Seeing Past the Tears

Twice in the last month, I've found myself crying - actually crying - in public.

I didn't hide my tears, either. That's something a bit new for me. I've always been taught to be strong. Hide the emotion. Hide the bad. Carry forward. Failure is not an option.

Besides, I didn't have time to address my feelings. I had children to house and feed. I had bills to pay and had two children on the Autism spectrum who needed every bit of parenting energy I could give them. So I stuffed those emotions down deep. And I moved forward.

So what brought it on these recent bouts of tears?
Was it the follow-up report from the doctors after my youngest's emergency surgery in December?
Was it my oldest's beautifully insane prom experience?
Was it the excellent IEP meeting last week?
Was it healing, as I reduce some of the toxic demands on my life, and focus on my health and my children?

I think it was all of the above -- and then some.

Am I ready to be hauled away to an asylum? Is it time for the pretty white jacket that reaches around back?

I suppose those answers are debatable. But more likely it's my response to the trauma of years as a special needs parent.

What? That sounds negative? Dramatic?

According to Dr. Astrid Herard, a pediatric psychiatrist at the University of Chicago, "it's not just single traumatic events that can trigger post-traumatic stress disorder. For parents of children with chronic diseases, the years ... can take a collective toll and produce similar symptoms."

Friends, parenting special needs children IS traumatic. The diagnoses may vary, but the reality remains.

A diagnosis is given. Behaviors are documented. Physical limitations are noted. Therapies are started. Prayers are said. Your world tilts. And...

Every time someone stares at your child in pity, or judgement,
Every time a stranger offers unsolicited parenting advice,
Every time a teacher questions your parenting ability,
Every time someone else's child does the age-appropriate thing,

Every time you look at the pile of hospital bills,
Every time you have to leave the playground early,
Every time you have to pack a bag (or wheelchair or stroller) of adaptive equipment,
Every time you have to refuse an invitation because your child won't be able to adapt to new surroundings,
Every time your child isn't invited,
Every time you hold them back for their safety,
Every time you have to explain a chew toy, or a weighted vest, or start buying refrigerator tubing in bulk at the hardware store,
Every time you celebrate a success at Therapy,
Every time someone says "Well he's so smart" or "He looks normal,"
Every time you sit down and prepare to negotiate through an IEP meeting,
Every time you look at the Bible open on your table,
Every time the babysitter quits,
Every time you write a letter of appeal for insurance benefits,
Every time someone says "I know how you feel" when they haven't got a clue,
Every time you see "The Art of War" beside your editions of Special Ed Law on the bookcase...
.... You're tucking away hurt and trauma.
 
And eventually, those pent-up feelings have to be released. A few triumphs in the face of long struggle can cause everything that's stuffed down deep to rise to the surface. Once the tears start falling, sometimes it's hard to stop them... even harder to sort through the emotions that accompany the tears. But it can be done. With honesty, rest, reflection, and prayer the old hurts and worries can finally be processed. And healing begins.

Does this mean the traumas go away? Unfortunately, no.

My tears are signaling a surge of hope, as I see milestones crossed, triumphs made, and goals expanded. My tears are also in thanksgiving, for a community that has rallied around my sons in a way that humbles and down-right amazes me. God has been so good to send us here.

But this is not the case for all special needs parents. Some children will always be in a wheelchair. Some will depart this earth much sooner than expected. Some will never utter a word, hear a sound, or take a step. Some parents will never have a community rally around them.

Raising children isn't easy, and all good parents work hard within their families. But, parents of special needs children have greater demands in their daily existence. It's that simple.
 
I beg of you, if you know a family with a special needs child, please pray for them. If you feel led: cook dinner for them,  mow their lawn. Give them a couple hours out of the house. Send them a card. Be gentle. Encourage them in good health. Listen, but do not preach. Theirs is an exhausting path to walk.

And should you be there when they cry, simply hand them a tissue, give them a hug. You don't have to say much. Your acceptance and love will help them heal.

Reference: http://www.chicagoparent.com/magazines/web-only/2010-january/parents-and-post-traumatic-stress-disorder

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!