Where We're At.

Before I go any further I want to make it clear that I don’t feel like my son has a disease. I would be hard pressed to say that he even has a disorder or a disability. I would tell you Normy is quirky. I would tell you he struggles with some things most kids don’t. I can’t deny that he has delays both verbal and cognitive… but a disease? Not a chance. I never feel like life with him is so hard, or that parenting him is is burdensome. In fact, he is a truly enjoyable person to be around. As far as autistic symptoms go, his are fairly minor. 

Here’s an idea of where he is developmentally: At six years old, Normy can’t tell you a story. Over the last few months we are finally starting to see the glimmers of some sequencing, but not enough that he could relay to you that first we met his friend at the park; then they played with the sand toys; then they rode their bikes; then we went home and had popsicles.  If on the day described above you asked him what his favorite thing about the day was he would be as likely to tell you about the dinosaur museum we visited six months ago as he would be to mention the sand toys or the popsicle.

Normy doesn’t understand the concept of time.  The idea of yesterday, today, and tomorrow is a complete blur for him. If I tell him we are going to Grandma’s house tomorrow he will be in a tizzy for the 24 hours until we leave for the trip, expecting to hop in the car at any second. When I continue packing and try to explain again that “No, we are going tomorrow… let’s look at the calendar.” he starts to get frustrated and begins demanding to go to Grandma’s NOW!” And he won’t just demand it once.

Normy get’s stuck in obsessive loops. If he wants to go someplace or do something he becomes single-mindedly fixated on it. For days on end he has been known to repeat things like: “Go to best friend’s house NOW!” or “I want to go ride Funny-Rides!” Nothing can break him out of the loop and over and over he’ll demand to go regardless of whatever reason or distraction is offered. Inevitably he dissolves in to tears and frustrated door slamming because tomorrow isn’t happening instantly. 

He does walk on his tiptoes and has trouble making eye contact with people, but other than that he doesn’t have any ticks or hand flapping. Most people would never guess that he is on the spectrum. Until you start asking him questions. If someone were to ask him, “Normy, how old are you?” He would most likely answer, “Six.” But, if you pressed on and asked “When is your birthday?” He might answer something like, “Three candles on my cake!” He is also very literal. If you tell him, “Boy, you are a sweet heart!” He’ll quickly correct you, “I’m not a sweet heart! I’m Normy Lastname!”

Until VERY recently Normy has had great difficulty dressing himself. It’s not that he can’t, it’s just awkward for him, and he doesn’t like to do it. On mornings when we have to be someplace I will bring him to his bedroom a half hour before we have to leave and lay-out his underwear, shorts, and shirt.  If left alone until time to leave I would likely return to find him still sitting on the edge of his bed staring out the window or playing with a truck with only his underwear on… backwards. He won’t brush his teeth. Mostly he just chews the brush. However, after YEARS of helping wash his hands I can finally trust him to go up to the bathroom and get them wet in the sink, even if soap is actually never applied. But, neurotypical six year old boys do that too, right! 

Other things seem to come to him naturally. He can do just about any jigsaw puzzle you throw at him, he plays video games about as well as my husband, and he rides his glider bike like it is an appendage.  He is awkward playing soccer and tee-ball but not much different than the other kids on his team. Of course he is as likely to kick the ball towards his opponents’ goal as his own…  

Actually, for YEARS now I would have told you Normy is my easy child. He is easy-going and listens and follows directions. He is eager to please, and likes to help. He plays beautifully by himself building train tracks and driving his trains around with a great deal of sound effects. He has always had wonderful concentration when something interests him. I found it so strange that his preschool teachers would claim that they could never get him to focus, when the kid I knew would gladly spend HOURS rolling out play-dough and lining up an army of trees or stars or whatever with a cookie cutter. If he were accidentally locked in his room with a marble run he wouldn’t realize he was stuck until he had to go to the bathroom or it was tome to eat! 

This spectrum business is really interesting. There are all of these kids (and adults) with differing variations of a “constellation of symptoms.” There is something I’ve heard repeated, “If you know one person with Autism, you know one person with Autism. My child is social and smiley, engaged in our family, and plays great with his sisters.  Of course, I have challenges dealing with him on the day-to-day. But, CERTAINLY no more than his four year old sister who is all sass and defiance, or my two-year old who wants to nurse as frequently as an infant and SCREAMS at me in the middle of the night when I tell her “bee-ilks” are only served between the hours of 6 AM and 8 PM (weaning failed, for those in the know). I never feel like, Normy is has a tragic condition or we’re lost in a mire with no path out.

