Rotten to the Core; The implications of Common Core on children with Autism
I received an anguished letter from a mother of a child with autism. She here describes–very movingly–her efforts to help him and the efforts of his teachers to help him. And when she reaches the point where he is assessed by New York’s new Common Core tests, she is in a rage. The New York State Education Department says he is a failure. She knows he is not. She knows how hard he has worked to achieve and learn. She knows how hard his teachers have worked on his behalf. My child, she says, is not a test score.
Every parent, teacher, and administrator should read her letter. So should Commissioner John King. And so should the members of the Board of Regents. See your handiwork. See what you have done.
Here is her letter:
My son is not the ELA or Math score…
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I am always completely astonished at the sheer generosity of complete strangers but nonetheless when it happens it definitely gives me the warm and fuzzies. I had been working on putting together this blog but just wasn’t satisfied with the look and feel of it so I went on a google image search quest to see if I could find a picture for my header that was a more accurate depiction of how I viewed my life and more specifically one that illustrated how I felt about my boys.
What I found was absolute perfection because it was really like I had found my life imitating art and I just knew this design, which I am proudly displaying on my blog header, was exactly what I was searching for.
I was so thrilled that the page that featured the design also linked me to the website of Anne Kelley, the artist and mastermind that created this design. So I scanned her site looking for some type of contact information to attempt reaching out to her. Jackpot! I found her email address and sent her a letter in which I told her about my boys having autism, that their nicknames are “Robot” and “Godzilla” and how her “Robotron” design was friggin AMAZING and that I had to find out if there was an inkling of a possibility if she would authorize me to use it as the header of the blog I was attempting to get off the ground.
I didn’t have much expectations if she would even respond to my email let alone allow me to display her art on my blog so I was pleasantly surprised when she actually wrote back and was willing to allow me to use it. However, there was a catch. Apparently she designed “Robotron” for a contest that Shirt.Woot was running which she won and they made a T-shirt out of it called “Robotron Wreaks Havoc“. Well that meant that Shirt.Woot owned the rights to the image but, incredibly, Anne went above and beyond and contacted the proper channels over at Shirt.Woot to see if they would allow an artist exemption which would give her the authority to grant me access to the design without any worries of copyright infringement.
When I read Anne’s email telling me that they said, YES, I literally jumped up from the computer and did a little happy dance because I was completely stoked. Anne was so kind and she even took her generosity to another level by creating the logo to depict the title and tagline of my Robotzilla blog. She also worked on adjusting the pixels and size so I could have an amazing header that displayed her art in its full glory which I’m so grateful for since there is no way I could have done it on my own.
So I really owe the very talented and wonderful artist, Anne Kelley, a tremendous, sincere, from the bottom of my heart, THANK YOU!!! I also need to send my gratitude to Shirt.Woot for allowing this to come to fruition. Many, many thanks all around.
We are swiftly approaching the one year anniversary date of when my little Robot boy was diagnosed with Autism. With that in the back of my mind I cannot help but reflect on what a cluster-fuck this past year has been. It’s no wonder I have had such a hard time even beginning to construct a sentence to put down here because so much has happened that I don’t even know where to begin.
A couple of months ago I had a conversation with a friend and she stated that she has witnessed me change dramatically over the past 2 years. I have to admit hearing that I had changed in a negative way hurt and her words have resonated with me ever since. I didn’t bother to ask how she perceived my transformation from who I was when Robot was just an infant to who I am presently because deep down I all ready knew what she meant. As painful as it was to hear I just knew.
I have grown to become extremely sensitive, bitter and resentful. There has also been a gradual but drastic decline in my self esteem. I use to be so confident and self assurred but I am just a shell of who I once was. I am now riddled with self doubt and inadequacy. I question every single action I take and think about all the inactions of others.
These are obviously not the type of charachteristics that one finds appealing and would definitely not boast about but that is where I am right now. I feel like I have been in the inner most bands of a perpetual hurricane for over a year now. I feel like I have been tied behind a mack truck speeding down the freeway at 100 mph and now I am left dizzy, disorientated, bloody and bruised. I am broken. I am extremely lonely. I feel so isolated and disconnected from the world that exists beyond the four walls that surround me.
I can barely breathe most days because there is no air and without oxygen the panic engulfs every fiber of my being and I become immobile and helpless and every plea for help and support falls on deaf ears. How many times do I have to experience a breakdown before someone intervenes and gives me the strength and support that I need to continue moving forward? How much louder do I need to scream “I NEED HELP!”? I’m drowning here gasping for air but nobody is throwing me a lifeline to reel me back in.
