Journey continuted..

In the 6 years and 17 days (actually 6 years 363 days as of today) since Daniel's official diagnosis on April 11, 2002, we've watched Daniel progress from a child who was barely verbal with behaviors that were glaringly autistic to the trained eye - strange and eccentric to the untrained eye - to a highly verbal, incredibly bright child who has astounded everyone with his growth and capacity for learning. We've watched those who were unsure or afraid of his presence simply due to his Autism label be captured by his personality and fall deeply in love with him, and begin to advocate for him along with me. We've watched him charm strangers, opening doors for us to educate them about autism, and about the awesome Hand of God in his life.

Daniel is an incredible, strong little boy who still loves trains (although he's a little embarrassed to play with his Thomas toys now - he hides in his room to play with them), Hot Wheels cars, and Bionicles. He loves his big brother, displays compassion and empathy, enjoys humor, makes eye contact, excels in the classroom (with help from his amazing IEP team), loves music and dancing. He tells me I'm his best friend, and compliments strangers on their hair styles. He brings me dandelion flowers insisting I put them behind my ear, then tells me I look like a 'real girl'. A few years ago, after I'd had a pretty drastic haircut, he told me, "Nice hair, Mom. Pity about your face, though." He'd echoed it from a movie, but generalized it appropriately. I was thrilled.

We still have a long way to go on our journey. It's the journey of a lifetime; a long, long road. Autism always is. We still see delays and deficits. We see splinter skills and weaknesses. The wonderful thing about long journeys on long, long roads is that when you're tired or frustrated, you can stand in the middle of that road, and instead of looking at how very far you've left to go, you can turn around and see how very far you've come. We have so many wonderful blessings. We have so many joyous memories, so many little victories that we took the time to notice and applaud, and we know that many more will come. Autism gave us that.

Autism gave us the ability to notice things that many parents don't see - simply because life gets in the way. Autism gave us eyes that see that miracles aren't always earth shaking events. Miracles can be tiny, and silent, but no less heart soaring. We also know that we'll still face obstacles, ignorance, and probably even bullies. We know Daniel may face discrimination. We know people who have no tolerance for differences. But we know we will overcome it all together. We'll discover new ways of laughing and caring that many people are never blessed enough to find. For that, I am so grateful.

More of our Journey...

Posting at almost midnight because I can't sleep. I'll pay for this tomorrow! ha! Here goes:

I'd called my friend to come to my computer and look at the information I was reading. She didn't say anything, just offered a comforting hug and hand on my shoulder as I read. I printed out the questionnaire I'd completed and took it home with me.

That chilly December afternoon, I called a lady from the IEP team at the school system's central office and told her, "Mrs. C., I think Daniel may have autism." She replied, "I'm so glad you found this information on your own. We were just about to call you for another IEP meeting to request an evaluation We've been seeing the red flags for a few months now, but wanted to give him a chance at speech/language therapy to see how he did. When he didn't progress, we knew the time had come to have him evaluated." Quietly, as she explained the process and the delays they'd seen in Daniel, I covered my mouth with a trembling hand and wept.

That afternoon, I picked my boys up from school and daycare, hugged them a little tighter, and started making phone calls. After several phone calls to different agencies, and after my family had all gone to bed, I walked into my laundry room, exhausted, and fell to my knees. I began to cry, and I beat up a laundry basket in anger. I wiped my face and nose on someone's dirty sock. I hurt. I ached. I longed for my son. I grieved. But I couldn't pray. I was angry, so I wrote. As I wrote, God spoke and calmed my fears. Like the Loving Father He is, He patted my back, and with His still, small Voice said, "I know, child. I know." This is what I wrote that night. I hope you'll see God moving through the emotions.

I'm afraid he'll hurt.
I'm afraid he'll cry -
and I'm afraid someday
he might ask me why....
and I won't have an answer.
Ah, but God knows.

Oh, what a specter!
Such an evil thing
has cast us in the shadow
of it's awful blackened wing...
and all within me hates it.
Ah, but God knows.

