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.

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Choices

Do you ever have days where you just don’t feel like you’re doing enough as a parent? That some how you are failing your kids?
I know I have those days. In an attempt to not run and hide from everything when my life gets rocky I’m here to admit that I am having that kind of day.

I haven’t been totally honest with myself. I came off my meds for my Bipolar Disorder, I stopped taking my anxiety meds and my ADHD meds. I didn’t want a life on pills to be “normal.” But what is normal? Is it this feeling of failing my children at every turn for my want of not taking a couple of pills each day? Is normal not wanting to engage in life and slowly start slipping into a black hole? Why is it that I can make the decision to stop taking meds that will allow me to function, yet I can make the decision to medicate my 4 year old daughter so that she has a fighting chance in life? That is a contradiction if I have ever seen one.

I am making bad choices for myself at the expense of those that depend on me.

Yup, I feel like I’m failing my kids and myself today, actually this whole week. This post isn’t about attention seeking, rather admitting that I am human and that I can feel defeated.

Tomorrow is a new day. I will wake up and work towards being better version of myself that knows that sometimes there will be set backs and all I can do is try to make the day better than the one before it.Honestly that’s the best any of us can do.

See that is the scary part of dealing with complex needs in one house. My children depend on me, yet I am allowing my bipolar disorder and lack of wanting medications to determine how “good” of a parent I can be. Tomorrow I will take my meds, tomorrow I will call my doctor and be seen to get refills so that I can be a “good” mom, wife, and person again. Not for the sake of being “Normal” but for the sake of feeling like I can do it again. For the sake of being able to help my children who need me more than they can even begin to express.

Life happens, we make decisions both good and bad. The only thing we can do is learn from our decisions and work to make life better than it was the day before. It is up to me to change this path I am heading down. It is up to me to be there for my family and myself even when I don’t feel the best.

Slippery slope

I find myself angry today. Little things are setting me off. I find myself feeling all ragey and anxious.
Lil girls meltdown set me to tears, lil mans hate you and hide behind the couch routine crushed my soul today. Lil advocate’a inability to see her own greatness slowly burns out my flame.
I’m sliding down a very slippery slope. One that is filled with darkness and self hatred.

I find myself questioning my ability to function, my ability to be a good parent. I’m not engaged enough, am I too self absorbed at the moment to see the beauty that stands before me? How can I not look into their eyes and see the millions of smiles they hold?

This is the slope I’m slipping on. You may not understand it, you may even criticize me for being at this point, but it is where I’m at. This is when it takes everything in my to find even the smallest of ropes to hold onto for dear life. Because if I don’t I give in. I give in and give up. I’m not a quitter but damn do I wish I didn’t need to hold on so tight.

A dose of reality

I am strong and fierce. I hold my own and handle what comes my way.

I smile when the going gets tough. I laugh when life slams me to the ground.

At least that’s what everyone sees. Their eyes are blinded by my ability to hide what I don’t want you to see.

I yelled at the kids today because they wouldn’t get into the car. My routine is off and so is theirs.

I tuned out my family and hid in my room because all of these changes are coming faster than I can process.

My mornings are filled with meltdowns from a child who doesn’t understand not being able to go to preschool at 7 am and eating breakfast at home instead of school.

My son is done with school, at least in his mind, so we have meltdowns because he has to go.

My world changed when I walked the stage and graduated this week. My routine is off and I’m having a hard time coping.

I’ve turned to my old coping skills and my husband doesn’t understand. My children do not understand. The world around me does not understand.

The world around me sees a smiling face and a mom ready to take on the world. Yes I have learned to cope and blend with what society wants me to be, but right now I can not do it. Blending is too hard, I can’t be the smiling face and I’m not ready to take on the world.

I just want someone to do it all for me and let me hide from all of my social responsibilities for a little while.

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!