Although in many respects this can all be linked back to the suckerpunch of my two babies receiving Autism diagnoses within three months of each other but it is just that. A link. It is only the stem from where these feelings are manifesting from. The root of my problems is largely due to my disappointment in a myriad of failures I perceived to have experienced over the past year.
How about I begin with the State of Florida whose team of Early Intervention experts failed my son by blindly turning there back on the elephant in the room? He lost months upon months of precious therapy and Early Intervention due to a combination of incompetence and an agenda to save money. If I didn’t put on my boxing gloves and go straight to the top of the food chain in Tallahassee he would not have received an ounce of therapy. I began seeking their help last March when Robot turned 2 years old because he was beating his head into whatever surface he could come in contact with. I sought their help because it was clear, at minimum, he had a speech delay. But he was denied services based upon their assessment tool and adamently refused to retest him with a different evaluation. I got the job done getting him into the program but my kid missed out on 6 months of valuable therapy so yeah I’m pretty pissed about that because they failed him.
I am also begrudging from the plethora of broken promises by so called “friends” who offered their help and expertise the exact day that Robot received his diagnosis but failed to deliver anything other than excuses. It is like I am living in the twilight zone because our lives are littered with Behavior Analysts since my husband, Justin, is employed at a non profit company that provides residential and behavioral supports to the developmentally disabled so we know people who could help us navigate this maze. People who promised to help us. People who had good intentions, I’m sure, but when it came time to deliver those promised services I heard every excuse under the sun as to why they were no longer available. I am stark raving mad that they didn’t follow through. I am disappointed as hell that these “friends” could not live up to their promises when they were bonded to their word that they would help us in everyway they possibly could.
I was duped into moving away from my home and friends under the false pretense and expectations that the move would be positive because it would provide me with more support from family and ultimately some respite which to date has not happened. To make matters worse it has been nearly 10 months since moving here and I am so alone. I have not one friend here that I can lean on for support. The one person that I made a connection with just moved out of state a few weeks ago. I have reached out to other moms from the support group but sadly the phone calls and text messages are never reciprocated. Friendships must be a two way street and being the new person in this place you would think that somebody would extend their hand and say I am here for you. You would think.
You would think that living in very close proximity to family members, as in they live in the downstairs portion of the house, they would be there for me. You would think that hearing your two autistic grandchildren having hour long meltdowns simultaneously that something might motivate them to offer some assistance when I am alone and have no other alternative but to try to handle it on my own. At what point will somebody step in and say “What can I do to help you?” Why is it so difficult to just offer some help when the shit hits the fan? Why isn’t anyone coming up to say “Hey, you know what? I would love to take the boys for an hour so you can take a shower?” I am just an afterthought. Providing me with some much needed respite, compassion and support is not even on anyone’s radar and I am so inexplicably hurt by this.
Why wouldn’t I be resentful and feel scorned after experiencing all of that? I am only at the very beginning of this long journey raising two autistic young children and need some sort of support system in place or I will end up failing myself and my children. I’m in survival mode at the moment but I can’t keep that up infinitely.
So much has happened.. I suppose starting here with my heart on my sleeve for all to see is a good place to begin.
“Everything will be okay in the end… if it’s not okay, it’s not the end”
My Dearest Friend,
Please pick up the phone. I beg of you to just give me some kind of signal that you are okay. Your phone call to me this morning has me tremendously worried. We have been on this ledge a time or two and as I held your hand I was able to talk you down before you tested fate and took that leap. But today was different. The urgency and pain in your voice was so thick it was palpable. Your tears stung my face as you cried and sobbed calculating how to get out of this hamster wheel of misery you have endured over the course of your entire life. I hope that I am not too late and my words reach you before you do the unfathomable. I did not have the words at the time. For the life of me I could not think of how to make this better for you. I offered you what little I had to give but you seemed to not hear me. I hope you can still hear me.
You are NOT the only one whose heart has been shattered into oblivion time and time again.
You are NOT the only who is wearing a lifetime’s worth of anguish on their sleeves.
You are NOT alone when you bury your face into your pillow at night and cry yourself to sleep.
You are NOT the only who has lost faith in humanity because you feel like everyone has fled and you are utterly alone in your despair.
You are NOT alone my friend.
I know all too well what it feels like to walk on this delicate tightrope we call life. I understand what it feels like to scream at the top of your lungs desperately calling out for someone, somebody, anyone to come to your rescue before you lose your balance and begin to freefall. I feel your pain as you yearn for somebody to reach out to you.
