Meet Desiree

I’d like to introduce you to Kaleb’s amazing mom. I had planned on only showing  a video I took of her explaining the journey leading up to Kaleb’s diagnosis, but she made the following statement and I find it to beautiful not to share so before the video, please read her beautiful, heart felt statement:

“I take time to remind myself in the midst of our chaos, the revolving door of doctors, behavioral and health problems, meltdowns and earth shattering screams… That I am LUCKY.

I have been given the exceptional privilege of knowing, loving, teaching and watching two amazing little boys grow into the awe-inspiring men they will one day become.

Autism isn’t a blessing. But it isn’t a curse either. It is a complex, confusing, frustrating, yet beautiful reminder to never take for granted those little things. To celebrate every milestone, every accomplishment, even every failure. Because success doesn’t come without sacrifice and disappointment. But those sacrifices only serve to make success that much more special.

I love my boys, with every cell in my being. They are my universe. The cause of my future grey hair, the origin of my budding laugh lines, and the greatest accomplishment I have or ever will achieve.

Today isn’t just about making the world aware of the disorder that is autism, but the beauty and wonder each of these children bring to the world.

After all, what fun would life be without the Monsters to keep things interesting?”

~ Desiree Ascevich

And now meet Desiree……

*NOTE: Desiree talks about NICHCY, also known as  National Dissemination Center for Children with Disabilities (NICHCY).it is no longer called NICHCY, due to lack of funding it is now Center for Parent Information and Resources  

 

Meet Kaleb

I’d like to introduce you to Kaleb, although he informed he that he doesn’t really like to be interviewed, he likes to do the interviewing! He did agree to sit down with me this morning but only with a list of approved questions that I could ask him.  I apparently forgot to ask what his favorite color is but don’t worry he adds it!

My trip down the rabbit hole.

“There is a place, Like no place on Earth.  A land full of

Wonder, Mystery & Danger!”  

                                                                          ~ Alice in Wonderland

This defines Autism for me and how I’ve felt every day since Kaleb’s diagnosis. Today I want to take you down that rabbit hole with me, and for the first time talk about that day and my experience.  It is still a hard day for me to think about, not because of Autism, but because I was forced to remove the blinders that I had put on and face the reality my daughter had been trying to prepare me for.

We knew almost from the beginning that Kaleb was different, he didn’t do the typical things you would expect, such as searching for your face as an infant. It wasn’t until he was about a year old that his behavior really stared to be “different”. It started to become clear that something was wrong after a particularly odd reaction to a birthday gift. Desiree (his mom) took the gift box and wrapping paper away and his world crumbled! Now I know this doesn’t make sense to you, or you’re thinking temper tantrum. This was not a temper tantrum, he wasn’t just being spoiled; this was far worse, far darker and scarier than anything I had ever seen! It didn’t make sense to me either! What I didn’t know then was that this was a meltdown. What I remember most is thinking “Desiree you need to get this under control.”

As time progressed, we all knew that something wasn’t quite on point with Kaleb, he was different and that was OK. Individuality, being different…there is nothing wrong with that! He’s a little spoiled but that’s OK too.  Time passed Desiree started mentioning Autism, Ummm OK seriously? Well the only thing I knew about Autism came from watching “The Rain-man“. I remember thinking “How you could even say that is beyond me, he is NOTHING like that!”.  I hate writing this down because it turns my stomach to think this was how I visualized Autism.

Unfortunately I’m not the only one that associated this movie with all Autistic people. I’ll be the first to admit I was naive to say the least. I just couldn’t fathom that there was seriously anything wrong and to be honest, I didn’t see what Desiree had been seeing. I don’t know if I didn’t see it because I didn’t want to, she was good at shielding me from it or he just really hadn’t had a  major meltdown in front of me. That all changed for me in one awful, horrifying, eye-opening day.

On September 21st 2010 Desiree gave birth to a beautiful baby boy, Mason.  On September 22nd 2010 she was supposed to get Kaleb’s diagnosis results. Clearly she wasn’t going to be able to make that appointment although I must mention that she tried desperately to get released in order to make Kaleb’s appointment. That wasn’t going to happen but that’s OK I certainly didn’t mind taking him! For the very first time I saw apprehension on Desiree’s face. She said “Mom you’re not prepared for this.”

