“Autism on the Rise”

Yesterday Autism was a buzz word again with news reports following the release of new statistics regarding the prevalence of autism in our society. The CDC (Center for Disease Control) released the statistic that autism now affects 1:68 children. Previous statistics indicate that the numbers were 1:88. This release, these numbers, caused autism to be a buzz word yet again. Not only for the NT community but also in our own autism community. But why? Here is a statement from the CDC’s website:

Prevalence

About 1 in 68 children has been identified with autism spectrum disorder (ASD) according to estimates from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network. [Read article]
ASD is reported to occur in all racial, ethnic, and socioeconomic groups. [Read summary] [Read article]
ASD is almost 5 times more common among boys (1 in 42) than among girls (1 in 189). [Read article]
Studies in Asia, Europe, and North America have identified individuals with ASD with an average prevalence of about 1%. A study in South Korea reported a prevalence of 2.6%. [Data table] [Read article]
About 1 in 6 children in the United States had a developmental disability in 2006-2008, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism. [Read summary]  http://www.cdc.gov/ncbddd/autism/data.html

This blurp does not include the facts from the rest of the release. These numbers came from 2010 and include only 11 states. So why is this important you ask? Easy! The data is two years old. The states that the population was pooled from are limited. Seriously 11 states out of 50 in the US. This limited selection of individuals, mind you is counting only children above the age of 8, showed an increase of 29% in two years. The media is picking this up as autism being an epidemic. IT IS NOT AN EPIDEMIC! Autism is still widely misunderstood. The news stations picking this up are fueling a rise to find out why, a race to find a cause and cure. Let me tell you, we are not broken. We do not need to be fixed. 

I made a comment about the news report on ABC World news yesterday regarding a “Race to find out why autism is on the rise” and it lead to a friend asking “did they say why?” You see I don’t care why. Our house has rates of 3:5 with autism. My house is full of autistic people. I don’t care why it happened or what caused us to be autistic. I actually love our autistic life, even the struggles we have to go through to get to the great stuff. Instead of telling her that. I responded with:

there is no known cause at this point. Many believe there is a strong genetic component. The bigger concern is that there are very little services currently provided to our autistic children and adults. As parents we have to fight for every single thing in the school systems, more and more autistic kids are being placed in the general education (regular) classrooms with teachers who have NO knowledge on how to teach them. Media reports like this one and associations like Autism Speaks place more emphasis on finding the cause and/or cure and no focus or very little focus on helping families obtain services needed. The rates (which only included 8 yr olds from 11 select states in the US) indicate that we are going to have a generation of individuals entering the adult world and there are NO supports for them. The magical cut off for services seems to be 18 years old. I have two children who may never live outside of my home and may need my support all their life, who will take care of them when i no longer can? I’m not the only one in this boat. What will happen when those 1 in 68 children enter adulthood and their parents can no longer take care of them. This is why I was so outraged at focusing on finding a cause. We need to focus our efforts else where.

These new numbers will focus energy elsewhere. What we need to focus on is not the why’s or how’s, we need to focus on the services we are given. We need to focus on teachers knowing and being educated about the truths of autism. We need to understand that in a few short years we will have a group of people “age out” of the system and then what? Where are the supports for adults on the spectrum? We know what will happen after our children “age out” As parents and care givers we will be left high and dry with limited support. Should this be our reality? Shouldn’t we have a better chance at life? Autism is not something to be cured, rather the individual should be supported so that they can live the best life they can. 

Advertisements

Changes

I am optimistic, I believe in the greater good and I truly believe that each of us can change the world one small voice at time.

Why are you trying to teach them social skills, you know you can’t change the world right?

Seriously though, it gets to be discouraging when those around you shoot you down. When those who are supposed to work with you don’t believe in the change you are trying to create. Yet still I strive to be that change. Our kids don’t always get the social requirements of society. They don’t always understand that you cannot laugh at another person’s lack of knowledge or mistakes. This skill must be taught. Whose job is it to teach it? Is it solely the parent’s? No this is part of an educator’s job, we must teach the hidden curriculum to our students with autism and similar disabilities.

It is useless at this point in their life to try and teach that skill. They will never get it.

If an educator truly believes this of a student, even if they are 18- 22, then why are you doing this? Why did you take that job and commit to helping these adults succeed in the world. Why are you here teaching them employability skills and training these individuals to become a functional part of society rather than committing them to a life in an institution?

They have gotten by this long just let it go. This is how they get along with each other. It is their normal interaction. They identify themselves as “ESE KIDS vs. Regular Kids” You cannot change that.

Your negativity pushes me to try harder. To prove you wrong. I may not be able to do it alone, I’m sure not going to do it in a mere 16 weeks, but if I plant the seed and you continue to water it and support that growth for the next 2 – 3 years that these students are with you I assure you there will be a change. I promise you that you can be part of the change that all of us are asking for.

You’re a great advocate, but you are too idealistic. You need to realize that this is what you get and you simply work with where they are.