To support you.
To love you unconditionally.
To tell you how beautiful you are.
To show you how much they value your very existence.
To hold you so tight and never ever let you go.
To admire your strength and tenacity for continuing to fight even when you are riddled by sheer exhaustion.
To be accepted as nothing more, nothing less than simply you.
To have someone breathe life back into you.
You are NOT alone. Rescue is possible. Find the ability to forgive yourself. This is not your fault. Break the chains that are tying you to the ground. Liberate yourself from this viscious cycle of abuse and self injury so you can come back from the depths of hell to rise above the ground. Your pain is real. But hope and help are also very real. Don’t let this be the end of your story. This is not your time. However it is time for recovery. I’m not giving up on you so I beg you to not give up on yourself.
You deserve to see what better days lie ahead of you. Love yourself. Help yourself. Just don’t hurt yourself.
Pick up the phone.
My blog has sat empty for months because I am a bit of a perfectionist and I wanted the formatting of the template and theme complete before I began to write the million things swimming around in my head. However, in honor of World Autism Awareness Day I have decided to take the plunge and begin the blogging journey in hopes to win the iOS app I linked to above which Smart Apps for Kids is hosting.
With two young autistic children and limited finances and ridiculous insurance ($15,000 deductible and $80 copays) we need all the help we can get because supplementing therapy outside of what little they offer through our local Early Intervention program and the school system is not a reality for us which is absolutely heartbreaking as a mom. I feel like there is so much more I could be doing for Robot and Godzilla and there is a huge question mark that hangs above my head and follows me everywhere on whether we are doing enough for them. All I hear is “Tick, Tick, Tick” as if I am in a race against the clock since research proves how important Early Intervention is.
Luckily, we received an iPad2 as a gift for Robot and it has helped fill in the therapeutic gaps that he would have otherwise been missing out on. The iPad and iOS apps we have acquired has served as a gateway to the breakthroughs we have witnessed with our little Robot boy in his expressive and receptive language and we have seen drastic improvements in his fine motor skills as well. I am a huge advocate for using technology, such as the iPad, as therapy tools to facilitate learning and growth in many skill domains for children with special needs. I have seen first-hand just how beneficial this device is and I feel extremely lucky to have it at our disposal for educational and entertainment purposes for the boys.
Ron and Deanne over at Smart Apps For Kids have developed a wonderful website with incredible app reviews because they are very selective and critical when evaluating which apps they stand behind so there is little reason to doubt if the app is actually worthy to purchase. I am definitely not raving on and on about Smart Apps for Kids to suck up to better my chances of winning. Well okay, maybe just a bit but nonetheless they have put together a stellar site and are doing giveaways on a regular basis plus they always showcase a Free App of the Day which they hand-pick. Between the top-notch reviews, free apps and giveaways this is definitely a site to bookmark and subscribe to. I find myself visiting both the website and Facebook page quite often so I don’t miss out on any of the fun which is probably more than I would like to admit.
I guess this is where I need to confess that I have a problem. I am an addict. An iPad app addict. The funny thing is about 98% of the iPad is all kids educational apps. I have Facebook, Twitter, Pandora and a handful of photography apps for myself and that’s about it. But the iPad is for the kids so naturally mommy wants little Robot and Godzilla to have the apps they need to foster their abilities to learn and grow to aid in overcoming the challenges they face having Autism. Even so, I just cant help myself and have more kids apps downloaded than the iPad has storage for. Some may say it is a bit excessive but I look at it from the point of view of that we have access to apps to accommodate their educational needs as they grow. Justified! 🙂
With that said, please wish me luck. More importantly, I really appreciate the support and awareness being shed on Autism from the app developers who generously participated in the app party in Honor of World Autism Day. These developers deserve major kudos’ because they have deeply discounted apps we Autie/Special Needs parents want and need for our children or made them FREE. That speaks volumes about the character of the participating developers. If I could hug every one of them I definitely would because they are simply amazing. Enough said!
So there you have it. My first official blog post which I dedicate to Ron and Deanne. Don’t worry, even if I don’t win I will be back to continue blogging especially now that I got over that initial OMG WHAT AM I GOING TO BLOG ABOUT phase since they opened the door for me to walk through to begin channeling my thoughts, emotions and random junk that goes through my head to funnel into this blog.
Now go check out Smart Apps for Kids and I promise you wont be disappointed!