These three “I” words have forever changed me as a person. If you have a child in special education, you probably just had a shiver run down your spine just by reading those acronyms in print and may be thinking the same thing. All of these things serve as a blessing and a curse to our kids…and also to the educators and administration serving them. Back in the day, the Individuals with Disability Act (IDEA) was enacted to refine and replace what few laws there were to protect children with disabilities within the education system. It was meant to also focus more on the individual rather than on the disability itself. IDEA has been re-written several times since 1990. There are several things it does both in a good way and also in not such a good way:
It provides a free and appropriate public education (FAPE) to all kids regardless of disability at public expense. The key word here being APPROPRIATE. The downside: There is a pretty decent chance that what you and your child’s test scores say and what you know is appropriate will be very different than what the district thinks is appropriate. And most likely because of that other key word….FREE.
Evaluations: This law makes sure that children with disabilities are evaluated in a way that makes sense. We don’t want to use one specific test to decide if a child needs special education services. That way discrimination is prevented and ideally, these evaluations serve as a tool to know exactly what they will need educationally. The downside: Evaluations are only as good as the people trained to administer them….and only as good as the educator who can recognize an issue in the first place.
Individualized Education Program (IEP): These are legal documents that establish goals, accommodations and modifications to the general curriculum and access to qualified professionals to ensure that a child with a disability is learning at the right pace and to his ability within their environment. These plans level the educational playing field for those with a disability. The heart of special education. There are 13 categories under which a child may qualify: specific learning disability, speech and language impairment, blindness, deafness, hearing impairment, visual impairment, orthopedic impairment, traumatic brain injury, autism, multiple disability, other health impairments, emotional disturbance, intellectual disability, The downside: Because they are legal documents and may be audited and are monitored on a quarterly basis, educators may have a very high self-preservation incentive to make certain your child is meeting his goals….at least on paper. The more savvy the parent, the more tricky this can become.
Least Restrictive Environment (LRE): This ensures that your child is placed in an environment that meets his needs as independently as possible in an educational setting that is appropriate for him. The goal is to work toward the LRE. The downside: For those of us with kiddos with Autism, this is not always cut and dry. Especially those who are cognitively intact but perhaps have a language impairment or another issue which may stand in the way of independence. An emerging issue in the field is for those kids who are considered “twice exceptional” such those who are intellectually gifted but with severe behavioral issues. And what does “least restrictive” mean anyway? My kid who needs 1:1 to learn can totally sit in a regular classroom to do that. However, I believe my district interprets LRE to mean that he be in a contained classroom without a 1:1 because then he might have more physical independence in that room. Who is right?
Protections for your child…..protections for you as a parent: Because of IDEA, there are procedural safeguards in place to make certain that your child is receiving the services the school says they will provide and a protocol to follow if you believe they are not. Additionally, these protections allow for parent participation and child participation as an equal member of the child’s school team. The downside: Let’s face it…if you are not an educator…or even know where to go to get what you need, you will never be an equal member of your child’s team. Procedural safeguards and parent participation are ultimately only as good as the questions you know to ask, as your attorney and your bank account. The catch-22 if you do live in a very good school district? There is a good chance that anything that goes to due process is going to take a LOOOONNNNNGGG time. And think about that for a second. If there is a FAPE violation and it works its way all the way up to a due process hearing doesn’t that seem counterintuitive for your school district to allow little old you to go to court with them? Wouldn’t it make more sense to fix the problem as it would be much cheaper and less time consuming to do so? It’s not. At least not to them. Because no matter how much the school doesn’t want to throw money at something they can still probably afford to pay a better attorney for much longer than you can. And besides…the year and a half it could take…perhaps that child won’t need what it was you were asking for by then…or make your life complicated enough that you will break and succumb. That seems like a pretty good gamble for a district. And then it doesn’t set a standard for other families to ask for the same.
