Meltdowns suck.

Seriously. I know there is probably a better way to express that sentiment, but it is what it is. 

Autsim and I can be civil most of the time, but on the occasion that Lucas begins crying uncontrollably for no apparent reason it’s all I can do to keep my own tears at bay.  We’re lucky, they don’t happen often. When they do, they come on without warning. There is nothing I can do to make it better, in fact the more I try the worse it gets. He’s pretty good at calming himself. He stims and paces and skips. Finally, the tears end and he is calm and able to play.

Thank you for letting me work through this one in my own way. It didn’t last long and he seems okay now.

Beginning a new chapter.

“This isn’t good or bad. It’s just the way of things. Nothing stays the same.”
Real Live Preacher, RealLivePreacher.com Weblog, January 03, 2004

I’ve never been good at handling change. I like comfort and predictability and when something disrupts that I have a hard time adjusting.

When I brought Lucas home from the hospital I remember feeling like I would never get used to my new normal but of course I did. After a while everything became routine and it felt right, but that wouldn’t be the last time I felt like everything was changing too fast.

I found out that Lucas will be moving to Kindergarten at the start of the summer session. I knew he was doing well in school, he knows the alphabet, colors, shapes, some numbers, and he’s been recognizing 3 and 5 letter words. I felt like he was getting ready to move one, but I prepared myself to hear that he needed another year of preschool. I couldn’t help but tear up a little and of course feel a little apprehensive.

I know it will be okay. He’s ready, and holding him back does him no favors. He’ll start the summer session on June 18 as a Kindergarten man and he’ll do great, it just may take me until September to adjust to the idea.

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Happy Cinco de Mayo!

I made tacos in celebration…sort of. Actually I was at the store this morning and I thought “Mmm, tacos!” so I bought the stuff. My boys loooove tacos, they ate 2 each.

Today is also Kentucky Derby day. I love horse racing and may even have a couple of future jockeys on my hands.

Stepping out of my comfort zone.

I am not a public speaker, anyone who knows me knows this is true. So when I was asked before spring break to sit on a panel of parents from the Rich Center at a conference on autism my knee-jerk reaction was a resounding “NO”! There is no way I can stand up in front of 220 medical and pharmacology students and talk.

After my initial, hasty, no I became intrigued at the thought of telling our story. I spoke with one of the other parents and she explained it a bit to me. I began to think that maybe it was something I could do. The more I thought about it, the more I liked the idea. It definitely had it’s selling points. For starters, I wouldn’t be alone. Having other parents there would make it easier. They also wanted our children there. I have to admit that I have used Lucas in the past to deflect attention from me. He’s so cute and silly that no one pays much attention to me when he’s around. This is a good thing! Okay, this is something I can do. I decided to say yes.

So last Friday, April 20 I picked Lucas up from school at 1 pm and we drove to Northeast Ohio Medical University in Rootstown, Ohio on an “adventure”.

When we got there we had to go through security and check in. They gave us name tags. I made sure to stick Lucas’ to his back so he couldn’t destroy it. (As soon as we sat down he started picking at mine so I knew I made the right decision there!)

We were led into a large lecture hall with rows of long tables. We went down front to a table with microphones. We had a few minutes to get organized before we began. I brought the iPad, portable DVD player, and a small bead maze as well as a thermos of water and a plethora of fruit snacks. Everything I could possibly need to keep Lucas occupied for an hour.

We began by telling our stories. They wanted us to explain signs and symptoms, how the diagnosis affected us as parents, the impact it has on our families, and the treatments and therapies we are seeking. Once I began speaking my nerves vanished. This is the easy part, I have no problem talking about my kids. The moderator also asked questions about what we hope for from the medical community and if we tried any experimental treatments or therapies.

After we finished we took questions from the audience. The one that stands out in my mind was asked by a young man. He wanted to know about our children’s sibling relationships. I love to answer this question because even though Liam irritates Lucas most of the time I think he really likes him. He initiates play and will give him hugs and kisses when prompted.

The day was full of surprises. I learned that I could talk in front of 220 people without throwing up and I also learned that Lucas can sit for 45 minutes without imploding. I am so proud of how well he did and what a good boy he was.

I really hope to get the opportunity to do this again.

I’m a slacker.

Our wonderful spring break made me lazy. I’ve been neglecting my writing, but I promise to have something new soon.

