Sunday, April 1, 2007

Another Side of Autism

ANOTHER SIDE OF AUTISM – by Ashley Morgan.

Note: This is a longer draft version of the article published in The Autism
Asperger's Digest, Jan/Feb'08. I originally wrote this late summer '07


It’s been four years since I’ve managed a full-time therapy schedule for my 8 ½ yr old son. Leo is in 3rd grade at the regular public elementary school, just as he always has since Kindergarten, with no aide or therapy. Amazingly, I can say my son is no longer disabled by Autism.

I am not here to gloat or share how great I am. Or that we’ve done something better than any other Autism parent out there. What we’ve done to help our son isn’t unique from what many families have done. But since each child on the Spectrum is their own special blend, the painful truth is not all children make dramatic gains with the same viable therapies we have today.

I am here to share some good news for a change, many do reach a functioning level considered ‘normal’ to the layman. Our outcome – recovery, stabilization, homeostasis, can happen. Does happen. And this is what it’s like for us. I believe every child deserves to reach their potential, whatever God has intended for them, regardless of their parking spot on the Spectrum. Each person with Autism and their family is different, and these results demonstrate how Autism is no longer a hopeless untreatable disability.

A Camp Day in July 2007
I sit back in my lawn chair at the neighborhood pool watching my son jump with abandon into the deep end. He surfaces with a spongy ball and a big smile, and with determination throws it forcibly to one of three other boys that are playing catch. One is his closest friend since Kindergarten. The others are friends from his regular local elementary school. Kid sister is nearby in the shallow end playing mermaids with her friends. Dad will be joining us here after work with Mexican take-out for dinner.

I am dry, in regular clothes, by the pool, with an unread magazine in my lap. I could glance at it if I want to, my kids are strong swimmers now, but I enjoy watching. I find it peaceful to observe life as it occurs right now in this moment. I am mindful of this daily gift I have received. I am the mother of a happy child that has choices. Seven years ago my son was diagnosed with PDD-NOS. And let me tell you, ‘happy’ wasn’t a word we used to describe Leo.

We agonized over our ‘difficult’ baby until he was diagnosed just before his second birthday with PDD-NOS. We lived the life of an Autism family up until the summer before Kindergarten began, at 5 ½. Life as a ‘normal’ child, whatever that is, became our very different life. Leo’s Kindergarten, 1st, 2nd, and current 3rd grade teachers did/do not know he used to have
an IEP or that he has an Autism diagnosis. Nor do any of his peers or their parents. We kept this a secret so Leo wouldn’t be discriminated against or live with any stigma that would affect his choices. Leo may have Autism, but he is no longer disabled by it.

Earlier, Leo was picked up at nature camp by a mom whom he briefly met before we started carpooling. Leo wasn’t concerned with what exact time she’d arrive or even the kind of car she drove. He’s been to this camp before, but he attended without knowing any of the children. By the second day, he already belonged to a little group of three boys. He enthusiastically
tells me about these new friends during dinner. He’s also become friendly with the carpool boy, playing basketball games, X-Box, or Webkinz almost every day after camp. I listen in to their conversation on the drive home “Hey, did you see the baby rats? Did you see those animal tracks? I saw you canoeing today.” They talk on and on about school, speculating about
what teacher they’ll get in the Fall.

While the kids were at camp, I checked my email and started packing for our upcoming trip to see family. Just a few emails; scheduling fall activities and coordinating play dates for after our trip. I am happy that Leo gets to see a few of his friends over the summer. The phone was quiet, just a call from my sister. I finished organizing the kids’ school files and my PTA stuff
from this recently ended year so I can move them into the basement. I think about all the time I’ve already spent at their school, for speech, OT, and PT therapies, and IEP meetings, most of it before Leo even attended as a student.

Leo Before

I was really excited about my new little bundle of joy, our new apartment Ianthe big city, and the new family that my husband and I created. A family that was truly mine. When Leo began having small tremors following nursing at 2 months old, I was very nervous. The pediatrician followed by a neurologist both dismissed them as nothing, and told me to go on with life and if things worsen, to let them know. Things didn’t worsen, but they stayed the same. That was bad enough. I dreaded the end of a feeding, looking down for any stir and followed by the familiar jittery movements. As tiny as they were, they seemed so huge that they took up the room.

Do nothing? There words didn’t ring true to me. It didn’t feel right that a baby could do this with nothing wrong. I searched online and at the library and got nothing. Everyone told me to believe the doctors. This is the Big Apple after all. Who am I, an insecure first-time mom, to question them? I quickly learned that moms don’t know anything. My pure joy of being a mom
began to fade as chronic anxiety and depression took over.

