Why Can't We Be Friends?

Life and Time often conspire against us, causing memories to be blurred and events forgotten. But as I review Robert's paperwork and reorganize his file, events are remembered. Combine the memories with recent events and I want to offer some reflections on our Special Ed journey.

I homeschooled both boys in their early years. The reasons I chose homeschooling were varied: Merrimack (NH) didn't have public kindergarten, both boys had delays, homeschooling gave us freedom and more time for bonding, they'd been rejected for early intervention in WA state (which I now know was illegal)... and I wasn't ready to trust the school system with my children.

But through Special Olympics, I met a wonderful lady who oversaw the sped program at Reed's Ferry Elementary in New Hampshire. One day she said to me, "Please let me have a chance with your son." And things went well. Not perfect, I didn't know how to get speech for Robert... but the school system put both boys on IEP's and Robert had OT, PT, and accommodations. (Ryann had speech and OT but no longer needs an IEP although he still struggles with auditory sensitivity). Unfortunately, despite a decent school system, my marriage was finally disintegrating. And I moved home to Virginia.

Although the small town to which I fled offered many positives, my sons were now at the mercy of a school system that didn't care... Don't get me wrong, there were some that tried, and some who fought the brave fight... but I was one woman, fighting a political machine. I remember the first IEP meeting... they'd lined up a dozen folks in a small classroom and I guess I was meant to be intimidated. Four hours later I called my best friend and said, "I'm going to be a while"... and for the next two years I learned how to fight the good fight. I joined the Sped Advisory Committee for the county, I pulled in a research team from Richmond... and again, while there are those who tried to help, their best efforts could not give my son what he needed.

Most of you know how I ended up in DeSoto County, MS. Their reputed public school autism program and the woman who loves our children, brought me here. And even though there are bumps along the way, I still say... we have it GOOD in DeSoto County. Robert has Speech (after 3 other states denied him), OT, Social Skills group, transportation accomodations, sensory diet, and other accommodations. My children are blossoming... and we are blessed.

But recently, someone said to me, "I want my IEP meeting to be peaceful". And heck, I sure agree with that statement. I'd like everything to be peaceful. But it doesn't work that way. Sometimes you have to be bold, you have to project an image... to get your children what they need.

When we first got to MS, we had an IEP meeting prior to Robert's admission to school. I think folks listened but they didn't "get it"... perhaps they needed to meet Robert, perhaps they were overburdened (God bless our teachers who are so very overworked and underpaid), perhaps they weren't used to a parent who participated in their child's education process, perhaps.... I had to prove myself.

I'm not sure what the exact answer was, but as I go through the documents in Robert's file, I see an email written about me which was written right after I got here, dtd 1-29-08 and states in part "...in her response below that she has other concerns she feels aren't being acknowledged. From this point on, I will only communicate with her in person with someone else or by phone with someone present." No doubt this was written because I'd been a bit outspoken, been pushing for services.

But even then, my concerns weren't taken into account as they should, when Robert was hit in the face in school, his glasses broken, and I rushed to the school on Feb 4th... to find my baby hurt and upset. Granted, Robert had acted out in the bathroom (and from his perspective he got in big trouble with me) but there should've been safeguards in place prior to the incident. I had asked for them, but it wasn't until this incident, that they were quickly put in place.

And to the school's credit, the other child was suspended. Yet I was told, "this isn't the first time he's tried these attention getting devices", and my response was, "Why didn't you tell me?" I suppose school personnel get so tired of parents not caring, and are overwhelmed by all that goes on, that sometimes things fall through the cracks. But they shouldn't and now it's a line item in his IEP... I will be contacted!

And so, my first contacts with school personnel in MS didn't endear me to anyone. I was bold, passionate, outspoken, and had reached my limits with schools. I wasn't anyone's friend. But I'm cool with that... I have friends. What I was, however, was Robert's Mom.

And can you believe it? The following line item is now in Robert's IEP:

Robert's mother is extremely supportive of his education and maintains great communication with his teachers and support staff. She provides academic and behavior support at home and is concerned for Robert's best educational environment."

Bless them!

Along this journey, I've met several people who would be happy if I dropped off the face of the earth. Not my problem. I've also met people who work hard for our children every day. Even if they aren't my friends, I admire them and am so thankful they are part of my child's life. And I've made a few friends who I love dearly... and thank for their passion and devotion to our children.

My intended message? Don't give up, don't worry about making friends, don't worry about keeping the peace. There may be times where you are your child's only advocate. Learn how to get your message across professionally, always back your position with data, learn how to negotiate, and learn when to speak up when it's needed. And never, ever, underestimate the power of prayer and the promise that Right will Prevail!

Influences

When my sons and I are out in public and someone asks, "Are they twins?" We usually glance at each other, smile slightly, and I'll answer, "No." Sometimes, the person proceeds to say, "They sure do look alike." Another glance at each other, and depending on our collective mood, I may say, "Actually, they aren't my biological sons, nor are they biological brothers, but they are my sons, and they are brothers." This usually causes the person to pause and look carefully at me, then at my sons. Generally, the next comment is a thoughtful, "They sure do look like you." This causes smiles all around and the short conversation that follows is often my way to promote adoption awareness.

