DENIED …

Today I sat through yet another IEP meeting for yet another one of my kids. We did the full out thing, they didn’t tell me anything I didn’t already expect walking into the meeting. 

They indicated that Lil Girl has a significant difference between her scores in the area of attention and memory from those in logic and reasoning. Reasoning and logic are her strengths. Due to her strengths in this area she scored high in cognitive, which denied her services in this area. 

Then they told me all about her personal – social behaviors. Here they spoke of how she is affectionate with family members and other adults. They did not show that it took her about 10 – 15 minutes to warm up to the evaluator that was playing with her. They talked about how she will sometimes allow adults to join her activities. They acknowledge that she does not like to help adults in the house, and that she is aware of other children, but does not interact directly with them. They say she can say her first and last name, but that she not respond correctly called by her name. Now here is the fun part because up until now it’s all clinical data … Lil girl LOVES playing in the kitchen.  She will give bowls of food and feed her babies. But the data is a little well … incorrect. They say she will initiate socialization with her peers. THAT IS BULLSHIT! She does not care about the kids in her class. She is happier playing by herself and gets very irritable when other children mess up her play. I CALL BULLSHIT! Oh and she is aware of gender differences, because you know boys have a penis. Yup she went there. God do I love the things that come out of my kiddo’s mouths. Again they state that there is a significant difference between her score of self-concept and that of peer social skill development. 

 

Her adaptive skills scored low as she still needs assistance with many tasks a 3 year old should be able to do, like undress themselves and always use utensils when eating, petting animals gently and not eloping. 

Her communication scored high because she uses gestures to get her point across and understand a lot of what is being said to her.  In other words, she makes herself and her needs known one way or the other. Her speech however is completely unintelligible. 

So what does all of this mean? Simply stated … her attention and memory issues are not a problem because her logic and reasoning skills are so high. However there has been a large decline in those since her Early Steps screening (about 15-20 points). Her adaptive skills are 5 points too high and her social skills are 2 points to high. These two areas being too high by a few points have denied her services for developmental delay. They have indicated that she has a severe phonological impairment that impacts her ability to make her needs and wants known. So for now she is being placed in a 2 1/2 a day program that will be language and speech intensive. 

While I am happy that she is getting intensive speech from the district, I feel lost because she had a really good testing day. It was one great day out of so many bad days that we go through. Now it is time to start working her therapy myself, like I had to do for me and for my son. While she scored anywhere form 2-5 points too high for the additional services, I will not let my child fall victim to a system that is too overworked and too finically stressed. My daughter will not fall through the cracks. She will succeed in her own way at her own pace. 

“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. 

This is ours

“Lil Girl” they say as they call her back to the room.

I’ve been here before, I know how this goes

“Mom what concerns do you have?”

God I wish I could say none and why are we here

“She doesn’t speak much and when she does you really can’t understand her unless you are fluent in Lil Girl”

That’s right, hide your fears behind humor. You are so good at it.

“We are going to look at some key areas of development, language, and articulation”

“Lil girl how old are you?”

Please respond. Say anything, even if it isn’t your age. Please don’t sit there and smile at them

“Lil girl are you 1? ::shakes head yes and smiles:: “are you two?” ::shakes head yes and smiles:: “are you five?” ::shakes head yes and smiles::

YOU ARE THREE!!! DAMN IT WHY CAN’T YOU SAY YOU ARE THREE????

They keep making their notes, they keep trying to get something from her.

“Lil girl what is this?::  points to a picture of a spoon. “oo” “can you say spoon?” “oo”

“what is this?” ::picture of an umbrella:: “lella” “What do you do with the UMBRELLA?” ::flapping:: silence:: the question is repeated “ol tot site”  ::still flapping::

OH MY GOD!!! She just answered in a sentence. She spoke in a sentence. I’m shocked. 

“Mommy, we need her to see the developmental psychologist and have a more in depth evaluation on her language and speech”

DAMN IT!!! I wanted to be imagining all of this. I wanted to be seeing things that weren’t there. FUCK!

