wordless wednesday

wordless wednesday

Jumping our way to the pool

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Silver Lining

Education is a fundamental right for all individuals.  In Florida each child at the age of 4 is entitled to free VPK. This provides students with 3 hours a day during the school year of pre-k free of charge to families. Children are provided with instruction through approved providers, typically preschools/daycare.

Buggie is eligible for VPK this year. He also has a diagnosis of PDD-NOS, in other words he is on the spectrum. His IEP, Individual Education Plan, does NOT have accommodations for autism. This is a battle I have been fighting with the school board since our IEP meeting last year. He was one of many who have been lost in the system. This will not be the case this year when we return to our IEP meeting in September.

Buggie is “High Functioning.” He has partial eye contact, he is verbal but still has communication issues, and academically he is behind. We have worked countless hours with therapists and in home programs to help his functional skills develop. In the middle of this somehow he did not grasp the educational concepts that typically developing children have by this age. This is okay, we take it step by step.

Based on his level of functional skills, my Husband and I have made the decision to place him in a typical preschool for VPK in hopes to keep him with his typical developing peers. This decision was not made lightly, rather it was done after countless hours of observation and conversation. Finally by June of this year the decision was made. Now it was time to find a preschool who would accept him.

This seems like an easy task, yet it was not! My first thought was this will be easy, I will simply go back to the preschool he was in prior to diagnosis. He was last there when he was a year old, his oldest sister went to VPK there two years ago. This seemed like a no brainer for me. I went in, talked to the teacher and was told “We are not trained to handle his needs.” Well damn, I struck out. This was not a good start.  After I left the school, I called an additional 10 schools. Each one gave me the same answer, “I’m sorry we are not trained to handle his needs.”  This sounds so pretty when it is said this way. Yet I got the feeling that every school I contacted would say the same thing. These are the times I wish I was ignorant to the way the educational system works.

Family Central, an organization here in Florida, and the Early Learning coalition provide the VPK program. On their website they have information about inclusion in the VPK program and even better they provide FREE training to childcare centers on how to make sure their programs are set up for inclusion.  At this point I was mad. I was seeing red and was ready to report each of these schools for discrimination.  I couldn’t even find the “nice words” I tell my children to use. I wanted to be a raging bitch and make everyone understand that my son is amazing and they need to include him.

Today I called two different schools, both welcomed me for a tour. I went to the first school who said they would be able to accommodate my son’s needs. We walked in and lil man would not take his headphones off. The classrooms were cluttered, nothing was at eye level for the children and it was LOUD. I was having problems with the environment. Both lil man and lil girl shied away from the staff and were not very open to the idea. They were ready to get out before I could even finish the conversation with the school’s director. THIS WAS NOT THE SCHOOL.  While they said they could accommodate his needs and his therapist would be able to come to the school, there was little about this school that was sensory friendly.

We left, I felt defeated. I was at a loss. We  entered the second school shortly after. I must admit, I did not have high hopes for this school. No other school would take him and the only other option was too much of a sensory overload.  We toured the school were shown each classroom and they kids were allowed to explore the classes. They could touch the toys, meet the teachers, and even interact with the other kids. (Nope there was no interacting with other kids, but it was nice that it was an option.)  As the tour went on things kept getting better. Each classroom is equipped with a “chill zone” where children can go to decompress. There are visuals of emotions, calm down methods, and get this SESNORY items.  So at this point I am wondering if I have died and gone to preschool dream land.  We continue with the tour, we talk about logical consequences and then I am surprised with the training that their staff is undergoing. It is a training called PBS, Positive Behavior Supports. Really a preschool working with behavior supports. I’m in shock.

After the tour is over we talk about Buggies current needs and what will be needed for him to succeed. They are cool with this, then I meet the director/owner. Everything makes sense following this meeting. She was an elementary school teacher who went on to get her masters in Special Education. Now it all makes sense to me, this school is the perfect choice for my two younger ones. Not only am I happy with the school and the staff, but lil man is happy with the choice as well.

Maybe all of the “No’s” we had to hear were put in our path so that we could get to this school. I believe everything happens for a reason and that there is always a plan in life, even when it hasn’t been reviled to us yet. It is faith and trust that will lead me to the right decisions for my children.

Your worst enemy

Does your own thought process hurt you? Can your own mind limit the options you have avalable at any given time?

When my son was diagnosed with Autism I went through the stages of grief that many other parents have been through. The perfect life I had envisioned for my son was suddenly gone. I heard the doctors say what he may never be able to do. I wondered how in the hell I would handle with life had thrown at me.

I screamed, I yelled, I probably broke things, and I cried. I didn’t think I could handle raising a child who had such different needs from what I knew. I hated hearing the phrase “God only gives you what you can handle.” Seriously at this point I wanted to know what the hell anyone, including myself, knew about raising a child whose entire life would present with challenges that most people would never understand.  I CAN NOT HANDLE THIS!

In 2010 I found out I was going to have my lil girl. You see the thing about her is I wasn’t exactly happy about being prego again but I didn’t exactly do anything to protect myself from pregnency either. At this point I was back on medications and was told I would have to see a specialist because at 8 weeks into a pregnancy the medications I had been taken could harm the baby. Again what the hell was I being given that I could not handle. Of course the nice doctors gave me the chance to abort knowing what the risks of continuing could be. I COULD NOT HANDLE THIS!

7 months later I had a healthy, problem free, baby girl. She developed normally she slept well, was healthy, walked on time, ate everything in sight. The one thing she did not do on time was develop speech. She has language, she has eye contact, but no speech. She did start developing her speech after her second birthday but it is still minimal at 2 1/2.  Her behavior when she can’t communicate sucks! Yes I said it sucks. In my mind I scream I CAN NOT HANDLE THIS!

Today, as I type this blog, she sits in her rocking chair with her baby in her arms staring at the tv like any child would do. The words she wants to get out stuck in her mind.

The thing about “I CAN NOT HANDLE THIS”  is that everytime this thought comes into my mind I sink slowly into this black hole and start a pitty party for one. I won’t listen to the good, I only see the challenges that my younger two have and the challenges that our entire family has been handed.  My mind and thought process start dictating to me what I can and can not do.

In the end, the can’t turns into can because I realize when I am not dealing with the “I CAN’T” thought process I am already handling it. Maybe not in the best way, or the right way everytime, but I am doing it the best way I know how. Thats all any one can do.

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?

Why did you choose this?

This life we lead it’s not easy. I had a professor last semester, oddly enough for an Autism methods class, who told me she didn’t know how I did it. How I could choose to work in a field surround by autism and then go home at night and live a world full off autism. My answer to her was simple, I’m a great teacher. I know that sounds like I’m tooting my own horn, and well I am. Some people are naturals in the classroom while others must work on it. I did not know I would find my passion in autism. I too wondered, and still do, why I decided to live 24/7 in autism. There will be no break from it, going to work is still autism. 

If I’m really honest with myself the reason I want to work with children with Autism in the classroom and as an ABA therapist  started off with selfish means. I started this so I would be better equiped to handle my own chid’s needs. 

What I learned was pretty amazing. I could help other parents and their children succeed. I would leave a lasting impression on the world, not just in my own children but in others. 

I’m not sure how I will handle this. I’m not even sure how I handle it at home. The one thing I know is that I love doing it and all the stress and frustration that comes with it is worth it’s weight in gold.

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.