Whatever You Are, Be A Good One

I have a very dear friend, named Courtney. We became friends in high school and have remained friends ever since. It's been about 15 years, give or take a year. We lived together in our late teens/early twenties and during this time, and years after, Courtney worked in group homes for adults and children with Special Needs. She loved the people with whom she worked, with a passion that forever changed my view of people with Special Needs. Little did I know then, that living with Courtney and hearing her thoughts, opinions and emotions regarding the people she cared for, was helping to shape me into the mother I am to Abby today.

(Courtney and I at the North Idaho Fair, riding a stuffed bull, circa 1996)

When I first told Courtney about Abby's autism, she said something like, "What is the great irony that, Erin, one of the most verbal people I know, would have a child that doesn't know how to communicate?" It is both ironic and perhaps fitting, because who better to raise a child who struggles with communication than a person who thrives on it? This is not to suggest that my methods with Abby have always been perfect. On the contrary, I think there have been some things that I've shared with Courtney that I sense she, as both a mother and an educator, has disagreed with. At first that made self-concious, but in the long-run it has been a check to me that I appreciate. While I stand by the majority of my parenting decisions, there are some that I certainly wish I could go back and do differently.

Courtney is now a teacher in our home-town's school system where she works with Special Needs kids and, of course, kids with Autism. I've so appreciated her comments on my PDD-NOS post, that I've decided to post them here, to make sure that they aren't simply passed over. If you weren't able to read the initial post that sparked this series of comments, please take a moment to do so by clicking here.

I'm so thankful to have Courtney in my life. She has proved to be a great friend time and time again. I look forward to the time we will surely spend together when our children are grown and we are reflecting on our lifelong friendship that has long surpassed 15 years.

(This photo was taken last August at another dear friends' wedding in Washington state)

Courtney: "Ok here's my take, obviously from a different perspective than a parent of an autistic child but as someone that sees trends when comparing the abundance of children coming to me with all sorts of developmental delays.

As long as any child has pervasive developmental delays they will receive special education services, and that is the way it should be, I think we all agree on that. Children with PDD are also encouraged with communication and social interaction as ASD.

I get a lot of first grade students with a PDD criteria and it is a very vague descriptor of the child, but they have the same rights as a child diagnosed with autism. So even if the PDD wasn't under autism spectrum, you would still get the same rights to individual education and all that good stuff. I think that what they do with the PDD diagnosis is the best solution I know of for the child, teachers and the health community as well. Not that trying separating and diagnosing all these people is ever going to be perfect or anything.

I have seen some children diagnosed with autism completely change and turn themselves around in communication, interpersonal relationships and academics. I have see other children with the exact same diagnosis living in a full time staffed assisted living home never talking or being potty trained. Now these two people obviously should have different diagnosis'. If students are diagnosed with PDD instead of autism when they are high functioning on the spectrum, they, their families and the medical community won't be quite as surprised to find that this autistic child's family must have found a cure that the other more severe autistic child's family didn't have. This situation, to me, is scary because I would hate for a parent to treat their child medically because they heard of a treatment that was effective for a condition that is incorrect ya know?

Anyway, what do you think? I wrestle with figuring out these issues all the time because my job is to decide what to "call" kids and qualify them for services. Let me know!"

Me: "Thanks for your input, Court. I'm always interested in your take on the situation. I listened to a few radio shows about this yesterday as I caught up on my NPR podcasts and I feel a little better about it on one hand and that much more confused on the other.

The first story, advocated for taking away all of the various labels, because what's happening in some places (it happened to us here) is that the kids who fall under the PDD-NOS and Asperger's aren't qualifying for services, because they are so high-functioning that they are seen as high need. That is soooo not true. Otherwise, how do we get to the point of success that some kids reach? Those that no longer fall on the spectrum at all. So if we classify them all as simply "Autistic", they will have access to services just like any Autistic kid.

Yeah that makes sense to me.

Then I listened to a very articulate man who has Asperger's. He said that while he could understand the point made earlier, that he had a real problem with being placed in the same category as an Autistic person who has the severe delays such never speaking and never being potty trained. He was concerned over the stigma that people with Autism already face, being applied to him. A person who certainly has social issues, but is so high functioning that he is able to have a successful career and life in general... well the typical idea of a "successful life". Because my idea of what makes for a "successful life" for my kid has become quite different.

