Journey along the spectrum

(This item is currently under revision. My son is heading into 5th grade now and I am trying to update the story of our journey. Unfortunately, it is a story that is easier to tell with a little time and distance.)

From the time my son Zachary was a tiny baby, I knew something wasn’t right. When I would hold him in my arms, instead of nuzzling in like most new babies, he held himself stiff and autonomous. When I gazed into his eyes, he looked away. When I put him on the changing table he turned his head away from me and did not respond to my voice.

I was laid up with a broken leg for those first months. I’d broken it about three weeks before Zach was born, and my lack of mobility meant that Zachary and I spent a lot of time on the sofa together. There wasn’t much else I could do. I spent a lot of time contemplating this little person, and according to my husband, “over-analyzing” every nuance of his being.

My friends would come and visit, but in spite of their love of babies, they wouldn’t hold Zachary for long. He wasn’t comfortable to hold, and he had a terrifying tendency to throw himself about in unpredictable and unsettling ways. As troubling as it was, Zachary was contented, healthy and growing. He rarely fussed or cried.

The first real Houston-we-have-a-problem moment came at the tender age of 2 months. At two months he rolled over for the first time, and in that moment, I knew.

Most babies learn to roll from their front to their back first. Zachary didn't. At two months, he made his first turn from back to stomach. He did it by arching his back so dramatically that he managed to flop over. Seeing it, I immediately recalled an article I had seen. The subject: movement disturbances in early infancy and their link to Autism.

The next day I found the article and read it with new eyes. Typical children roll over using a corkscrew motion... head, shoulders, and then hips. Home movies of infants who later came to be diagnosed with autism revealed the kind of flopping over that I had observed.

My husband thought I was crazy. Everyone I knew who had a pulse and an opinion thought I was crazy. The pediatrician was willing humor me with a referral to a pediatric neurologist. As the neurologist examined my baby, Zachary went through his full repertoire of oddities. He gave an exaggerated startle response to the crinkling of paper on the exam table. He was rigid when held and did not turn his head in response to voices. The neurologist suggested that what I was seeing was a “normal developmental phenomenon called stiff baby syndrome,” and he would outgrow it. She patted my hand and said gently, “your baby is perfect. You know that, don’t you?”

I wasn’t convinced, but I wanted to believe her, and clung to her words. My husband was greatly relieved, but I couldn’t get past the feeling that my little baby was slipping further away from me.

~*~

Since I worked then, as I do now, for the county office of developmental disabilities, I had access to the expertise of the early intervention department. I spoke to the director and told her about my son. She suggested an evaluation by a developmental specialist. Zack was 3 months when he was evaluated. There are not a lot of things that a 3 month old infant is expected to be able to do, but Zach already had delays enough to qualify for early intervention services.

For nearly a year Zachary had weekly visits from a physical therapist who worked to resolve the stiffness issues. After a year of services, I was pretty frazzled, but Zachary was sitting and walking and exploring his world so he was discharged from physical therapy. In spite of all of his initial stiffness, Zachary had become a very cuddly, loving baby. He was also quirky as all get out, but I hadn’t thought about autism in a long time. Zach was so different from his sister, but aren’t all babies different?

For a year, I let things ride. Zachary was a fascinating toddler and obviously bright. He had very little language, but he had an ear for music and could mimic a tune perfectly. Zachary did not point to things. He did not name the things around him. His words were functional rather than naming… “hungry,” “thirsty,” “sleepy.” He would not say the word “yes”; only “okay.”

We played a lot of 20 questions.

“Do you want milk?”

“No”

“Do you want water?”

“No”

“Do you want juice?”

“Okay”

There would be other words along the way that he simply would not say. One of them was “green.” For whatever reason green was “pickle.”

By the time he was 18 months old, he had fallen in love with numbers. Numbers made sense to Zachary. Before he turned two he knew the numbers 1-10. He could count to ten. He could recognize and name each number out of sequence, and he could put the numbers in the right order. We did a lot of counting, but very little talking.

Zachary was in day care. Aside from a brief run of biting, he was never a behavior problem. Completely the opposite! The teachers often commented that they wished they had a whole room full of Zacharies. He was easy because he did not engage with other children, and did not fight with them. If a child came into his space, he left.

Wonderful as he was, my child was not following a normal path of development. It wasn’t as if he was behind his peers. It was more like he was somewhere off to the left of them.

