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

Roars and Whimpers

This morning, Autism kept rearing it's head. 
Not in a bad way, just a continual way. 

En route to the doctor's office, he asked me an awkward social question. It was related to women who were walking along the downtown streets. I responded in an exasperated manner, "Why do you keep asking me about this? What is your fascination?" In an equally exasperated fashion he said, "Mom, it's not about sex! I wonder about the diseases. Why would anyone do that to themselves?" 

As I drove along, we had a long discussion, I thought back to a training I'd attended a few years ago. At it, I learned repetitive comments about negative events or situations are not always simply an "obsession." In the words of one of the adult autistic presenters: "Repeated negative comments and questions help me get rid of bad or sad things in my head. If I talk about it, I don't have to keep thinking about it." Then I thought about the repetitive questions. I realized I have to teach him more about choices -- and how some people feel they have none. I have to help him see beyond his black and white world and accept the grey areas. And I need to help him empathize, not judge. We will work on this, I will work to help him understand.

He was antsy at the doctor's office, despite heavy work this morning. He couldn't stop talking. He tried, I could see his effort, but it was as if a switch has been flipped to ON. When we got home, he told me he needed to use the restroom. And it clicked. I thought back to the sensory, to the Occupational Therapy. Sometimes when the biological need to use the bathroom is great, he has trouble processing the message his body is sending to his brain, and his behaviors increase. It had been a while so it caught me off guard. I hadn't thought to ask him if he needed to use the restroom. I should've asked, should've thought of it... I will work on this, work to remember.
 
During the doctor's visit, one of his repetitive behaviors was addressed, and ideas discussed. It appears he has caused some damage to his skin. It can be cured, over time, but the behavior has to be addressed as well. We discussed ideas, and the doctor backed me up, even talked at length while making Robert look her in the eye. Her talk made a difference, she got through to Robert.

When she turned and looked at me, she said, "You're doing a great job." I thought I was going to cry.  I know God has me. He is my rock and my hope. But I am human, and I get tired, and sometimes I feel I can not take this disease called Autism even one minute longer. But that's just emotion. We can take it on, we can tame it. At the very least, we will work on it!

I think back thirteen years. In my hopes, fantasies, prayers -- my sons were the strong, articulate young men of today. But back then, I didn't know if those dreams would come true. I don't know if other dreams will come true. What I do know: through God's abundant grace and our hard work -- we are taming Autism one day at a time. Ever so slowly, we are backing it into a corner. Sometimes it whimpers. Every great while it roars.

But, we will work on it
... And we will move forward!

Talk to Me

This is an older note, written in March 2008. I share it every year as we head into Autism Awareness Month.

When Robert first came into my life, I was prepared for all sorts of possible delays and issues. I'd worked with children for years and had educated myself on all the things that might happen based on his life in an orphanage. I read books, went to seminars, and was ready for the big things: Reactive Attachment Disorder, Oppositional Defiant Disorder, Fetal Alcohol Syndrome. But none of those things manifested themselves.

I worked on bonding with him -- purposely regressing him so that I would feed him, then forcing eye contact while he was eating. I taught him his name (no one had ever taught him his name), and held him as often as possible. He learned English and how to give a "two-armed hug." And I started his musical education early with Mozart, jazz, and big band sounds to soothe his spirit and feed his brain.

At night, after I put him to bed, he would get up and hide behind his bedroom door, giggling, then he would dart out into the living room to see what was going on. He was 3-1/2 but didn't know any English, and almost no Romanian. Telling him to "go to bed" was meaningless, so I would lie down with him until he fell asleep.

And I talked to him. He would lie there and listen to me narrate the events of his day. I would talk about what he'd had for breakfast and what games we'd played. Every night I would tell him 3 or 4 parts of his body: "hair", "eyes", "nose"... and I would touch the corresponding location on his body and amazingly, the little fella would know these words the next morning! Every night I would teach him and each morning, he would tell me his new words. He absorbed language like a sponge! His acquisition was so fast I couldn't keep up with the list of words I was making to share with our social worker on her next follow-up visit.

Soon, I realized (and was so relieved) none of the disorders I listed above would be part of our journey with Robert. But there was something... I knew it wasn't exactly ADHD even though it sometimes looked like it.