So all in all, I don't feel quite as weirded out by the proposed changes, because I think their goals are just and could lead to better services. As for the view from members in the Asperger's syndrome, it's an understandable concern. It just helps solidify my goal in helping to further the average person's education on Autism in general. We'll all find ourselves confronted with it at some point in our lives, whether it's our kid, the neighbor kid, our niece/nephew, or the kid greeting you and giving you a grocery cart at Walmart.

So in the mean time, I'll continue my quest to write about it and share my idea of what it means to Think Differently about Autism.

Thanks for weighing in, Court! XO"

Courtney: "Oh my goodness, Friday I went to work and we had representatives from the region autism society. Talk about confusing! First they started out saying that autism was defined as a lifelong neurological disorder. So in the question and hopefully answer segment, I asked "so if researchers have determined that this is a lifelong neurological disorder, does that mean they know that people with autism are dealing with the same type of neurological dysfunction and what that dysfunction is?" She they both start just shaking their heads no.

So the "experts" go on and talk about how we as teachers go accommodate autistic children. They go on and on about what autistic children may or may not need. But it was awful because they started stating what autistic kids aren't going to be able to do and what autistic kids are going to hate. But they went on and on to the point where they were talking about how they can hate writing or other serious basic aspects of life. I could see on the other teacher's faces, it was like "so your saying I shouldn't push for kids to adhere to basic expectations or accommodate every tick these kids have?" It was just bad.

They shouldn't even put all autistic kids in the same category. It would be like telling a doctor to treat you for an illness, and not telling the doctor your symptoms. It doesn't really help.
Anyway, after that I was visiting with the Gifted and Talented teacher, and we share several "autistic" children. We decided that we are going to look back in 20 years and feel really silly about how we groups all these kids together that obviously have different syndromes and called them by one name.

What do you think?"

Me: "I think that I am sooo thankful that there are educators like you in the world, Courtney. I wish you could meet Abby's teacher. I think you both would have many things in common.

I think that the issue with putting people with so many varying factors under one Umbrella Diagnosis, is that you'll get some doctors and educators who will attempt to treat them all with the same treatments. And as any of us who work/live with those in the Autism community knows, they are all different. So this concerns me.

On the one hand, I appreciate the idea that if you're simply diagnosed as being Autistic, you'll be eligible for more services, where Abby was denied further services, because she "isn't severe enough". Awesome. (My "awesome" here is sarcasm for any people reading who might not know that sarcasm is my native language.)

But on the other hand, I've experienced first hand the pediatricians who have read one or two "Autism Symptoms" forms and have told me repeatedly that my child was "normal", so the general umbrella concerns me. How many children will not respond to the "standardized" treatments/therapies and then go untreated or worse yet, will it give insurance agencies the right to deny coverage for the parents/teachers/therapists who seek other treatments/therapies outside of the standardized set of approved treatments/therapies regardless of their proven successes?

I do however agree with calling it a "lifelong neurological disorder." Because I think it is. I've gotten some flack for this theory, but it's what makes sense in my mind. I liken living with Autism to being an Alcoholic. I don't believe that a kid with Autism can be "cured", but I do believe, whole heartedly, that a child can learn to manage their Autism. An alcoholic can stop drinking entirely and learn to curb, or manage, their addictive cravings, but they are indeed still alcoholics. My sincere hope and goal is to help Abby manage her Autism. I foresee a day when she is in a social setting and will feel an Autistic tick coming on. She can either explain it with confidence and eloquence to her company, or she can simply excuse herself to a private space to allow her some time to let the tick pass. When I speak of "Thinking differently about Autism", I hope that we as a society will learn to view the Autistic ticks that these people live with and excuse them as normal for those people. That's my sincere hope.

So the fact that it's a "lifelong neurological disorder" doesn't mean we give up hope, or place them all in the same diagnostic category, or the same treatments/therapies, it simply means, to me, that we learn to live with it, in spite of it, and thrive with it.

