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Thursday, April 24, 2014

There's No Business Like Autism Friendly Show Business

Being a parent of Autism you find yourself in situations where your brain is constantly thinking about staying a step ahead of your child.

Whether it be an event, Dr's appointment, store, etc. We walk into the situation and instantly scan the room and everyone in it. Then the wheels turn rapidly and our minds begin to race. Things run through our head like, the noise will hurt her ears, this crowd will overwhelm him, Oh dear there are a lot of breakable things in here, there are a lot of young children who will stare at him when he makes his noises, where can we sit, if we have to leave quickly what's the best route out, please God let her stay calm, give him the ipad now, where can we stand so she can jump and pace, please don't let her hit anyone, oh there are a lot of people I don't feel like apologizing to all of them or having to explain today.

Those are just a handful of thoughts that run through our minds. As a result of this a lot of families who have children with autism avoid events because the stress of just entering a room can be so painful and energy depleting. I can not count how many times I have left birthday parties, shows, family gatherings in tears. You feel battered and so alone as the world watches your child struggle through their Autism.

While being a parent of autism is so rewarding and fulfilling, this part I am talking about is so isolating. Everywhere we take our children, if we are brave enough, we are working to keep the environment all around us stable and subtly hush our kids from being themselves.

I won tickets to a Disney Jr Live performance from a lovely theater group named, TDF (Theatre Development Fund). These were tickets I didn't cringe at. My mind was at ease. These were tickets I could celebrate and be excited to take my daughter Grace . Why, you ask? Because the show we were going to attend was referred to as an "Autism Friendly" show sponsored by TDF.

I didn't know the details but I knew "Autism Friendly" meant we could go and she would be amongst an audience filled with families like us. There would be no explaining, no apologizing, no worrying. Just a show we could bring our daughter to, like everyone else in the mainstream world gets to do.

From the moment we entered the doors, it was like we stepped out of reality into this magical place where we were all accepted. I watched as a girl spun in circles and a boy toe- walked to the line. No one stared. No one reacted. Every adult had big warm smiles on their faces as well as the kids. There was such a positive energy that engulfed us all. As we proceeded to our seats there were tons of red-shirted Mickey eared volunteers. They were so kind and friendly. Every child they interacted with they knelt down to eye level and engaged in as much conversation as they could get. They were so helpful and put a great vibe for the entering process. They were carrying around bags of sensory toys and ear plugs and graciously handing them out to every kid they could. Grace loved the little "fidget" she received. (we call them fidgets, because it helps keep our kid's hands busy so they can remain calm and/or seated in a stressful situation). They also had advertisement cards of a list of restaurants that were going to be "Autism Friendly" that families could go to after the show.

We anxiously climbed more stairs, just thinking we were going to be directed to our seats. As I reached in my bag for our tickets, I lifted my head and we were greeted by more genuinely happy Mickey eared volunteers. There behind them were blue mats on the floor with bean bag chairs and every soothing toy imaginable. They had a sign designating the area as the "Quiet Area". Now a lump began to form in my throat. This was so thoughtful and so helpful. Imagine how amazing  it would be if these quiet areas were in places we visited in everyday life? After the quiet area we walked past the "Activity Area" , where there were fun stuff for the kids to do after transitioning out of the "Quiet Area". I was speechless. I never felt so at home in a public place as I did at that very moment.

We quickly got to our seats as Grace and her friend dragged us through the calm crowd of people. As we got them settled and fed them their snacks, I closed my eyes and listened to all that was around me. I heard parents speaking in "ABA language" (ABA is a behavioral therapy widely used on those with Autism) to their little ones, I heard stimming, I heard laughter, I heard high pitched vocalizations, I heard low pitched vocalizations, I heard a room full of vibrant children with Autism. I heard a room full of acceptance, empathy, and compassion. Mostly I heard happiness and fun.