By the time Leo was 4 months, severe separation anxiety kicked in. I couldn’t put him down for a second. Literally. I was so distressed. What was I thinking? I can’t do this, this whole mom thing. I must be doing something wrong and I have to get to the bottom of it. Leo had to be constantly held, he nursed EVERY hour just one side, and I couldn’t leave him in the care of anyone but my husband.

We babysat my friend’s baby that was just a few days older with no hiccups. This was the big plan, trading date nights so us new parents can get out. The baby was sweet, calm, and aloud me to put him down under the play mat. Adorable. We took lots of pictures of Leo’s first friend.

When it was our turn for a night out, I was filled with anxiety. I knew this may not work, but I had to try. Everyone told that we just needed practice. That’s all, just practice. The family came over, excited about the prospect of extra responsibility. I didn’t know what to do. I felt like a deer in the headlights. My screaming infant was so wound up he threw up. Embarrassed, I let my new mommy friend go home, pretending that we’d try another time. My hope for a new social circle went out that door too. I hung up my newly purchased post-pregnancy duds in the closet, knowing I may not see those puppies for a while. I knew something was different about my son, and I hoped that this ‘high maintenance’ stuff would eventually fade. No one
seemed concerned. “All babies are different, everything is normal for a baby” is what I was told.

I watched while other moms seemed to move forward into the next phase, life with a baby. I stayed home far more than I ever expected with my baby I couldn’t leave. Leo had a sleep schedule that began with him waking at noon and going to bed at midnight. I tried tinkering with this, but regardless of what cruel things people suggested I do with a 4 month old, I stuck with
my gut. Half the day was over for my new mommy friends before I left my apartment. I looked forward to my weekly ‘play dates’ with the other moms until I got a comment about Leo’s lack of expression. I got very upset but kept it to myself. The pediatrician continued to tell me that everything was normal, even when I told him I was concerned about his head control. Of
course, we discovered later Leo had hypotonia and overall weakness.

I was so confused. What the hell is going on?

In my new house in the suburbs, the isolation continued. Failed attempts with babysitters kept me at home with Leo rather than going back to work. One babysitter worked out if I left just for an hour. She was getting a degree in Early Childhood and wasn’t concerned either.

As a toddler, every day was the same for me. I’d sit on the floor and observe my son, chronically perplexed by his ‘play’. It sort of looked ‘normal’ to me. He did have a toy in his hand, he just did the same thing over and over with it (stimming). I had no experience with children, and Leo was the first child on both sides of our families. Alone, I’d stare and stare, wondering what else I could do to figure this out. He didn’t seem sick, he seemed content. As long as he had his wheels to spin that is. As long as he had match box cars in both hands everywhere he went or else he’d tantrum and look like he was going to collapse with fright. As long as he could line up his yogurt cups and baby food jars at breakfast. I was unaware that this thing was sneaking up on me and taking over our lives (the stimming).

Leo would wake up in the morning, climb down the stairs to our play room,and turn over all the cars and trucks I had neatly put away, and spin the wheels while staring at them. The entire day. I’d ask my new mommy friends what they thought, and they said ‘boys are obsessed with cars and trucks’. I’d ask everyone, my pediatrician, my family, my babysitter, and I
got the same answer, but again it didn’t ring true. I looked again online and scoured my baby books but found nothing describing what we were going through. I found out that one of the moms was a child psychologist. I came to the park knowing she’d be there so I could casually quiz her about child development. Leo was with me, and she said the stuff I’m describing is all normal stuff. “Language delays are typical for boys”, she’d say.

Time seemed to stand still for us, while Leo’s body just got bigger. Dark circles became prominent, fatigue and spaciness set in. He just didn’t look right. I started to think that it wasn’t my lack of parenting abilities. He seemed so frustrated because he couldn’t communicate. He acted so helpless and clueless most of the time. Sometimes just deflated. Leo had no interest in any toys other than something he could spin or line up. Only content on my lap at play dates, he’d focus on a playmate’s truck or other spinning toy rather than the other child. He’d look right through people. I had no choice but to give up play dates and Mommy and Me classes, because neither of us ever had fun.

He passed an ENT/audiologist evaluation. I knew that he would, but I knew I had to get it done to hone in on what it was.

We eventually received services from our state’s Early Intervention (EI) program. A language delay so he got a special ed play mate. Not even a Speech Pathologist. Oh, and later I found out they knew right away he had an ASD, but didn’t tell me because they were not doctors. He was quite ‘poster boy’ at that time. I went ahead and got pregnant with my daughter. Something I would’ve waited to do until I learned more about what I was getting into.