Desiree had been telling me all of these awful experiences she’s been having with Kaleb. He had been getting at home occupational and speech therapy through Early Steps; they provide different therapies to children up  to age 3 with different issues. For Kaleb it was mostly speech or lack of and the therapist working with him had recommended the Easter Seals for additional therapies.

The Easter Seals were equipped to do the multiple therapies that were needed for an Autism diagnosis and all in one place, but it had been difficult and Kaleb hadn’t been doing well. She told me about his behavior; the violence, kicking, hitting, punching, biting, screaming, throwing things. She had been telling me how she had to restrain him so he wouldn’t get hurt or hurt her, how careful she had to be so that he didn’t kick her in the stomach and hurt his baby brother. *It’s important for me to mention right now, if you have not read the previous blog Just what is a Meltdown please do so. Meltdowns are no joke, can be very violent and the child has no control over his behavior when he/she reaches melt down mode.* I thought she was being a drama queen.

I didn’t heed the warning. I had been doing some research and yes, I had to admit there was a likely chance he was going to be getting a diagnosis of mild Autism. I’m pretty sure I can handle a trip to the Easter Seals and a meeting with a Dr. and being told I was right.  I had never been more wrong in my life! This day plays over and over in my head all these years later and it never gets easier.

Kaleb and I had pulled into the parking lot and we were both pretty happy. I got him out of his car seat and went inside. Once inside the first thing I noticed was that off to the left of the waiting room there was an area that had been blocked off. There were a few toys and a couple of books, but it was clearly set up for privacy. Huh…I’ve never seen anything like this before I wonder what that’s all about.  It didn’t take long for me to get the answer; before I had a chance to finish my thought, the Monster side of Autism reared its head and without warning this sweet child that I had just walked in with was nowhere to be seen.

What stood in front of me was this stranger that I didn’t know.  He was screaming and throwing himself at the wall, a toy truck that happened to be close to him missed my head my millimeters as it went whizzing by. I did NOT see this coming. Now let me tell you, a child in the middle of a meltdowns is incredibly strong, I had all I could do to hold him….all I could think is OMG he’s going to get hurt.

The Dr. had come out right about then to take me to the place they had set up especially for Kaleb. You guessed it….the corner! You have got to be kidding me! Nope, this was typical behavior for Kaleb on these visits and for his safety, and the safety of others, they didn’t want to take him into the back. I honestly didn’t know what to do, I was holding on for dear life and I don’t just mean to Kaleb; my mind had just entered an entirely different realm. How many emotions can one go through is such a short time…..plenty! I sat there holding on to this scream, kicking, out of control child while this man started talking about all the tests and therapies they had used to get to this diagnosis and I COULD NOT grasp it! I heard the words, I knew he was talking but all I could think was: I had utterly and completely let my daughter down! Desiree had been dealing with this completely on her own EVERYDAY. Everyday….she had to fight, fight the monster that took over her baby, the bureaucracy of trying to get answers that she desperately needed, the nay-sayers who couldn’t/wouldn’t believe that this could be a reality.

She did this tirelessly every day, on her own (the children’s dad was overseas) throughout her pregnancy with Mason, while I wallowed around in my own rose colored bubble. And Kaleb….My GOD this poor child!

I don’t know where he went in his head but he was not here, his eyes were wild, vacant. He wasn’t seeing or hearing me, he was trapped in this nightmare right by himself and there was not a thing I could do to help him except restrain him the best I could.

After I finally got Kaleb out to the car, meltdown still going on, I just stood there; I couldn’t buckle him all I could do was stand there and watch helplessly as he thrashed about, and as quick as it started it stopped. He was on the floor of the back seat, and looked up at me, with a confused look, wiped his eyes and said “Hi Sho-Sho”. Just like that it was over. I couldn’t breathe, I couldn’t move, my whole world had just flipped.

