Poem for an Autistic Child

                                                   A Tribute to August                                           

                                         

To soar on wings of eagles

to glide along the glade

to bounce and jump and whirl and twirl

to dream and search and sway.

He has so much in common

with you and me you see —

a bright and charming sweet young boy

who senses all with clarity.

To hear, to see and touch and smell,

he takes all in so well,

his self expression is unique

his feelings hard to sell.

We might whisper, he might yell

but one can never tell.

He likes himself and folks like him

and that works out quite well.

August has needs and we have ours,

life comes with give and take ―

love and comfort, peace and joy

needs all share, so we partake.

A smile, a doubt, a look askance

a wave, a nod, a sigh —

He needs hugs and love at times,

same as you and I.

He gazes on the sights nearby,

is stirred by beauty there.

A swan takes flight, a songbird sings,

if only he could fly.

Unspoken words may bite his tongue,

but thoughts within belie.

A word from Mom, a smile from Sis

unspoken things give him answers to why.

Show him love and friendship now

his joy you’ll never miss.

  Don’t ever leave just stay nearby,

he just might make you cry.

August is a special child

and August needs a friend.

August is a special child  

And August is my friend.

  a poem by Rich Weatherly, October 7, 2011

For more from Rich Weatherly, visit http://richweatherly.wordpress.com/2011/10/10/poem-for-an-autistic-child/

Jackson's Story

When we got the diagnosis that our son had a brain malformation and wasn’t going to be who we thought he was, I thought the world was going to end. Instead, I soon discovered that the world was just beginning.

For so long I grieved over the lost little boy I wanted to have. I think that is a pretty normal reaction for most of us who have a child with special needs. But what has taken me 3 and half years to learn, and what I am still learning, is that having a child like Jackson is cause for celebration. “Why?” some may ask. Why would I celebrate having a child who at 4 years old can’t walk, can’t talk, is epileptic, and has cognitive disabilities? My response to that is how could I not celebrate a child who is beautiful, happy, funny, goofy, sweet and loving, has touched so many lives, brings enormous joy to my life, reminds me what is really important, is slowly but surely making progress, and who has taught me what a mother’s love really is. Despite Jackson’s disabilities and the struggles we face in raising him, he is my son. He is a part of me. How does anything get any better than that?

Don’t get me wrong, there are tough days. Some very tough days. Jackson is about 45 pounds and carrying him around, putting him in the car, and putting him in his wheelchair every day is wreaking havoc on my back. It’s frustrating when he is wants something and gets upset or mad and I have no idea what he wants. His numerous doctor and therapy appointments are exhausting. It breaks my heart when he has to go in the hospital for tests and they poke and prod him. Then there was the time that he had a seizure in the car. We pulled off to the side of the freeway just as Jackson lost consciousness and his lips turned blue. For a few minutes of my life I thought my son had died. A little bit of my heart died that day. So it’s not all roses. But no parent has a child that is all roses to raise. Every parent has challenges with their child. Special needs parents just have different challenges.

For me personally, the best thing to come from Jackson, other than Jackson himself, is a new sense of purpose. In college my minor was Parent Education. I was getting my teaching degree and I thought that would be a good accompaniment since I would also be working with parents. Little did I know that my in my far off future it would be all I wanted to do. Having traveled down the road of a special needs parent I have learned a lot, am still learning a lot, and know that there is a plethora of learning ahead for me. I want to share what I have learned with others, help them travel down their road with their child, and be a support system for them. I also want to be an advocate for not only my son, but for other people with disabilities. I am currently taking the Advocacy Leadership class offered through the Arc of Spokane so that I can learn how to be an effective and educated advocate. In my wildest dreams I never imagined this is something I would want to do with my life. Yet here I am.

I would never want to change Jackson. I love who he is. It is exactly because of who he is that makes me want to go out and change the world for other parents and people with disabilities. If at 4 years old he can ignite my passion to change the world, I can’t wait to see what the future holds for us!