I know that Abby will find her path in this world and whatever it is, she will be successful, however she chooses to define success.

"Whatever you are, be a good one." -Abraham Lincoln"

Thanks for being such a great friend and teacher, Courtney! XOXO

Almost Half-Way Through Chapter Four.

Have I mentioned how much I love my new laptop? I LOVE IT! I'm sitting on the couch next to my kids watching a second episode of Super Why (Abby's favorite!). We are all still in our pajamas and enjoying a lazy Sunday morning. I was inspired to write, because as I was zoned out reading the most recent issue of TIME magazine, Abby was trying to get my attention.

I've become very good at tuning out the world around me as I read, much to my husband's, and probably my children's, annoyance. But I'm pretty sure I've heard other mothers speak about this ability before. It's a survival tactic if any of us are expected to maintain our sanity amongst the squeals and screams of sibling rivalries, adolescent girls and/or the communication break-down that so often IS Autism. I was deeply engrossed in TIME's "Best of..." list for 2009, when I realized Abby was saying, "Mom, I want to talk with you!"

Whoa! No whine? No scream? A simple and straight-forward, "Mom, I want to talk with you." Amazing? Sure. But not what inspired this posting.

When she finally did get my attention, it was to tell me that she wanted to watch another Super Why as the first was ending. After I'd set up the initial episode to play from the DVR, she'd demanded, "Put the remote controls away!" I had joked, "Yes, Ma'am!" as I put the remote "away." When I reminded her of her sassy-pants instructions earlier, she smiled, wrinkled her nose and did a little sniff/half-laugh at herself.

She appeared so grown up to me as she enjoyed our little inside joke. I enjoyed it, too. Had the room been filled with other adults, it's likely that no one else would have understood our little joke. It wasn't really all that funny and deserved little more than the sniff/half-laugh that she bestowed it, but to me it spoke volumes.

It was the first time that she and I really connected on a more mature, inside-joke kind of level. My little girl is not a toddler anymore. For the most part she has shed the habits of a toddler and is now a small child. And I like it. I'm relieved.

I was reminded of something a friend said to me once a few years ago. Her daughter was just three and Abby was still a baby. I asked my friend, out of curiosity, if she planned to have any more kids. She answered, "No. I don't do so well with babies. I love them, but I'm better with kids." It struck a chord deep within me and I've thought of that often over the years.

I think it struck me, because at the time I was feeling guilty that while everyone around me was counseling me to "enjoy them while they are this little, because it goes by so fast," I was daydreaming about the day when I could have a conversation with Abby. I was longing for a little girl instead of a baby.

I was already keenly aware of how fast the time was flying, but I was grateful instead of sad. I knew what my friend meant. I adored my children as babies, but I'm happy to reminisce through pictures and memories, while making new ones. I might occasionally think warmly of Bean's tiny hand wrapped around my waist, tickling my skin as he nursed, but those memories are also accompanied by memories of sleep-deprived days when I was not at my parenting best. And while I might miss the feel of their tiny bodies in my arms, I do not miss those times when I felt downright "crazy". Not one bit.

I'm trying my best to enjoy these moments when my kids are small, because I know these moments are fleeting, but I'm so looking forward to inside jokes, hearing stories from my kids in addition to me telling stories to them and having real conversations with them.

It's the collective chapters that make a whole story. Like with every good book, I can hardly wait to get to the next chapter and in the end, as I finish the last chapter of our book, it will surely be bittersweet.

(All photos by Grandma Mary Johnson)

Abby's Map

I'm sure that some of my readers out there are curious as to what high-functioning Autistic even means. Some days, I wonder myself. Ha! So far what I've come to is that at times Abby seems totally typical. She will speak clearly, concisely and intelligently and we'll wonder, "Is she even Autistic? Am I raising her to think she has something that she doesn't?" And some of Abby's grandparents have expressed some similar concerns. I think it's valid to wonder. And even though I live with her daily and have been to the Parent/Teacher conferences enough to know that we're pretty much in agreement that she is somewhere on that broad spectrum of Autism, the line between typical and high-functioning Autism can be a bit blurry.

