Wednesday, March 2, 2016

Reality hurts....I mean...hits

Non-eventful day here at the Tomecko house. The typical try to wake the kids up, get them to school, spend quality time with hubby (aka breakfast at out favorite local restaurant), my one hour of "me" time that I've been doing for over 4 months (but used to do it daily throughout my 20's-30's) 90 minute workout...woot! I am usually starting my cupcakes for the church's fish fry today, but today I was a little lazy and chose to do it all tomorrow. I have some great cupcakes that Ive been making for the last 3 weeks:
 Dark chocolate raspberry truffle:
 Boston Cream:
 Cleveland Cassata:
 Red Velvet:
 Chocolate Chip Cookie Dough:
so...yeah...I have my work cut out for me.
I even made a bunch of cupcakes for the Playhouse Theater and Il Volo, when they came to town.
*side note: The girls and I finally got a night out. I have never had a night with just my daughters (plus my niece, whom I consider an adopted daughter)...ever! So this was a very special night. We all got dressed up and enjoyed great"popera" music, while my hubby watched Kenny!

 We cleaned up pretty well...if I don't say so myself.
...So anyhow, getting back to today...I went to Kenny's ETR meeting. For those of you who don't know what this is, its an Evaluation Team Report meeting. Basically, its where all the specialists that work with Kenny get together...before his IEP meeting (in a few weeks), to go over their findings and evaluations/testing that they have done on Kenny while he's in school.
As I write this...I am enjoying a glass of red wine. Oh...forget it. I just had to take a few minutes from writing to unglue Kenny's fingers from one of the girls nail glue that Kenny got into. See...its a never ending watchful eye!
Back to Kenny's evaluation...and to why I have this nice half full glass of wine...
So the evaluation went well. We were all on the same page in terms of what he is learning and will be learning. What got me and always gets me...year after what he is doing and at what developmental stage/age he is doing them at.
Here, I have this almost 9 year old little boy who has come such a long, long way from this:
  He is on the moderate to severe end of hearing, what I thought was more of a muted, underwater sound in which he hears, is actually more of just a few consonant and vowel sounds here and there. I honestly had no idea that this is how he hears without the aids. So all those months of him not wearing his aids because he broke them...he couldn't understand what we were saying...and lost a lot of learning in school because of it.
On one hand, he knows over 20 signs, knows some of his colors, can count to sequence...most of the time. He can walk up stairs unassisted, and much more.
I also heard that everybody in the city knows Kenny. He is very popular at the surrounding schools! 
I was hearing all the great things Kenny was accomplishing while in school.
He really has a great team working with him. 
In my eyes, he really is a miracle from Heaven.
I am so honored and blessed to be this little boys mom.

On the other hand, I have the hard realization that the doctors were kinda right when they told me that developmentally, he'd be half his age...all his life.
Yeah...this is the part that is hard to swallow for me. I've been on the brink of tears since the meeting. At the meeting, I was supermom...I got into the car and it hit me like a ton of bricks.
Don't get me wrong, I really took in everything great he was accomplishing in my heart.
He is really striving to be the best he can be. He really wants to learn and is working so very hard. Just, part of me thought that I'd prove all those doctors wrong. They cant tell me that my little boy, who fought to live, is going to be learning at such a slow pace with such a low dare they! I still want to prove them wrong...but today, I am feeling defeated (just for the time being...see...still a little bit of left in me).
The tests and evaluations are showing that Kenny is between the ages 22 month-4 years developmentally in several different areas. His ataxia is showing more as he is getting older as well. He gets very shaky when he is trying to do something. He still cant write, he is using all sorts of sounds, signs, gestures and pictures to communicate...which is sometimes still very hard to understand. Its a lot like charades on an hourly basis here! hahaha. 
He still switches between his left and right hands as his primary hand to use (now...I am very insistent that he is actually a lefty...but they're insisting that they want him to use his right, that's what they're making him use at school.
I am just letting him use whichever hand feels the most comfortable to him.
His attention span is very, very short, so the PT at school wanted to dismiss him until he can concentrate more on working with him. Which I can totally understand. He is wasting her time and is cutting into his learning time when at PT and doing nothing.

The evaluations, as a whole really explains why we feel that he is going through the "terrible twos" here at home. He has been putting holes in the walls by slamming the doors back against the walls. Getting into everything...I.mean....EVERYTHING. I cant take my eyes off of him even for a moment because he's either cutting something important up, scribbling on it furniture, walls or important papers. Emptying Rubbermaid bins that hold either shoes or lets say...cherished items from my past that hold lots of meaning and memories...all over the back room floor so he can put all his stuffed animals in and carry them downstairs to set up...
...or even deciding he's going to make himself...
Its a never ending worrisome job Tony and I have. The meltdowns that he has when he comes home from school or gets ready for school...has made my blood pressure go into the high range...and it has never been high. It honestly is the hardest thing, next to burying Nick, that we have to do. 
Like I said earlier, I feel so, so...sooooo blessed to have him in our lives, but our lives and the rest of our kids lives have been on high alert for so long, that I don't think we know how to just breathe and relax. We are a big, loud and very stressed out family. LOL.

In closing, we are very fortunate that (knocking on hard as I can) he has not been sick this winter...which is amazing! At least that little bit of stress has been erased for a bit! We will continue to work with him to read, write, learn and behave as much as a typical child as possible. It is getting harder as he is getting older because he doesn't know personal space and love to hug everyone he meets. He clearly is starting to show the developmental delay...and to me, its sad because I don't want people (strangers and peers) to look at him differently...but I see it happening more and he gets older and older. I know how cruel life can be and its eating me up that his pure heart might get hurt because of being made fun of for being younger (developmentally) in an older body.

I sometimes used to question my parenting abilities...but now...I am always question my parenting abilities with raising a special needs child, along with 6 others (from an 18 yr. old down to 7)
I...we love them all so much and want the best for them. We've never really gone on a family vacation together...and because of that, I am sad...and wish I could turn back time. With so much that has happened with Kenny, it has been pretty much impossible to even think about going out to eat at a restaurant...let alone a family vacation for a few days to a week. I know the kids resent us for add another stress-er to the mix! haahaa!
I want my kids to become adults with great big hearts and love to share. With a faith that wont shatter and the ability to live a well balanced, financially stable life from honest hard work. Not to mention having a very close family at hand...immediate and is so important to us that our kids are close with cousins and aunts and uncles...and never lose that bond!

My husband and I are tired...very, very tired from this journey that we are facing alone, but will never give up on any of our kids.

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