add (thanks, Dana!) that despite my griping, I am thrilled that he can color all over himself. It is truly a blessing. And in the midst of scolding him, I was trying my best not to laugh. It was a precious moment.