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.

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.

“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. 

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?

 

This is me

Imagine a world where nothing matters, you could do anything. You thought you were invincible. Money could be spent without a thought to how the bills would be paid. Imagine a world where you were the best at everything and you needed very little sleep to get things done.  This world sounds kind of nice doesn’t it?

 Well this is mania – it’s my mania to be exact. It also comes with some very dangerous side effects. That money that you spent, you needed it to pay your rent or buy formula for the baby.  The things I think I can do because I’m unstoppable, well they have consequences as well. Those things almost destroyed my marriage more than once.  This phase can last for a few hours to a month or more at a time for me. Then comes the next phase … I crash.

 I fall into a bottomless pit of depression. It’s dark, it’s scary and most of all it is real. I’m not talking about sit around and cry type of depression. Oh that would be a piece of cake compared to what I experience.  When I hit this depression personal care doesn’t matter. If someone didn’t tell me to take a shower or brush my teeth I probably wouldn’t. During this depression I am not a good mom, I do the bare minimum to make sure my children are taken care of. Not because I don’t want to take care of them, but because I can’t.

 The dark world of this depression hurts physically, mentally and emotionally. I’m not good enough for anyone. I can list all of my faults to an exact measurement, even if no one else can see them. It’s during these depressions that I truly believe that the world would be a better place without me. I know how much of a burden I am on my family, and honestly when I am depressed because of my bipolar lows I know in my heart of hearts that my family would be better off without having to constantly worry about me.  

 As scary as those low points sound, they really aren’t the worst of it. It’s when you cycle back up into mania that it becomes dangerous. All of those negative thoughts you have during depression you now have the motivation to do.

My bipolar disorder has had a major impact on my life. It has impacted my family and those around me. It has led my husband to watch me attempt suicide and have to call 911 to have me hospitalized.  My bipolar disorder has led to my mother to question what she did wrong. She has had to sit in a doctor’s office and be told that without medications I would continue this destructive path.

With medications, which need to be adjusted every so often, I can be somewhat stable. Even that isn’t perfect. I still slip into nasty depressions and scary manias. This is my bipolar disorder; this is part of our life for better or worse. 

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.