Friday, April 6, 2018

The kids and Kenny playing around


I wanted to share this video that Sydnie and Kenny made. He is such a goofy kid! I love how he is so interactive with the camera here! He has so much to say...if only we can understand everything...I can only imagine the funny stuff that would come out of his mouth! Anyhow...enjoy!

Friday, March 16, 2018

Kenny's Make A Wish (part 1)

I have finally gotten my act together and decided to blog about Kenny's Make A Wish trip to Disney.
It was a couple years in the making...going back and forth as to what his wish should be. We had to be his voice, since he cant tell us himself. We were going back and forth between a celeb wish to meet Barry Gibb. I know that sounds weird, but ever since Kenny was a baby, he calmed right down and loved listening to and watching Andy Gibb and the Bee Gees on You Tube.
After we started the ball rolling with this wish, we felt that it wouldn't be THE wish of all wishes that he'd want...so we changed it to going to Disney.
BEST.DECISION.EVER!
It was truly magical!
We really did pick the right wish for him (yay)!
Two weeks before the trip, his granters had a reveal party at our house with our family and friends.

 
 
 
 
 
 
 
 
 
 
 
 We were all nervous about the plane trip, since most of us either has never flown, or haven't flown in over 20 years...but, nothing that a little Dramamine couldn't fix!
The day finally arrived.
We packed everything...and then some. Making sure we had all of his meds and supplies...oh...and his Baby Kenny...of course! Then the time came when the limo bus pulled in...
 The driver was so nice to all of us...it was a very fun and exciting ride to the airport.
Got to the airport and before we boarded, we were given the royal treatment. Got first to board...and Kenny even got to meet the pilot and crew...who gave him a present.
 
 
 
 and we were off...
We had a layover in Chicago...and then we made to Orlando around 9 at night. It was a very tiring yet excitingly long trip...but we finally made it...and OH SO EXCITED!
When we got to Orlando, we were met by a greeter from Give Kids The World...his name was Jack (its funny, because he reminded us all of my dad...who goes by Jack) 
  
It was dark by the time we got to the GKTW, so the next morning, we were so excited to see what our villa looked like. Oh...MAW even provided a 15 passenger van for our family!
 
 
 
 
 
 
 
 
We all fell in love with the double villa they provided for our big family! Because it was late at night when we arrived, they had food waiting for our family! It was a perfect start to a perfect wish trip!

Part 2:  To Be Continued...


Educational vs Social Crossroads



With Fifth grade quickly approaching for Kenny and Gina, so does moving on to Middle School. Big changes in store for them...especially Kenny who had the same teacher since 1st grade. I am going to panic mode over this...for fear of the unknown...yet again (cue in anxiety driven thoughts of going into kindergarten).
My husband and I went to Kenny's IEP meeting...where we were told that one middle school, that was not his "home" school was better suited for him...so therefore, that's where they are sending him. I on the other hand (being a stubborn half Italian/half Polish chick), fought them on this. We ended up coming to a happy medium, where we decided to look at both his "home" middle school (which is literally right in our backyard) and the other middle school 7 minutes away. 
Right now, he is in a classroom that has only special needs kids...also known as a self-contained classroom. The school that is our "home" school, will not have this because they told us that there is only 2 kids from 4th grade, with special needs, going onto 5th at our home middle school. Not to mention, the school system is totally crumbing apart from a financial mismanagement. This means, he will be following an inclusion style class setting...where he will be with typical kids in regular class settings, but following his IEP. Which is not bad at all. It will challenge him to fit in with the typical kids...sit at a desk, learn to follow what the others do...just be part of their every day classes, yet...he will have a few classes with his special ed peers, like a homeroom based setting.

OR...

If we send him to this other school (minutes away from where we used to live...yeah...we could have saved $$ and just stayed put without moving for all of this), where his whole school day, minus a few classes (I think art and lunch) will be self contained, and he wont be integrated with any typical kids, but will have all the means to learn at his pace...a large room to learn to make his bed, shop...just the basics everyone takes for granted. Its set up more like how his class is set up currently, and how his classes have been set up since starting preschool...a room with different stations, so he'd be used to it.