As I opened my eyes I saw Grace in a way I haven't seen her in a long time. She was relaxed and organized. The show began and she jumped from her chair and her smile lit up the room. The lights stayed on so everyone felt secure. The sound was lower than a typical show so our kids felt safe. There was another little girl standing as tall as could be on her chair, no one said a thing. I think we were proud her parents could be at ease and let her get her chair standing out of her system. The little girl behind me was kicking my chair, and as the mother went to apologize, I looked at her and said "Not today, you don't have to be sorry today!" Her eyes smiled at me and she nodded. There were kids with their hands over their ears and silencer head phones on, no one stared or even questioned it. We knew why.

For 90 minutes the world was ours. It was a world strategically designed for all with Autism Spectrum Disorder and special needs. It was how I wished the actual world could really be. I never saw so many people in our situation or a similar one, all together in a room at ease. When you have Autism or any special need in your life, you become apart of this community, of accepting people. It's a community where you can look at another smile and know exactly how they feel or what they are thinking.

As we all walked out of the Madison Square Garden, it was as if no one wanted to leave. A lot of families lingered and were just getting a fill of their last moments in our bubble away from society.

I am so thankful to Disney Jr live and all of the staff and volunteers at TDF, who went above and beyond for our families. They planned everything so perfectly and I saw huge successes amongst many families. They made it easy for us to go somewhere and just simply not have to worry. This event was not only about Disney Jr, it was a family outing I will remember always and cherish in my heart. It was an outing that I cried happy tears on our way home, instead of tears of pain and feeling like I have failed as a parent.

Groups like TDF give us more than a show, event, or an experience. TDF gave me hope and acceptance, with no questions asked. The entire day was more than I could have ever asked for my daughter and our family. I felt so honored and so blessed we were able to be a part of it and I was picked to write about it. We need more of this in society, more events and more groups. Events like these are so important to families like mine. We need an "Autism Friendly" world!

Thank you TDF I will keep this memory and great experience tucked in my heart forever.

**SIDE NOTE not only were there coping tools for our kids on site, on their website they had links to social stories and ways to help our kids prepare for the show!! Genius**

*AS STATED FROM THEIR SITE

TDF is a national not-for-profit performing arts service organization that serves both individual productions and their potential audiences. For more info visit: www.tdf.org
Mission
Theatre Development Fund, a not-for-profit organization, was created with the conviction that the live theatrical arts afford a unique expression of the human condition that must be sustained and nurtured. TDF’s twofold mission is to identify and provide support, including financial assistance, to theatrical works of artistic merit, and to encourage and enable diverse audiences to attend live theatre and dance in all their venues.
Company Overview
Created in 1968 to help an ailing New York theatre industry, TDF has grown into the nation's largest not-for-profit performing arts service organization. Our discount ticket services -- TDF Membership and TKTS Discount Booths help make theatre, music and dance accessible to more than 2 million New Yorkers and visitors each year. TDF's Education programs introduce theatre to thousand of students each year. TDF Accessibility Program (TAP) makes theatre accessible to those with physical disabilities*


Please check them out on Facebook and give them a like ;)  Click Here TDF



 


 
 
 
 
 
 
 
 

 
 

 

 
 



 





Tuesday, March 25, 2014

We've Lost Her Again...

She has seeped into that world of hers I deeply fear. It's that world she goes to, when our world has failed her. Our world no longer feels safe to her, she has no security and doesn't trust anyone around her. When she comes to our world it's usually with stimming, scripting, crying, screaming, high pitched vocalizations, manic behavior, ticking and that unintelligible language she resorts to.

She has clarity at times, but it diminishes in minutes.

Truth is, I knew this was going to happen, I knew it, and something in me remained silent and decided not to follow my gut.

Grace was placed in an inclusion class at the beginning of the year, and I knew it was not the appropriate setting for her. She was coming from a class of 9 children on the spectrum with 1 teacher and 3 assistants. There was absolute control in that classroom. That was her life for 3 years. That was all she knew.

Entering kindergarten my school district thought she might do well in the inclusion class, 17 kids, a special ed teacher half the day and a 1:1 for Grace. I knew it was wrong for her, I knew it all along, and I said nothing. And here we are searching for a new school for Grace.