The last 25 years have been interesting ones for the education system as a whole. When the parents who walked before us clawed and fought and struggled for these laws it was at a time before the internet, before all the revisions, before standardized testing existed in the way it did, before No Child Left Behind and before Autism was 1:68. IDEA is necessary no matter how you slice it, however it exists in a very different system than it did in 1990. At this point I know a lot of the law like the back of my hand and the parts I don’t know I am now educated on how to find those rules. I have a list of socio-emotional goals for almost every developmental issue at my finger tips and I have an entire community of people going through the same struggles I am at the click of a button day and night. All of this has been achieved through this tiny-huge world we have online. I know exactly the gap closure between special education kids and regular ed kids not only for my district, but for my school. I know the 6 payment tiers that exist and the formula used to calculate how much extra funding my district for each of my kids for using special education services. I know what belongs where on all 13 sections of the IEP and how to make a goal measurable. And I know when I am being BS-ed by my district. I don’t know all of this because of my training…I know it because I live in 2016 and any parent with a computer and the desire can learn the same. In 1990, my school district certainly was not expecting 1 out of every 6 children attending (or 15%) to have some sort of developmental disability….or for the Autism rates to be 600% higher. My child’s elementary school currently has about 700 students and about 100 IEPs (last I heard)…all while serving about 29% of their students as English as a Second Language with limited proficiency. Teachers are stretched thin. Inclusion and LRE are so important for our kids future, yet most regular education teachers were not taught the basics on how to include and teach special ed kids in differentiated instruction or how to manage a classroom where there are multiple children with conflicting accommodations. (ie: When Johnny gets stressed, he can crumple paper…but Jimmy’s auditory sensory integration issues make it impossible to keep it together when he hears paper crumpling….). Parents are communicating, educated and knowing the legal hoops to jump through if their children’s rights are being violated. It is a system that cannot hold itself up and still serve our most vulnerable children to be the most successful they can be. Parents…please keep fighting for your kids….keep learning everything you can. Educators…please do the same. I do not have the answer….I am just hopeful it is found before my children have to move on from the “protective bubble” of IDEA and there are no grown up IEPs.
By the time my oldest was 18 months old, I knew he had Asperger’s….but no one else seemed to know except for maybe my husband. He spoke like an adult yet seemed confused whenever anyone asked him something directly. (“He’s a genius! Listen to him talk…he’s just busy thinking about other things”). At Mommy-Tot class while all the other babies would watch with wonder as technicolor bubbles floated by, he was finding his way across the gym to open and close the door over and over. (“He’s a genius! Bubbles are beneath his intelligence!”) And yes, he loved to go to the park….but would decide which park based on what kind of public toilet was there and then would spend the majority of his time in said toilet if allowed….and I would often have to threaten him with a consequence if he didn’t go and play (“He’s a genius! He’ll be an engineer one day…he just wants to know how it works!”). While he also never hugged or kissed me, he would let me do it to him. I said “I love you” any opportunity I had but he never said it back. He would let me sit down to play with him, but his back would soon be turned and he was playing on his own again. His conversations often consisted of repetitive phrases over a video he watched over and over for months at a time. The list could go on and on….but the fact was that he was not particularly disruptive, he was functional and he was so cute and tiny and spoke so well people mistook him for a quirky genius. What was difficult is that we lived far from family and friends so when they saw him for brief periods they would just tell us we were worrying too much. They would see the quirk for a few days at a time….not hours on end like we saw. So when my youngest got to be about 8 months old and clearly had serious medical issues all concerns we had about A1 went to the way side. My concerns were still there but again were also pushed aside by the pediatrician when I would bring them up (“Some kids are just persistent” “Drooling has just become a bad habit”) It wasn’t until he was 7 years old that I had him tested and really, it was only because he was floundering at school. I was being told that “some kids are average to below average”….the same kid just 2 years earlier everyone was telling me was a genius. I had to see if he had a diagnosis in order to get him the assistance he needed at school…And sure enough….psychoeducational testing by a licensed psychologist showed what we always knew. ADHD and Asperger’s Disorder. A few years later I actually got a second opinion from another psychologist…and guess what….same outcome. On standardized testing. Across settings. Again. He is definitely not a genius…but he is also definitely not below average. A1 is the fall-through-the-crack kid. His rigidity can be seen as defiance. His poor social skills makes him look like a loner. His attention issues make him look lazy. And as the person who lives with him 24/7 I can tell you he is no more of those things than any 12-year-old. He is a people pleaser and when he thinks he has failed at that he kicks himself over it. Overall, A1 is going to be fine….but I believe it is because we have recognized the thing that makes him different…but not less.
