The death of Stephen Hawking stirred up some things for me. Seeing him described as so inspirational because of what he did while disabled struck a nerve. Like Hawking, I am disabled, but in a very different way. I am autistic and I have several learning disabilities. Unlike Hawking, I am not a brilliant scientist and I haven’t contributed something amazing to the world.
This article about a reporter who worked as a guard at a private prison in Louisiana is long, but it is a must read. Reading it so soon after that last season of Orange is the New Black, it was really grueling (there’s nothing about the show in the article). If you were wondering if for profit prisons are as bad as they are depicted in the show, the answer unfortunately is, they are worse. And the most enraging thing? For profit prisons are designed to keep people in the criminal justice system so they can continue to get paid for warehousing people.
We as a country need to ask if we want to continue spending millions to imprison people in depraved circumstances indefinitely, or if we want to set up a society that focuses on prevention and rehabilitation. There are many ways to do this. Improve our schools. Decriminalize drugs. Make sure every woman who wants birth control has affordable access to it. Increase funding for mental health services and respite care for people caring for family members with mental illness. Raise the minimum wage and tie it to inflation.
I’ve written before about realizing early on that Buddy was at risk for developing autism, and that I’d noticed the signs earlier than most parents likely would have. Because of this, when I sought early intervention for him, while a lot of the diagnosticians saw what I saw and were worried, the speech therapists, likely because they probably weren’t used to seeing children with mild autism at such a young age, kept telling me how he would grow out of it and would condescendingly tell me to do things I was already doing (such as reading to him) to help him grow out of it.
If only getting a child with autism to speak were as simple as reading to them every night!
Since pulling my son who has mild autism out of the local ISD to homeschool him, I’ve noticed a divide in the responses I get. People who have worked with the schools or who have children who are differently abled are telling me that this is the best thing I can do for my son. People who have typically developing children and have not worked with children with special needs are baffled, though.
They wonder why I didn’t try to transfer Buddy to a different school, or why I didn’t address my concerns with the school. Or even try a different school district. And I can see why there is this disconnect. For the record, my husband never understood my insistence that I be able to pull our children out of school to homeschool should the need arise until he saw just how poorly Buddy was treated, how anxiety ridden Buddy became while going to the ISD, and how much calmer Buddy is now that he is out of it.
I’ve experienced special education from several different viewpoints. As a child I was in special education until the 6th grade. I was a substitute special education teacher for a few months after graduating college. And now I’m the parent of a child in special education.
One time as a substitute I found myself in a classroom with children preparing for a spelling test. Special ed classrooms now always have aides (they didn’t when I was in it), who were useful for orientating me to the kids and classroom procedures. I sat down with one boy watched him practice his spelling. I noticed what errors he was making. One thing I noticed was he was doing something I used to do, confusing his lowercase ‘b’ and ‘d’s. It wasn’t that he didn’t know how to spell the words, but that he was mixing up his letters.
So I told him how I learned the difference between lower b and d. The b is a bad child who faces away from his parent (uppercase) letter.
Meanwhile, d is a darling child who faces his parent letter.
“Bad B, Darling D” I told him to remember. I also told him when he got his spelling test to write the letters on the top of the page to refer to. And let me say, he lit up SO much when I told him this. He was so excited to have a way to figure out the difference between lowercase b and d. When he took his spelling test he scored 90%, the highest he’d ever gotten on a spelling test! He was over the moon.
Meanwhile, a little girl I’d not had a chance to work with had failed the test. The aide told me to yell at her for failing it. I asked the aide what was going on in her life that might explain the poor grade. For one thing, looking at this girl, I could tell she was likely confronting a lot of bullying. She was completely bald. She was possibly battling a scary illness.
The aide completely discounted this and said she should have studied more.
I felt that familiar sense of frustration. Even though we have a wealth of research showing learning disabilities are real, that when kids are bullied they tend to not focus on studying, or that not performing well in school is usually linked to a cognitive deficit or emotional upset, we still view special education and kids in special education as unmotivated and as needing to be punished. I cannot stress how harmful this is!
I have an auditory processing disorder. In a lot of ways, I grew up deaf, but when tested was rated with above average hearing. In the paradoxical way that sensory processing disorders work, because my hearing was so good, I also could not filter out and distinguish between the sounds I was supposed to focus on and the background noise. Nowadays, under good conditions it’s not a problem. But I still struggle understanding disembodied voices (phones calls are very stressful for me for this reason) and in crowded restaurants or parties I also have a hard time hearing, hence why I’ve never been a party animal or big into the bar scene. I really don’t like gatherings of more than four people. And forget talking to me on a bus.