By the time he was two, my concerns were growing. He still had very little language, and he did not seem to know how to interact and play. I tapped into the resources at work again. We had an autism specialist named Larry who we contracted with to provide assessments. Larry did an observation of Zachary. I didn’t find out until much later that when Larry came back from the evaluation he went to my co-worker, Mary, and said “Please tell me that I’m not the one who is going have to tell her that Zachary is Autistic.” Mary assured him that I already knew and he just needed to tell me what to do about it.

Larry introduced me to the work of Stanley Greenspan and his concept of “Floor time.” Basically, it was a method of building interactions with the child. It helped me pull Zachary out of his own world; showed me ways to engage him. I worked with Zach diligently, but his social skills were lacking. I would take him to the McDonald play place and he would bark at the other children. Most of the time, they would bark back and the place would sound like a kennel, but it was amusing, but decidedly weird.


~*~

By the time Zach was three he was back in early intervention services. I waited longer than I should have, but kids in early intervention transition at the age of three from a system funded by the Department of Public Welfare to a system funded by the Department of Education. I did not want to enroll him in early intervention and have to go through the transition after only a couple months of service.

By the time he was evaluated for services a second time, Zachary was delayed in the areas of social/emotional development, communication, self help skills, and fine motor skills. He needed speech therapy and occupational therapy, and an early intervention pre-school program.

That “A” word came up again, and my husband and I fought about it. In my heart I knew, but I could be made to doubt myself. Maybe, by believing something was wrong, I had created this problem. My husband was working on a doctorate degree in psychology. He claimed he was basing his opinion on objective diagnostic criteria, but I suspect he was deeply in denial.

Zachary had a large range of sensory issues. He did not like loud noises and was easily over stimulated. At family get-togethers he would escape by going to the bathroom every five minutes. At about the age of 3, Zachary was pretty compliant and manageable. He had a concrete view of the world, and expected consequences for his behavior. He never thought to push the limits of acceptable behavior because in Zach’s world was build around an expectation of consistency. It was both a blessing and a curse.

Zachary needed consistency and routine and I was a working Mom with a husband in graduate school. Consistency didn’t always prevail, and when things did not go the way Zack expected, he could really lose it! Once that happened there was no pulling him back together. If you were out somewhere, you simply had to pack up and go home. He was pathetic when he’d come undone.

~*~


Zachary spent two years in the early intervention preschool program, and then it was time to transition to Kindergarten. It was a trying time, and left me with many hard feelings toward members of the “team.”

The issue of diagnosis came up again. My husband was dead set against it. He did not want Zachary to be labeled. I didn’t care about the labeling so much. In my opinion, a label of Autism would be no more damaging than the inevitable label of “weird” that he’d get from his teacher. Still, I’m non-confrontational by nature, and there were many hard lessons that I’d yet to learn, so I relented. We would not have Zachary diagnosed. A diagnosis wouldn’t change his needs anyway, so what was the point?

Preschool ended for the summer, and I did not have a copy of the comprehensive evaluation completed by his team. I didn't know what the recommendations were for Kindergarten, and I don't like not knowing. I started making phone calls, but reaching school personnel over the summer is a chore. I wanted information. I wanted to have an Individualized Education Plan (IEP) in place at the start of the school year. I wanted to be proactive. All good things, but all fundamentally at odds with the way the school district conducts its business.

The district’s plan was this- get the kids in school, see how they do, and then meet to come up with a plan based on the observed needs.

I had a problem with that approach and rightly so. It was completely out of compliance with the requirements of educational law. I found that out with a little research. The district had 60 days to complete an evaluation from the day I signed the “permission to evaluate form.” Once the evaluation is complete, the team has 30 days to develop the IEP. I signed the papers in February and in July I had nothing.

I quickly learned that a phone call to the Superintendent of Special Education would go unanswered, but a signed, dated letter faxed to the his office requesting a meeting could not be ignored. So we met. First I met with the Assistant Superintendent. He defended the districts practices, but did contact the psychologist and obtained a draft copy of the evaluation. Of course, the evaluation was horribly inaccurate. It was based almost entirely on out-dated records with little in the way of observation or assessment. I was livid; furious; angry; enraged; het up; fed up; and pissed!

I took the issue to the Superintendent. I presented my case. I explained that the district was out of compliance with the mandates of educational law and that to top it all off… the psychologist wrote a crappy evaluation.