I heard 5 words the Dr. said that day “Moderate to Severe high-functioning Autism”. Desiree was right, I wasn’t prepared and I suspect that a lot of family members and friends of families with children that have suspected Autism wear the same blinders I had on, walk around in that same rose colored bubble. It’s scary, you mourn the loss of what was going to be, and enter a world of mystery, but let me tell you… what you gain is immeasurable. Kaleb is the sweetest, most charming little boy until he gets over-loaded, his brain short-circuits and he needs to reset. I don’t like to relive that day, but I do frequently and as hard as it was, I consider myself lucky. I got to live a short time in my daughter’s shoes, not everyone gets to do that. Not everyone gets to see the Monster first hand and so they continue to disbelieve or deny what’s going on. The hard reality is this disorder is very real and the children who have it need help. They need help in learning how to calm themselves down before the meltdowns happen and they need the understanding & unconditional love to know that when it does happen, it’s not their fault. The parent’s need help, they to need to know they have your support, understanding and unconditional love.

“There is a place, Like no place on Earth.  A land full of

Wonder, Mystery & Danger!”  

                                                                          ~ Alice in Wonderland

And I call it Autism.

 

Just what is a Meltdown anyway?

That’s a question that maybe doesn’t get asked as much as it should because to an onlooker, with no knowledge of a meltdown, it looks exactly like a temper tantrum. This is simply not true. Autistic children often have sensory issues or Sensory Processing Disorder (SPD). SPD can cause the child to have a hard time processing the different senses.

To break this down just a little for you, imagine what it would feel like if you went to a mall and the lights were too bright and hurt your eyes. Imagine there are hundreds of different sounds and you have no way of filtering what you hear, you just hear it all and none of it makes sense. Imagine the tag on your shirt is really hurting you. Imagine all of these things happening to you all at the same time.  As you try to process all of these thoughts, sounds and tactile feelings, your brain gets overwhelmed and shuts down; much like the way a computer that’s been given too much info at once gets overloaded and crashes. The concept is the same, these children can’t process all of these things, can’t sort through or make sense of it so the brain overloads/ crashes. When a computer crashes from information overload, you re-boot it and it start over. Same with a meltdown, the brain re-boots and things are fine again for a while.

A meltdown is a reaction to this over-stimulation and unlike a temper tantrum, doesn’t end with giving in to what your child wants; it goes until exhaustion sets in. Meltdowns don’t typically start because one bad thing happened; it’s a buildup of things that happened over a period of time. That time could be a week; it could be a few hours. Sometimes there will be a slight sign that a meltdown is coming, sometimes it just hits and when it hits, it’s scary, it’s a total loss of control unlike anything you can imagine until you’ve seen it. I’ve seen Kaleb meltdown plenty over the years, but no meltdown has ever been as hard to witness as the first one I saw….

And that is a story for the next time! Until then my friends stay safe and remember the next time you see that child in the grocery store throwing a fit and being a brat…. they may be autistic and can’t control what’s happening to them.  And the mortified parent? They are probably exhausted, scared and over-whelmed (even if it happens to be a tantrum and not a meltdown).

I am here for you.

Autism….it’s a very scary word, and not one you want to hear in the same sentence with your child. Yet according to the CDC, 1 out of every 68 children has been diagnosed with it. My family and I understand this fear, both of my grandsons have been diagnosed with Autism. The range of emotions you feel when hearing this diagnosis is wide, it’s numbing! With this blog I will post some stories of our family, introduce you to one of the sweetest (until he’s not) boys and his mom. I will try and help you sort through some of the information available to us via the super highway. There is a lot of information available for all of us, but it’s really important that you get the right information, that you stay informed and remember that…. If it's on the internet, it must be true!

This is Yoda, not Kermit……You cannot believe everything you read on the internet!

Wait! Are you asking why you should believe what I’m going to be putting on these blogs? You should! Here’s the answer… All of the links and information that I put on this blog will be places my daughter and I have already been. These are places we have already used to help us learn more about Autism. We’ve probably been where you may just be starting. We have gathered many useful tools over the past 5 years and I will be sharing those. I am also always doing research so I will be sharing any new finds with you as well.

Autism is scary, but it is also the beginning of a journey! Kaleb  has taken us to many wonderful places. Autistic children see things through different eyes and sometimes it’s pure magic!