Certainly, at a quick glance, we seem to be a fairly matched set, yet my sons' DNA is from their birth parents, not me. But make no mistake, they are my sons... Robert has a vocabulary years beyond his age, and Ryann seeks justice with a servant's heart. Robert has a northern accent from our time in New Hampshire, Ryann has a southern accent honed in Virginia and Mississippi, yet both have mid-Atlantic inflections much like mine. They are both inquisitive, like a good story, and enjoy history, hockey, and music... just like their Mom.

Like most parents, I've taught them right from wrong, how to tie their shoes, and to turn off the lights when leaving a room... but what other things have I imprinted on their consciousness?

Listening to Ryann read his book about the wreck of the Edmund Fitzgerald, I realized I've given my boys a love of the ocean. Because of my gravitation to the sea, we read books about historic storms, shipwrecks, and floods. They know the impact of the Hurricane of 1938, the adventures of Misty of Chincoteague, and know there are treasures and stories off the shores of the Graveyard of the Atlantic (the Outer Banks) and the Pacific Graveyard (Cape Disappointment, Washington). 

A few years ago, they were playing football in the backyard when I heard Robert say to Ryann, "You be the Pittsburgh Steelers, I'll be Virginia Tech." They were little, and didn't understand the difference between pro and college ball. The memory still makes me smile, but it illustrates again how our interests influence our children.

Growing up in what-was-then rural, eastern Virginia, I knew a world of farmland, marshes, and the sea. But through stories, my own father imparted a love for the mountains of his beloved Montana. He would tell stories of growing up in Big Sky country, bringing the mountains to life in my imagination. He shared his love of horses, the outdoors, and gardening. 

When people come to visit, I'm not content until I fix them some coffee, some cookies, or a meal... This is because my Mom, and her Mom, did the same thing. They always opened their humble homes to friends... and made them feel welcome. My Mom would not let anyone leave without feeding their bodies, and dare I say, their spirit. My mom made sure I knew the joy of a good book, the great music of the 1950's, and she taught me manners and etiquette.

Who I am today is a result of God's unconditional love and my family's influence. I think it is that way for all people, whether the family influence is good or bad.

I'm a single parent. There is only one of me. I can only do so much. I'm getting older. Sometimes I get tired, and I lose patience, and I feel disheartened. I pray my sons do not take these negatives to heart. 
 
Sometimes the thoughts overwhelm me:
Am I doing enough? 
Is my influence a good one? 
What am I teaching them? 
Are they ready for this world?
Am I planting strong family roots?
Do they know I love them?


I pray my sons see the positives, feel the positives, know the positives. I am not ashamed to let them see me on my knees in prayer. I admit my mistakes as I realize them. I challenge them to search for justice, encourage them to be positive, advise them to turn to God in all things, and I always tell them to Give Thanks. 


I humbly whisper to the Heavens, "Help me be a good mom. Let them come to know You deeply. Let them be safe and know they are loved. Thank you for letting me be their mother. Let my influence be a good one."

Cape Henry (Virginia Beach), Virginia. 2006

Celebrate!

As the Miss America pageant took place tonight, the global autism community was cheering on Alexis Wineman, Miss Montana.

Alexis became one of the most popular contestants of the pageant. Not only was she named a finalist, she was also the youngest competitor at this year's pageant, winner of ABC's People's Choice award, and the first contestant in pageant history (to admit being) diagnosed with Autism, specifically PDD-NOS. (Pervasive Developmental Disorder-Not Otherwise Specified).

A miracle!
A vindication!
A winner!
A beauty!

Yet in all the excitement, my mind kept wandering to thoughts of her parents.

According to online articles, they were told their daughter was autistic 7 years ago, long before she ever entered a beauty pageant. 
They knew something was different about their child. 
They've heard the doctor's diagnosis. 
They've had to hold to console their child after she was bullied. 
They've had to endure melt-downs. 
They've had to deal with school concerns.
They've had their parenting questioned. 
They've had sleepless nights.
They've had to teach their child to exist in a non-Autistic world.
They're two parents doing the best they can for their family and their special needs child.
They aren't glossy or glamorous.
They've struggled.

They are "one of us"...

70 years ago, Alexis' parents would've been advised to put their autistic daughter in an institution. This evening, Alexis' parents saw their daughter in a tiara and the Miss America pageant!

I have a secret to tell you:

Tonight I celebrate Miss Montana, but I'm also celebrating her parents!




Sources:
http://www.abilitypath.org/love-laugh--live/family-fun/alexis-wineman-miss-montana-2012.html
http://www.missamerica.org/news/press-releases.aspx?id=625
http://www.people.com/people/article/0,,20664029,00.html
http://abcnews.go.com/blogs/entertainment/2013/01/alexis-wiseman-miss-montana-first-autistic-miss-america-contestant/
http://www.greatfallstribune.com/article/20130111/NEWS01/130111005/Miss-Montana-Alexis-Wineman-makes-history-first-Miss-America-contestant-autism