Guess it's about that time...

"...To update!
I know I say I'll get better about posting but I honestly have just been so busy and the free time I do have I've been trying to just enjoy with the kids.
It's summertime and I have six days out of the seven a week where I can do whatever I want with the kids during the day. Come September 23rd (or sometime after that) Kale will be starting pre-k and I just want to enjoy all my time with them as I can. Because once he starts that, he'll be going all day five days a week. And then kindergarten in two years. I'm getting tears in my eyes just thinking about it. Which is why I try not to. I know it's going to creep up before I know it and I'm going to have an extremely hard time dealing with it." --Summer 2011

Wow. That was over three years ago when I wrote that, but never published. So much has changed in three years which, well, obviously!

Kale did start pre-K ESE that September and attended for three years. It was such an incredible experience for him and for me. It was also very hard at first and those first few months I actually contemplated pulling him out, believing he just wasn't ready (it took him a while to adjust in the mornings...there were LOTS of tears, despite him really enjoying himself as the days went on). Fortunately, he had the most wonderful teacher, who we both adored (Kale still asks about her!). I was terrified of kids treating Kale badly but no one ever did, not to my knowledge anyway. In those three years his language and motor skills improved drastically, all with the help of his speech therapist, physical therapist, and his occupational therapist. Our world was full of IEP meetings, (and will continue to be) some of which I honestly didn't understand, and then some where I did and sometimes ended up in tears. I think now as he's older and facing new school related challenges that I am seeing here at home, those IEP meetings will finally feel like something I will be one hundred percent focused on and more determined to contribute to.

First day of pre-k September 2011, last day of pre-k May 2014

Three years is a lot to update on, so I will try to make it as brief as possible. I'm sure I will leave something out, but maybe if it's relevant to future posts (that I will hopefully make within the next year, ha!) I will make sure to write about it.


Kale still has Ms. Becky for his TVI, and thankfully she's with him now as he begins to navigate his way through kindergarten, literally and figuratively speaking. He started ESE kindergarten at the same school as Maile. This is the only time they will be in the same school at the same time, as Maile is now in FIFTH GRADE! I had those fears again about kids picking on Kale at a new school where nobody knows him, but Maile has talked about him to everyone all her years at the school. And last year Becky took him there for a tour. Maile was able to have him come to her classroom and introduce him to the kids, in hopes that they will look out for him too. Since school started back in August, she has walked him to class (or to his teacher if she's nearby) every morning. She hugs him in the hallways if she can, and yes, her friends look out for him too. I am so thankful for my daughter. The way she takes care of and loves her little brother, it would melt your heart.

This year is the year we are learning to read Braille. He with his fingers, and me with my eyes (and fingers sometimes, but dang! It's HARD!). Last year he mastered writing in Braille like a champ. He knows how to write his ABCs, knows correct punctuation, and can spell like no ones business. Did I mention he's only six years old? Reading Braille is a process, but I know he will get the hang of it.

Kindergarten has been a bit of a challenge, due to him not always doing what he's asked or told to do. It's something we are working on and trying to figure out if it's a communication thing, or frustration on his part. Or at least, that's how I'm seeing it right now. He still has developmental delays. He can talk to you if you ask him questions, but his responses are short and repetitive. He won't sit there and have a conversation with you like a sighted six-year-old would. A lot of the time I think he doesn't really even understand what he's saying or what is being said to him, which I think is affecting him at school. There seem to be high expectations for him at this stage, which I have mentioned to his teachers. I don't doubt Kale's capabilities, I just feel sometimes he isn't able to do all that he's expected to do or understand. It's something I've been mulling over for the last couple of weeks. I could also be way off and just thinking like a worried mother. Yesterday was one of those days where I actually had to remind myself that we have a tough road ahead. I don't live every day thinking to myself that I have a special needs child, but yesterday I did. And it was hard. And it broke my heart. I think it's okay for me to be sad every now and then, otherwise I wouldn't be human, right? I've never been the "why us?" type of person. But sometimes when we hit obstacles, or I watch him struggling I just want to hug him and keep him away from everyone and everything. And while he does not understand that his way is different or more difficult, I do and I see it, and most times I'm beaming with pride at all he's been able to accomplish. And other times I become like a child in my head screaming how unfair all of this is. Eventually I pull myself back together and keep moving which is all you can do. We are a pretty optimistic bunch in this family. But everyone is entitled to a bad day or two.

