I’m tired. It has been a long day of traveling, a long week of dealing with my father and insurance companies and rehabs. A week away from my babies, my husband my BED! All I really want to do is take a shower right now and then sit with my kids relaxing on the couch cuddling. But I feel the need to write this post now while it is all fresh in my head. While it is raw and I am still able to hear the words that were spoken in my head clearly. I still am not sure how I could possibly have had two so completely different experiences happen to me within an hours time. Yet I did!

I am a talker. When I am forced to wait in line I tend to seek out others you know to commiserate with, make the time go by faster. The TSA line in Miami was huge so of course when the woman in front of me engaged me in conversation… I gladly chatted back. I am not really sure why but for some reason I mentioned how the last time I flew I was with my children and well we did not wait in that long line as we were taken to the front once I told them that my son had autism and could not handle an hour wait. This sweet stranger in front of me smiled at me and said… “My grandson has Aspergers!” Needless to say the hour wait it took us until it was our turn to have our tickets, bags and body scanned flew by. After all I was talking to a fellow CLUB member.

I told my new friend about this blog and then we parted ways, each of us off to catch our separate planes. While sitting at my gate waiting until boarding time I could not help but feel like that was a good sign… a nice welcome back to my WORLD. Perhaps that is why I felt so blindsided but what happened next?

I politely helped the 60 something year old woman who said she was to short to reach with storing her bag in the overhead compartment, after all she would be sitting next to me for the next two hours, might as well be nice. She thanked me and then she and her NEW husband (as I soon found out they were coming back from their honeymoon cruise) climbed into our row. While squeezing by she happened to notice the Chicken Soup for the Soul: Raising Kids on the Spectrum Book that was laying on my seat. “Oh I love those Chicken Soup Books” she said as she put on her glasses, grabbed my book and took a closer look. As if the book was on fire she quickly handed it back when she read the title and just looked at me. I am not sure why but I felt the need to explain why I was reading it so I said, “My son has Autism, Aspergers  and well… one of my stories about him is in this book. I am hoping to finally get to read all the others”, I said and smiled. ” Oh” she said and patted my arm and then she asked me, “Are you okay?” I must have looked confused as she continued on, ” I mean I’m so sorry!”

Oh God I thought to myself not that SORRY word again. I have already written a post about how I feel about that one. Not wanting to go there again, wanting desperately to give this woman the benefit of doubt that she was just a nice lady who didn’t know better, I said, “I’m not! My son is wonderful. He is smart, funny, loving and one of the most compassionate people I know. There is no doubt in my mind that he and my daughter who does not have autism will both go on to do amazing things with their lives.” Then for the first time the husband spoke up and said, “But he has some obsessions I am sure right? And is well … you know quirky?”  I smiled and replied, “He has certain subjects that he enjoys more than others if that is what you mean and yes sometimes he can be a bit quirky. But non of his FRIENDS and Honor class teachers seem to mind too much” I added perhaps stressing the words a little to to much. To which this woman replied in a very shocked way…

“ARE YOU SURE HE IS AUTISTIC?”

I just looked at her and then thought about the other woman whom I chatted with early and how I thought it was such a good sign and then this… this ignorance, this prejudice this misinformed soul who has no clue as to how much people with DIFFERENT abilities are capable of. I could feel the tears forming in my eyes and a lump in my throat and I was determined to not cry for then she would pity me and all her preconceived perceptions would just be confirmed. But I had to say something, do something so all I said was…

“Yes I am quite sure that he is WONDERFULLY Autistic and that I am blessed to know him.” then I opened up my book and started reading and did not say a word to her or husband the rest of the flight.

When I got home after all the kisses and hugs from BOTH my children I felt the need to tell them what happened on the plane. I never want my boy to be ashamed of who he is, but I also want him and my daughter to understand how so many people out there just don’t get it. After telling my tale Jay patted my arm and said, “Mom you let your anger get in the way of educating someone.” Then he walked away!

I have no nice tidy ending to this post. My son said it all. My Wonderfully Autistic eloquent wise beyond his years son said it all! I truly am blessed to know him!

Today is April 2nd,World Autism Awareness Day. In an effort to create a more inclusive society that highlights the unique talents of autistic people and ensures opportunities for them to realize their full potential; many people will be wearing blue today. Although I believe autism is a rainbow of colors and not just blue, we too will be wearing blue today as it is one of my son’s favorite colors.  Our light bulbs have been changed to blue too. I did this in the hope that someone will ask why… and then I will tell them!