Tomorrow seems uncertain.
Is his future bleak?
I'm not sure I've got enough...
my faith just feels so weak...
and I don't know how to help him.
Ah, but God knows.

Soon dawn will be breaking
beginning a new day.
I sit before Him weeping -
since I just can't seem to pray...
and my mommy's heart is broken.
Ah, but God knows.

God knows the pain.
He's felt every sorrow.
He sees broken dreams -
He holds our tomorrows...
and I can't help but praise Him!
Ah, but God knows.
God knows!


And with that, I walked across the Bridge of Nevertheless. Nevertheless, not my will, but Yours be done, Lord. I have the word posted all over my house. My faith is very important to me, my reliance on God a very real part of my life. In the beginning, Nevertheless was a reminder that God's Will will never harm us, even if it sometimes hurts. Today, it stands as a reminder of the miracles He has brought into our lives and home.

Journey continued

We were contacted by one of the speech/language pathologists who'd evaluated Daniel and asked to attend an IEP meeting to set up speech/language services to begin as soon as possible. Our meeting was scheduled for September 11, 2001.

On September 9, 2001, Joel's father, David, passed away en route to the hospital. He'd suffered with heart problems for several years, and his passing wasn't completely unexpected, albeit heart-rending in it's suddenness. We began funeral arrangements and forgot to postpone our IEP meeting. On the evening of Sept. 10, 2001, with the funeral scheduled for the next afternoon at 2 p.m., I remembered the IEP meeting scheduled for the next morning at 9 am. We decided to go ahead and attend the meeting.

The morning of Sept. 11th, as we dressed, our phone rang. Ianswered to hear my husband's sister's frantic voice, "Turn on the television! Any channel!" We did so, only to sink down onto our knees as we watched a plane slam into the World Trade Center.

Like zombies, we attended the meeting. The IEP team was told of David's death, and we'd all seen the horrifying events beginning to unfold in our nation. Quickly, they explained the results of the evaluation, and their plans for serving him in his daycare. I vaguely remember words such as "severe language delay", "this level of disability", and I remember that they'd said my 4.1 year old son had the overall language abilities of a 1.7 year old. Thankfully, mercifully, they ended the meeting quickly, understanding our state of mind and heart as we also understood theirs. We were all grieving.

Joel and I barely spoke on the way home. We rushed in to turn on the television to see what was happening in Manhattan only to sink again onto our knees and weep as we watched a second plane slam into the second tower. Joel would mention later that day as we got into our car for the procession to the cemetary that he felt he'd been robbed the chance to grieve his father's death as he was now grieving for thousands. I nodded, silent. I understood all too well his emotions.

It wasn't until days later, when we'd had to tear ourselves away from newscasts showing the horrific scenes over and over, that we finally discussed the things we'd been told at the IEP meeting. We felt we had an understanding of Daniel's troubles, and the speech/language therapy would be able to help.

I poured myself into teaching Daniel new words. As we moved through our days, I'd label everything and ask Daniel to repeat it.
"Daniel, that's a barn. Can you say barn?"
"Barn", he'd say.
"Good job!" I'd squeal.

Daniel began speech/language therapy in mid-September. By early December, he'd made NO progress. I began wondering what could possibly be the reason he wasn't learning like we'd expected. I'd also begun to notice the strange little behaviors - his fascination with lining up cars, trains, spinning things, his tantrums...things I didn't remember Davey being fascinated with or doing at Daniel's age. I knew something was wrong, different, but I didn't know what.
I began to search for what could possibly be affecting my son's learning, his behavior. I read about language delays. That fit, but not completely. I read about ADD/ADHD. That didn't quite fit. I looked everywhere, and was at a loss. Finally, at work one day, I was discussing it with a friend, telling her all of the things I'd researched and how none really fit Daniel. She listened, and then quietly said, "Maybe it's autism."