Why are people mean to children?

Autism cannot be cured with a “swift kick in the ass.”

A very good friend was out with her little boy today, and while waiting in line for lunch he began having a small issue. I imagine it was crowded, loud, the lights were harsh and the smells overpowering It was a mall food court after all…

This little boy was in no way out of control. He wasn’t having a meltdown or “freaking out” as I have heard it called. I can picture him covering his ears, and bouncing in place because we have been there. I can imagine the sounds he was making because I hear them regularly. They may be unusual to someone who doesn’t get it but they were nothing that warranted this mans angry tirade. There was nothing to justify this man laying his hands on a little boy or saying the hateful things he said to the boy’s mother.

I have come to the conclusion that some people revel in their ignorance. They eat, breath, sleep, and live it. They don’t care that their attitude only compounds the stress someone may be feeling. I’m not just talking about parents of SN kids. My friend said that this man was being just as rude to the person preparing his food. (Yeah, good luck with that!) I used to work in retail and was astounded by the attitudes of some.

I just read “Reasons you should think twice before messing with special needs moms and dads” on Always Unique Totally Intelligent Sometimes Mysterious’ Facebook page.

REASONS YOU SHOULD THINK TWICE BEFORE MESSING WITH SPECIAL NEEDS MOMS and DADS:

1. Some of us have given up on social skills and don’t care what we say or do.

2. We’re not afraid to have A serious “meltdown” of our own.

3. We are tired and all the patience we have is for our kids.

4. We have A far shorter fuse for nonsense as a result of our responsibilities but A FAR thicker skin.

5. We can get you in a hold/lockdown position in less than 3.5 secs.

6.We can shoot you a look that would make a linebacker tremble in his boots.

7.Chances are it’s been awhile since we’ve had a full night of sleep and that will give us a reason to plead insanity.

8. Our tolerance and patience is for our kids who didn’t choose to have special needs, not for someone who CHOOSES to behave inappropriately and is ABLE to control their actions.

9. We’re probably already on edge and it would be stupid to push us over.

10. We are sleep deprived and already defensive, and we spend all of our patience on our children, doctors, therapists, social workers and teachers, why would we waste an ounce of it on a total stranger?

11. We’ve had to fight from the moment of our child’s birth so by the time you piss us off we’re seasoned battlers and could win a war.

12.We devote our lives to our children and don’t need more stress and people who don’t understand our life.

Number 1 sums it up for me. We spend so much time defending our children who lack social skills that we forget them ourselves. This is the main reason I avoid going out most of the time. Lucas loves to eat out but he doesn’t always act in a way others see as appropriate. He doesn’t misbehave but he is never quiet, he doesn’t always use utensils appropriately and ever once in a while he will jump out of his seat. My number one rule is that my children will not be a nuisance to others but I’m not talking about screaming and running around in a restaurant. He is simply expressing his joy the only way he knows how.
I do not suffer rude ignorant people quietly. I feel that if you have the guts to tell me what you think of my child or my parenting then you should be prepared to suffer the consequences.

My friend kept her cool better than I would have. I’m not sure that he would have left with his food on his plate. His head, yes…

A bit of kindness goes a long way. It doesn’t matter if you are the most important person in your world, it won’t kill you to show compassion to the person waiting on you in the restaurant, bagging your groceries, or the frazzled mom with the cranky kid.

Easter “Eggs”travaganza!

Thursday was the last day of school before Easter and our week-long spring break so as a fun activity the 3 preschool classes had an Easter egg hunt in the “secret garden” on the campus of Youngstown State. Liam and I tagged along so that we could watch the kids “hunt” for eggs.

Even though I went to YSU for 4 years I never heard of the secret garden. Apparently they’re really good at keeping secrets in Youngstown. Well, I’m about to spill the beans. The secret garden isn’t really a garden at all. It is more like a walled-in courtyard behind Ward-Beecher Hall. The walk from Fedor Hall wasn’t bad and it was nice to see parts of campus I was familiar with years ago.

When we arrived at the garden, eggs were spread all over the grass for the kids to walk around and pick up. Lucas was pretty good at this. He focused on one area and he got down to business picking up the “mess”. He only had to be redirected back to the task a couple of times.

After the kids picked up all of the eggs I let Liam out of his stroller to run around and burn some energy. He thought this was great fun. He even managed to snag an egg from Lucas’ basket.