Then a friend talked to me, and gently suggested that Robert's issues were neurological and fell under the Autism umbrella. My friend was right and the first diagnosis was Sensory Integration Disorder. Through years of Occupational Therapy in the clinical setting and at home with me, great strides were made, but there was something more... Again, I couldn't peg it, but there was something...

One day I was talking to a friend and she said, "Have you heard of Asperger's Syndrome?" I hadn't but I researched it quickly and Robert fit all the criteria. He is brilliant - a "little professor" as many of these children are, but he has deficits in social skills, language arts, and develops obsessions for certain objects.

You'd think that after all these years, after all the research, meetings, seminars, workshops, and networking with parents and professionals in this field that I wouldn't be surprised by anything.

But Friday morning [in 2008] I was in an IEP meeting at the school and we were reviewing a recent evaluation done on Robert. I am familiar with the test that was used. I am sure the numbers are right. And yet, what's been playing through my head the last couple days are the numbers 4 and 22.

My brilliant little boy has expressive communication skills that test out to an age equivalency of 22 years old. The little professor can build and describe an electromagnet for goodness sake, and he can tell you where your epiglottis is located, so no surprises there.

But because he does not understand all parts of speech, because he does not understand slang and social cues, his receptive communication skills are those of a 4 year old.

4 and 22.


These numbers haunt me.

With the proper therapies the incredible gap between these two numbers will grow smaller. But still they haunt me. What's the missing piece that explains this deficit and will help researchers find a cure and increase understanding?

That critical piece of the puzzle is Autism research and awareness. April 1 will be here soon and will mark the beginning of Autism Awareness Month.

If you know someone who's life is touched by Autism, keep in mind that they are dealing with a puzzle that as yet can't be solved. And if you think they need to talk to someone who understands, encourage them to get involved in a support group, or you can tell them to talk to me.

In Her Wallet

Original post October 2009 when I was still working in the ER... Reposting today in honor of Nurse's Day, and as I move entries from facebook to my blog page. 

A pale, middle-aged woman was sitting in one of my assigned rooms, waiting to be seen by the ER physician. I took her vital signs and started asking her questions about her condition. In between episodes of coughing, she told me about her symptoms, and then looked up to me and said, "Do you remember me?"

Sheepishly I told her, "I recognize your face, but can't remember how we met... it was here in the ER?" She said "Yes, I came in with my Mom and you were so nice to her. You two talked about your special needs sons."

I racked my brain but couldn't - and still can't - remember her mom, or the conversation.

The patient continued, "When I told my Mom I was coming to the ER, she got this out of her wallet and told me to look for you today. She wanted you to read it and keep a copy of it."

I looked down at a yellowing copy of an Ann Landers column. It was dated August 14, 1982 and I wondered if my patient's mother had been carrying this paper around for 27 years. As if reading my mind, the woman told me, "My mom loved that poem so much, she made a copy to keep in her wallet. She's had it for years. She wanted you to read it and make a copy for yourself."

By now I had tears in my eyes. Tears of humility because I could not remember this patient who obviously bonded with me. Tears of appreciation for her walk in life with a special needs child. And tears of hope as I was reminded we are never alone.

I touched my patients hand and relayed my sincere thanks to her, and her mother, and made my way to the copy machine while reading:

"Heaven's Very Special Child"
by Edna Massimilla

A meeting was held quite far from earth!
It's time again for another birth.
Said the Angels to the Lord above,
This special child will need much love.
His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.
He may not run or laugh or play;
His thoughts may seem quite far away.
In many ways he won't adapt,
And he'll be known as handicapped.
So let's be careful where he's sent.
We want his life to be content.
Please, Lord, find the parents who will do a
Special job for you.
They will not realize right away
The leading role they're asked to play.
But with this child sent from above
Comes stronger faith and richer love.
And soon they'll know the privilege given
In caring for their gift from Heaven,
Their precious charge, so meek and mild,
Is Heaven's very special child.

I was too busy that day to sit and truly absorb this beautiful poem when it was given to me. I tucked it in my wallet, where it remains. Every now and again I take it out of my wallet and read it... tears spilling down my cheek as I think of a very special patient who kept a testimony of faith, hope, and love in her wallet.