Kale's musical abilities have just grown and grown these past few years. There's a local music store he likes to go to, everyone knows who he is and they treat him well. If he wants to sit in the keyboard room for hours, Mr. Tony will let him. He's pretty impressive on the bongos as well. At home he constantly has music on. From classical, to French music, to Bob Marley, or Yo! Gabba Gabba, this kid can't get enough. He's also taken to listening to movies lately. His favorite is Shrek 2. He also likes all of the songs from Aladdin.

He loves to play outside, and he loves the beach. If you don't watch him, he will keep walking into the water! Mike put him on the paddle board once (sitting) and he loved it. There's not a whole lot we keep him from experiencing. I don't see why anyone would. This past weekend her learned about fishing poles and fishing. Last year for his birthday we rented a giant waterslide. He slid down it with Mike a few times and then...wanted to do it on his own! I was freaking out, of course, but he did it. Again and again. The fears he had prior to pre-K are long gone. He loves playgrounds, going down slides, and swinging on swings. Last year he rode rides as this little carnival that was down the road from us. He currently has this thing where he will copy everything we say, not because of echolalia, but because he thinks it's hilarious. It's so much fun to see how he has changed. Maybe not as much as other kids his age, but just enough for him.


As for the rest of us, we have had our changes and struggles as well. But nothing we can't handle. You either do or you don't. And we just do. Maile plays volleyball and LOVES. IT.  This child is obsessed, y'all. She is so much fun though. Super smart. And kind. Every one of her teachers she's had since kindergarten have told me at the parent teacher conferences that she has such a kind heart. And it's true. She is witty and wise, and understands a lot more about the world around her than most. You could say it's because of Kale, but I think she was already all of these things when she came into this world. The universe definitely worked in our favor when it comes to our little family.

That's about all I can think to write about at the moment--and I really need to do the dishes and attempt to straighten up this mess of a house. A mother's work is never done, y'know! Definitely in this house, anyway (I'm the worst when it comes to all of this domestic stuff!). I hope to update more, give more insight if needed, or add anything I can regarding raising a blind child. This life isn't easy, but what life is?

Oh! Before I forget. Happy White Cane Awareness Day! If you see someone with a cane, obviously visually impaired: MOVE OUT OF THE WAY. Seriously. You would think I wouldn't have to say that. You'd be wrong. 

Just a brief update...

Who am I kidding? So much has gone on in the past four months. All good, thankfully!

Kale turned two in September. We had a pool party with lots of food to share with family and friends. Kale absolutely loved it. Sure you can say "He's two--he won't remember. What's the point?" Even if he doesn't remember, we know he had a blast. He loves the water (just like his daddy) and was pretty much in heaven the entire time.


In October we took the kids to Disney World. It wasn't a long trip--just a long weekend, but that ended up being a good thing since on the morning of our last day there, Maile came down with an awful stomach bug that had her sick the whole trip home. Poor thing was on fire and unable to keep anything down. We ended up having to keep her home from school an extra day but it all worked out. We had a good time but I think we're going to wait on another Disney trip with them until they're both much older.

Speaking of school--Maile came home today with her report card. And once again she made the A Honor Roll! We're so proud of her. Seriously--the stuff first graders are learning now is so much more advanced than what I was learning when I was that age. It's crazy! But she never falters--she enjoys learning and just really loves school.

She's turning seven in less than two months. She's been planning her next birthday party since December. Thankfully this time around it's just a small little slumber party. I don't think I went to my first sleepover until I was in third grade! How does this happen? Where does the time go? Is there any way for me to stop this? She lost her first two teeth within a week of each other and is about to lose her third. Did I mention that she's only thirteen inches shorter than me? I'm so not ready for her to not be a little girl anymore.

As for Kale, he has come a long way in the past six months. As I had mentioned in previous posts, he finally started to walk on his own over the summer which was such a big milestone. We're hoping that towards the end of the school year (if not sooner) he'll be working with an O&M teacher (orientation and mobility specialist) to start learning how to use a cane or just get used to one. He's also finally taken to eating pretty much anything without choking--thanks to his amazing OT. She had started coming over to the house in addition to us going to see her at PNC. During her home visits, she comes during lunch time to help figure out ways for Kale to eat. She's been such a miracle worker having him accept new textures, to holding a spoon or fork by himself and as of last week he finally started to drink from a straw unassisted!  Huge step! He still has some things to work on but he really has come so far.

He still has his random freak outs during bath time but he's gotten much better about allowing me to cut his hair while he's awake. I've learned that as long as there are cookies around, I can pretty much get my way with him. Just like his mama!