Now...knowing what grade level he is working at...it is at a Kindergarten/early 1st grade level, what do we do? Here are a few different videos of him in class recently:
 


Do we separate him from his sister and friends to send him to a school that will give him individualized attention...and pray that he learns something? Or, do we send him to a school that he will be with typical peers and sister...in their classroom setting where he will be challenged, but following his IEP...yet, being in a math/English and science/social studies...when he is only at a kindergarten level. I talked to Gina about all of this and asked what she thought, since she is the closest thing to Kenny...and she got all upset that Kenny wont be with her if he went to a different school. Like...teary eyed upset. These two are best buddies...so now I'm even more confused and upset.

I want the best for him...both educational AND social. 
How can I choose between the two?
What is the right answer?
This is the crossroads that we're faced with.

If you read what type of child is assigned to a self-contained classroom setting, my heart breaks all over again. Seriously...First I get told by the child psychologist that they feel Kenny does NOT have autism at all...in any way, shape or form...and that he has MILD/MOD. intellectual disabilities...and yet, he clearly is severe, since he is at such a basic learning instruction.
I understand my child clearly isn't typical. I guess, being around him so much...maybe I'm used to it. Maybe part of me wants to believe he CAN fit in and "catch up".  
I then question my roll as a mom. Am I doing enough for him? Am I forgetting to do or say something pertaining to his schooling? Should I have pushed for a more educational IEP...where he is closer to his grade level? I am feeling like a failure at this point. I have no right being a mom of a special needs child...I have no idea what I am doing!!! I keep going back to his MRI and how I went for a second opinion at the Cleveland Clinic...where they told me that he'd only be learning at a level half his age. I vowed to them that they were wrong...and now...they are very right. Anyone that knows me knows that I am a control freak...to some extend...and this...I cant fix. I cant control. Heck, I cant even understand, and I am his mom!

Why cant all schools be set up the same for special needs kids?! I am sick of having to choose...I am sick of Kenny being shunned to "a school that's more suitable for him". If we want our kids to be treated with respect and not be discriminated against and segregated, we need to change the way churches and schools teach and don't teach...and how they fluff the "slow"  and "disruptive" kids off to their own little section of a different school, church...etc. 
The school system and Catholic churches are doing a bang up job. Making you think that they are helping, when in fact, they are telling us parents that our children wont learn and don't matter in the grand scheme of life!

 The special needs elementary school kids that are in the our cluster of schools, are being robbed of moving on with their classmates to their home based schools, because they are "better equipped" to handle them at another, bigger school! In other words, since the school district is financially hurting, lets take away from those that wont mind...they are dummies anyhow...they are slow and don't have feelings let alone voices of their own. Yeah...I am beyond mad. My son has every right to move on with his sister and friends...and still get the help he needs. Yet, I am being torn apart by what he needs educationally, as to what his social and emotional needs are. This is the same issues we had with our church. I am at a loss...and it seems to just keep eating away at my soul a little more every step of the way. Any input would be welcomed at this point...because this momma bear is really struggling.

Monday, March 5, 2018

A recap of this summer.

As this Summer winds down, there is so much that I have to catch up on here on this little ol' blog of mine. We had a prom for our second oldest daughter, Taylor...
Of course, her graduation...which was one for the storybooks...
The grad party...
Challenger Baseball for Kenny...
Kenny spent the weekdays this summer at Camp Cheerful's day camp...it was the best thing we could have done for him. He was busy every day, making friends and just having a great summer!
Gardening...or shall I say,transforming our backyard into our own retreat (special shout out to Lowe's Home Improvement stores, whom we purchased just about everything...from mulch, plants and fencing to the wood and pergolas and pillows for the seating)...

To a lot of cupcake orders...birthday parties, grad parties, baby showers and weddings...
...And here we are today, starting back to school! How this summer has passed by in a blink of an eye!