A2 was not diagnosed until the age of 4 despite my husband and I and everyone around us knowing something was very wrong. What was troubling was that when he turned 6 months old and I started him on solids…everything else stopped. Except for the worst constipation I have ever witnessed. He stopped growing. Stopped. Completely. At one year he was about the same size and weight as he was at 6 months old. He stopped developing but did not lose any skills. At 12 months he was the same adorable little nugget he was at 6 months. Was it possible I willed him to stay an infant? What also did not change was his inability to stay asleep for more than 90 minutes at a time. Down for 90…up for 2 hours. This went on for 2 years and one day I got the flu and was out of commission for 10 days. I had to let my husband get up with him through the night. When I got out of those sweaty sheets after 10 days….it occurred to me that I was not clinically depressed as I believed I was up until that moment my body became an achy, hot mess….I instead emerged a new woman. A rested woman forced to sleep by a virus. A2 had already been diagnosed by a fresh muscle biopsy at the Cleveland Clinic with Static Encephalopathy with Mitochondrial Dysfunction….we got a scary letter to take with us everywhere we went. We were told not to let his blood sugar drop too low. We were told to keep him cool in the summer. We were told to have a very low tolerance for fever and dehydration. We were told he had an uncertain life span.
At about 2 years old when he started crawling he found that rubber stopper thingy behind a door. Thhhhwwwaaaang! He’d whip his head to the side and roll his eyes. Thhhhwwaang again. Again with the head thing and eye rolling. I remember my heart dropping to my stomach. I remember thinking “oooohhhhh shiiiiittt”. I knew that was a stim (self-stimulatory behavior). For the next 2 years I watched A2 develop at 20% of the speed of the rest of his peers. He went from being the most social baby of the group and as his peers developed speech I watched him realize he was not part of the group…to standing by the group and watching everyone play….to standing out of the group and not paying attention to everyone. To this day I believe it is not because he didn’t want to…but because he knew he couldn’t. He flapped. He screamed. He stopped eating all solid food. He had no language other than the vowel sounds of babbles of a young infant. But he was still sweet, and loving and laughed heartily. He was finally diagnosed at 4 years old with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). The diagnostic version of “your kid has Autism…mostly…”.
What’s in a name? Autism, Asperger’s Disorder, Pervasive Developmental Disorder Not Otherwise Specified, ASD, HFA, On-The-Spectrum, Neurodiverse, High functioning Autism, Severe Autism, Non-Verbal Autism. You may have heard any and all of these used when hearing about someone who has Autism Spectrum Disorder (the now official diagnosis to describe all of the above as of 2013). We will likely intuitively still call Autism all of these terms because as we have all heard “if you meet one person with Autism…you have met ONE person with Autism”. The criteria was narrowed and Asperger’s and PDD-NOS were eliminated from official diagnosis. In my private practice as a therapist, I now see children who come through my office with a list as long as my leg (I’m only 5 feet tall, but you get the picture). Oppositional Defiant Disorder, ADHD, Sensory Processing Disorder, Dyslexia, Social Pragmatic Communication Disorder, Bipolar Disorder……all in one child. Why?? Because we have eliminated Asperger’s Syndrome from our vernacular. My children have both been reclassified as Autism Spectrum Disorder (as they are supposed to be due to consideration of prior history and diagnosis). But they could not be any different. With hard work that would make your head spin and a hard-core bitch of a mom they continue to improve in terms of working toward being independent, contributing members of our community. But they could NOT be any more different. This is autism.