I eventually self-diagnosed my son and began my search for a diagnosis. New to the area with no family locally, I was desperate for support and answers. When I asked EI for names of other parents in the area that I could talk to, they told me that I was the only family with Autism. And I took that at face value. In reality, there were many children which of course I met later on. In fact, two in my neighborhood.

My pediatrician didn’t believe my son had PDD-NOS, and challenged me to “prove it” by making a video that, in his arrogance, I doubt he ever watched. After denying my 11th round of antibiotics, I switched pediatricians and began scouring the earth for therapy that seemed to fit Leo. Ignoring the babysitter, friends, pediatricians, and EI I spent all my ‘free’ time networking
in nearby towns for families, therapists, and just ideas. I was desperate for help, and nothing seemed to fit. My son had occasional eye contact, was affectionate, seemed to understand most of what we said to him. Leo wasn’t destructive, and mostly compliant as long as his rules applied. I had no idea I was under my giant silent toddler’s thumb.

After doing a little research, I asked EI about ABA. They told me ABA wasfor lower functioning kids, and in fact they didn’t approve of it for most kids. This is what my school district said when he turned 3. All the district would
offer was a special ed classroom. After observing, I knew it wasn’t that place for Leo. He didn’t fit anywhere, but even less in that place. Glorified babysitting. I had no one to ask what to do. No one had an opinion outside of the district. Yale gave me deficits, and I read them over and over until I could recite them. Nothing I could find seemed to address them. I didn’t sleep (really) for about 2 months, finally deciding to place him in a local private regular preschool instead of the district’s preschool. No one I knew did that. Was this really the right thing to do? All my friend’s kids were in special programs, why not Leo?

I went along with the district’s opinion of ABA, quietly taking their ½ hour a week of speech as Leo’s program for Autism. I quietly ‘pounded the pavement’ looking for therapy that would address the deficits that Yale diligently detailed out for us. I thought this whole thing was insanity, schools not helping children with a major disability. I believed there HAD to be people and therapists that would understand my son and help him. I continued to search and search, making connections in my ‘free’ time. At the time, there were no support groups for Autism in my area. Good thing Ihad a small group of Autism moms that literally saved me.

I was a strange experience doing something entirely different than the other moms in my group. I went rogue, with no feedback from anyone that I could be doing the right thing. What worked for them didn’t seem right for Leo, so
I stuck to my guns and kept plugging away, never taking second best. We did all organic and whole foods whenever possible. We mainstreamed him right off the bat. Something I didn’t know would work. He seemed ‘fine’ according to the speech pathologist’s observation. He’d tap and chant on occasion, but nothing too disruptive to get him kicked out.

It slowly dawned on me that taking ownership of my son’s wellness worked. With a little success under my belt, I revisited ABA and finally found a different ABA provider, one that understood Leo completely. Within 5 minutes of meeting them, I knew I was finally home. Sure it took approximately 1 ½ years, but who’s counting?

ABA-NET eventually became the cornerstone to ‘finishing out’ my son’s social deficits and no longer needing therapy or even a shadow at school. After countless hours of networking, I finally hit the jackpot – a mom of a recovered older boy had a name. A name I’d heard of before. I hadn’t heard of recovery before and frankly, I thought she was crazy at first. But I
listened very hard, and I believed her. I knew now to only believe other moms. I also heard her describe her son that seemed like mine. I found the name in my notes, a nice cross-reference, totalling 3 recommendations. This was good timing, as at that point, I was very pregnant and concerned about my next child, and what in the world was I going to do with an infant
and a toddler on the spectrum?

I quickly learned about perspective taking, Theory Of Mind, Executive Functioning, Cause and Effect, all of these things that I had no name for crystallized. They were names of detailed programs that, after prerequisite skills were mastered, were Leo’s ABA program. I was beyond excited.

After that, I got angry. Angry that I’d been deceived by the school district. Angry that I had to fight for the right thing. I was angry that my son lived in a chaotic world, and I wouldn’t stop until I found a way to make him happy. I was angry that most people I spoke with didn’t know about the therapy we were doing. And the state of Autism programs? Pure injustice. The worst possible. Cheating disabled children? You’d think I was reading a fairy tale. Knowing ASD children were walking around with no true support or very little support drove me crazy.

