Wednesday, November 28, 2018

Create Space

As I journey further down this road, I realize so much. I become a different person, a shell of who I used to be yet filled with so much more substance than I ever thought possible.

I see things differently, I feel things intensely and I understand that things for us are they way they are supposed to be.

One way I have begun to find strength in this journey is to create space.

Space in mind.
Space in body.
Space in spirit.
It circles around a number of areas in my life however today, I focus on practice.



Practice:

Remove distraction. Embrace what you need and let the small matters subside.

Embrace challenge, be okay with having to work harder to reach a goal and be proud of yourself when you find that goal is reached.

Find joy. In small things, even if others might scoff at what you seem to find beauty in.

Choose happiness.

Accept responsibility.

Speak up for what you need.

Advocate.

Along this journey I have spent time in a matter and for me, that space is now abundantly clear in my practice of yoga.

What fuels you?

What moves you?

What motivates you?

In a journey as a parent, we to find something to give to ourselves, to fill ourselves, to care for ourselves.

This summer, door opened and though I wanted to rush in and feel the mat beneath my feet, instead I waited. For the right time. Upon return from an amazing renewing and enriching vacation, it happened, I set foot in the place that has become the greatest gift for myself.

It is a gift of community.

Each day I gather with some friends, some strangers and practice. Each teacher, unique in what they bring to the practice and the opportunity to embrace what is present in the room. Each moment I find that what I need is on the mat and being on the mat makes me a better wife, mother and friend.

In the past two days I have seen more beauty behind those doors then I do outside in the "real world". Behind those doors there were moments of security, strength and perseverance that you don't often see. There was love, compassion, kindness and joy.

In the classes I attended, the words spoken shared hope, simplicity and of course my personal mantra "you are enough".

So, if you are like me, living in the parenting world, with extra needs or not, take time. For you. To create space and find what you need to be the best version of self you can be.

Peace



Sunday, November 25, 2018

Hope, Three Tips for Having it With Extra Needs In Your Life

When my kiddo was first diagnosed with autism, it was amazing how many people "knew" autism from reading. Yup. That is correct, people who studied or read knew just what it was about. Let us be honest here. I am STILL learning. Daily. I am no expert, even with my own daughter I am learning each day however I will say those who make negative comments, only share negative stories do nothing for anyone, even themselves.

As a parent living this life, daily life is a challenge at times. We work daily to meet the needs of our child with extra needs and still try to juggle a family, careers, and a house full of life and expectations. The last thing we need is negativity.

Recently, I was at the Dollar Store. I am NOT sure if its my face, or my inviting smile (need more practice on my resting B*&^% face) people make comments. ALL. THE. TIME. Its been happening for years and honestly unless you hang with me a bit, the stories and comments seem unreal, however they happen. As this older woman reached over my order and started picking stuff up from the conveyor belt she asked me why I was purchasing an item. I explained we would use them for my daughter for her therapies. Long story short, she insisted I was bribing my child and not teaching her to live "normally" OH and my work was cut out for me and life would be a long, challenging road for her. Yeah. Thanks.

You see, we, as parents of kiddos with extra needs, we know all that. We hear all that from professionals, educators, heck, even each other. The LAST thing we need is some person with little to no experience telling us what we are working hard to do is bribery or inappropriate parenting. So, what do we need?

Hope. We need hope and support.

Here are a few personal tips for helping to give hope to parents of kiddos with extra needs, especially those of us in beginning stages or early years of this journey.

Offer support. Living these daily struggles is mentally, physically and emotionally exhausting. Outside the typical parenting stress, we have added medical visits, academic plans and often little sleep and daily struggles. Already today in my home, we have opened markers, colored couches and a few flop on the ground melt downs. Its not even 9 a.m. and we are already into a days worth of stress with a typical kiddo. So offer support. Invite us, mothers, fathers, caregivers to those moms nights out, to those events that may give us a break and remind us that the little breaks will allow us the ability to rejuvenate and go back. Don't be afraid to ask us how we are. Yes, you may get an ear full but truly, sometimes just venting allows us to learn to laugh at the struggles we face.

Remind us what you see and how you see our children growing. We are living in this life daily. We are struggling, sometimes each moment, to have faith, to have hope, to just breathe. Has it been a while? Do you see the growth we can't see because we are living this life? Recently in our house we had two amazing moments, first at school, when my daughter participated in her Thanksgiving Program, then this weekend when she visited Santa. Though she didn't make it the entire time in the event nor did she sit on Santa's lap, we had moments of success and hearing others tell me how proud of my child they were reminded me that others see how far she's come and many even have hope for her incredible future.

Finally, share the good moments of those you know who have found success in living life with extra needs. Seriously. Sometimes the internet and social media can be overwhelming. You see perfection in life and you struggle more than you should with the life that you have. First, identify that people aren't typically posting their worst "mom" moments online. Sure, there are a few exceptions but most are highlighting the amazing moments with family and friends. Second, look for successes especially in those who have families that may have struggles like your own. They are there. Celebrate them. Let those who share those moments know how it gives you the courage to keep pushing ahead, to focus on the future to continue to have hope for what is to come.

