The good, bad and honest about autism…

Autism + Self-Care

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For the past year and a half I have been facilitating a parent support group called the “Not So Typical Autism Support Group”. The name says it all.

It’s a space for autism moms and dads to focus on their own well-being. And yesterday we explored self-care.

A topic that I feel is frowned upon by society because it’s what some people relate to selfishness. Society and it’s completely shrewd standards.

What should be acknowledged and respected is the amount of patience and sacrifice us autism caregivers deal with every single day. My daughter is completely dependent on me. Completely. Without direct care she wouldn’t eat, drink, bath, dress, groom, exercise, clean up after her accidents (she’s incontinent), sleep (she will not do so without being lied down and tucked in), protected from the carelessness of others (she swallowed Saran Wrap while in a home health aides care)…drained yet? Sania is eleven years of age. And the older she gets the more she will need care. Her weaknesses have to be my strengths. I have to be all the things she isn’t able to be. And it gets tiring. Exhausting. Annoying. Upsetting. I am human. And humans burn out. And burn out leads to poor health conditions. And poor health conditions leads to the inevitable…an early grave.

Self care is the root of stability here. The “reset” button needed to help me start anew. To give my child everything she needs to survive. And so, putting myself first is exactly what needs to happen, all the time.

Autism moms and dads, no one will care for our children the way we would. On the same note, no one will care for us as we could. My external peace, happiness and my ability to lead within my community is very rewarding. But taking the time to do things for myself is more rewarding. It fuels my passions and strengths. At the core of my being–my internal being.

Put yourself first, go to the spa or take a walk in the park. Anything you love doing, do more of it. Because no matter how much you give and do for anyone else, it will drain you in the long fun. You can not be the absolute best for others if you aren’t the absolute best to yourself first.

Until next time XO,

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Yesterday was quite a day. I’m in crunch mode as I put the final pieces together for an annual fashion I produce benefitting Hope 4 Autism. But I decided to take time out to enjoy lunch with my family. My huge, dysfunctional family. We went out for lunch and not even half way through appetizers, profanity and name calling began. In a public restaurant might I add. It resulted in me canceling my order and calling a taxi to go home. Now, before anyone goes off in a fit–let’s be real here. Disfunction happens within every family. Every single one. Despite the level of extremity or how often it occurs, it happens. I will not go into detail as to what happened, how it happened or why (though the “why” still has me a bit discombobulated)…because that’s irreverent. What’s important is what I took from it. You know…the everything-happens-for-a-reason, lesson.

I had Sania with me, in her wheelchair (because her tolerance with walking is unstable and unpredictable these days). Irony is, I actually planned not to attend because I didn’t want to struggle with her wheelchair, but decided to take her. I’m glad I did. When we left the table to call and wait for a taxi, I looked down at her. Her face was completely unbothered. And suddenly she smiled. Which made me smile back at her. That moment, I felt what purpose the experience had served. It doesn’t matter what you’re going through, treat others with respect. Even if you don’t agree with them. Sania has taught me so much. Despite her inability to communicate. All through physical expression. We made it home ( surprisingly and thankfully our cab fare was only $13.50). The taxi driver was very helpful. He got out to help me with Sania and her wheelchair.

Once I settled in, I noticed how content Miss. Sania was in her bedroom. She was so happy, just playing alone. So I joined her. This kodak moment says it all.

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I’ve decided, in our world, autism is nuero-typical (normal), and nuero-typicals are abnormal. I want to be more like Sania. In a perfect world, all of us are.

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I caught Princess Sania, smiling for the camera (which rarely happens).

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I usually get pictures like this

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No complaints here. I’m happy to have caught her smiling. She is my absolute everything. Motivation, inspiration, determination and headache (more often than not). And I love her. For teaching me all there is to know about unconditional love.

Much love, hugs and kisses from this Uncensored Autism Mom,

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It’s Autism Awareness Month. Sharing my story in the video below. Warning: May cause extreme emotions…

Every year I publicize and publish this video. Much has changed since I first created it (dad is back, her condition has worsened). We’re still happy people.

20131102-102656.jpgYou know when something happens to you and you can’t really make sense of it, how overwhelming that can be? Autism is a hell of a disorder. One that changed my life at one point for worst….today for better.

The realization that your entire life probably will never be what you thought it would be…

The unhappiness and helplessness you feel when you realize you’re “ideal” is nothing close to your ideal ideal…

Then things get worst. More bad news hits the surface. And then it hits you…

I could be living this life for the rest of my life.

Why me?

Truth is, no one can answer that question for sure. What I can say in response is the cliche “everything happens for a reason”. My daughter has severe autism (nonverbal, incontinent, needs total care), and just this week received additional diagnosis of Cerebral Palsy and Seizure Disorder.

I could be pissed at the world, question God’s reasoning behind it, feel unhappy and helpless…but for what?

Weigh the pro’s and con’s…good and bad…happy and sad. Identify and label them so you can deal with them in a way where you are in control and not the other way around.

She’s alive, my heart melts when she smiles her beautiful smile and when she moves her head towards mine and puckers her lips to give me the sweetest kiss, when she randomly lays her head on my shoulder, how protective I feel of her and how much she makes me love being unconditionally in love. My daughter has taught me everything I know as far as being more patient, loving, kind, affectionate, understanding…she gives me life. If I could be anywhere in the world, I would choose to be here.

You see, my cross here is focusing on all the good that comes out of the bad. For every bad thought I think two good thoughts. For every downfall and discouragement, I pray. If religion isn’t your thing, focus on the thing that is– as long as it encourages you.

I encourage you to have hope and faith. Simplify your troubles by highlighting and focusing on your blessings. See the good in the bad and make that your priority.

Uncensored Autism Mom,

Carmen Veal ūüėČ

Ni and mom 2012My daughter, Sania, was diagnosed with autism at the age of 4. The challenges I faced as a result led to me battling a difficult period of denial and isolation. This state lasted for an entire year before I realized I had to stop feeling sorry for myself, accept the condition for what it was, and turn my test into a testimony.

I searched for groups that could help me overcome the struggle. I researched ways to make life with autism easier. I opted in for autism books that I thought would change my perspective on autism, only to discover more often than not, it made me feel much worse.

Throughout my journey with autism thus far I’ve learned the most important thing about caring for someone else is caring for oneself, first. Since this discovery, I’ve stepped forward to applying the skills necessary to do so.

Since I founded Hope 4 Autism, Inc. at the age of 24 my ultimate goal was to build a stronger autism community that promotes the importance of understanding and self love. This applies not only to autism caregivers, but to relatives and friends of those affected by the disorder. I will continue advocating for the cause, collaborating with professionals who support my vision and bring it to life, developing programs that makes life with autism more accepting and supporting families across the world. We are all in this together!

XO

Uncensored Autism Mom,

Carmen

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20131010-100808.jpgBeing a mom to a child on the autism spectrum and Founder of Hope 4 Autism, Inc. one of my primary focuses is on being an active advocate for the cause. I was eager for the opportunity to try out the prepaid Autism Awareness Visa Card from card.com. What I love most about this card is it serves as the perfect conversation starter because everyone knows someone with autism.

My autism awareness card is used primarily¬†for my daughter’s expense while in her nannies care. It’s a much safer option than using cash. Additionally, it is really easy to use–from activating, adding money and using as you would any debit card.

What better way to spread awareness of autism than by making purchases with an autism awareness debit card? I‚Äôm certain you can think of many, just be sure to add this amazing option to the mix. It’s free,¬† offers direct deposit and many more awesome design options to choose from! Order your prepaid autism awareness debit card and learn more by visiting www.card.com.

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