The school district continued to force the sp. ed. class down my throat any chance they got. A hostile relationship after I got educated. It was also hostile at the elementary school, the place where Leo got OT and speech since we weren’t part of the special ed program. They wouldn’t give me even a chair to sit on while I waited for Leo in the hallway while he was in speech. I had to keep my infant quiet to boot. Sitting on the floor, I waited there in case Leo needed to use the bathroom. The speech pathologist couldn’t, by law, accompany Leo, a 3 year old, into the restroom. Leo also had to be weaned off my lap, the place he received a lot of his early services. Otherwise, he couldn’t concentrate.

The noise from the buses, the gym, and the halls set him off on countless occasions. Once he was swallowed up by a group of basketball players that didn’t see us. Leo had a panic attack, and we lost days of therapy because of recovery time.

Leo had other issues like most of our kids. He had a fear of toilets and plumbing in general. Every bathroom visit was excruciating. This would interfere in just about everything, including the therapy at the school mentioned above. He hated small rooms and rooms with doors closed. He’d limp on purpose on one leg while walking, slamming his feet down hard to
get input. He’d chant, bang his hands, tap his fingers, whenever possible.

I think about that intense year of aquatic OT when he was little. The one hour of driving each way, the expense, all while taking care of Leo’s little sister. Our goal: The ultimate, a swim-safe child. This seemed impossible since the initial goals were to address sensory defensiveness, vestibular and proprioceptive challenges, fear of dying, hyposensitivity in legs, hypotonia in his arms and upper back. I was raised in Southern California on the beach, so I always had envisioned sharing my love of the ocean with my children. I think about Leo’s anxiety the night before each swim “lesson”, how he’d worry himself sick, rarely sleeping.

Today Leo has choices. He chooses to swim with his friends. We can go to the beach. At nature camp, he learned to wade and canoe, not concerned that he can’t see what’s under the water. Pretty surreal.

I think about how any change in routine would cause anxiety. Being 1 minute late would bring him to tears. I think about Leo’s intense separation anxiety that made it impossible to place him in the care of others. Being around other children would cause anxiety.

What does Leo think about all of this? His past?

Leo knows everything there is to know about his disability, but without the label. We focus on what he’s accomplished, and where we’ll need to continue. Mom has stuff to work on. So does Dad and kid sister. When he wants to know the Label, we’ll tell him. When this happens we will also have the opportunity to tell him about the other children. This past year, his classmates included two other children on the spectrum as well as a couple more IEPs for various issues. I continue to facilitate those friendships. I speculate they’ll need each other in the future, maybe as teens.

We recently had many conversations about his cousin that has Down Syndrome. I thought he might ask about himself. But no cigar. He really "got it" about his cousin whom he loves so much. He even empathetically mentioned how his aunt and uncle must have a hard life. If he only knew. During our trip to see family, our close friend’s dog died. A dog I’ve known
longer than I’ve been married. Again, Leo really “got it”, and didn’t complain when we had to postpone our visit to see them. Although he barely knew this dog, we have dogs, and he cried for their loss. He also thought it was amazing that we knew this dog as a puppy before his father and I were married. Love that perspective taking, appreciation of history, his sense of time.

Leo Today
Leo sleeps with his cherished Webkinz most nights. The unique part, he puts them in alphabetical order by name. He’s named them all real peoplenames, like Tom and Derek. He says he doesn't like to come up with the name for stuffed animals. He likes it when they come with one on the tag.

During baseball, he prefers to have the same position, always wanting 1st base. He collects Geronimo Stilton books (loves reading them), enjoys baseball games right to the end never tiring, music concerts, and parades. His favorite thing to do is go to the neighborhood pool. Not for just the swimming, but for the beach volleyball and playground.

Recently, we’ve been playing Old Maid as a family. He doesn’t have a good poker face, but has good strategy, noticing his opponents’ habits, and triesto take advantage. Love that Theory Of Mind working. He notices unique license plates and enjoys geography and history facts. Leo is a quick learner on the piano and music theory in general. No surprises there!

He’s very genuine, fair, has a great sense of humor, and is the sweetest, gentlest guy. Especially when you look at how big he is for his age. We talked a lot about homeless people, the causes, what it’s like for them, since we observed so many along the coast during our trip. His first response, "We should invite them home with us and help them.”

I hold a common fear that many parents have, that our children will somehow get taken advantage of because of their innocence, their naivety. While waiting for a flight at the airport for that family trip, Leo’s social abilities were put to the test. A questionable character in the waiting area began talking to Leo, asking him personal questions. He protected himself. When asked what town he lived in, he said “I forgot”. He avoided eye contact with the man while boarding the plane by taking advantage of a nearby billboard, pretending to read about the arriving flights. He told me later that right away
the guy seemed “creepy”. And he was right.

