Thursday my son announced that he would be moving into the dorms several days earlier than planned. He received an email that day from university housing saying that “students with disabilities” would move in on the 15th. I couldn’t wrap my head around this piece of news. We’ve been mentally preparing for the big day for months. This really threw me off my game. When I asked to see the email, my heart sank. The woman in charge of disability resources at the university is the same woman who thwarted our efforts to get our young son the help he needed in grade school. She’s made life difficult for many families over the years, including ours.
My son was too young to know any of this at the time and there is no reason to share it with him now as he leaves home for the first time. He’s blissfully unaware of the drama she put us through and will have no such bias when he meets with her and the other students this Friday. Seeing her name in the email, however flooded me with painful memories and the trauma of those grade school years. As my brilliant young man joins the ranks of other college students this fall, it’s a relief to know that he can do more than make a sandwich.
Here’s our story
The End: The part of a story where you tie up the loose ends, bringing the tale to a satisfying conclusion. Anyone familiar with special education knows that the end is only as good as your next Individualized Education Plan known as an IEP.
IEP’s are not the escapism novel you long to read but instead a series of required readings whose endings leave you feeling flat and defeated. Our oldest son has Asperger’s Syndrome, an Autism Spectrum Disorder. It took an ever-increasing series of professionals’ years to define the perplexing symptoms. It was a long and painful journey.
The Flashback is the chapter where we learn a little about our protagonist. Though we bought our home a year before having kids, a good school district figured prominently on our list of general requirements. We planned to start a family and we wanted to stay put while we raised them.
Life rarely plays out like the plot you’ve been thickening, and the first draft was no exception. My precious first-born was strong but fussy. He struggled to nurse and wore a serious expression a lot of the time. He cried upon waking and in the early toddler years he could tantrum for an hour without stopping. It was exhausting and frightening too, but the pediatrician and well-meaning in-laws assured us this was all perfectly normal. My son walked at a year, spoke at two, and generally hit the typical milestones on schedule. He started pre-school at age 3 for a few hours a day at a warm and loving Montessori school. Separation was painful for him every day; it never improved as all the experts predicted. His intense behavior continued, but because he had a younger brother at home, everyone said that was the obvious source of his displeasure.
He started hiding all his underwear and socks in a drawer, assuming we wouldn’t take him to school without them. He became increasingly resistant to anything outside his small comfort zone.
We eventually sought the help of a pediatric psychologist. His first diagnosis was Oppositional Defiance Disorder or ODD, coupled with sensory integration dysfunction. From there we saw an education specialist who diagnosed his suspected auditory processing disorder with intense hyperacusis along with the sensory issues and possibly neurological tics. I would soon be hauling out my dictionary in the hopes of understanding such terms as vestibular system and proprioception. I have a three-inch binder, plump with reports from psychologists, neurologists, neuro-psychologists and psychiatrists; pediatric occupational therapists, a speech pathologist, an audiologist and a woman who specializes in neurofeedback. One doctor said he had ADHD, and then depression coupled with anxiety. Neurological tics were initially ruled out; later ruled back in. The audiologist discovered that our precious boy fell into the abnormal range in four areas of auditory processing. He sailed through his Kindergarten hearing test, which we later learned simply proved he could hear. He couldn’t process the auditory input, but his ears worked fine. By grade three we enrolled him in our public school. His brilliant and dedicated young teacher actually came to our home to meet us to help with our son’s difficult transition. We were hopeful and grateful but filled with trepidation all the same. Districts have 56 days to complete an evaluation and to offer an IEP. Although we approached the district in late spring, they told us nothing would happen until at least October. Our son spent nearly two months in a new school before services could be offered. After the school’s testing, they only offered him speech.