Living this life with extra blessings and extra stress isn't easy but you can still have hope. As we enter into this holiday season where we want the same memories and experiences everyone else has, remember this journey was chosen for us, it may be the hardest thing we have ever faced but if we allow others to support us, teach others how to accept us and call others to support us, this journey can do more than strengthen us and allow us to find blessings, it can do the same for those friends and family who are meant to help us have hope even with those extra needs in our life.



Friday, November 16, 2018

Giving Up

I'm giving up.

Yes. Truly giving up.

Why?

Its the best thing for my family. For myself and *maybe* for my child.

You see, the last two and a half years, I have spent countless hours behind the scenes learning autism, understanding autism, embracing therapies and learning not just how to parent a child with a disability but to educate a child with a disability.

I am exhausted.

No joke.

In fact, in recent weeks I recall what I thought parenting would be and compare it to what it is and wonder just exactly I ever assumed life with multiple children-let alone a child with a disability was truly going to be like.

So, I am giving up.

Lucky for my kids, not the parenting part but honestly, the education. The therapies.

Its time. For me, for my children and for our family.

Yes, I will run my child's programs set by her in home therapist daily but I am going to stop trouble shooting, stop losing sleep because she hit or kicked or bit and just love.

That is it.

Return to parenting.

You see, yesterday I spent over an hour in a cozy office with not just an administrator but someone I feel relates to me, my family and my life and strangely, one of the ONLY people I trust in the disability world.

Last year, I was rocked to my core as the organization I believed in, supported and would have given my left arm for left me reeling in a deep, dark, depression as my child's services ended and the organization closed down. Unexpectedly.

Although I will ALWAYS trust the therapists she had at the organization, I was changed. Emotionally, spiritually and in my desire to trust those who were leading my child to the best life she could possibly have.

There are a few others I trust, some that have known my daughter since her diagnosis, that still work with her today, one that she and I consider a second mother her team at school but honestly, this year with what we have faced I have struggled. A ton.

You see, as a parent of a kiddo with disabilities, you turn a child over to individuals you hope and pray love your child. You have to trust they do, even in the difficult moments because it will get difficult. You have to trust that your child will find strength in their support, academically, emotionally and otherwise as they will be with them almost as many waking hours as you will at home.

Its hard.

They cannot tell you the good moments and when you sit and stare at the difficult ones, when you get calls that your child required restraint, yet again (and I believe she does), your heart breaks. Your life is changed and you may even become emotionally a shell of who you were.

That is where I am.

Broken.

A shell.

Realizing I cannot fix this. I cannot change it and I have to live it. Knowing that it is okay to take time to accept and to mourn the memories you wish you would have. Its also okay to give up because perhaps if I give up my personally assumed role as behaviorist, educator and therapist, I will have more room to live as a mother, wife and friend.

I can only hope that giving up will allow those TRULY in charge of her education to shine and after yesterday's conversation, I am going to work to trust that it is just what is going to happen.

Tuesday, November 13, 2018

When You Are In A Rut

Sweet Little Love,
In the pouring rain I raced you to your bus.
You stepped on, looking, taking it in.
The smells.
The sounds.
The students, arranged differently from yesterday and still, apprehensively you went.

I turned.
I left.
I jogged away, afraid if I stopped I may grab you off that bus into my arms.

You see sweet love, I love you like a Mama Bear loves her cubs.
I fear for you.
I worry about you.

I stepped into the car, wet, from the cold rain.
I set my head down.
I sobbed.

Away you went.

I wondered.
I knew there were people who loved you but I wondered, "would love be enough?".
I tried to push the thoughts from my mind.
You were gone.
There was nothing I could do.

I thought of you.
Your programs.
I thought of how we didn't ask for this.
You.
Me.

Still, its here.
This life.
Autism.
A path unwritten.

I waited with baited breath.
The phone rang.
Once.
Twice.
Was it them?

No.
Your medications.
They were in.

It brought me back to you.
The night you were born, the days you first lived. The strange happenings.
It brought me back to you.
Your beginning.
The life that you lead until you changed.
I sobbed.
Again.

This wasn't the life I imagined as I rubbed my swollen belly and thought of the child you would be.
Still, we are here.

I have to trust.
I have to hope.
I have to have faith.

I love your teachers.
If I didn't, I wouldn't have sent you.
Day after day.
I promise.
I hate to hear of the struggles you had but I believe they love you.
Is love enough?
Am I doing enough?

What is right?

Autism.
Parenting.
Both.
Ack, its a life most wouldn't wish on their worst enemy.

Still, I wouldn't change it.
because I wouldn't change you.

You are not broken, we are.
Society.
We know how to be status quo, how to roll with it and go with the flow.

I'm the biggest "go with the flow" there is.
I like steady.
I like predictable but here you are.

You have jumped into our world.
You have turned us upside down.
Still, I want. I yearn. I need you to teach me.

Right now, our world, its upside down.
We are in a rut.
I look at your day and wonder, "is this right?".

I have to remember.
I have to hope.
I have to have faith.