I invite you all to light it up blue,wear blue or any other color on the rainbow, but more importantly… to talk about autism today and every other day too. Help change the stigma and missed informed opinions out there. Tell them about my son and all the other autistic individuals out there and how they are much more than a statistic! They are people. People who can see you staring at them, shaking your head in disapproval or looking away. Men and woman who just want to be accepted, loved for who they are. A boy, like my Jay, who likes vanilla ice cream, cheese pizza, computer games and being included!

Today, throughout April and from there on, I encourage you to talk, and keep talking. Not because you speak for my son or any other autistic person, because you don’t. On the contrary I ask that you speak with them, no scratch that… TO THEM… BOTH!

Talking leads to Awareness. Awareness  leads to compassion, compassion leads to acceptance.

April 2nd, 2013… World Autism Awareness day…TALK about it.. Lets make Autism not so scary sounding because it isn’t! Let’s erase stereotypes and preconceived beliefs and replace them with names and faces of real people. Lets help create a society where diversity is not only tolerated… it is applauded! And all it takes to make that happen is one simple conversation.

Today, as you go throughout the day… try to work in the fact that it is World Autism Awareness day… TALK about it because Talking leads to Awareness. Awareness  leads to compassion, compassion leads to acceptance.

This is what 1 in 50 Looks Like!

By now I am sure you all have heard about the new CDC report that just came out stating that now 1 in 50 children in the USA is on the spectrum. (If not just click on this and it will take you to the actual report.) Does this report surprise me, nope. I think we all agree that the old 1 in 88 was low and so this to me actually does make more sense. What does surprise me is how quickly this report is being used in a way that was so completely against the whole reason it was done. SIGH!

I am glad that the report is showing this because now perhaps more government funds will be allocated to provide resources to those on the spectrum to give them the tools they need to be able to live rich and fulfilling lives. I am glad the report exists so that schools systems will be forced to re-evaluate their teaching methods and society re define what is consider Normal and typical. To me, this is why I applaud studies like this for, HOWEVER, I am afraid that is not how they are going to be used.

This is what 1 in 50 Looks Like!

Already I have heard words like “EPIDEMIC” and “frightening increase” and this my friends is what scares me. I fight every day to have my boy be seen as just that… a boy. A real person and not just a statistic. And when I think, finally we are getting somewhere, another study comes out and yes it shows what I already knew and instead of all the good that could come out of it, the media will jump on the bad and bring out all the guns and start pointing fingers and looking for blame and when that happens… well we forget about the faces, the people behind the numbers.

This is what 1 in 50 Looks Like!

April is coming up… Autism Awareness. Perhaps this study will make people pay more attention, and for that well I am grateful. You see I believe with all my heart that the more folks are aware, the more people who can see the boy, girl, man, woman behind the 1 and 50

This is what 1 in 50 Looks Like!

statistic… well the more compassion and acceptance they will have.

This new report now estimates that over one million people in the US are on the spectrum. Perhaps instead of running in fear, instead of blaming and working against one another we need to start to come together and show the world what these one million really look like. Let them be heard and then let’s go from there!

So whether you choose to light it up blue or wear all the colors in the rainbow… I really don’t care. All I care about is that we work together to make sure that our loved ones are not just a statistic.

I seem to be making a habit of starting off blog post with saying how sorry I am that I have not posted in a while. I guess it is a good thing as it means I have been getting some actually paying writing jobs.   Anyway today something happened that well… I needed to blog about as it would take more than a Facebook status to get the whole story out.  And this my friends is a story worth telling. I PROMISE!

To the outside world this thing I am about to tell you about may not seem huge. BUT to us… you know the members of the Autism club, well it is beyond HUGE, which I am sure there is an actual word for but I am on 4 hours of sleep and just cannot find it right now.  Are you ready for me to tell you what happened? Hold your hats folks as I am going to blow your mind with this one…

MY BOY ATE TOAST!

I know it is newspaper worthy! Actually for our family it really is. Let me back track and explain this significance.