Stacey Klim

(For more about Jackson and Stacey, go to Stacy's blog at http://lifeonmysterylane.blogspot.com/)

From a Grandma

The joys and anguish of having a grandchild with some neurological issues continues to be a process of discovery. I have so loved being Nate's grandma, even as I have had to make adjustments and accomodations. Nate's older brother jumped into life with both feet and our relationship was forged, in part, by my ability to climb the play equipment as his willing playmate. Nate entered life softer and his wants were less easily understood by me. Over the years he has become so patient  with helping me understand what he wants, even as I get so anxious at wanting to give him the right thing. 

The journey is a winding one and yet such a gift. Nate helps me stay in the moment with him. He doesn't  care what I am planning in my head for later in the day, he is in the moment. This is what so many of my mindfulness classes teach and yet Nate just knows. He continues to be a blessing as he also continues to be my teacher. 

Marci Nemhauser
Portland, OR

Darling Dances

I love how my darling dances whenever and where ever the groove hits her.

She is learning to stay near our table at restaurants, but when the jam fills up her soul, she has to MOVE!

She is not embarrassed or upset about people watching. She loves it all.

We could all learn a lesson in embracing joy and letting it spill out and all over from her.

Signed, Proud Momma on the Eastside

What Do I Treasure About My Child? (A Dad's Answer)

Imagine what it would be like to be completely happy with who you are. Sprinkle in a child's innocence. You know nothing about people lying, or having any malicious intent. Each stranger represents a fun new friend you simply have not met yet. Now, infuse a certainty that everything you do is hilarious. Even if people do not laugh at what you do, your smile and laugh are infectious, and they eventually cannot help themselves.

A school counselor once commented about my son, Nate, that he had never seen someone who had a history of hitting and biting that was so loved by his teachers and classmates. Nate came to us with certain limitations. He struggles to communicate, with only a few words that most people would understand. He is less coordinated than your average kid, and has trouble focusing on anything for more than a few seconds. These forces combine to make teaching proper behavior and etiquette far more difficult. This can lead to embarrassing moments like pants getting pulled down in public, or sporting a Spider-Man costume to dinner. It can also lead to moments of unexpected joy.

I grew up with a capacity for cruel jokes about people with special needs. I never tormented anyone, but I am not proud of what I would say to my friends. I matured, but never truly outgrew the belief that "those people" were without redeeming qualities. They were gross. They were different. They were below me.

Nate changed all that. A cynic would say, "He's your kid. You have to love him." Parents know it does not always work that way. Various studies have indicated the divorce rate for parents of special needs children is significantly higher than parents of typically developing kids. The parent/child bond does not always form. It can become suffocating, and lead people to bail out. That was not the case with Nate.

Perhaps, it helped that our first child screamed and cried for the first four months of his life. We had seen tough, and weathered it. Nate was born content. He was happy to be held, happy to be on the ground. He was happy. Oh, and that laugh.

People are powerless against it. He laughs when he gets hurt. He laughs when other people get hurt. He laughs at the dog. He laughs at the cat. I can be seeing red after he has made a massive mess, and be smiling seconds later against my will.

There was a seminal moment for me when Nate was around three. He had been in various types of therapy for a while, and it was becoming clear this was not going to just get better. I let myself imagine what life might have been like for me, for my wife, for my older son, if Nate had never been born. There was no judgment in my heart. I just found myself asking my soul a question. The answer surprised me. The life I was picturing was less colorful, less enjoyable, less inspiring. I felt bad that my older son was not going to have a typical brother, but I also learned things about how amazing of an older brother he was and what a kind heart he had because of how he interacted with Nate. It changed what I thought about him, and has contributed directly to a stronger relationship between him and me. I can be an intense personality, and Nate is always there to break the tension. Sure, he is often a source of stress and frustration, but he has also relieved the rest of us of ours. Our family would not work without Nate.

That realization pervaded our household over time. We each made peace with Nate's limits in our own way, and in our own time. I was proud, and relieved, to find I had the ability to sincerely love the family I had. My wife has used her experience to launch a new career outlet, advocating and educating about areas that relate to special needs children. My oldest son loves his little brother, but has no awareness of how much character he is building through the process. He may be my age before he truly realizes how Nate has helped him to be a better person.