I'm sure my mouth dropped open, "Autism?! No way my son is autistic. My son is NOT autistic." In my mind's eye, I saw Rain Man. I'd seen the movie several times before and adored Dustin Hoffman's character. My son wasn't like that, though. Still, I turned to my computer, and signed onto the internet to look it up - if only to prove my friend wrong. I did a search for autism, and found a website with an online questionnaire (childbrain.com) that I could complete and they would score it for me. I read the information about autism, and began to cry.

I was reading about my son. So many of the descriptions fit him so perfectly. Not everything, but so many things. I filled out the questionnaire, the computer scored it - Mild PDD (Pervasive Developmental Disorder). I knew it wasn't an official diagnosis, but I knew I had to look in this direction for my son. That was December 10, 2001.

More of our Journey

In April, 2001, I took Daniel for a speech and language evaluation with the local school district. He was 3 years 10 months old. As they took him to another room to do the evaluation, I was instructed to wait there & fill out paperwork. As he walked down the hall with them, he began to whimper. Soon, his whimpers became cries, then screams of "No! No!". They wanted to put earphones on him for a hearing test. I'd forgotten to tell them that he was afraid of earphones and loud noises. He covered his ears a lot, and screamed in public bathrooms.

Once in a bathroom at Wal-Mart, he was screaming and crying. An older lady asked me what was wrong. I told her that he just doesn't like the sound of the toilets flushing - I told her I guessed it was loud to him. She snorted and said, "Has that baby ever been in the bathroom with someone you didn't know? Something has happened to that child in a bathroom, and you need to take him to the doctor to see what happened to him!" I just stood there with my mouth open for a second, then I told her, "I assure you he has NEVER been away from me in a public restroom. The noise just scares him!" I was infuriated, and a little scared.

The evaluators weren't able to accomplish anything that day, so they brought him back to me and asked me to get a private hearing test by an audiologist, and to bring him back after his 4th birthday.

I took him to an ENT doctor, and she was unable to even check his ears, so we scheduled a sedated hearing test for the next morning. She asked me to keep him up late that night, wake him early, and not feed him breakfast. The next morning, we arrived with a sleepy, cranky little boy. They administered some form of liquid by mouth (Chloral Hydrate, maybe? I don't remember.) to sedate him, and we were told to wait until he'd gone to sleep. We waited and waited, and waited some more. After over an hour, they administered more of the liquid. He began to get drowsy, and eventually drifted off into sleep. I carried him to a darkened room to do the test. The technician stuck a little electrode into his ear, and he stirred but settled quickly. She was able to successfully complete the testing of that ear. As I rolled him over to do the other ear, he again stirred. We waited until he'd settled and she attempted to insert the electrode into the second ear. He woke up and was immediately wide awake.

The doctor decided to see how Daniel fared in the hearing booth. They allowed me to go inside with him, and he sat in my lap. They warned me not to give any indication that I was hearing anything as they didn't want me inadvertently signaling him. I was careful to sit very still and look straight ahead. He turned toward the sounds appropriately (little monkeys in the corners of the room, lights at the front top and front bottom), and they were able to determine that his hearing was within normal limits.

In August of 2001, I took Daniel back to the evaluators at the school system with ENT results in hand. They were able to conduct their testing this time, and told me they'd contact me with the results.

Remembering Continued

As an infant, Daniel had developed a fascination with my nose. I’d sit holding him in my rocking chair, giving him his bottle, and he’d sleepily look up at me while he drank. When he began to be able to control his hand movements, he’d started reaching up to touch my face, then my nose. Soon, every time I picked him up, he’d look at and reach for my nose. If I was holding him, his hand was on my nose. As he grew, he continued to reach out for my nose, but it became a need for him. He couldn’t go to sleep unless he touched my nose first. He’d toddle around playing, but would come over to me every few minutes to touch my nose. It was always the same - four fingers on top of my nose, the thumb at the septum, then his index finger would trace my nostrils and he’d turn his hand over to feel my breath on the back of his hand. The look on his face as he followed this routine was one of intense concentration. Often, he would grit his teeth, jutting his lower jaw forward, and place his forehead against mine while his hand explored my nose. His eyes would roll into the back of their sockets as if receiving great pleasure from the touch. I allowed it because friends told me it was his way of comforting himself. I thought it was sweet, a little odd, but I never saw a red flag in it. Interestingly, one of his first complete sentences was, "Mommy, I meed (he couldn’t say Need) to touch your nose." I’d then bend down to his level so that he could do just that. At almost 6 years old, he outgrew his need for my nose. He replaced it with sniffing my cheeks.