Jay was 3 and we were just going through the process of figuring out what was going on. Actually I had no clue there was anything wrong but his preschool teachers insisted that my beautiful brilliant boy who was already reading books on a 2nd grade level be tested. Yes he was quirky, but aren’t all geniuses? Sure he only ate about 5 different foods, but hey he was eating and that was what mattered right? Okay maybe the way he would dive under the table if he heard a firetruck siren, meltdown in a puddle of tears if his crayon broke, refuse to walk on grass because it felt icky… maybe these things seemed odd… but I was an actress at one time so why wouldn’t I have a dramatic child, right?

So we took him to the child development center and began evaluations. Since he was so young they had to break it up over a three week period. I would take him to school, go  home and take care of my new baby at the time, then go back and pick him up at lunch time to take him over to the development center for a 30 minute session of play that although my boy enjoyed, left me scratching my head as to how this would give us any insight into my child. I was scared. I was baffled. I was in denial.

About two weeks into the evaluations  I started hearing the therapist throw around words like sensory integration, autism, developmentally delayed. I became more scared, more baffled even more in denial.

The evals ended and the scores were added up. Although my boy did show many signs of autism, because he was so verbal, because he made eye contact and interacted, they did not slap that label on him yet. Instead they said it was Sensory Integration Disorder and major fine and gross motor skill delays. They also said that his jaw muscles were week and that is why he did not want to eat. OT, PT and Speech were suggested and very quickly became part of our regular routine.

The OT and PT were fine, I could see where the deficits were and my son seemed to respond very well to what they were doing. Speech therapy on the other hand was torture for my boy. My boy had no interest in being exposed to different textures, sensations and flavors. I knew it was important to do this but as a mom it killed me to see him get so upset.

One day I picked up my happy boy at school ready to take him over to therapy and noticed he had a piece of tape over his mouth. The teacher quickly explained how he had done this when she told him to pack his bag. When she asked him why he took the tape from her desk and did that, he responded, “So I don’t have to try new foods.” I eventually convinced him to take the tape off by telling him that he did not have to eat the foods… I just wanted him to smell them, touch them, maybe just put it in his mouth and spit it out. My thinking was that this would be a start and this was exactly what I told the therapist when I saw her. She told me not to worry that they were only going to try plain toast and that everyone LOVES toast once they taste it. She enticed Jay into the room by telling him she was going to teach him the YEAH TOAST song and dance. My boy left my side with a look of concern. I felt the need to go with him, but the therapist assured me it was just TOAST not even butter on it, he would be fine.

I played with baby Gracie in the waiting room trying to hear what was happening in the other room. Suddenly a crazy sounding song could be heard. The baby laughed and giggled, I laughed and giggled, JAY CRIED! The door flew open and Jay ran into my arms saying NO TOAST! The therapist came rushing out shaking her head. “I don’t understand.” she said. “I have never seen any child refuse to eat toast like that. He is very defiant. If you don’t do something you will always have problems with him. Why don’t you join us and we will try again.”

I looked down at my boy who was hugging my leg. I bent down and held his chubby precious face between my two palms and asked him what the problem was. ” I am not ready to try toast mama! No Yeah Toast!” And with that it it all suddenly made sense.  I did not care what label they slapped on boy, what all the so called experts said we should do or not do. From that point on I was going to take my cue from my boy. He would do things on his agenda, when he was ready. Some how I just knew this about this child. SO I put the baby back in her stroller, grabbed his hand and started walking towards the door.

Just as we are about to exit the door the therapist asked if we would be back. I turned around and simply said, “NO YEAH TOAST!”  We found a different therapist after that who understood and never ever tried to make my baby eat toast if he did not want it.

So here we are, 9 years later and honestly I had forgotten all about that day until my son asked me for toast today at breakfast. My heart skipped a beat when he asked. I guess he thought I did not hear him because he asked again. “I think I would like to try a piece of toast with my eggs today mom. It is part of a well balanced breakfast you know. Just plain toast though and please don’t toast it too much, okay?” As I put the toast in the toaster making sure it did not get too done all the memories of that day so many years ago flooded back. With a tear in my eye I handed my son his breakfast and then sat down with him. I wondered how much he remembered from that day so long ago but was afraid to ask. I did not need to because after he took a bite he put his thumb up and said, “YEAH TOAST!” I ran over to the computer and found the YEAH TOAST song and the two of us danced in the kitchen laughing hysterically.

My boy ate toast today. On his own time, his way. And that my friends is definitely newspaper worthy! YEAH TOAST!