Nate will not always be cute and young. He is already eight, and will soon turn into a gangly pre-teen. Dropping his pants won't be embarrassing.  It will be indecent. Wearing Spider-Man costumes won't be endearing. It will be inappropriate. I worry sometimes about what that transition will be like. It is part of why we are doubling down on reinforcing social norms and behaviors now. But part of me does not want to force Nate to grow up. His extended childhood has been something that I treasure. One thing I know for sure, though, is we will all be better for going through the experience, and I would not trade it for the world.

What do I Treasure About My Child? (A Mom's Answer)

Nate wore his Spiderman costume tonight when we went out for dinner.  His brother begged him not to, and even spent a few minutes trying to wrestle it off of him, but in the end Nate won the battle and we had Spiderman join us for dinner.

It's not Halloween, there was no costume party, and no one else was wearing a costume.  However, my 8 year old son with developmental disabilities didn't care at all.  He wasn't embarrassed, ashamed, insecure or secretive about his costume.  He wore it proudly and without an ounce of shame.  He felt awesome and strong and ready to fight crime if it arose.

As opposed to Nate, I am a person who never wears costumes.  In fact I don't like flashy clothes in general. I don't wear attention-grabbing hats or have a glittery cell phone.  I'm content (and I prefer) to blend with the crowd and to not draw too much attention my way.

I am incredibly envious of what Nate lacks: self-consciousness, insecurity, self-criticism, ego and bending to peer pressure.  He wastes no time thinking about how he could make more people like him, and he shows his true, unadulterated self every where he goes.  He doesn't second-guess himself or agonize about what he may have done to make someone not like him.  He's proud to be exactly who he is.

Of course peer-pressure and self-consciousness have their place, and we all need to conform to some degree in order to live productive, successful lives in this day and age.  If Nate conformed more, he'd probably be doing better in school, have a few more friends, and not be struggling so much with his learning.  He might even talk more and sit more quietly in public.  He'd also be a lesser version of Nate, and one that would be subject to other people's idea of what "awesome" is.

I am thankful every day for the example Nate sets for myself and my family.  I strive for his confidence, his sense of identity, his humor and his joy!  I'll leave the costumes and crime fighting to him!

2013 Blog Topics

Each month we will focus on a topic relevant to the disability community.  We welcome diverse perspectives and ideas, and look forward to your stories, thoughts and experiences. 

To submit an article on any of the topics listed below, click on the "submit an article" link on the right side of the page. In the subject line, please include the month's topic that you're writing about.

January: "I Wouldn't Change My Child for the World, but I'd Change the World for My Child": What do you love/admire/treasure about your child or adult with disabilities?

February: Keeping your world wide (friendship, recreation, travel, etc)

March: Marriage/relationship issues

April: Sibling issues

May: IEP/working with the school system

June: Working with the DDD System

July: Assistive technology

August: Making life livable through services and support

September: Book/Literature reviews

October: Preparing for the future (special needs trust, wills, guardianship, etc)

November: Extended families/holiday traditions

December: Searching for a diagnosis/living without a diagnosis

New Year, New Blog!

The new year has arrived, and with that comes the official beginning of our Informing Families, Building Trust Blog.  We are so excited about this new undertaking, and hope this blog will be a place where parents from all over Washington State can share the feelings, thoughts, ideas, support, heartache and joys that they experience while caring for their children and adults with disabilities.  We envision a place where parents and other caregivers can say what is on their mind without judgement or recrimination, and with a community of people who understand.

The format of our blog will be as follows: Each month a new topic relevant to the disability community will be introduced with two posts: one from a mother's perspective, and one from a father's perspective.  After that, the topic will open up to the community.  Anyone can submit an article, and you can submit as many articles as you like.  Submitting an article is as easy as clicking on the "submit an article" link on the right side of the page. The only guidelines are that you stay within the topic for the given month, and while we encourage unique opinions and perspectives, we ask that you remain kind and compassionate above all else.

The Informing Families, Building Trust moderator will check all submissions for appropriateness and format, and then post them directly on the blog! Check back often throughout the month for new articles, special guests, professional input and more.

Like we said, we can't wait to get started!  Welcome to our blog!