I will always monitor Leo’s development for Autism support, but so far he's looking good. He’s an above average student that’s very outgoing and social. He’s well-liked by his friends and their parents. I get compliments regularly about how friendly and social he is. If they only knew why he’s so comfortable talking to adults (because for years that’s who his playmates were!) We continue to monitor...

Leo is a 3rd grader, that marker year, so I realistically know there may be challenges. I'm ready for whatever it is. His residual issues lie in the executive functioning area, which manifests for him by having trouble with monitoring his external thoughts. So, about once a day he'll "talk out of turn". It can be disruptive on occasion, but as a whole, he doesn’t affect the classroom more than any other child’s unique contributions. The good news is that we see slow improvement. He just has to stay present and conscious to his thoughts - a lot of work on his part.

We continue to monitor his health, as his unique GI and immune systems need help, and with each year that passes, he’s healthier and healthier. That's all that's "left" and I'm grateful for it.

Leo enjoys carpooling to baseball with his friends, doing sports trivia in thecar on the way. It’s still so unreal to me. He goes with another mom in another car! And he’s okay.

Mom Today
Am I an Autism parent? Yes. Has my life changed in 4 years? Yes and No. I don't have an impossibly giant schedule to manage and implement. I have similar fears and concerns, but they exist at a lower volume in my mind. I occasionally experience PTSS symptoms, such as when it’s time for a parent/teacher conference, or when we have a very ‘off” spectrumy day. I continue to manage chronic anxiety. We are still in debt although we are much better off financially than we once were.

Rollercoaster days are few and far between. Those ‘off’ days are hard, as I’m not used to them like I once was. I’m grateful that I’m not living in crisis mode anymore, so these days no longer do me in.

I’m still angry though. Angry that I have more company, meaning more and more people I KNOW and more people I meet have Autism. I’m angry that the issues at hand years ago are still the same today.

Unlike what most people think, the transition leaving the special ed world was hard. We miss the therapists that were like family and are no longer part of the fabric of our daily lives. No more pages of diligently detailed notes about Leo’s day. Survivor guilt and social displacement for me werea challenge.

The jungle safari I used to live in is now an ordinary landscape. My hidden identity as an Autism mom no longer feels awkward. I'm now at peace being responsible for my family's wellness. I still point fingers toward the same places, but it just doesn't get to me anymore. Autism has given me real, life-long friends, and helped me “clean my own house”. We live more healthfully, and my relationships with family and friends are more meaningful. I rejoice that Autism has ‘tipped’ (The Tipping Point by Malcolm MacDowell) into mainstream media, and people are talking more and more about it. For instance, Oprah, The View, and the recent rampage of Jenny McCarthy.

Autism is part of who Leo is, and I love him and accept all of him as a whole. I don’t separate the autism from non-autism parts. Sometimes it’s fun to attach certain aspects of his personality to autism. But mostly, I just don’t care. I use our experience and Leo’s unique wiring as a learning tool. I regularly remind both my children about what Leo’s deficits USED to be and now LOOK. He can do anything. There are no barriers to his potential, and our reward is his success.

Advice
As the mom of an older child, I do have some advice I’d like to pass on to newly diagnosed parents or parents at a crossroads: Never ever give up on your child or underestimate their capabilities. Treat them as you would anyone else, expect as much as anyone else, as much as you can. Find the root of an issue and address that, rather than the symptom of an issue. It’s often harder to execute, but saves a lot of time and frustration in the long run. Intensive intervention at ANY age can give your child the best shot atreaching their potential. Just because your child was diagnosed later makes no difference. Go for it! Assess both the biomedical and therapeutic options regardless of what anyone says. There is no rhyme or reason to what blend of therapies will be optimal for your unique child.

Trust your instincts – you will always know what is best for your child. Never underestimate yourself. We are all Uber-Moms and we can do anything.

Here are my unanswered questions from 2004, the time of my previous article:

1) Why are we parents having children with impaired immune systems, which, cannot discriminate between actual food and real viruses and bacteria?

2) Why are we parents having children with impaired GI systems, which, cannot efficiently assimilate food and flush out toxins?

3) Why aren’t we doing comparison studies between healthy children and adults? How do their genes, lifestyle, and GI/Immune systems differ? Whatcan we learn from them? What are they doing and NOT doing? 4) Why hasn’t the government figured out that it’s more economical to educate thesechildren appropriately?