“We have some forms for you and the preschool to fill out.” They are talking, but I can’t hear the words. They don’t make sense anymore.

Seriously … again?!? I DON’T WANT THIS AGAIN. I CAN’T DO THIS AGAIN

The teacher forms aren’t much better. They were given back today.

“Lil girl doesn’t talk much. She doesn’t like to play with anyone and she gets upset if other children come to her”

Don’t cry mom, hold it together. You are stronger than this. Just keep reading

“She understands simple directions, like put it here, but most of the time when you ask her a question she just smiles”

Screw it! I can’t be strong any longer. I’m done, finished, I’m at my limit.  I let the tears roll down my face in silence. I cry because I was right all along. I know this is not the end, rather the beginning. I know that she follows in the footsteps of mommy and brother, and most likely daddy. I know that no matter what this challenging life throws at us, THIS JOURNEY IS OURS AND IT WILL NOT BREAK US!

My reality

If you close your eyes are you at peace? 

When you close your eyes what do you hear?

I close my eyes and hear everything ten times louder, things are clear. 

I hear the hum of the filter on the fish tank. 

I hear the dripping sound of the water in the fish tank. 

There is a squeal coming from the bathroom as someone flushes the toilet. 

I open my eyes and see the blinding light from the ceiling fan in the room

I am lost to the images cast off by shadows of the blades rotating above my head. 

I am lost to the stinging sensation that the light brings to me. 

 

When you open your eyes what do you see? 

Does the light sting your eyes? 

Do the shadows distract you or hold your attention to the point that everything else is blocked out?

What is your visual and auditory reality? 

This is my world, would you like to come in? Would you like to join me here?

 

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.

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!

Autism Speaks does not SPEAK for HIM OR HER OR ME

I have remained silent on the Call To Action published by Mrs. Suzanne Wright …. until now!

Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house.  That is – if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes?  Climb the furniture? Raid the refrigerator?  Sometimes – the silence is worse.

These families are not living.

They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely – 24/7.

This is autism.

We are talking about the parents here. Let’s look at this realistically. It is true that many of us don’t sleep much. I know in this house sleep is a constant battle. Yes I worry every night that my children will wonder off from the security of their home, and because of that I make sure there are alarms on all doors and windows in the house. Isn’t that what a parent does? We keep our children safe no matter what it takes. That is not specific to autism, that is specific to being a parent of a child. Honestly my children stripping their clothes off are the least of my worries in the middle of this night. We are not just existing, we are living. OUR AUTISM has shown us a new way to look at the world. Our Autism is not the end all of our children’s life, it is a different path we take to ensure they succeed in the ways that they can.

I won’t sugar coat autism either. There are days I scream from the mountain tops that I FLIPPIN HATE what autism has taken from my child. Those days, days like today and the majority of this week SUCK, but that isn’t every day.

Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.

This is autism.

I live my life in the moment, not “moment-to-moment.” Actually we have schedule and a routine that we follow. It is pretty much the same thing every day, but never the same day. If one of my children need to adjust something in our schedule or change where we are going we do it. I do ask a lot of my children as they learn to cope with the NT world around them, but I also allow them to have a “get out of jail free” pass when it is too much. Does this mean my life is lived in despair? Not a chance in hell. Do I have days where I am sad, where I cry, and scream this is not fair? Most definitely. Do I fear the future? Sometimes. I worry that my child will not be able to take care of himself and wonder who will do it. Will his older sister take care of him, who will take care of my youngest if she can’t do it herself. That is part of autism or any developmental delay actually.

AUTISM SPEAKS DOES NOT SPEAK FOR OUR AUTISM! OUR AUTISM SPEAKS FOR ITSELF! 

I speak for my children, I speak for my students with their parents, and I will not allow anyone to say my child is missing. I will not stand quietly while Autism Speaks instills fear of my child into those around him.

Will you allow Autism Speaks to speak for you and your autism?

I have taken quotes from the original post at Autism Speaks. To read the full post please visit: http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action

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.