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.

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.

Judgmental stares

Dear Walgreens Employee and Shift Manager,

As Walgreens is a proud supporter of the Dan Marino Foundation 4th annual walk about autism I expect a little more from you in the area of awareness. However I should know better.

When my three year old daughter is having a melt down because she is fixated on a baby doll that she can not have at the moment it is really not your place or the time to look over your shoulder as the cashier to your manager and ask “Does your child act like that?”

You see, as I told you my child has autism. She is not reacting this way because she is a “spoiled brat.” Your unkind eye rolls are not going to change the fact that she is having a meltdown. This is not a temper tantrum. She is fixated on a baby doll. She is always fixated on a baby doll. It does not matter that she has on in the car or another 19 baby dolls at home to play with. She is fixated because all she plays with are baby dolls.

This mommy would love to educate you more about autism, but when you questioned her age and put her, by size, at four. I told you she was three and you rolled your eyes at her behavior. Well again I explained that she has a developmental disability and that while her chronological age is three she is functioning at the level of an 18 month old.

During a moment like this I am not sure what is going through your mind. What you think of my parenting skills or of how I should be treating my child’s behavior. My only focus at that moment is keeping my child from harming herself or others. I don’t have the time to educate you or any of the other three cashiers that are staring at my child and me.

In those four sets of eyes I am watched and in those moments I am judged, I am alone. I have accepted my children and the challenges their differences bring to the table. What I have not accepted is the ignorance that the general population has brought to the table. I have not accepted your judgmental looks and snarky mean spirited comments as the norm.

This mommy, will continue to educated the masses, but she will not be made to feel less by anyone!!!

Regards,

One pissed off mommy

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?