It looks like he'll be starting preschool in the fall. Not sure if we have to wait until September (when he turns 3), I'll know more towards the end of the year. But basically there are two elementary schools nearby that have preschool programs for kids with special needs and one of them has had a blind student before. His TVI (teacher of visually impaired) recommends he go to that one but it really is up to me. She and other teachers (and other specialists if he still needs them) will be there to help him. Hmmm. Will someone be here to help me? I don't think I'm ready for him to be off and in the care of others. I had a hard time with Maile going off to VPK when she was four. I eventually got over it but I'm thinking I'm going to have a harder time with Kale being gone. I know it's for the best and he'll be learning so much more than I can teach him here. But still...

As for what I'll be doing to use up all that extra time--I have an idea but I won't go into that until it's set in stone.

 As for the Mike and me, we're good. Just working and trying to keep our heads straight.

We had a great holiday season with our friends and family. We aren't too big on taking the kids to see Santa because 1) Maile has been kind of creeped out by him the past couple of years and 2) Kale probably would be creeped out by him. So instead I took Maile downtown one night to some Christmas in Seville thing they tried out this year and we had a lot of fun. And she actually sat with Santa--all on her own, no problem!

Christmas really was great. Kale got a miniature piano (he's still blowing us away on a daily basis with the things he can play) and Maile got pretty much everything she asked for.

I remember posting at the beginning of 2010 that the year wasn't looking too good which was disappointing after such a rough 2009. Well, somehow it did get better. And at the end of it, Mike and I were able to look at each other and say that 2010 was definitely a lot better than 2009. (Good god. Any year is better than that one!) We entered into 2011 with an even more positive outlook and while nothing spectacular has happened just yet, nothing horrible has either (knock on wood). It was a relief coming into this new year without worrying about future surgeries for Kale. That's all we dealt with it seemed for the first year and a half of his life, so it's nice to finally be without any of that emotional stress.

We're finally just enjoying being a happy little family of four and that's all we ever really wanted.

Two and a half months since my last post. Man. I've been slacking yet again.

But I have good reasons! Maile started first grade, Kale started walking. I started working again (just a part-time gig slinging coffee). Mike is still working hard like he always does.

We've all been pretty busy. The summer flew by and I feel kind of crappy that we didn't get to do all the things I wanted us to do. But it was so freakin' hot! Hell, it still is.

Next week is Kale's 2nd birthday. Kind of a big deal to us all since last year he couldn't even enjoy his cake for his first birthday. This year there should be no problems. I've been trying to get in some practice with feeding him cupcakes (Okay, fine. We share.) He's not really into getting his hands sticky and dirty, but he can eat them no problem which is more than he could do last year.

He did start walking a couple of months ago and now he's all over the house. I've gotten better at letting him explore on his own without freaking out every second. As long as I have all the doors closed, I'll let him roam around while I try to get some things done around the house. It is so cool to watch him, though. He knows where everything is, it's like he has this map in his head. He just puts his arms and hands out for the wall/chair/couch/cabinet  that he knows is right there. Sure, he's off a little bit and bumps his head on occasion, but he's doing great.

His TVI (teacher of visual impairments), Ms. Becky, started back visiting about a week or so ago. She was off for the summer so she came back to him walking and talking more and was so excited to see him. He even gave her (and me) a little treat by playing recognizable songs on the giant keyboard we keep on the floor. He played "Joyful, Joyful" and Ms. Becky almost had a heart attack. He can also play "Twinkle, Twinkle" and "Mary Had a Little Lamb". I'm not joking. The boy isn't yet two and is already playing things by ear. My little musical genius.

Maile is enjoying first grade. I am finally understanding why my parents (or any parent) would get onto me about the importance of good grades. As a kid/teenager I guess I just didn't get it. But here I am, every day studying with her and trying to make it fun and enjoyable, wanting her to get A's but letting her know that I will be happy with whatever grades she comes home with as long as she tries her best. (But I still want her to have all A's, damnit!) She's coming home with vocabulary words I don't think I learned until third or fourth grade. And algebra! Good lord. It's just crazy to me how much more is expected of a first grader than when I was a kid. Now that I'm working three or four nights a week  and I'm not here to help her all the time, I can't help but feel guilty. So far, she's doing great. I know she's a smart kid, I guess I'm just terrified of failing her.

We have a trip planned next month to Disney World. Not a long trip, just a long weekend but we're looking forward to it. It's been three years since we took Maile and I think she'll enjoy it a lot more this time around. And it will be interesting to see how Kale does. I'm hoping it won't be too much for him. Crossing fingers!