He had a successful third grade year, but paced alone on the pavement during lunch and recess for both semesters, ending the year as he started it without a single friend. Fourth grade was harder as we continued to seek solutions to make his world work a little better and by fifth grade it was nearly impossible to get him into the car to go to school. I poured over a resource book of schools in our area and we interviewed and observed at several private ones. It was clear none of them would work. His doctor kept experimenting with various anti-anxiety medications, including one that elevated his triglycerides and brought about a significant weight gain. We started neuro-feedback, revisited the neurologist at the request of his doctor and agonized over the misery that was his day-to-day life. I was now carrying my cell phone wherever I went, anticipating the dreaded calls from the principal. Our troubled boy had started to run out of the classroom and hide. When the principal caught up with him, he told her he would have run home if his conscience had let him. Then he told her he wished he was dead.
At last, we found the Newton Program at Pine Hill. Although his doctor still didn’t think our son was on the spectrum, he suggested we take a look. We loved what we saw and were anxious to have our son ‘shadow’ for a few hours. The director of the program said ‘bring him to me; I’ll be able to tell you in five minutes if he’ll be successful here.’ So we did. We went for a two hours trial run and within the first twenty minutes my sweet boy came up to me and said “Mom, I want to go to school here.” I will never forget that moment. We finally found a home!
Good stories need conflict. We had that in spades.
We called an emergency IEP meeting and requested placement in the Newton Program. I naively assumed the district would be happy to have us off their hands and safely in a program that could adequately meet his needs. The woman in charge of special education in our district told me disparagingly that they would never place a child in ‘that program’ and that if all we wanted was for our son to come out ‘knowing how to make sandwiches’ then we could go right ahead. We were absolutely stunned!
They refused placement, other than conditional, and continued to research their own options. My nerves were so frazzled at this point that I started crying in the meeting and couldn’t stop. I asked Mike to step out of the room with me and we convened in a supply closet to regroup. I told him I was mad, not sad, but the tears were a physical reaction to what felt like a slap in the face. Enough. We went home and hired an advocate.
After waiting eight days for answers from the district we sent a formal notification of our intent to place our son at Pine Hill. We said that through our own investigations, we had discovered the Newton Program, had met their team, observed their classes and had successfully had our son shadow with a class for two hours during a regular school day. The director of the program concurs that this would be an appropriate placement for him. In light of the current situation at our district school (continued meltdowns, inability to focus and complete class work, threats of running away to name a few) and a lack of other options, we believe this placement to be the most appropriate for our son at this time. They countered with a recommended placement in a school one town over for students with emotional disorders, which we rejected. Finally they agreed to a three-month placement, but only if we “waived the stay put clause under California Ed Code 56505(d).” They fought with us to the bitter end, finally conceded knowing our next step would be a legal one. One month later, the woman who made our lives so difficult resigned from our district.
Our son attended Pine Hill from 5th to 8th grade. He lost weight, his blood sugar returned to normal, and within one week of attending Pine Hill, an EEG showed his level of anxiety dropped from 49 to 5%! He made friends and received birthday invitations. Once bullied, he was now among peers that looked up to him. He attended daily social thinking classes and self-evaluated his own behavior several times throughout his school day to reinforce the social skills he’s acquired. What phenomenal growth.
We had one more challenge with the district. They eventually started a program for children on the spectrum in his 8th grade year. They wanted to bring him back into the district (it would save them money) and while we applaud their efforts, we did not want to move him to a middle school for one year. It would be hard enough to move a typically developed child to a new school for one year, only to transition them again the following year. We had to agree to have him visit the new program for an hour.
Our sweet boy stoically visited the program for the required hour while I nervously waited to pick him up. He was tired and ready to go home.
I asked him to write a letter that night to explain how he was feeling and to thank the director of the new program.
(Names changed for privacy)
Dear Mr. Smith,
While I really enjoyed the tour I am afraid I must decline your offer. It is nothing personal I simply am better suited at Pine Hill. Please send my regards to Ana and Alex. I hope we will meet again.
We faced this last district struggle, battled-scared and wiser and our son stayed put.