The superintendent really isn’t a bad guy, but he was really looking forward to retirement. I had known him for a number of years and had various dealings with him in my role as a caseworker while advocating for some of the kids and parents assigned to me. The superintendent heard me out; listening to my complaints sympathetically. When I concluded my tale of woe, he acknowledged that the district needed to revise their policy on completing assessments. He promised to make things right with Zach and even offered me an independent evaluation.

This was everything I could ask for, and it was a completely inadequate response. I’d come into the meeting loaded for bear. I think that what I really wanted was the head of the psychologist served up on a platter with a big, glossy apple crammed in his mouth. I know that’s wrong, and my relationship with the psychologist has since shifted into one that is positive and respectful, but I’m just telling it like it was.

The superintendent got the point. He smiled at me and said in his hostage-negotiator tone of voice “what would you have me do? Take him out behind the tool shed and beat the shit out of him?”

Well… if he’d ever made the offer again I’d have shouted “YES!” at the top of lungs. He did not make the offer again, and I did not take him up on the independent evaluation. The issue went beyond Zack’s needs. As far as I could tell, all of this was standard operating procedure for the district and it was wrong. I could advocate for my son. I could recognize and point out the failure to comply, but what about the other parents out there who were struggling to get through this? Why should we all have to struggle with this? Why did we have to invest our time and energy fighting for what the school was legally bound to provide? It was a matter of principle.

~*~

Zachary started Kindergarten identified as a “Speech and Language” student with itinerant learning support. He received speech and occupational therapy, but did not have many modifications written into his IEP. His teacher was wonderful, and she had a para-professional in the classroom which helped both her and Zachary. Kindergarten was only a half day program at the time, but Zachary was extremely anxious that year. When it was his turn to be “Student of the Week” he cried until the teacher promised to pick someone else. The anxiety also made it very difficult for Zachary to ask for help. He wouldn’t do anything to call attention to himself.

There was one day that Zachary decided to stay on the school bus to see where it went after the kids got dropped off at school. The drivers are supposed to walk the bus after they drop the kids off, and then walk it again before they park for the day. The driver obviously hadn’t walked the bus. Zachary pretended to be asleep as the other kids got off. The kids tried to tell the teacher that Zachary was still on the bus, but they had a substitute that day, and it took awhile for her to sort it out. She told the office. The office called transportation, and transportation radioed the bus. My baby was found safe and sound in his seat on the school bus rather pleased with his adventure.

Our goal for Kindergarten was to get Zach to where he would ask for help. They set up situations to encourage him. They would ask him to write something with a red crayon when he didn’t have a red crayon. I know the point was to teach him to ask, but it felt mean to me. With intensive coaching, he got it. One day the teacher called me laughing. She told me that the class was quietly working on a project when Zach’s head popped up and he called out “Hey! Can I get some help over here?”

It was a beautiful thing.

As the kindergarten year started to wind down, we needed to prepare for first grade and Zachary’s teacher told me that he definitely needed to have a para-professional providing extra support in the classroom in order to be successful. I agreed, and I wanted to have it written into the IEP. This is when the School Psychologist re-entered the picture. He could not make a recommendation for an aide, because Zachary was only a Speech and Language student. In order to get the support he needed, he was going to need a diagnosis so he could be reclassified as an “Autistic Support” student.

There were some fireworks. My husband, Tony, was still opposed. I believed to the very core of my being that Zachary was autistic, but I have an oppositional streak in me that is a mile wide. The only reason for diagnosing Zachary was to get him the services he needed in school. It was educationally necessary; therefore, I was determined that the school would provide the diagnosis. I hate to admit it, but there were times during this journey when my stubborn need to be right was driving me every bit as much as my need to do right by my son

I was told that the school psychologist could not diagnose Autism, but he had us complete a number of assessments. We did the ABS, CARS and the GARS and the rest of the alphabet too. Oh the arguments we had.

“Tastes inedible objects?”

“Yes,” I said. He licks the car.

“No,” Tony said. “He isn’t licking the car. He’s licking the water off the car.”

“But he licks the tables too.”

I had a growing resentment toward the psychologist. Rather than walk us through the assessments, he sent them home for me and Tony to fight through on our own. Then, he set up the final assessment with a Psychiatrist who was contracted with the school district. He wasn’t really a psychiatrist, but an MD with a psychology degree who would later lose his license to practice medicine as a result of various legal and ethical issues.