I know there are probably some things I'm leaving out, but I'm tired and have a long day ahead tomorrow. Kale has a first appointment with a local ophthalmologist--he has to have one in the state of Florida in order to continue receiving services for the school district and things like that. In the past there's only been one pediatric ophthalmologist and we were not fans of his (he saw Kale in the NICU after he was born), but now there is another one who a friend referred us to. So hopefully it'll go well.
  

Aiight. I'm out.

Until next time.

Ack!

It's been a couple of months since my last post, huh?

Well, we decided to stop any future surgery for Kale. And so far things have been great with him! He's doing so well with everything. He even started walking a little bit last week--which is just such a big deal. His second birthday is coming up in September and I was hoping he'd be walking by then. Every day he gets braver and takes just a few more steps. He's getting better and better with eating, too. Still working on the bottle issue, though. It'll happen eventually.

Maile is out of school for the summer which means I will be the mother of a FIRST GRADER come August. Holy crap! Last year I was freaking out about her going into kindergarten. Now I gotta get a handle on her being in an actual numeric grade level? Yaaaaay...

Not a whole lot going on over here. Just trying to stay cool in this insane heat. Since the beach is pretty out of the question due to massive amounts of oil in the water and on the sand, we've been hanging out in our sad little inflatable pool in the backyard and at a friend's house. Yay for friends with pools! And double yay for those who invite us over! Kale loooooves the pool, by the way. He is such a water baby, I love it!

Speaking of our oily beaches, check this post out that I wrote--was featured on Lemondrop.com today.

Aiight. I'm out for now until I have more time and more stuff to post about.

A difficult decision

Since Kale's appointment last week, Mike and I have been going over and over in our heads what to do next in terms of Kale and future surgery. His doc said what we thought she would--to start all over again with expanders. She also told us once again to do what we feel is best, even if that means to get a second opinion. Granted, finding one from someone who has experience with Kale's condition is going to be damn near impossible.

We know there is one doctor in Texas who has treated someone with cryptophthalmos (she actually has something called Fraser Syndrome) but we're thinking that no matter who we go to, or who we ask the recommendation will be the same: surgery and expanders.

But then I can't help but think of other parents stories of their kids (with microphthalmia and anophthalmia) and how they've managed to do without any type of prosthetics and they have no deformities. No caved in heads. Nothing is wrong with them at all. Which goes against everything doctors warn us about.

So.

I think we're leaning towards no more surgeries---unless we start to notice any type of irregularities in Kale's growth in his facial area. Then we'll get back in touch with his doctor and go from there. We've been talking and talking about it and while we haven't made the definite decision, it does seem like that's where we're going. Otherwise, we're just going back to where we started from a year ago, and it just doesn't seem likely that anything is going to change. While we're being told it's a medical necessity, we can't help but think/feel it's not. It's all just for him to be able to wear prosthetics at some point. But I have no doubt that ten or fifteen years from now, if Kale tells us he want to go the route of wearing conformers or things of that nature, we will find someone who will make it happen for him. But for now, I think we're just going to try and let him enjoy growing into a toddler. Learning how to walk. Learning how to finally feed himself. Learning how to just be.

He's so handsome and such a happy boy (most of the time, anyway)--and it's obvious how much more comfortable he's been this last month or so without anything in his eyes. There's no redness, no irritation, no crustiness that just won't go away. And his eyelashes are finally growing back!

I just hope whatever decision we make, it's the right one and that we're not taking a huge risk...

Busy Bees

We've been pretty busy lately. From appointments, birthday parties, festivals, to just random spring-like days--we've been keeping ourselves occupied.

Kale started visiting his OT (occupational therapist) about a month or so ago. So far, things are going well. It was taking him a good ten minutes or so to warm up to her, but now it's taking less and less time so that's good. He gets thirty minutes one day a week with her which doesn't seem like much but the time is utilized well. We go to her office for the sessions which is cool. She has this swing she sits on with Kale in her lap--it really calms him down when he's having one of his "Get me outta here" moments. She tries to get him to do other things while in the swing--in the pic below he's playing a little piano with self-made textured keys (we have one at home, too).

She is trying to get him used to touching different textures. The main focus right now is getting him to feed himself with his hands and with a spoon. Last week, out of nowhere he started picking up his little snack foods and eating them. I honestly don't know if I can credit his OT for that because we really haven't done much yet with her but she was very, very happy when I told her about it yesterday.