I remember people talking to me and it was like dunking your head in a swimming people and trying to understand what someone in the pool is saying. Very distorted. I did a lot of guessing what people were saying and answering them as neutrally as possible, simple “yes”, “no” or “I don’t know.” Really I was taking a shot in the dark and hoping my answer would be satisfactory.
I remember one teacher in the first grade got on to me all of the time for not paying attention and didn’t believe me when I said I couldn’t understand her. I my mind, I was paying attention. I was sitting quietly and looking at her.
Reading was something I latched onto because the words on a page were solid and certain, not distorted. I think learning to read eventually helped me comprehend what people were saying. To this day if I click on a news article and it takes me to a video I usually hit the back button. I’d much rather read it.
Now, in theory, because my problems were with auditory comprehension and spelling, under Texas law I should have received specialized education targeting those areas. In reality, Texas doesn’t like expending the resources to meet a child’s individual needs. The district wanted to label me ADHD and have my mom put me on ritalin, something she fought tooth and nail (and never did). My mom knew the ADHD diagnosis was bogus because I could sit and read for hours.
Failing that, they decided that since my symptoms most closely resembled dyslexia they would put me in remedial reading classes. For me, this was humiliating. I was reading chapter books at the age of 7, and they put me in a classroom with kids struggling to read, “the goat on the boat went out on the float.” It took some of the kids more than five minutes to read that sentence. I could read an entire chapter in the time it took them to read a simple sentence. This was not the right place for me!
Strangely, in the special ed classroom I was look upon by the other kids as an Einstein. I could read very well! And there were nice things about the special ed classroom. The kids were nicer and I got to interact one on one with them. And my special ed teachers were nice and I tended to be teacher’s pet there because I could read and made their job easier.
However, it didn’t change the fact that going to the special education classroom was a red scarlett letter. When I left general ed to go there, everyone in the general ed classroom knew I needed extra help and couldn’t do the regular work. Combined with the humiliation of not having my actual needs met and being in remedial reading, it was an agonizing experience. In the fifth grade I just stopped going for a few weeks. Amazingly I was so quiet my general ed teacher never even noticed that I hadn’t left. Eventually I went back because I didn’t want to get into trouble when my absence from it would finally be noticed.
Which brings me to the first thing I wish special education teachers knew. It is demoralizing to be in special education. No matter what it is called, how it is dressed up, or how fun it is to be in the actual special education classroom, you are marked as someone who needs special education.
Here’s another thing I wish special education teachers knew. We are called “retards” on the playground. People tease us for being in special education.
Which leads me to my next point, no kid willing underperforms or refuses to learn to the point that they end up in special ed. No one wants to be called “retard” or ostracized from their peers for being in special education. If they are there, then there is something going on that prevents that kid from learning like typically developing children do.
Typically the kids I’ve known in special ed are demoralized. They see other kids reading so easily, and wonder what is wrong with them if they are struggling with something others get so easily. And the thing is, yelling at them is not going to make them perform better. Neither is labeling them defiant or uncooperative.
If a child is having a difficult time learning, we have to figure out what is going on that is causing the difficultly. In the case of the boy I mentioned earlier, he was having difficulty in reversing his letters. This was something I did not need a fancy test or a lot of time to discover. I likely worked with him all of ten minutes. But when I showed him a way to figure out how to write his letters correctly, he grasped at it like a drowning man does to a lifesaver!
The other thing I want to emphasize here is I found this out in 15 minutes. I was subbing in this classroom in the spring semester, the second half of the school year. This was an easy problem with an easy solution. How had it gone on undetected for so long?
Likely, in my opinion, because the teacher was too busy yelling at the kids for being unmotivated rather than finding the reason for the difficultly.
Not all problems are so easy to fix or diagnose. However, if something isn’t working, labeling the kid as the problem is not the way to go about finding the solution. The child is already wondering what is wrong with him. A teacher calling him unmotivated is telling him that’s the problem. To a child who is really trying but failing, this is devastating. If you work really hard at something that you see others doing so easily, but still fail, someone telling you you need to try harder does not motivate you to do so, it’s a recipe for getting someone to give up.
There are some special education teachers who get it. Chris Ulmer starts his class with ten minutes of compliments. For children in special ed, we’re used to hearing about all the things we aren’t doing. We hear about it from our teachers, our parents, other students. Rarely does the kid in special ed hear a compliment.
Ulmer found that when he started the day by complimenting his students, the kids behaved better and made more progress. These kids are now partaking in typical school activities like debate club.
Right now our school system is focused to teaching to one type of learner. Fact is, humanity is diverse, with people who learn in different ways. However, the way things are now, if you don’t fit into the box that schools cater to, you’re branded as being difficult and unmotivated. A lot of times, kids in special education just give up, and it becomes a self-fulfilling prophecy.