The doctor spent all of five minutes observing Zach and then asked Tony what he thought. Between the two of them they arrived at the diagnosis of Pervasive Developmental Disorder not otherwise specified. It was a cop out, but it put Zach in the Autism spectrum without using the “A” word directly, so Tony was appeased.

The symptoms of Autism are grouped into three categories. One category deals with language and communication. In the most extreme cases language is entirely absent. In mild cases language development is normal, but volume and inflection are odd or inappropriate. Zachary was verbal, but had language delays; especially in the area of social and expressive language.

Another category deals with social skills. On the extreme end you have a child who is completely withdrawn and aloof. Zachary is a loving child. He is able to engage socially, but often can not engage appropriately. He was playing alongside other children, but not with them.

The final category deals with stereotyped behaviors. Stereotyped behaviors are the odd movements and fixations that are the hallmark of autism. The rocking. The hand flapping. The repetitive behaviors and limited range of interests. Zachary had them. He used to take all the VHS tapes (remember those?) out of their boxes and line them up end for end across the living room floor. He walked around in circles. He made repetitive sounds. Zachary had stereotyped behaviors, but he did not have the stereotyped behaviors listed on the assessment. So Zachary is PDD because he only hit two of the categories.

After all that, the school still would not write into Zach’s IEP that he needed support from a para-professional. They would provide it, but they would not put it in writing. The argument they used was that the support could be provided by anyone and so a para was not specifically needed. Zachary continued to have the support of a para in the classroom without anything in his IEP being changed. He’d been diagnosed for nothing.

~*~

First grade brought new challenges. Zachary had recess now, and with it came problems on the playground. The problem with a kid like Zachary is that other kids can set him off easily. He likes things a certain way, and if you can mess with that, you’ve got him. There was a kid who was bugging him at recess. Zachary was getting very upset, but I couldn’t get anyone to monitor what was happening on the playground. I had one of my Mama-bear moments and got the Pediatrician to write a prescription saying Zach required line of sight supervision at all times. Not one of my finer moments.

The next time Zachary had problems with another child, I asked him if he wanted me to talk to his teacher. I was wearing a gold necklace and Zachary laid his finger on it.

"When you talk to her, it just goes like your necklace," he said tracing his finger along the curve of the chain, "around and around and around." He has an amazing ability to cut through all the artifice of a situation and see things exactly as they are. It has a little unnerving coming from a 6 year old.

Zachary learned and grew a lot in first grade, and his teacher truly enjoyed him, but when Zach was upset with things, he would refuse to go to school. Oh, those were the days that broke my heart. I would wrestle him into the car. Wrestle him out of the car. Carry him up to the school kicking and crying. I’d get him into the school, and his teacher would come out and talk to him until he calmed down enough to go into class. In spite of those episodes though, Zachary was less anxious overall. My shy kid started to like attention! He gave his first oral report in first grade, and I went to the school to watch him present it to the class. He did a beautiful job. Toward the end of the year, he even got to read the morning announcements over the PA system. It was a very big deal!

First grade was a success. Zach was doing well academically. He was discharged from Occupational Therapy having achieved a "functional pencil grasp," and we seemed to have arrived at that perfect balance of challenging and supporting Zachary. We were golden until 2nd grade came around.

Zachary’s 2nd grade teacher was only in her second year of teaching, and it was her first year of teaching 2nd grade. She was winging it. Zachary can’t handle “winging it,” and he crumpled in on himself. His school refusal intensified to the point that I had to find someone to restrain a screaming, crying Zachary so I could leave the building. I don’t even remember much about it all. I was a wreck, and Zachary was a wreck. The school wanted to pull Zach into a learning support class for math.

I was frustrated and confused because math was his best subject. Unfortunately, the math curriculum they were using was “investigations,” and it was this language-rich, exploration of math concepts. Language-rich and Zach are a bad match. I insisted there had to be a way to modify the curriculum to make it work for Zach, but things were deteriorating rapidly, and so I agreed to pulling Zack out for learning support. We were able to get Zach into the structured routine he needed and things got better.

Learning support for math was a wonderful thing for Zachary because it allowed him to move at his own pace. Numbers are still his greatest strength and Zachary knew his times tables up through fives by the end of second grade. He was a shining star in math, but he was crushed when his end of the year report card came. He received an unsatisfactory grade in math. The teacher explained that it was the only grade she could give him because he had not participated in the standard second grade curriculum, and did not complete the standard second grade assessments. It was a difficult thing to explain to an 8 year old who equated the mark with an 'F.'