I always imagined to have a disabled child or to get a diagnosis (any diagnosis) would feel like some crushing blow. Being told that Normy is on the spectrum never felt like that. Parents hold their new born babies and imagine the songs they will dance with them at their wedding; and imagine what it will be like to take pictures before they go to prom; and hope for grandchildren. Being told Normy has PDD-NOS didn’t sweep any of that away. But, what has been hard is the realization that Normy’s trajectory is never going to be just like everyone else’s and it is my responsibility to figure out how to help him soar in whatever direction he wants to go. But, really what’s so great about the bell curve? So, I have to engage more. I can’t parent on autopilot. If there was ever a reason to plug-in and living IN THE MOMENT this is it.  

PDD-NOS, What comes next?

Getting Normy’s diagnosis of PDD-NOS was a bit like feeling “Yes! I knew it! I’m not crazy!” Quickly followed by utter dejection and denial. “He’s fine, he’s great! He’s just a late bloomer.” I think Smoochy might have handled it a little differently. He was very indifferent to the diagnosis, and just kept repeating. “I know my son. This doesn’t change anything.”  As true as that may have been on some level, for me it was a big game-changer. For one, it really ignited in me the desire to DO something. Now we know what the problem is, we have to DO something to fix it!

Of course, a quick Internet search of “autism” will reveal to you that there is no way to “fix it.” Autism is a condition for which there is no recognized cure and there is no known cause… or at least so says the powers that be. The best that the authorities have to offer is behavioral therapy.  OK, I thought let’s look there.

All throughout Normy’s evaluation process I kept repeating, “I don’t really care about the diagnosis, I just want someone to point me in the direction of some tips and tricks that can help me teach him.” I kept saying “I want some tools that I can use to help him reach his full potential.” I thought that if he just got a diagnosis doctors and therapists would spring to action and line-up to take him on as a patient. I thought doors would magically open and we would find tons of parent groups and online resources and suddenly we would KNOW WHAT TO DO.  Boy was I disappointed.

Along with his diagnosis I got a packet of basic info on the “disease”. There was a list of contacts that provide ABA (applied behavioral analysis) and other autism services. And we were given the very strong impression that we should stay away from “any therapy that is too out-there” (like crazy diets and the biomedical approach). But, the more I called around and clicked through the list of Internet links the less and less confident I became. I felt completely overwhelmed. The media was full of reports of the proven benefits of ABA therapy and miracle recoveries of children who were diagnosed at around two years-old then spent three years in intensive 40+ hour a week ABA programs.  Could we get Normy in a program like that? Was it too late for my five (almost six) year-old? I had an incredible feeling of frantic despair. The clock was ticking!!!

There were therapists at the facility where we had Normy tested that were willing to talk about options with us. We got an indication from them who was the most reputable ABA provider in town and we contacted her to come to our home to talk about what she had to offer. My hubby and I were hopeful and interested… but nervous that the couple thousand dollars we put it flex spending earmarked specifically for Normy wouldn’t cover ABA.  Turns out we had good reason to doubt.

Through out the therapist’s presentation we were thrilled at the quality of program she had to offer. She would coordinate all of his therapists and the course his therapy would progress along. She would arrange weekly or biweekly meetings with herself, the therapists, and us.  Therapy would be in our home for about three hours a day (like most of her clients receive). That’s 15 hours a week, well below the 40 hours clinically recognized to produce results. So why are all these parents only providing 15 hours to their kids?

Well, because that’s all they can afford. In the state where we live, insurance companies are not mandated to provide insurance coverage for autism. So they don’t. AT ALL.  We have one of the best insurance plans in the state and they have a complete exclusion for all autism services. They absolutely will not cover ABA therapy. And at the start of this year a bill to mandate autism coverage got struck down by the Health and Human Service Committee. It didn’t even get passed on to the floor for a general vote.

What was the sticker shock for the gold-plated in-home ABA therapy we were exploring? $30,000 a year. We cried about it, we fought about it. We debated and crunched numbers and we stressed and fretted about it. Then I got a job.

It didn’t make sense to us for me to go to work during the day when we’d have to spend money on childcare. We are a home schooling family, and that time for us is sacrosanct. So, I went back to my roots and got a job waiting tables at a little neighborhood restaurant right down the street from our house. Smoochy and I were both willing to give it a shot. We decided to wait two months from the start of my employment to see if we could make it work before beginning therapy. That would also give us time to explore other therapy options and decide if we were on the right track.