Like I tell your siblings,
You are special.
You are loved.
You are a gift.

Perhaps little one, with your struggles you are more than that, we are just having a hard time unwrapping you and finding the gift inside.

I promise, it may not be perfect, I may not be perfect but I am perfectly yours. We are chosen. For each other.

I love you. Today, tomorrow, in a rut on a mountain, you are my purpose.

Sunday, November 11, 2018

Can Your DISability Really Be A Gift?

I don't write about the man behind the family. He's fairly private and honestly doesn't like to talk much so I try to keep him as limited as possible on my blog. After our date night last night, I had to take an idea, he planted, as a seed in my mind, and share because perhaps he's right. Perhaps he gets it more than I do and perhaps he sees the big picture in a way I never imagined.

Autism. Its rocked me. To my core.

I specifically remember sitting with a friend one time, when we were young, telling her I believed that I would be called to have a child with a disability. I don't know where the comment came from nor if I said it for attention but something inside me stirred and I expected that one day, my path in parenting wouldn't be what I imagined. Reality is, I didn't expect autism.

Autism has rocked my world and as I tearfully admitted in a text this week, I am still not at acceptance that this is my life. I've always been good with children and thinking back to that conversation long before I had children, I think I believed I would have a child with a disability and I would figure out how to "fix" that child.

One thing I know for sure is that this child, the one God chose me to raise is not broken and she needs no fixing. That being said, she challenges me in ways I never expected. I have always considered her autism, a disability, I am quietly journaling the gifts autism brings to our lives  (hold tight, I am working on a book). That being said, autism STILL has rocked my marriage, my parenting, my children's lives in ways I never could have imagined and the weight of the guilt I feel in not having the perfect house anymore, not being able to volunteer like I want to and not having the picture perfect life I dreamed of is certainly humbling.

Last night, my husband and I headed out on a date, I never imagined the conversation that would come from that time out. As we drove along with the crisp fall air and bright sun shining in the sky, what followed was something that planted a seed in my mind that perhaps explains a lot of the life we are living.

 My husband is brilliant, and I don't say it in a "wow, pat me on the back" I say it as in he is gifted with intelligence far beyond that of a typical person. For years I "tried" to keep up taking classes by his side, studying for hours upon hours to take a test that was equal to his with no time spent in the books.

 As we evolved, our relationship has, in faith, in life and in living. Last night however, I think the words he shared truly shed light on who we are as a couple, family and even as individuals.

With that quiet moment, I simply asked, "do you think you have autism?". His response was that he was certain he had autism. I sucked in my breath and wondered how he felt about it. Living this way with Seraphina, I knew the challenges she faced and while my favorite quote is "if you have met one person with autism, you have met one person with autism", I am honored and blessed to live with two.

I sheepishly asked if he felt guilty? "For what?" he wondered. "For our having a child with autism?" In the moments that followed I learned exactly why we are together. Much like that symbolic puzzle, we complete each other. While I struggle to accept and will myself to change the future, he lives in the DISability, seeing it as a gift. He's pragmatic. He doesn't get all emotional when things are a challenge. He looks at the challenge and chooses how to handle it, and executes it. He rarely gets mad. Literally, someone can be in his face shouting and if he knows it not to be true, he can stoically stand and accept said discussion without taking it in, festering and allowing it to disrupt his life. He sets goals and attains them. BIG SECRET, half way through his doctorate and then every month after, I threatened divorce. The hours, the intensity, his absence from the home had me reeling, typically barefoot and pregnant and instead of egging me on, he chose to be baptized. Ugh. Freaking Saint. Now he wasn't only going to graduate school, helping me raise babies, letting me stay home barefoot and pregnant (I love to be barefoot), he decided to become Catholic? Seriously. Overachiever. Now that being said, he has his quirks, he can tune us all out and neglect to notice much going on around him which drives this highly sensitized, anxiety ridden woman batty but it serves him well as he now shares an office while working countless hours to keep our world safe from chemicals that could potentially disrupt our genetic model. He's also not emotional. At all. I joke that they day I die, he will say "bodies weren't meant to last forever" and move on. Perhaps he will but perhaps that is his DISability protecting him. He sees what most consider a disability as a gift.

In the two and a half years I have spent my time trying to accept what my family is with a disability. I have looked at all its taken away from us. I draw in and succumb to the sadness of living life having lost the "normalcy" of it all when in reality, it was never normal. As I work tirelessly to fight insurance (which is no longer a battle), find the right therapies, advocate in school, he sits quietly taking it in, stoically accepting her for who she is and openly stating that this life, while it is more difficult, it is the life that was chosen for us and perhaps he gave me a gift last night for his birthday. The knowledge that he lives life with the same disability that my own daughter is living with each day. He does it with success, strength and a belief that this DISability truly isn't a disability at all but actually a gift when you turn the glass upside down.

Happiest Birthday to a man who teaches me to pray for grace, acceptance and understanding. Here is to 40 more years of living life with the abilities you were given.

I Thought She Couldn't, She Did

After I witnessed Field Day Friday, I began to question myself once again about today's Special Olympics Young Athletes program in ...