Is there a reason that being idealistic is bad? Is there a reason that demanding a change, demanding that our students are given better is wrong? Is it because I am a new teacher, well technically still a student, that I am not jaded by the system?

You might answer yes to those questions but the truth is no I’m not all that new to all of the red tape of the special education world. I am giving my students, possibly your child or your niece, nephew, brother or sister, the same type of chance and education I want my own two children to receive. I do not want a teacher that does not believe that my children can do better. I want a group of professionals that see the untapped potential and will fight for them. I want a teacher that advocates for their students both in the classroom and out in public on outings.

I am not green enough around the ears to think that in my short 16 weeks with this group of students I will make huge monumental changes, but I am realistic enough to know that if the seed is planted and nurtured, these 10 students will be given the best education and chance at life after school they can have.

I am the voice of the change I want to see in the world. I am doing the things I want to be done for my kids for other students. I am idealistic, I am an advocate, and I will make a difference in the life of my students. 16 weeks is a pretty short time span, but it is long enough to show these students that I care.

What do you want? A teacher who doesn’t believe a change can be made, or one that will fight for your child and make sure their untapped potential is being accessed every day.

Changes are hard

Sunday night the kids and I talked about the changes that were going to come our way on Monday.

Mommy starts school again on Monday, just like you do. We will wake up early. We will go to school everyday. Mommy will pick you up from school after snack. Mommy will be home every night.

We have been having this conversation and this social story since winter break started in December. The only thing that changed is the start day.  Monday came and we woke up early. Lil man and Lil girl both made it out of the house on time without meltdowns! (win for me)

As we get into the car and are driving to school lil man tells me “It’s sleep time, sun sleep.”  Lil girl puts her two cents in “sun sleep.” Yes kiddos it is dark out. I’m sorry that you are having to be to school at 6:30 in the morning before the sun has even come up in the morning.  As we finish our short drive to the preschool and get out the car lil girl is excited to be back. Lil man knows that it is his job to press the smiley face so I can sign him in.

But now comes the change … We don’t drop off in the cafeteria for breakfast, it’s still too early for that. We don’t go to lil man’s class because his teacher isn’t there yet. He and his sister both go to the two year old room where they will wait for their teachers to come in for the day.

Where was mommy’s head? I didn’t think to prep them for this. How will they handle this change?

Lil girl was great about it. It was her class and her teacher so it was normal. Lil man threw himself on the ground crying as I tried to leave. He stood up as I walked out the door and ran after me.  Change is hard! 

At the end of the day Daddy and I pick up the kids from school. They tell us that lil girl will be transitioned into the three year old classroom. That it will be done in a single day.

Mommy isn’t ready for this! She isn’t able to fully communicate. She isn’t developmentally where the other three year olds are. She is below where most two year olds are. 

She made it into the three year old room with no issues. I watched her today when I picked her up. She loves the room and the new toys. She loves to sit by the other children doing her own thing. But she is there. She was ready even though I wasn’t.

Change is hard. It’s hard for a mom to let go and watch her children go into a new situation when you aren’t sure how they will do. It’s hard to accept that children change and grow. But change also teaches you things. This change taught me that lil girl loves the babies in the classroom and all the kitchen stuff to play with. She loves that she can do her own thing and still not be worried about the others in the classroom.

Lil girl taught me that while I might not be ready for it, she was and she is happy there. Change is hard, but needed if a child will progress to the next step. Whatever that may be for that child.

Remembering who you are

Image

Ohio State Marching Band

Friday night football games were a way of life for me in high school. I was the ultimate band dork! I had dreams of attending Ohio State and being part of this prestigious band that dots the “I” in script Ohio. Ultimately I did not attend Ohio State, rather I stayed in Florida to build the life I have today.

Fast forward 12 years to present day.  I have three beautiful children, I am finishing my degree in Special Education in May of this year. I have an amazing husband that supports me. He helps me find myself when I lose myself in the family roles and the delicate balancing  act that these roles require.

Image

Before the game

This year my mom helped one more of dreams come true. I got to see Ohio State play live and in a bowl game no less. My amazing Hubby took over parenting duties for the day so I could be free to be me. For one night I was able to go out and know that my children were being taken care of by their daddy. As I got ready I realized I was doing things for me that I rarely do anymore.  I shaved my legs, I put on pants that were not sweats or yoga pants, I did my hair and I did my make up. I left for the game feeling like a woman and not just a tired mommy and wife.