So, I strapped on my apron and got to work. Not just while I was at the restaurant, but while I was home too. I had to be more diligent about meal planning and house cleaning to get it all done BEFORE my five to ten o’clock shift began. I was burning the candle at both ends and Smoochy was picking up the slack. He was coming home from work just in time to kiss me good-bye as I dashed out the door and left him with the kids, and dinner, bath-time, bedtime, and the kitchen to clean. To say this was a stressful time for us was an understatement. It was great to feel like such a team with my husband, but during the day I was tied and crabby. I started yelling at the kids, and I never felt like I was “doing it” right. The kids stared watching more movies and playing more Ipad games. Whereas before I sometimes had time for one-on-one interaction with each of the kids, now I had none. It only took a month to realize this wasn’t going to work. Not only was I not making enough money to cover therapy, but also our family was coming a part at the seams.

It was about this time I was put in contact with an awesome woman whose son was given the diagnosis of autism at the age of two. At the time, she was told it was likely that he would never walk or talk. Today he is attending elementary school in a normal classroom without an aid. How did she accomplish such a feat? With hard work; employing the services of a neurologist; and by learning a variety of behavioral therapies herself she was able to help her son achieve goals that couldn’t have been imagined when he was a toddler.  Talking to her made me trust myself, and realize that all was not lost if in-home ABA therapy was out of our price range. There are other paths that lead to success for these kiddos.

So, after two months of employment, I hung up my waitressing apron, put on my big-girl panties and my work boots, and set off in a new direction…

To be continued…

...Life...

This was written months ago. I've read and re-read it, and am finally ready to share. Here we go. 

My nearly-six year-old son just tip-toed into our bed-room. “Mommy? Daddy? The Monster hurt my head and my arm! Mommy saved me from the monster.” He lay down snuggled next to my husband and all was peaceful in the family bed once more. But that started my wheels spinning and even though it isn’t even quite 5 o’clock in the morning I couldn’t go back to sleep with his words ringing in my ears: “Mommy saved me from the monster.” Because that is exactly what I am trying to figure out how to do. Back in December, Normy was diagnosed with an Autism Spectrum Disorder (PPD-NOS).

As a baby he met his milestones right on time. Maybe a touch slow to craw and walk he was still well within the bell-curve of “normal.” He smiled early and often. It was a face-splitting smile that was like looking into the face of the Buddha. The only milestone that didn’t fall neatly on the path was babbling. Normy really never babbled. He had this multi-pitched vowel sound. Not really a shriek or a scream, it was like he was joyfully hollering at you. While the other kids born around his birthday were saying “mama”, “daddy”, “doggie”, “ball” and “dolly” Normy was still just making vowel sounds. When those same kids were saying, “Mommy, I love you.” Normy wasn’t saying much of anything. By the time he was three he had about 25 words that he used as singular utterances. Car, Mama, No, Jack, Daddy, Georgia, Drink… In fact, his sister who is twenty months younger than started calling me “Mama” before he did. I had been a mother for 31 months when a child named me their mother for the first time. (And I know some mothers of autistic children will never hear it said.)

But, even with Norm’s speech delay, we still didn’t worry. He was an awesome three year-old! He played great independently, spending hours lining up cars (in a mostly non-obsessive way) and taking trains around his track. He did puzzles and he SMILED. He wanted to be with us and be social. He wanted to play with other kids, though it was tough because the only way he knew to get their attention was to body-slam into them or clothesline them as they ran by. His pediatrician assured me it couldn’t possibly be autism, “Look how socially motivated he is!” And though I asked her the question, her answer resonated with me and I forgot all about it.

We did put him in an Early Intervention Pre-school program for his speech delay. For two years he went five days a week to play with twenty other kids (some of them with diagnoses of autism) and we waited for him to start talking. So many parents had told us that Early Intervention was the key, and how after a short time in the program their kids had come out of their shells and started talking up a storm. “You wait and wait for them to start talking, and then once they do you wish they’d be quiet once in a while!”  When he was two I thought, “Surely by three this will all be a memory and he will be talking like every-one else.” Then when he was three I thought, “Well, by five I’m sure he’ll be caught up.”

