“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. 

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.

Reflection from a film

When I was younger my favorite movie was Mr. Holland’s Opus. I loved it for two reasons, one I was a ultimate band geek and two it showed the Deaf community and the struggles a family went through when their child was born with a difference that the world would call a disability. 

You see at that time in my life I was extremely young and unaware. I thought I wanted a child that was deaf. I know this sounds horrible, but it is what it is. I was very involved in the Deaf community. Many of my friends were deaf, my best friend’s Mom was deaf and in my mind (like a said a very young mentality) that is what I wanted. 

This thought came rushing back to me two years ago while I sat in the doctor’s office when my son with diagnosed as having autism.

Last night when I could not sleep I decided to watch Miracle Run on Lifetime. 

With a new mindset and a different mentality I cried in watching this movie. I cried as the mom in the film received the diagnosis and had a break down. I empathized with her as she sat there saying all of her hopes and expectations for her twins had been ripped away from her. I knew how she felt when people she loved in her life walked away because of autism. 

What I loved most about this movie is that this mom fought! She fought hard for her two boys to grow in their own ways and at their own pace. She never gave up. She learned the laws and the legalities that ensured her boys had education. She even started her own foundation for autism. 

The movie was based on one family’s real life experiences with autism, from diagnosis to the boys being in Gen Ed high school and applying for college. 

When I was in high school and had a very young mentality I had no clue what I was in for. As an adult I still don’t know what all life will bring for my lil man or lil girl who has her own set of challenges, but I do know that I will never stop fighting for their rights. I will never allow my hopes and expectations be lowered by their labels. 

In today’s world we must still fight for our children to receive equal and appropriate education, but it is a fight we must never give up on or we are giving up on our kids. 

Words he didn’t say

Many times I tried to understand my son. I cried to hear him speak and then he spoke, but the words still did not bring clarity to me or my family.  After a year and a half of my lil man using words to communicate we have finally started to understand his meanings, not always but most of the time. We know when he says “so and so was bad to me” it means someone hurt his feelings or didn’t give him what he wanted. We know when he says “i no get no food” it means he is hungry. But the world does not know these things. The world does not understand the way he communicates. 

The world just doesn’t understand. 

Even though I do understand there are many things I still do not understand. 

I want to understand!

Today I got my chance to understand. I should have known … but I didn’t. I’m his mom and I did not know. How is it that a mom just did not know what her child was trying to say for so long. 

I missed it …

We were outside today playing, he invaded my bubble. He just wanted a hug but he came into my bubble. I know this sounds horrible, but it’s the truth. At the time I couldn’t have anyone in my bubble. I took a deep breath and gave him a hug. Then I went to tickle him. 

I learned something new today.

He said oww, he pulled away, he walked over to a tree and sat down with his head hidden in his arms.  How did I not know that tickling him hurt. How did I not understand that for his mind and body tickling is painful. 

I feel helpless

I gave him his space, let him regulate and then went to pick him up. He let me wrap my arms around him and make it better. He needed me to understand, he needed to have that moment. Afterwords he told me he doesn’t know why it hurts, but it does. It makes him feel bad when he is tickled. 

I understand …. mommy understands … you are not alone

 

 

The change we need

So I just got home from a very long day. Lil girl had her eval, posted about all of that earlier, then had school. So here is the thing I am extremely happy to find that lil girl’s intelligence is through the roof. Here is my struggle, she is one to two points too high for other services. They recommended that I go back to my pediatrician and request referrals for private evaluations for speech and OT. She attempted to line up every toy they gave her, but the examiner stopped her. When this was pointed out I was told that it’s okay because she was lining up colors.
When I pointed out that she imitated everything the evaluated did including the words that went with drawing a circle (examiner said “circle, circle, circle” while drawing a circle … lil girl with a crayon in her right hand still coloring took the lady’s crayon and drew her circle over the lady’s saying “circle circle circle”) I was told that is what they wanted her to do.

I was told that her intelligibility is not a concern at 34 months old, because she gets her point across with her limited vocab and through hit or miss pointing. She is understood enough for them to consider it “acceptable”

I was told that i need to work harder at getting her to use a fork and spoon when eating because she has a great grasp for coloring. I try with the fork and spoon but I am sick and tired of being hit by the fork thrown at my head. That is what happens if I have her use a fork. But if I don’t give her one on her plate I have her food thrown at me in frustration.

She is potty trained to an extent. She will not go to the bathroom on her own. She would rather wet herself before going alone. Other times she will simply pee where she is sitting/or standing without regard to the need to go.

She socializes with adults, but not peers. Her socialization was scored low because of this. They don’t know what to recommend because I already have her in preschool part time, and take her to the park and other venues where she can interact with children her age. She just wont.

The evaluated told me “She has no regard for danger.” This was not a question, this was a statement from watching her stand on the chair and not care that she was falling off of it. This was watching her do it again and again with the same results. This was her sticking her hand in my hot coffee without regard to it being hot.

She can not show the difference between a boy and the boys when shown a picture.