He would sniff my cheeks, he would sniff his new toys, other people, everything. He was constantly sniffing something. We began to have to teach him that it’s not polite to walk up and sniff other people, and after much teaching, he eventually learned to ask before sniffing, "Can I smell you?" Strange behavior, yes, but amazingly no one was ever offended by his sniffing. This particular habit came after his diagnosis, however, so I began to explain to people that it was one of the ways he learned about the world around him. Sometimes he would tell the person what they smelled like to him. "You smell like bacon." I would explain to them that he likes bacon so that means he likes the way they smell. One of his beloved teachers always "smells like Christmas" to him (to this day, he says she smells like Christmas - I think he "smells" her love for him). She’s VERY special, wouldn’t you say?

There were other things, so many other things, that should have been red flags to me, to his pediatrician, to his daycare teachers, but we just didn’t see it -rather, we didn't recognize it for what it was. For a long time after his diagnosis, I blamed myself for not seeing it earlier. I knew he was different, uniquely Daniel, but I was enamored of his peculiarities, and not troubled by most of them. Some things did, like screaming in crowds, or his apparent agitated hyperactivity at church fellowships where he seemed to almost vibrate with energy, running like a wild child, making these squealing noises while he "danced" his loose limbed complex whole body movement dances. These things bothered me, but didn’t concern me. To me, he was just "all boy".

Remembering...

I sit here typing these memories, and thinking back to the days when I first started noticing something - that elusive something - that wasn’t quite where it should be with Daniel. I remember asking his pediatrician at a little over a year old if I should be concerned that Daniel only spoke a few words. I remember the doctor smiling and telling me, "He’s the baby. He has an older brother who speaks very well. He just doesn’t have to talk. He’ll catch up." I remember being reassured and a little pleased that Daniel’s babyhood wasn’t quite past.

I don’t remember other symptoms or signs during that time. I look back at my diaries and see where he had the occasional bout of sleeplessness, but nothing profound jumps out at me. He seemed just like any other infant turned toddler, except he didn’t say quite as much.

At two, I asked the doctor again if I should be concerned, and was told basically the same thing. At three, I was worried. I took him to the doctor for a checkup, and asked again. This time he said we should stop talking for Daniel and make him repeat us, but we shouldn’t worry as there weren’t really other indications of any serious delays.

At almost four, I took Daniel to the doctor and insisted on a referral for a speech/language evaluation. Daniel echoed some of the words we said, but still didn’t often spontaneously speak more than one or two words at a time - never sentences. He’d also begun to use this strange gibberish sounding speech. I called it "fill-in words". I didn’t know what else to call it. He’d attempt to make a sentence, but just didn’t have the vocabulary to do it, so he’d say the one or two words he knew, and fill in the rest with the gibberish. Later, I learned that this is called jargon speech, and the echoing he did is called echolalia, and they are both ’red flags’ of autism.

During this same time, Daniel had begun lining up his Hot Wheels cars in a long, single-file line from my kitchen to my living room. He’d make sure they were meticulously straight, and organized by color or style, sometimes both. If we moved one car, or accidentally knocked one crooked, he’d scream as if we were beating him.

He’d also begun the bizarre behavior of bending forward at the waist, putting his forehead on the floor, hands extended behind his back, and he’d walk around the room that way - head against the floor, like a big inverted V.

He had taken to spinning himself, or little beaded dog-tag style chains held in front of his eyes, almost constantly. He wouldn’t look at me and hold my gaze anymore. His eye contact pattern was more of a look/look away/look/look away style. It disturbed me.

