Thank you Hernando

I really do not want to say "thank you" to you. Those two words seem so very inadequate. Yet, how do I express this gratitude that overwhelms my spirit?

Every day, and some sleepless (or nightmare filled) nights, I live with autism awareness. I'm aware my oldest son might not be understood, or accepted, or find his hoodie (yet again) or say something awkward, or be bullied, or be too full of energy, or forget an assignment, or not understand instructions, or .... the list is too long to write here. Every day, I pray my youngest will not be so overwhelmed by sounds in a pep rally or meeting that he comes home (again) violently ill, pale, and worn out from trying to process the extraneous sounds assaulting his ears. I pray he does not miss some critical piece of instruction while screening out other sounds in the environment. (Auditory Processing Disorder falls under the autism umbrella, it's something like bionic hearing but with no screen to filter out background noise).

I do not remember the last time I enjoyed the luxury of reading a novel. Instead I read news feeds, special education law updates, research articles, and follow political campaigns for autism related issues.

Sometimes the memories of past public encounters rise to the surface. I try to suppress them. I try to forgive and I try to rise above, and I try not to be caught up in the bitter. But the insidious images steal in sometimes and strike a blow to my being. I still see the woman who was bold enough to touch my son in the grocery store and tell me how to parent. I pray God gives me credit for not decking her, or launching into a tirade. I might have walked away but she still haunts me. I think of the educators who have been inadequate and of the times I've had to steel myself for meetings, yet attempt to squash my Irish temper so my son gets an appropriate education. I am not proud of the way my emotions have expressed themselves at times, and I resent being put into those situations. I think about all the "fun" events we didn't go to - still don't go to - because my son might not be able to handle the sounds, lights, interactions. I think of the therapies, the struggle... and I risk spiraling down into something dark, bitter, depressive. I fight this spiral every single day, and only God's grace and Friends-placed-in-my-life-by-Him keep me from falling into the abyss.

We humans are a pitiful lot. So often we get caught up in all the negatives, all the hurts, all the emotions, that we forget there is still much good in the world. It happens to all of us, in varying circumstances. We think no one cares, no one understands.

But we are wrong. People do care. There are great teachers and therapists who are shining lights in our children's lives. There are parents raising children who are compassionate, caring, and concerned. There are students who want to see their peers succeed, who are helpful, kind, committed. 

In the past 48 hours, I have been witness to some profound sites:

*An entire school decked out in blue -- from teachers in blue capes, banners on the wall, the entire student body outfitted in shades of blue, signs on the school, along the roadway, and blue lights on the buildings.
*The blue puzzle piece the high school winter guard created to take on the road to state competition (because they would miss the race). 
*An entire high school marching band (well, a great percentage of them) who came to race, and rally on the Square.
*A community that came out to the town square when they could've stayed in bed on a cold, rainy Saturday morning. But instead they came out in droves to support Autism awareness.
*The sight of 400 runners braving the weather and setting out to run a race for a good cause. 
*Costumes & home-made t-shirts, each representing love and concern.
*Kind words, applause, acceptance.... the list goes on!

Autism is not going away. We desperately need to find a cure. 

And I need to figure out a way to tell the folks at Hernando High School, and the entire Hernando community, how very much their commitment, energy, kindness, and acceptance means to me. They are making a difference in my sons' lives and lives of countless children here in DeSoto County and around the world. Their actions inspire other communities, give hope to parents, and are setting an example which all schools should follow. They are creating a legacy -- these images and memories will carry forth to college, marriages, and careers. Compassion and acceptance will reign, instead of the negative, cruel actions we too often see in the news.

Maybe a day will come when we will not need to have rallies and races to create awareness about autism or other special needs issues. I hope so. And I hope my sons & I can give back to the global community in deed and prayer, in thanksgiving for the difference Hernando has made in our lives, and the support they've given to the world-wide Autism Awareness campaigns.

You are shining lights, each of you. 

I thank God for you!

Being a Man

 He was 12 years old and in 6th grade... from September 2009

As I pulled out of the hospital parking lot, the teary voice coming through my cell phone said, "Mom, I had silent lunch today. I couldn't sit with my friends. The teacher warned me to stop talking at least 5 times but I couldn't stop, so I had silent lunch."

I still had 45 minutes of commute to clear my head from work, and needed time to think about my response. My mind was going in numerous directions: I was thrilled my Aspie son has a group of band buddies (he has friends!!!) to sit with at lunch. I was glad to learn the teacher's are being understanding yet not letting him get away with inappropriate behavior in class. And I was sad my son was upset yet proud of him for telling me what's going on in his life. All I said at that time was, "I love you honey, thank you for telling me what's going on. We'll talk about this when I get home."

After I got home and changed clothes I sat down with Robert. As he snuggled next to me, a thought crossed my mind: There won't be many more times he'll want to snuggle with me as he grows up... and I already miss the feel of him in my arms.

And thus came the inspiration for my answer. I waited while Robert relayed the days events to me then I asked him, "You know how you tell me you're ready to be grown up? Ready to make your own decisions? Ready to make the rules?" He nodded yes.

And I asked him, "You know how I tell you it's not time for you to make the rules? That you're still a kid and not a man yet?" He nodded yes.

I said, "Well let's talk about what a righteous man would do. A righteous man will face his challenges head-on, he will admit his mistakes, face the consequences of his actions, then move on and strive to do better. Can you do that?"

He quietly said, "Yes Mom, I can." He didn't try to argue with me, didn't try to tell me he was the victim, didn't sass me.

I think he took a small step towards being a man.

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!