I had forgotten about this video. I recorded it a couple of months ago. I recently watched it again and found it interesting how it was such a good example of the tics that ARE Abby's Autism. This is a great example of what it's like when Abby's is "ASD-ing out" as I've begun to think of it. Much of the time she behaves very much like a typical 4 year old, but at times like this, she is definitely a kid who lands on the Autism Spectrum. She loves this map and often can point to many different States after being asked only once and can even tell you who in our family lives where, all without the various noises and hand tics.



She kind of pulls it together in the end, though I still have no idea what she is talking about at 1:55, something being raunchy? I don't know. But what makes this video such a great example is that it shows how she flows from typical to autistic behavior. And some days are better than others. Some days, the tics don't seem to affect her hardly at all. Other days, she seems consumed by them, finds it hard to communicate effectively and those are the days we experience more screams and whines.

Hope you are all remembering to take time to enjoy your days as we approach the busy holiday season. I am so swamped with homework and feeling so overwhelmed, but I'm trying to take time to enjoy my kids each day and to do something I enjoy. Yesterday I finished off the chalkboard I created on one of the cabinets in our kitchen. I get so much satisfaction from finishing these projects. Today, I am going to finish painting the living room walls and the bulkhead in the kitchen... and do a ton of homework. I hope. *fingers crossed*

Communication Breakdown

"The most important thing in communication is to hear what isn't being said."
~Peter Drucker (1909 - 2005)

One of the many roadblocks we faced when trying to
"diagnose" Abby's autism, was that she talked.
Kind of.
And the two main symptoms of Autism that people/pediatricians focus on is eye contact and speech. Abby participated in both of these things, so people were quick to dismiss our fears.

Abby actually has a pretty large vocabulary. The problem lies not in her inability to talk. The problem lies in her difficulty to communicate using those words. Until starting school this past January, she mostly engaged in what is known as Echolalia. As defined by Wikipedia,

"Echolalia is the repetition of vocalizations made by another person. Echolalia can be present in autism ... Asperger syndrome, Alzheimer's Disease and, occasionally, other forms of psychopathology. It is also frequently found in blind or visually impaired children, although most will outgrow this behavior. When done involuntarily, echolalia may be considered a tic."

It was very frustrating to know that your child CAN speak, but not to understand why she "chooses" to scream rather than use the words you know she has in her vocabulary. I remember many a time losing my patience and sometimes my temper over what seemed like her refusal to use the words she knew. Instead of asking for her drink or for the crayon she just dropped, she would scream and throw a fit. Then when I would ask, "Do you want your crayon?" She would repeat, "Want your crayon?"


Because I didn't know about Echolalia, I viewed this as Abby's refusal to use words. I would insist as she was throwing tantrums that she "use her words" before I would "give in" to her tantrum. Well this helped nothing. It only made the tantrum worse. Because what I didn't understand was that she might know how to say the words, but she didn't understand how to communicate her wants and needs using those words.

I look back on those times that I lost my patience with her, wishing I could go back knowing what I know now. I wish I could go back and be the patient and loving mother that I always wanted to be. Not the mom who had been screamed at ALL.DAY.LONG. by the little girl with the giant scream and the mom whose patience had worn very thin. I feel badly for the sweet little girl trying to communicate to a mother who had not yet learned to "hear what wasn't being said." I still fail miserably at this some days. But thankfully, those days are few and farther apart now. I can only move forward and do better tomorrow than I did today.

This morning I was treated to a rare gift. My husband let me sleep in until 10 am!!! It was wonderful. When I finally did wake up, Abby was seated at the table, coloring in a notebook with colored pencils. She said to me, "Hi, Mom! Want to color? Come sit down in the seat." as she pointed to the dining chair next to her. She didn't scream at me once. When I complimented her on her excellent choice of words, she smiled and said, "Come on, Mom! Let's color!"

I cannot express to you how proud and thankful I am to have heard those sentences from her today. I'm crying now as I type these last words. The relief I feel at knowing that it's possible! By being patient and looking to understand what it is that Abby is trying to communicate when she doesn't use words, she is finding her voice and finally, finally learning to communicate. This makes each scream a little more tolerable and thankfully, like my least proud parenting moments, those screams are becoming fewer and farther apart.

There is hope. Always hope.