Wednesday, October 15, 2014

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. 

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