Yet I am left with the statement “We are sorry she does not qualify for services, you must go back to you doctor and request private evaluations. Or you can wait until she is three and go through Child Find”

You see here is a child who has dx of developmental delay. She is high functioning, yet too high functioning to actually receive help. This is where the divide in our community comes in. High Functioning vs Low Functioning … we each battle our own demons. We fight the same fight. If we were to band together and raise our voice as a unified community how different would our world be? How much could we change if we looked at it from all sides of the table?

Having a high functioning child is kind of a double edged sword. You know your loved one struggles yet you are not eligible for services. Having a low functioning child is not any better. Your loved one requires more help for their struggles than our system provides.

When will we demand a change for our loved ones? when will we be given the chance to give them the best life regardless of their functioning level? When will we see, within our own community, that our end goal is the same? That all we want is what is best for our loved one?

Finding Peace

ImageIn September of 2010 I was introduced to my second child, Buggie. My labor started out as a typical induction. I was given antibiotics for Group B strep, but was allergic to them and the iv had to be stopped and flushed as my airways began to swell. A new antibiotic was given and things progressed as would be expected. My doctor came in and checked me out then broke my water. This all happened around 1 pm. By 3 pm the nurse was calling in another nurse and they were looking at my contractions and Buggie’s heart rate, I did not know this at the time. They quickly put me on oxygen and told me to stay calm, that everything was okay. In my mind I’m thinking really this isn’t my first child I know this isn’t right and you expect me to stay calm?!? I didn’t keep the oxygen on long before I was asking questions to find out what was wrong with me and/or my baby.  In a tone that I feel only medical professionals can perfect, they calmly told me my baby’s hear rate was dropping every time I had a contraction. They called it d-cells. This mommy was not going to stay calm. My mind was racing and I was SCARED!

The next hour of my life seemed like the longest there had ever been. Not only was his heart rate dropping with each contraction, but I had stopped dilating. By the time my doctor arrived at the hospital my contractions were stronger and his heart rate was dropping lower. My doctor had to put probes onto his head to be able to better monitor his heart rate and make some quick decisions. She ordered the OR to be prepped and on standby. While that happened she worked to bring my son into the world. She manipulated my cervix, told me when to push, and when to stop. Once Buggie was out she had to unwrap the cord from around his neck. This little man was brought into the world blue as could be. I didn’t realize this until I didn’t hear him cry right away. Thank God for my mom being there. She talked me through everything and did her best to keep me calm. Finally I heard the best sound ever, my little guy cried. **sigh**

Image

Buggie was an easy baby. He didn’t cry, he slept a lot, he ate great. Around 6 months old I started noticing that he wasn’t doing things at the same rate his older sister was. He wasn’t trying to crawl or sit up. I brushed it off as each child will develop in their own time. By a year old he wasn’t walking and wasn’t babbling. My dad and I talked about it and he thought my son might have autism. I talked to his doctor and my concerns were brushed off with “Boys develop slower, he’ll catch up.” He did, at 18 months he finally started walking but still wasn’t talking. He had no eye contact didn’t want to be held, didn’t play with his toys, cried when I had to vacuum, wouldn’t drink from a sippy cup … the list goes on.

ImageBuggie age 2

Finally after his third birthday I demanded that he be screened by Child Find, he was and when he failed his first hearing test they stopped screening until we saw and ENT. We did, and his hearing was fine. Back to Child Find … again he failed the hearing test … back to ENT … again told he was fine with his hearing. I WAS FED UP! The system was messing with my kid and I was fit to be tied. But what did I know? We moved to a different county and our file was lost in transition (No surprise there), almost a year later we got back for a screening. Lil man was evaluated by a multidisciplinary team, he saw a developmental ped, slp, ot, and so many more. He was diagnosed with PDD-NOS. He was diagnosed as being on the spectrum. In my mind the world was over. I put all the pieces back together and knew I had to go on with what had to be done. I had to take care of things, but I was devastated. The next month was a blur of internet searching, losing friends and feeling alone and angry. DAMN IT, I WAS MAD! Then my oldest daughter had to have oral surgery on a night I was supposed to go to an autism Q&A for one of my classes.

Image Little Advocate age 6

After she was out of surgery and back home with me and my mom recovering, my mom urged me to go to this Q&A for school. I remember looking at my mom with this look like, seriously mom? My son was just diagnosed a month ago this is the LAST THING I want to do!

I went, still angry at the world. Angry at what, in my mind autism took away.

Here is what I learned that night, a meer month after finding out my son  had autism. The world did not take anything from me, it just gave me a name to go with everything I already knew about my son. I remember sitting with my classmates, in front of four other moms who told their stories, bawling my eyes out. One of the moms had told me “Oh, honey don’t cry for us …” she paused, looked at me and said “You’re not crying for us, you’re accepting your new life aren’t you?”

That one statement, that one ounce of compassion from a complete stranger changed my life. That night I shared my story with my classmates, people I didn’t know. That night I accepted that there is nothing that autism took away. That night I cried and mourned what I thought I wanted for my son’s life and accepted where we were at. I became a warrior and a voice for my children.

That night, in front of a room full of strangers, I bonded with a mom and cried because I had finally found peace.

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Lil Advocate, Buggie, friend

Summer 2013

http://dailypost.wordpress.com/2013/08/10/daily-prompt-beauty/