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.

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?

Sticks and Stones

Popular – of or relating to the general public (2) suitable to the majority(Merriam-Websters.com)

When you think of these two definitions, the meaning of the words they relate to, what comes to mind? Pop music, Pop Culture? What is pop culture? Well, simply put it is the “entirety of ideas, perspective, attitudes, images and other media that permeates the everyday life of society” (Wikipedia.com)

Our society needs a lesson in sensitivity. Lately more and more artists and tv shows are using stereotypes that hurt all the progress we have made in raising not just awareness but in raising acceptance. The most recent of this was included in the song Drake released ft, J. Cole. His lyrics continue the negative stereotypes that individuals with autism live with. Many outside of the autism community have said “it’s just a song” or “he’s just rhyming” but for those of us who struggle daily with meeting the needs and demands of a child with autism or of having autism ourselves these aren’t just lyrics and it’s not just a song.

Last month, one of my favorite shows on ABC Family made a remark about an individual being autistic due to his ability to remember a complex coffee order. Once again continuing the trend of a stereotype of  “rainman.”

For every step we take moving forward pop culture has a way of pushing us back three. Today’s youth look up to these artists, watch these TV shows, and hear the world around them. If we are to live in a world where everyone is accepted as they are, where our children have a chance to be accepted and be seen as more than some negative stereotype, then as a community we can not accept this as the “norm”.

There is awareness, that is evident by the fact that autism is showing up in more and more of today’s pop culture. We need education and sensitivity. We must demand that our children and adults with autism are given more of a fighting chance than they have now. We need acceptance of our kids the way they are.

There is an old saying “Sticks and stones may break my bones, but words will never hurt me” I beg to disagree! Actually I call bullshit and I call it now! These words are hurting our kids. They hurt each step forward we make. I say it’s time we yell louder and make these “Role Models” understand their effect on the world around them. Who’s with me?

The place where dreams come true

If you follow me on Facebook, then you already know that over the Fourth of July weekend my family was surprised with a trip to Disney World.  You also know of the major success we had with an unplanned trip. In the world of Autism unplanned trips and sensory overloads are not something that typically go smoothly. But there was a part I never put on Facebook. So here it is …

 

Disney – The happiest place on Earth,  the place where dreams come true, the happily ever after – In my mind all great marketing techniques to bring large groups of people together in one expensive place. This time however I found my “where dreams come true” in this trip.

 

Flashback to three and a half years ago:

Buggie was known as destruction. Everything he touched, he broke. He was rough and needed to feel and pick at everything. I can’t tell you the number of items we have lost to his “Destruction.” My mom and sister were frustrated with his level of destruction, much as we were in our own home. Before the age of 3 Buggie had successfully destroyed 4 computers and countless items in the house. He was not talking, he was not responding, he was in his own world most of the time. We went through so many hearing tests and to the ENT to deal with residual fluid in his ears, and still things did not get better. My family has always loved my son, and still do but he was never the easy to deal with child my oldest was. In September of 2012 we meet with a developmental pediatrician and were after many visits and multiple questions and observations we were given the diagnosis of PDD-NOS, or Atypical Autism. I was devastated. I had to accept what me and my dad had suspected from the age of 8 months old. My mom went in search of answers and cures. She spent hours on the internet searching for reasons this would have happened to my son. You see my mom has this thought process that she has to fix everything! At that point I didn’t want to fix my son, as I didn’t see him as broken I wanted to help him any way I could. The one thing that stood out in my mind from all that time ago was a statement she made “Maybe he will outgrow this.” I was angry. I wanted to scream and yell at her. I wanted to lash out and tell her how she didn’t know anything and that he would always have autism, that this wasn’t going away.

 

Fast forward to current time:

Through all of this she has listened to me vent and cry and ask why me. She has always spent a lot of time with my oldest daughter and will take overnight, but not my son. She told me it’s not that she doesn’t love him, it’s just that his needs are different. This too pissed me off.  I did not give her credit for her honesty and realize what she was trying to say was “I love him honey, but I don’t know how to deal with his needs.” For christmas this year my mom bought me an Autism Acceptance necklace that has a heart and the autism ribbon. On the back of the heart she had it engraved with “I wear this ribbon for my hero, Buggie.” I cried at this gift because it showed me she was finally accepting his Autism as part of who he was and that it wasn’t going away.

 

So how does all of this fit into our weekend of dreams come true? Well she spent the entire weekend with all of my kids. She walked hand in hand with my Son through Disney. She was always checking to make sure his sensory needs were taken care of. And my son in turn was in seventh heaven with my mom by his side.

 

This weekend taught me a lot. Mainly it made me realize that acceptance looks different for each person. It’s not that my mom doesn’t love my son, it’s that she isn’t sure how to meet all of his needs on her own. And  that is okay! Even I can admit that as his mom, I’m not always sure how to meet his needs on my own.

In the end all that matters is that we have tried and done our best. Our kids, regardless of ability, need to know that they are loved and taken care of.