With two children with special needs and one who is as typical as can be but still needs more attention to combat the amount of attention that the younger two need, it is easy to forget to take care of yourself. It’s easy to forget that before you were a mommy or a wife you were a woman. Not only did I get to feel like a woman. I got to spend a lot of time with my mom and my sister bonding in a way we have not done in a very long time. My mom has been a strong support to me throughout all of my life. She has stood there and pulled the strong hand when she had too, even though I know it nearly killed her to do it. She knew when to push me and when to let it slide. She did all of this so that I could become the best version of me. That is what a mom does, this is the type of mom I strive to be for all of my children

Image

In the midst of this great night and getting to be the part of me that is rarely seen these days because of all the other roles I have to fill in, I came to a realization. In order for me to be the kind of mom my mom is, I need to take care of me. I am not just a mom, wife, teacher, advocate, friend, sister or any of the other roles I take on. I am all of these and more. If I intend to keep going at the pace I do for any length of time without burring out I need to take time to take care of me in the process.

Image

I’ve got my sexy jeans on, my make up done, and getting my drink

Sometimes we just need to put our make up on, a pair of nice jeans, some heals and live it up like the beautiful women we are.

Here’s to remembering to put your sexy jeans on, do your hair and make up, get your drink and celebrate being the best version of you!

Judgmental stares

Dear Walgreens Employee and Shift Manager,

As Walgreens is a proud supporter of the Dan Marino Foundation 4th annual walk about autism I expect a little more from you in the area of awareness. However I should know better.

When my three year old daughter is having a melt down because she is fixated on a baby doll that she can not have at the moment it is really not your place or the time to look over your shoulder as the cashier to your manager and ask “Does your child act like that?”

You see, as I told you my child has autism. She is not reacting this way because she is a “spoiled brat.” Your unkind eye rolls are not going to change the fact that she is having a meltdown. This is not a temper tantrum. She is fixated on a baby doll. She is always fixated on a baby doll. It does not matter that she has on in the car or another 19 baby dolls at home to play with. She is fixated because all she plays with are baby dolls.

This mommy would love to educate you more about autism, but when you questioned her age and put her, by size, at four. I told you she was three and you rolled your eyes at her behavior. Well again I explained that she has a developmental disability and that while her chronological age is three she is functioning at the level of an 18 month old.

During a moment like this I am not sure what is going through your mind. What you think of my parenting skills or of how I should be treating my child’s behavior. My only focus at that moment is keeping my child from harming herself or others. I don’t have the time to educate you or any of the other three cashiers that are staring at my child and me.

In those four sets of eyes I am watched and in those moments I am judged, I am alone. I have accepted my children and the challenges their differences bring to the table. What I have not accepted is the ignorance that the general population has brought to the table. I have not accepted your judgmental looks and snarky mean spirited comments as the norm.

This mommy, will continue to educated the masses, but she will not be made to feel less by anyone!!!

Regards,

One pissed off mommy

Roller coaster

I am angry at you! Yes you, the ones who are making it impossible for my children to succeed in the typical functioning world.

You push these children aside and leave the parents to feel helpless at best.

I am jealous of you! Yes you, the one with the two year old that is speaking in full and clear sentences.

You don’t understand how hard it is when your child has words but can’t use them to tell you what they want or when they are hurting. Yet I am grateful that either of them have speech to share their words with me.

I am sick of you! Yes you, the mom or dad that is bragging on Facebook about that trip you are taking while your family takes care of your kids for you.

I hate that I cannot find a sitter that is capable of watching my two children with special needs. I hate that my own family cannot even watch the children long enough so that I can share a hot dinner with my hubby or hell take a nap.

I don’t want to hear it! So you couldn’t sleep for one night. I have lost track of the nights I go without sleep.

I am so angry, it seems like it is at the whole world, but honestly I am angry at myself for having these feelings. I am at a breaking point and need to have some time to regroup so that I can take care of my family. We are quickly approaching the winter holiday where all three of the kids will be home. Where I will spend 14 days with no help and no breaks. 14 days of meltdowns over schedules being off and things being different.

I DON’T WANT TO BE ANGRY ANYMORE!

Words from me to you

Dear Son,

I have watched you grow from before you were born. I have been with you through each step of your journey. Somedays I have cried tears of anger and sadness and others I have cried tears of joy and pride. Today though I did not cry as I watched you decided to pull a wall around you and your world.

Sunday morning you woke up and decided you were not going to speak. You see, for me this hurt. I wanted to scream at you to speak. I wanted to shake the words out of you. Those words are there, yet you choose not to use them. We have spent hours upon hours working to get to your words and here you are five years later locking them up inside you.

I know you don’t understand why I am frustrated right now, but I am. I hate watching you pull yourself into this world where only you know what is going on. You lose all eye contact when you do this and it scares mommy. I feel like I am losing the little boy I know when you go to this place.

I think it would be pretty cool if you could take me to this place with you. I know it’s got to be pretty amazing since you have been going there more and more these days.

Son, I know you don’t understand but Mommy misses you so very much these days. I am learning to accept that this world of yours is a safe place and that you will go there when you need to. I am learning to accept that you are not gone, rather just handling your thoughts in a way that you know how. Mommy does that too, I just don’t have any one to say “I wish you weren’t there” to me.

I can’t promise you I will always be the one who is okay with you going to your world, but I will always be the one who loves you no matter where you go or what words you decided to use and when.