He was in daycare at this time, and he didn’t play with the other children. He walked around the periphery of the playground, always alone. He was hard to control in class and the teacher was at her wit’s end. He insisted on sameness as much as possible, and often screamed or cried when something changed. Once, at 3 years old, his teacher had gone on vacation, and a substitute was brought in to fill her place for the week. I had surgery during this week, so things were a little different at home as well. The day after my surgery, I received a phone call from the daycare. Daniel had had an accident in his pants and had smeared feces all over himself, the bathroom stall, the floor, and was in the bathroom stall screaming and crying. I wasn’t able to go take care of it, so I called my mother, who rushed there to find him standing in the stall looking wild-eyed and frantic. She calmed him down, cleaned him up, cleaned up the smeared feces, and took him home with her. At the time, I thought the smearing was his attempts at cleaning up his accident. Now I know that it was a cry for help.

Autism Awareness Month

April is Autism Awareness Month. In keeping with that, the next few blogs will be the tale of our journey with autism. These were originally posted in April 2008. If I need to edit anything, or add a comment, I'll try to remember to change the font color on it. No promises. I'm an old person. I forget.

Daniel was diagnosed in April. What a coincidence. Boy, WE sure became "aware", huh? I was thinking last night and this morning about the days leading up to - and ultimately receiving - his diagnosis. I thought I’d use this blog to write about it some this month. You know, a few years ago, I kept a really detailed diary - of our journey, of his progress, of little victories. Somewhere along the way, I stopped journaling it all down. I’m sad that I let life get in the way of doing that. I wonder what amazing things I’ve forgotten?

Right around the time Daniel was diagnosed - I can’t remember if it was right before or right after, my little cousin Kaitie drew a picture for me at school (I think?). It’s a picture of the sky, the sun, the grass, a flower, a small dark rain cloud and over to one side is a heart with an arrow through it....and the words "Journey of a Lifetime". I remember being amazed that she’d written those words because I’d already begun to think of autism in just those terms. Kaitie was, what? 9 at the time? I still have that picture.

Anyway, if you’re reading my BLAHg, (and if you’re interested...) check back. I’ll be typing out our journey, I think. And if you’re NOT interested...well, it’s all good if "our" journey doesn’t interest you. Just please don’t be uninterested in the epidemic of autism. Don’t be unaware. And certainly don’t be uncaring. There are too many people affected by it for it not to affect you in some way - if even a small one.

So, here we go..
The first (well, technically second) in my BLAHgged series about our journey. I’m just typing out stuff that I’ve previously written down. Once upon a time, someone (several someones) suggested I write a book about our journey...I considered it, prayed about it, looked at all the books that are out there on the topic, and still just don’t know that our journey is any different than countless others - only the names have changed - LOL. Still, I wrote some things down in an effort to see if it was even something I WANTED to do...so, for now, I’ll just share it with you. If God leads, someday maybe I’ll share it with the world. Or maybe not.

Speaking of the world - today is International Autism Awareness Day! Be aware! (World Autism Awareness Day is scheduled for 2 April 2009 this year.)

Here goes:

I watched as she played with Daniel, my baby. She tried to engage him, to seek out his gaze, to play with him. I watched as she clowned with him, trying anything to evoke a response typical of an almost 5 year old child. Then, I watched as she scribbled notes on the clipboard that was never far from her hand. Several times, her glance met my eyes, and I knew she was weighing my emotions; pre-forming the words she’d have to say to tell me what her opinion of my son would be.

Minutes later, we sat across from her, Joel and I. This soft-spoken woman with the equally soft name, Sonya, read the list of criteria that fit Daniel’s idiosyncrasies. She leaned toward us, lowering her voice as if to soften the blow her words would surely bring, and delivered the words I already expected, "It is my opinion that Daniel meets the educational criteria for Autism."
Autism. Daniel has Autism. I knew it. I’d known it for months. I leaned back in my chair watching her as she watched me. I think she expected me to cry, to scream, to deny what she’d just handed me. But, I just sat there looking at her. I heard Joel’s quiet sob and knew he was trying to hold himself together. I patted his knee. Turning toward Sonya, I said the words that officially began the journey we’d unofficially entered two years before, "So, what now?"