You’re going to do WHAT?!?

My family has dealt with our fair share of death in the last 6 months. In January our grandmother died, 6 months later my Sister-In-Law lost her husband. When you are left to make the final arrangements for those you love or help those you love make final arrangements for their husband, it’s hard not to think about your final plans.

I had a very honest discussion with my husband and told him my wishes. We made sure that we discussed what would happen with all of our kids, but more specifically Lil Man and Lil Girl. You see the reality is is that there is a big chance that my younger two children will not be able to live on their own. They may need support for the rest of their lives. Should I expect that my oldest child (barring that she is of legal age) be responsible for her siblings that are 2 and 4 years younger than her? Should I demand that she be their caregiver and have to give up her dreams and ambitions in life? These are just a few of the questions that we have to face as a special needs family when it comes to planning for life.

Call it selfish, but I refuse to demand that my oldest child give up her life goals. If she wants to make that choice she can, but I will not force it. The reality is there may come a point, even before I die, that my younger two children may need to go into a residential program. That day is not today, but it may come in the future. We have started planning for this. We have applied for the MedWaiver, since the waitlist is well over a ten year wait. We have our letter of intent written, and will be starting a special needs trust fund in the near future. None of this is easy to talk about, but if we don’t what will happen to our children when we are no longer here to care for them.

With all the death that has surrounded our family lately we have also filled in family members on our wishes. They need to know. They need to have a game plan in mind should something happen to me and my husband. It sucks to do it, but it has to be done.

In explaining our choices to one family member, I was damn near shammed for my decision. I was told I shouldn’t be allowed to just “ship” my kids off to some unknown group home for them to live away from family.

You see, I didn’t come to my choices lightly. I didn’t wake up one morning and say “Hey I think I will just stop caring for my kids” None of us do.  We fight long hard battles, we fight with ourselves, we question ourselves, we even end up with the bruises to show for those fights. No one, even family members, has the right to try to make us feel bad about what plans we have put into place for our children. They do not live our life, they are simply the visitors who pass through it occasionally.

When I made my choices, I knew they were subject to change based on my children’s current levels of need. I will not back down from my choices, I will not defend them to people who do not live my life. I will stand by my choices and change them as our needs change.

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!

Hi my name is …

March 18th marks my 31st year on this Earth. March 18th marks 31 years that I was lost and confused about myself and my life. There were so many unanswered questions, so many misrepresentations of who I was and am. 

Well, almost 31 years that is. March 18th now marks the First year that I have answers and understanding to why things are the way they are. 

What am I talking about you ask? It’s simple really, yet complicated. 

All through my life I felt I didn’t belong or fit in. I mean I could morph myself into a certain group or find ways to blend in and hide in the shadows. But really it was exhausting, and at some point I just gave up on it. When I was 17 years old I was diagnosed with Bipolar disorder, borderline personality disorder, social anxiety, and a few other disorders. They gave me a bunch of medications and I basically walked around like a zombi for the next 8 years. I couldn’t take it anymore. I felt like I was a shell of myself, who ever that was. 

I came off all the meds with the exception of my mood stabilizer for my bipolar disorder as it was the only one that seemed to help. I still couldn’t do social situations, I literally just shut down and couldn’t function. I hadn’t been able to hold a job, I had no friends, my relationships were unsuccessful and needy at best. 

In 2008 my lil man was born. In 2010 he was diagnosed with PDD-NOS, part of the autism spectrum. It was at that time things started making sense to me. After following the words of two other Autism Mamas, Erin (Mutha Lovin’ Autism) and Karen (More than just a diagnosis – our journey), I took my suspicions to my doctor. After that appointment I walked out of his office with a better understanding of myself.

Hi, my name is Erin and I’m an aspie. But I am also a mom, a friend, and a teacher. The diagnosis didn’t change me or really anything else other than explain why the medications didn’t work and why things have always been the way they are. The truth is I am just me and a diagnosis didn’t change that. 

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.