Twice a week, his TVI comes over. She sings and plays with him and talks with me about all kinds of interesting things related to the blind and visually impaired.

A few days ago she had us go up to the middle school nearby where she has a visually impaired student, Deesha, who wanted to give something to Kale. Becky (his TVI) and Deesha had made Kale some little texture shaped books. So we spent about two hours over there and Kale had a great time! So did Deesha who is such a smart young lady--with some amazing manners! She could teach us all a few things!

It really was great meeting another child who is visually impaired and getting to watch her use her cane walking through the school hallways. It definitely makes me feel a bit more at ease when I think about Kale's future in public school.

Spring is somewhat in the air. I'd say at least one or two days a week we can get around without wearing a long-sleeved shirt.

We did get to go to an awesome Yo! Gabba Gabba birthday party for a friend's daughter. My friend did it all--and did such a kick-butt job. Here's a pick of Maile posing with Plex--which my friend made herself! How talented, huh?

All of the other Gabba characters were there--it really was such a cool party to attend (thanks, Diedra!).

Another cool thing we did this year, which I'm hoping is turning into an annual thing, was go to the Renaissance Fair. We went last year and had a blast. So we went again this year--and had a good time once again! I think my favorite part is watching Maile get her face painted and seeing the end result. Definitely better than anything I've ever done!

Oh! I almost forgot! Maile got her ears pierced! She did it on the 12th--the day before her birthday party. She had been going back and forth on whether she wanted to do it. It's been something I have always told her could be her decision. We have gone to the mall a few times after her telling me she wanted to do it, but then she'd get scared and decide not to do it. Which is fine--I didn't mind. But she finally did it! Here she is showing them off later that evening.

Yes, there were tears--but there was also a lollipop from the girls who did it (and she knew this from watching another little girl get her ears done before her) so I think that's what made her finally decide to do it. I was and always am very proud of her!

And finally--Maile is going back and forth on something else. Tennis. My 14 y.o. niece (who happens to have the same birthday as Maile) just started tennis so Maile wanted to, too. Until she tried it the other day. And decided she doesn't like to get sweaty. I tried to explain to her that she gets sweaty when she plays outside or goes to the park or the beach....I think she was just super grumpy and tired because she had just finished running in PE before getting out of school. So we'll see. Luckily, the sessions are pay as you go! Here are some pics my mother-in-law took (I was home with Kale).

Okay. Well, that should wrap things up for another week or so. We have Maile's spring break next week and Mike is off so we're going to try and get some quality family time in. I'm thinking the zoo, for sure. I wonder how Kale will do with that? He does have an appointment next week at UAB. Not really too sure what is going to happen with that. I'm gonna just avoid thinking about it for now.

Later, all!

Baby gurrl

Maile turned six on the 16th!!! My itty bitty is getting to be, well...not so itty bitty. Make it stop!!!


Her birthday party was a success, despite the fact that I had a mini freakout about an hour before it started. Mike ended up having to work that day so I had my hands full. My mother-in-law came over three hours early to help out but Kale was so fussy from teething, most of the time we took turns taking care of him! But it turned out great and Maile says that it was the best birthday ever!

I had gone to Target and raided their dollar bins and bought all the Easter hats, purses and gloves I could to give to the girls. I stuffed the purses with candy jewelery and other sugary treats. I made tiny cucumber sandwiches, peanut butter and marshmallow sandwiches and served pink lemonade and sherbert punch. Outside we had set up tables for the girls to sit and eat at, we had a friends jumpy house set up and we also put up a long piece of that brown painter's paper along the fence for the girls to draw and write on.









We played a couple of games, too. I had the girls race with books on their head and I also had them play a game I saw once at a baby shower that involved a blindfold, lots of cotton balls and a large spoon. They loved it! The same friend who let us borrow the bounce house let us borrow her two tubs of dress-up clothes and I put those together with what Maile already had and the girls were dressed up the entire time in one outfit or another.





My mom had bought a large bead kit and was helping the girls outside make necklaces and bracelets.





Can't forget a picture of the cake--from The Cake Shop. They did an awesome job--Maile picked it out and it was delicious.

I did feel a bit bad for making it a girls only type of party, but you could totally tell the difference from her party this year and the ones before. I did keep Maile's bedroom off limits (and locked, haha) but the girls were great! I know as she gets older she is going to be more and more picky about who she wants to invite so I guess I just wanted to control as much as I could with this party. Totally guilty, but it did turn out great and she never complained about a thing once.