~*~

Zachary’s school was only K-2, so he needed to move up to a bigger school for third. This meant yet another round of transitioning in the spring. He had his IEP meeting in May, but the guidance counselor from the new school didn’t come. I wanted to be proactive and get Zachary’s school year off to a good start. I did not want to go through another round of school refusals while I waited for things to fall into place. I met with the principal at the new building and had a nice meeting with him about Zachary’s needs. We talked about ways to ease the transition and I felt I was being heard.

In August, I met with the Principal again, along with the guidance counselor, and the school nurse. We went over Zachary’s needs which I had carefully itemized for their ease of reference. The Principal assured me that all the accommodations I was asking for were reasonable and do-able. He pointed out that the IEP needed to be rewritten to include the para-professional support, and after I explained why it had been left out, he agreed that we would need to have a new IEP meeting as soon as possible once school started.

I was optimistic going into the school year. I felt I had done what needed to be done, and I’d communicated Zach’s needs to the entire team. Unfortunately, his teacher and I had differing views. The teacher felt that Zachary should be given the opportunity and challenge of participating in the unmodified curriculum. His teacher thought it would be best to see what Zack could really do for himself before assuming he needed help.

There I was the day before the third week of school started, and already there had been countless notes, and phone calls, not to mention emails and two formal letters pointing out the absurdity of this approach that I cc’d to the new superintendent of special ed. Zachary is capable… yes. He is bright. That does not mean he can process information in the same way as the rest of the class. Zachary is a known quantity. We know what he is about. We know his strengths and his weaknesses. We know the little quirks we can expect. Why do we have to start every school year on some sort of proving ground?

I spoke to the teacher on the phone. He explained why he believed his approach was best. I disagreed. I was deeply frustrated and did not feel that I was heard. The teacher, however, wouldn’t back down.

“Let’s just give it a chance,” he said.

I hated being the one who was always saying the worst things about my son, pointing out his limitations and insisting that in balancing challenge and support, they need to favor support until Zachary is secure in his new classroom. It would have felt better from my perspective if they would’ve underestimated Zachary and allow me to be his champion for a change.

We gave it a chance. Not because I agreed, but because I felt powerless to change the situation. They were not going to listen until there approach failed, and everything was being set up for failure.

Third grade was a tough year for us, but it was the year my husband really stepped up and became involved. He was no longer in denial and was very invested in helping to alleviate the stress that had been eating away at me and Zack.

On our worst day, Zack refused to get dressed; refused to get on the school bus; and refused to get out of the car when I drove him to school. Zack wasn’t such a little kid anymore and it took all of my strength and my will to half carry, half drag him across the parking lot and into the school. He fought me every step. Looking back, it seems like such insanity that I put us both through that, but I was afraid that if I caved and let him miss school, I’d never break the cycle.

It was the wrong thing to do.

By the time I got him into the building Zack was beyond all self-control and honestly, I wasn’t much better. I was crying and I was angry, but not in a proactive sort of way – not anymore. It was a bitter, defeated sort of anger. Adding to the horror of the situation, no one at the school seemed willing to intervene when I entered the building. I had to wait in a line with the struggling, inconsolable child to sign-in with the attendance secretary. Then, since Zack wouldn’t walk to his classroom on his own, I had to forcibly escort him. It was a new low.

There were other days that year that Zack refused to go to school, but that was the last one I had to face it down on my own. After I recounted the incident to my husband, he entered the fray. That didn’t fix everything all at once, but it broke up the stalemate. I eventually got past my angry resentment about having been dismissed and discounted at the outset of the year, and the teacher who had personalized my anger and frustration - and maybe it was personal after all – was very genuine in his desire to help Zack succeed, and that shared goal allowed us to gradually mend fences and work together.

That year Zachary had his first ever book report. It was on a mystery book and there was a list of possible projects he could do. Zachary was excited about that book, and excited about the project. When he gave his report to the class, it was a huge success. That evening I got a call from the teacher. He just wanted to tell me how well the report had gone and how proud he was of Zack. It was the shining moment of third grade.

By the end of the year, we’d arrived at a level of mutual understanding that helped lay the ground work for fourth grade. My husband was now a fully integrated member of the team and, since I would be working with the same administration and learning support teacher, I did not have the anxiety of starting from zero again.

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