Today is World Autism Awareness Day. Coincidentally, it is also the day that I will be speaking in front of a very large audience at a Tedx Event stealthily addressing the first step necessary in tackling the mountain for disability advocacy as whole in society. About a year ago I realized that I was advocating my way to an early grave. The individual battles, bureaucracy and other professional’s personal agendas were getting to be insurmountable. So I stopped. I don’t think I have looked at a piece of paper with either child’s name on it in almost a year. I did it out of self-preservation….I did it as a life insurance policy because I have to live one day longer than A2. My real life insurance policy runs out in 7 years so I either needed to up the ante and increase my red meat consumption to run out my clock or back away. I chose back away. And during that time a metamorphosis occurred. I realized that it may be much easier and much more impactful to change the world around my children through advocacy rather than to fight the good fight one arduous and marginally successful battle at a time. And if you know me personally, I think you saw it happening too because people are believing in my movement…quickly. Very, very quickly. It’s working already.
Advocacy for those with Autism and other developmental impairment is becoming a trickier and trickier thing. The landscape of Autism has changed significantly in the last 25 years. The prevalence rate has hopscotched up from 1:2500 to about 1:68. That’s a 600% increase. One reason may be is that as professionals become more familiar with ASD it has been more frequently diagnosed. While this is true, conventional wisdom tells me that this is only a small part. Let’s face it…how many non-verbal, incontinent pre-adolescents did you know growing up? Because at one point in the last few years I had 2 living on my cul-de-sac. This is not counting the other 8 with varying degrees of ASD who live within a 3 block radius. The prevalence rate has risen at the same time computers became a common household item and paying for the internet became yet another utility bill. For the first time ever, previously isolated families and those with disabilities had a way to connect with a community and also gain information about treatments, supports and advocacy. I have learned more about what to do for my children through the Internet than any professional has ever taught me. People who were diagnosed (or perhaps misdiagnosed) 20 years ago are finding each other and forming a neurodiversity movement. It is for these reasons that I believe the disabilities rights movement has the potential to be the swiftest civil rights movement in history. However, I also believe that it could be one that never fully comes to light for the same reasons. Advocacy and fighting for individual rights are actually very personal experiences. We all have our stories…and some frankly would make most people’s ears bleed to hear them. What is right for one individual may not be whats best for another…and the reasons vary. Mix this in with hypervigilant parents, hypervigilant self-advocates, a fragmented healthcare system and school systems who may have been better equipped to deal with IDEA at a time when they might see 1 kid with ASD in their whole district rather than 20 just in one grade and we have a recipe for a whole system collapsing in on itself with the casualties being the very people we are advocating for. (**Internet Troll Disclaimer: REEELLLAAAXX…..I’m not talking about YOU specifically….I have included other hypothetical situations…as well as many I did not….). As a group, I am challenging everyone to think about the common threads rather than the details. Go talk to an anti-vaxx parent…and then go talk to a pro-vaxx one. Have a chat with a parent who paid for 40 hours a week of ABA therapy that was ultimately successful for their child…but also talk to an adult with ASD who had ABA back in a time we called it Lovaas and there was no such thing as “errorless learning”. Talk to the retirement aged parent you don’t see because they are trapped in their house on lockdown with their adult child who is severely affected with Autism, violent, self injurious and an elopement risk but there is no funding to place them in a safe environment. Then go talk to the Autistic adult who wants people to accept that people first language is harmful and ASD is not something to cure. Ask them all to talk about a time they needed to advocate for themselves. And listen closely. Self preservation and love are both innate.
It’s Autism Awareness month. Let’s raise the RIGHT kind of awareness shall we? We can be a united front even when we have our own agendas. He HAVE to be a united front even when we have our own agendas. The future as society as a whole is depending on it…..