After the hunt we took the scenic route through campus back to Fedor Hall. I was impressed with how well all of the kids did on the walk. I was feeling it by the end but they didn’t seem to mind at all.

I think all of the fresh air was good for the boys, they were out as soon as their heads hit their pillows last night and even slept in a little this morning. Spring break is off to a good start!

I haven’t lost my mind…yet.

Then again, today is only the first day of spring break. I’ll let you know how I feel by the end of next week. 🙂

World Autism Awareness Day

April is Autism Awareness month and today is World Autism Awareness Day, the day designated to raise awareness of the signs of autism and promote early diagnosis.

New studies say 1 in 88 children are diagnosed with autism, with 1 in 54 of them being boys. Those numbers are staggering and the best way to help these children is to get them services as soon as possible.

I regret every day that I ignored my gut when Lucas was a toddler, but I didn’t really know what autism was. I heard about it, but I didn’t really KNOW it. I don’t think anyone does unless it touches their life.

I joked that Lucas learned to play from watching the cats. He had this 20oz A&W Root Beer bottle that he would bat across the floor and crawl after, only to swat it again. I thought he was a genius because every morning he would go straight to his alphabet blocks and pick out the ‘C’ block. He carried that one block everywhere but that was because it had pictures of cars and cats on it and those were two of his favorite things. He didn’t talk because he didn’t have much to say, plus “So and So didn’t talk until they were 3 and now look at them.” He didn’t walk until he was seventeen months old because he wanted to make sure he did it right the first time. Denial isn’t just a river in Egypt.

Lucas is affectionate, outgoing, and funny. He is nothing like a stereotypical person with autism. He was 3 before he was diagnosed. We missed crucial time with therapy and that is something we can never get back but we are going to work our hardest to make up for it.

We wore blue today in honor of the “Light It Up Blue” campaign sponsored by Autism Speaks. Famous landmarks around the world including the Rock and Roll Hall of Fame in Cleveland, Ohio, the Empire State Building in NYC, the Bell Tower in Perth, Australia, the CN Tower in Toronto, Canada, the King Tower in Riyadh, Saudi Arabia and many more will shine a blue light to raise awareness and so will we.

The coldest day of March

Well, maybe not. I don’t really have any data on that. The one thing I know is that in downtown Youngstown, Ohio on the morning of March 31,2012 it felt frigid. Yes, I am talking about the autism walk.

In spite of the cold temperatures there was a nice turnout on Federal Plaza and people seemed to enjoy themselves.

We arrived at about 9:30 am. It was easy to find parking because arrangements were made with Youngstown State University for us to park in the parking garage on Wick Avenue and take a shuttle to the walk site. I chose to walk down because we were using our gigantic sit and stand stroller for the boys and there was no way “the bus” would fit on the bus provided. It wasn’t bad going because it was downhill, the trip back was a different story.

We only stood in line to register for a few minutes and then it was off to check out the activities.

There was plenty for the little ones to do while we waited for the walk to begin. There was a bounce house and inflatable slide, free cotton candy and face painting. They had Geoffrey Giraffe, the mascot of Toys R Us and a couple of local mascots like the Smiley Face Cookie guy from Eat ‘n’ Park and Pete and Penny Penguin, the mascots of Youngstown State.

For the grownups there was free Starbucks coffee, live music, and a resource fair with plenty of information about autism.

We wandered around checking everything out but it wasn’t long before Lucas was miserable. He hates being cold and it was C-O-L-D. About ten minutes before the walk started he couldn’t take it any more. My mom decided to take him back up to the van while Liam and I stayed behind to walk.

The walk started shortly after 10:30. Liam and I found ourselves at the front of the pack, much to my dismay. I’m more of a hide in the middle or bring up the rear kind of gal. We kept up a brisk pace and were back where we started before we knew it. Liam and I didn’t stick around after we finished, it was just too cold.

The walk back to the parking garage was not as easy as the walk down, especially after the quick mile and a half I just completed but it wasn’t long before Liam and I were warming ourselves in the van.

Even though the weather was less than stellar it was a nice morning. I’m not sure how much awareness we raised about autism because of the cold temperature. Hopefully this will become an annual event.

I wanted to take pictures of our little “team” at the walk but we didn’t stand still long enough so this was the best I could do. :o)