I think when everyday is a constant fight, there are some moments when you just don't have any fight left in you. Maybe apart of me hoped and wanted to believe she could handle the bigger class with the typical children? Maybe I just wanted us to feel normal for once? But I knew in my heart of hearts...it was going to backfire in my face.

Everyday I wake up with anxiety. Will she have a good day? Will the school call me? Will she hit someone? Will she hit a peer? Will she injure herself? Will the kids laugh at her?

From the moment we drop her off until the moment I pick her up these anxieties and fears race through my head. It is almost a sigh of relief when her school day is over, because it is one more day closer to the end of her school year. If the behaviorlist walks her out, my heart drops, because that's the sign of a very unsuccessful day.

I can't believe we have lost her again. Everything we have worked so hard for is gone. I am not sure what she learned in kindergarten this year, but it taught me to always follow my gut and my instincts. I also learned to find my voice for her, and face the reality of the situations presented when it involves her education.

It took 5 people, 45 minutes, tears, screams, unintelligible language, hitting, kicking, scratching, coaxing, transitioning, carrying a thrashing 60 pound girl, to get her into school today

I felt lost as I held her fighting body. Ernesto looked like he was going to pass out from sadness and heart break. They told us to leave, they could handle it. Everything in my body wanted to scoop her and just take her home. I forced myself out of that school, into the car. My heart is still beating so fast, and the tears are just pouring out of my eyes. I feel helpless, because I can't help her. She is suffering and in that moment and many moments there is nothing I can do but just, WAIT. No child or parent should ever have to endure this emotional pain while dropping off at school.

After this morning I vow I will never let Grace down in this way ever again. I will do everything I can to make our world desirable so she can come back to us and trust us again. Whatever it takes, whatever I have to do, I will do it as long as I have to. We need to find her again. I need my girl back.


(DISCLAIMER:I will say her team is great, they have done everything and more for her. They have tailored her education in the best way possible and they are so loving and so patient with her. I am very thankful for all they have been trying to do. It is just not working. The reason being is the school is not an appropriate fit for her. She needs an appropriate setting for her needs.)



Wednesday, February 5, 2014

Because of Her Everything is Ok

My sweet angel girl,

In 2 days you will be 6. I have started this letter over and over but I can not seem to get through the first sentence without crying.

You are turning into this magnificent little girl. I actually have no words for how proud I am of you and how you WOW me on a daily basis.

I still can not believe you are turning 6! Grace, in the past 6 years, I have never seen a little girl stay so strong and never give up. And your WILL, I admire that about you, you have this WILL and passion for life like none other. I love to watch you experience the world, because you experience it in a way others can not even begin to try. You see every detail and every piece of what you are doing and you do it so effortlessly.

The bonds you have created with the people around you leave me speechless. You have this way with others. You touch everyone you come into contact with in such a deep compassionate way. You change people, you make the ones around you want to be better. You are my inspiration, you are the reason I have worked so hard on making myself better. I learned how to live, because of you.

I learned how to smile a true smile, I learned how to laugh a true laugh, I learned how to cry a true raw cry. You have changed me and continue to on a daily basis. As each day passes I am anxious to see what you will come out with next, or inspire me to do next.

From the moment we found out about your presence in this world, all odds were against you. Many of my closest friends told me not to have you and how having you would be the biggest mistake in my life. From the very first moment I heard your little heart beat, I knew different, because this wave of peace was constantly flowing through my body.

As you grew inside of me, so did people's negative opinions and judgments. Your Daddy and I didn't care, we walked with our heads high, and promised each other we would give you the best life possible and all the love we had. It didn't matter if you weren't planned, or we weren't legally married...that doesn't matter. What mattered and matters is YOU my Grace, were created from the greatest and strongest love possible. You were meant to be. You are a gift, and more than I could of ever asked for. I say it all the time, YOU rescued me, and I will remind you this every single birthday.


I look back onto when I was pregnant with you, and the people who supported me would ask how was I so calm with all the negativity, and I would answer, "She calms me, because of her everything is going to be ok"

And despite of what we have been through, little girl...

It is now 6 years later, IT is still OK!

I love you to the moon and back my boo bear, and as each year passes by, remember to hold onto your dreams and never ever give up because you can accomplish anything.