Because we are so immersed in this world of autism I have erroneously concluded that everyone who lives outside of this Village is already aware of autism. However, there is a secret sorority that exists…one equipped with a secret handshake and password. I am in that sorority yet have no recollection of agreeing to join. Autism is funny like that. The Village of Autism parents is a unique one. We are a motley crew of individuals whose path may have never crossed otherwise. We meet each other in waiting rooms and lobbies of doctors offices instead of in the PTO. We have closed blogs and Facebook pages instead of casual phone calls. We learn more about the newest treatments and resources from each other than we do from professionals. We talk about how well our child is pooping quicker than we will discuss how well they are doing in school. Though we are typically the least able to, we are often the first responders to others in the Village because we are more likely to reach out to one another than we would outside of the Village where no one speaks our language. And we find each other….everywhere and all the time. Today while sitting on the floor in the middle of the children’s shoe department feverishly tearing inserts out of shoes and hopelessly attemping to shove A2’s newest orthotics into them with no success I broke down and cried. Just sat there in the middle of the floor, surrounded by ridiculous shoes with flashing lights on the soles and sobbed like a toddler might who couldn’t find the shoes she liked. At that same time, I peered up to see a woman pushing a cart with one hand while calmly using her other to push her much-too-large child who was humming loudly down back into his seat. We made eye contact for a single moment and silently nodded–her nod seemingly said “Yes….I know those orthotics were made wrong twice before in 7 months and represents 6 visits to the clinic over that same time. Yes…..I realize this is the 3rd store you have been in today that absolutely does not carry shoes your 9 year old can wear with the braces he must wear on his feet. Yes….I realize that your tears are really about your kid and the pain and blisters he will probably have again that he can’t communicate or the weird, white 1960s Frankenbaby shoes the orthotics company will recommend that look nothing like what his school friends will be wearing. Yes….I see you….and I know you see me….” V is for my Village. The quiet, connected Village where my family lives.
“Why does he do that?” A common question for parents of children with autism. There is no easy answer for that in a global sense given each child with autism is as unique as any child without autism. Many times it’s because the wires are crossed neurologically causing some kids like A2 to perceive things in the world differently. Licking a basketball before he shoots it, flapping his arms whenever he is excited or anxious or hooting loudly when he sees something interesting….try thinking instead taste sometimes is like balance, repetitive movements are calming to the body and noise is quicker that coming up with words. Sometimes the quirk comes because the part of the brain responsible for things like memory, the time it takes to process information and the ability to take another persons’ perspective has a blip and experiences the world in the same way much like A1. Someone just said to me “I always thought he just marches to the beat of his own drummer”. And he does. They both do. My kids are as they are and as they should be but at the same time they do need to be functioning and hopefully contributing members of society. Sometimes though, to watch the struggle of loneliness because others don’t understand is painful and hope that I am projecting my own anxiety and that they are more resilient than I give credit for. This unique and quirky nature of autism makes my guys who they are…..and they are perfect to me. Perfect…and different, not less….
An Occupational Therapist once corrected me in a meeting when I mentioned that A2 ‘s progress is like being in a race. She said “no, it’s like being in a marathon, you have to pace yourself”….but not having a child with a disability herself what she didn’t understand is that he needs to be front runner in that marathon if he has any hope of functional independence as an adult. As any kid ages, it gets harder to learn new things easily–neural pathways are set, myelination slows down…so early on every moment needs to become practice or a learning opportunity. We celebrate small steps toward independence with hope. After 2 years of task analysis, A2 can almost navigate a bathroom (with the exception of going) with minimal assistance. Yesterday, he independently ordered fries. But he cannot be alone or play outside without supervision, he cannot make his needs known clearly, he doesn’t know what to do in emergencies. A2 is not likely to ever live independently and as older parents without a caretaker for him this is terrifying. So we move forward and relish and celebrate every step forward with hope…and so does A2. Each step represents countless hours of work, practice and sometimes frustration. Everything he does takes 50x longer 100% more effort to learn than a child sitting next to him. His independence is truly the embodiment of a strong spirit and determination.