Five came very quickly and Normy still wasn’t speaking much. He had gone from one-word utterances to two and three-word utterances.  Words were garbled, there were extra words, and even I could only decipher a quarter of what he was saying. He’d get so angry and frustrated he’d cry when he couldn’t get his point across… usually with regards to a perceived aggression or injustice relating to Georgia! It was during the closeout debriefing at preschool that his speech pathologist casually mentioned to me that she thought his speech issues could be the result of a tongue-tie. She said we might want to check it out. She said it so nonchalantly and we were so busy with summer travel plans and his birthday party preparations, her words didn’t sink-in immediately. Plus, how could he be tongue-tied!? That kid nursed like a champ; he was enormous as a baby! It wasn’t until I was away, and Smoochy was home with time-to-kill that he did some Internet research on “tongue-tie” and felt like the speech-path might be onto something.  It occurred to Smoochy that we had NEVER seen Normy LICK an ice cream cone. I said, “I always thought he just like to bite them.”

“Yea,” Smoochy replied, “because everyone likes to plunge their teeth into freezing cold ice cream.”

He had a point. And the ENT we were referred to confirmed Normy had a VERY thick and restrictive middle of the tongue. She said the tip had probably worked itself free over time but his tongue was still inhibited from a full range of motion. (My breast milk must have been so plentiful that he only had to hold his mouth over the nipple to get a full meal!) She said surgery was a low to no-risk option that would definitely correct the physical problem.  Whether or not it would correct his speech couldn’t be guaranteed, but it did seem like a possibility and she saw many patients who had success. We cried. All this time our FIVE year-old had been struggling and the solution was as simple as a little snip. 

And yet, in the back of my mind was a tiny sliver of doubt. You see, at five the more Normy was able to say the more I realized what he was saying didn’t make any sense. I remember thinking: “Even with dramatically improved pronunciation, I’m still not sure I’m going to understand what he means.”

The “tongue-snip” (frenuloplasty) was a fairly painless event. There were a few days post-surgery where he was groggy and sad. And his speech got worse before it got better. But we expected that; he had to relearn how to use his tongue.  But over time, and with continued work with two different speech pathologists his pronunciation has absolutely improved. There are glimmers of perfect “L” sounds that I’m not sure he would have ever been able to correctly pronounce otherwise. But, it was not the magic bullet I had been praying for.

I don’t know what shifted but all of a sudden there was mounting evidence to me that all was not exactly as it should be. Normy started reacting to loud noises by covering his ears. The grain mill, the vacuum in the entryway of a grocery store, loud trucks that would rumble by all sent him for cover. It seemed like every time I turned around there he was with his hands over his ears. He’d never liked his hair washed or cut but now it was like my fingers felt like razorblades to him on his scalp. One day I watched him sit down with a baby toy and spend over an hour opening and closing a door on it’s side. I let him do it just to see how long it’d go. And then the obsessive question asking started. It was like he would get stuck in some verbal loop. No matter how I replied or tried to redirect him he’d ask the same question over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over… What was going on here???

At the end of last year I stared asking our families, “Would you think I was crazy if I told you I was thinking of having Normy tested for Autism?” No, some of them had started worrying too. I asked the two speech paths he worked with if there was a chance he could be on the spectrum, and they both felt like we should explore it. So we did. We did the parent interview, the two hundred different fill-in-the-blank ratting scales, and finally the ADOS.  When the data was sifted and the points tallied we had a diagnosis: a piece of paper that reads PDD-NOS. Pervasive Developmental Disorder- Not Otherwise Specified, one of the five Autism Spectrum Disorders (for now).

I can’t get into what that diagnosis means or doesn’t mean for us right now. I think we are still processing that. What hasn’t changed is our son. He is an AWESOME little guy. He is loving, and snuggly, he is stubborn and resilient, he loves cars and trains, and puzzles, and Ipad games. He plays t-ball and soccer and rides his glider bike like it is a part of him. And recently he has started talking clearer with more complex sentences and thoughts. He is going places and taking us along with him.

Smoochy and I have debated a long time about whether to write about it, and obviously we have decided to go for it. We are going to share his story, our story with you. Maybe someone will get comfort, or camaraderie, or be exposed to something new to try based on what we are doing. Maybe this blog can help us network with other families in the thick of it and we can learn from them. Maybe it can help friends and family better understand what this autism stuff is all about. Maybe Normy will appreciate having a record of just how far he’s come later in life.  Maybe he’ll be angry I wrote about it. I’m not sure about anything these days.

Well, I take that back. There is one thing I am sure of. We will do everything in our power to help Normy reach his full potential… just like we will do the same for Georgia and Lola. That’s what parents do. As I was sneaking out of the bedroom to type this I heard Normy, still recovering from the images of his nightmare, say to Smoochy, “Daddy, protect me!” If only it was as easy as chasing away the monsters under his bed.