Love Always,

Mommy


 


Friday, January 17, 2014

I Was Gone for a Minute, but Now I'm Back

I have sat down and started numerous entries. A part 2 about my weight loss, about our big move into our new home, about my darkest day this months, but something was blocking me.

Grace has been struggling immensely at home and at school, between her meds, diet, and not being in her home for a year...oh and plus being on the spectrum. The past 2 weeks we are moving upward and onward and things are looking much better. So I guess a part of me is feeling more at ease share and blog?

I am getting off topic, as usual, FOCUS, blocked, so I have been blocked. Every time I would sit down to write, my hands hit the key board and there was no flow, just me pushing and squeezing mini thoughts past this huge wall that I couldn't see past. I realized what the wall was or is rather....'

It is partly that I have not been completely honest with my readers about Grace, and my biggest thing I strive for with my blog is honesty, good, bad, vulnerable, sad , mad...I always write honesty and never sugar coat.

Grace was diagnosed with Tourettes Syndrome, and we have been quiet about it. I am not sure why? I am having a hard time processing it. Why Tourettes too? Doesn't she have enough to deal with, doesn't she stand out enough already? She makes noises over and over and I cant stop them. There is nothing I can do. I cant tell her to stop.

When the doctor confirmed it, I pretty much knew the past year or so, but when kindergarten started her ticks have been through the roof. I am attributing it to the stress of being in an integrated environment coming from a self contained class room years before.

We threw her on meds without any questions. It was probably one of the most impulsive decisions I have ever made with her and the top 5 worst mistakes I have ever made as a parent. I put her on meds for me...because the ticks bothered ME. How selfish? I look back and I can not believe I did that to her...The meds made her worse it was like she was an addict coming up and down off of a high. She would sleep during the day and the afternoons, and when she was awake, it was like my Gracie was not even there. "But her ticking was gone." I thought to myself. Yea and so was her personality. Her meltdowns turned into psychotic episodes, a switch was off in her brain, the same switch that made her tick, but also that switch made her a functioning child.

Enough was enough, I waited 3 weeks and weaned her off the TENEX. Her ticks are back, but so is my Gracie. My girl is present, she is back to giving me a run for my money and back to making me laugh and want to pull my hair out at the same time. She is stable.

I feel so ashamed that every time she ticks, my heart drops, and I feel angry. I am so mad...Every tick is a reminder to me, I can not fix her. This is my biggest battle as a special needs parent...there is no band aide or cream or antibiotic to rid her of her ticks. I can't give her a lollipop and tell her to stop. I have to sit and experience it with her.

Last night, I could of slapped myself across the face. She was gulping and gulping over and over, and it was like nails on a chalk board. The madder I get, the sadder I get, because I feel like a monster. She is my baby girl and I should not feel this way. After she went to sleep I had some time to myself to reflect and gather myself.

I made tea and sat and just felt the guilt dripping all over me. I was so guilty...to ever feel this way, but I had to admit it to myself so I could move past it. I needed to break down the wall that was blocking me. The TOURETTES wall. It is OK to feel this way, we are all human. My denial finally faded. It's OK, I said to myself, It is going to be OK. I just was breathing deep...saying it is OK. With each breathe the anger, guilt, denial left me, little by little. My eyes closed and the tears came, but they were tears of healing and happiness...all these months I was held captive by these embarrassing feelings...and now I was finally free.

Her ticking doesn't affect her day...she is learning, she is happy, and she is thriving, she has autism, and Tourette's.

I forget, it is not about me. I constantly have to remind myself. It is about her. Her ticking is apart of her and if she needs to gulp 300 times in a row at the end of the night, I will sit by her and love her and be there for every gulp. I will try to heal the Tourette's for her, but not for me. And for now she is OK. So we have entered the beginning of our next adventure, Tourette's, and we will make it, because we always do. I know I will make it, because I have Grace as my daughter, and the lessons I learn from her every day make me stronger and better.


Strength. Love. Acceptance. Onward. Upward.

Four words that mean more than you'd ever know to me.