To fix this we need a school system that recognizes that varied ways kids learn. A lot of the things that helped me growing up are not difficult or expensive to implement. Certainly teaching kids memory tricks to remember the different between lowercase b and d is not complex. For whatever reason, though, we don’t.
Thirty years later, and still frustrated as hell with the system.
In a lot of ways, I feel like my knowledge of child development and autism was so much more, even than other trained professionals, that while it helped me jump the gun on getting him diagnosed, the services he needed just weren’t there.
When I learned I was having a boy I was concerned about autism. Given my genetic history and the fact that boys are more likely to develop it I was concerned. I also knew that there are early warning signs for autism and that the earlier a child gets into treatment the better their prognosis.
I started searching for a pediatrician while I was pregnant and was not impressed when I brought up my concerns about autism. One doctor even told me to pray he doesn’t develop it. Buddy’s pediatrician was assigned to him by the hospital when he was born. When I first addressed my concerns with him he told me I didn’t need to worry because I have a Master’s degree so it was unlikely my child would experience problems. It wasn’t an auspicious beginning, but I didn’t have time to find a new pediatrician between then and the next appointment. When I brought Buddy back, the pediatrician told me he’d done some research, validated my concerns and worked with a plan to monitor Buddy for early symptoms.
Ladies and gentlemen, I had found my pediatrician!
And at first I didn’t have any concerns about Buddy. He smiled when he was one week old. He was affectionate and bonded well. If anything he had to be held constantly and constantly suckled. I am not exaggerating when I say that I nursed him for a minimum of twelve hours a day! I Googled how long nursing on demand takes, and while I saw people respond as much as 8 hours, I’d not seen anyone say 12 or more!
This was Buddy being sensory seeking. He didn’t nurse because he was hungry but because he wanted the oral stimulation. To this day he brushes his teeth every time he goes to the bathroom for a minimum of 10 minutes.
But I just put this down as Buddy being large for his age and needing more food. It wasn’t until he was seventh months that I started noticing he wasn’t doing things such as pointing or waving. And while he had babbled one time when he was 4 months old, he’d never done it since.
He would also do these bizarre hand movement that made him look like he was playing the piano. None of us knew what to make of it.
When he was twelve months he said “doggy” and “kitty”, and then he stopped talking. Considering that there are a lot of reasons that kids have language delays this didn’t concern me. What did concern me was that he wasn’t waving at people, saying “Hi” or “Bye”, or imitating me. He also wouldn’t clap. These are early signs of autism that tend to go unnoticed, and people told me I was overreacting.
When he was 18 months my pediatrician administered the M-CHAT, a screening tool for autism. Buddy barely made it into the risk category. He made it by one question! My pediatrician helped me to get Buddy into Early Childhood Intervention (ECI).
When we went for the evaluation we learned he had even more severe delays that we realized. Now, raising Sissy who does not appear to be on the spectrum I can see this. But because of this I can see how easy it is for a child to appear to be developing typically to the untrained eye and then, once they get to a certain age, the gaps in development becomes so large that it seems they developed autism overnight. In fact, people have asked me if Buddy regressed. He didn’t, it just became more apparent that he wasn’t developing typically.
ECI was a mixed bad. I quickly got frustrated with the speech therapist. I think the problem I ran into was since I was looking for signs I caught his autism earlier than most parents do, and that the speech therapist was not used to working with kids with autism as a result.
The reason therapy was stymied was because Buddy did not imitate (he’s starting to now…sorta kinda). And speech therapy requires that the child imitate the sounds the therapist makes. The therapist decided we should work on teaching him sign language instead, because we could force him to make the hand movements.
Buddy hated being forced. I was worried that therapy would backfire if we tried to force it and refused to do sign language.
In college I was trained in ABA therapy, and I tried doing that with Buddy with little success. He wouldn’t imitate and he didn’t want to perform tasks for a reward. Lately I’ve been reading about DIR/Floortime and similar methods that my husband and I have sort of stumbled upon through trial and error and thinking, “I wish I knew about that then!” But I didn’t, and his speech therapist certainly didn’t.
And there’s where I felt I fell into the trap of having enough knowledge to know very early something was wrong, but finding a lack of services to support us. It’s been incredibly frustrating.
We did have an occupational therapist from ECI who was amazing, so it wasn’t a complete waste.
So, what do I think of Clinton’s proposal to help families with autism? I think they are desperately needed!
If infants are screened and detected at younger ages, not only will parents not be blindsided, but this I think will help combat a lot of the fears about vaccines causing autism. People ask me if I think vaccines caused Buddy’s autism and I tell them he was autistic before he was born! That whole sensory seeking and nursing constantly? Well, in every ultrasound I had of Buddy (and for whatever reason that doctor did them at every visit), from the moment he developed hands he was sucking on them. Even in the womb he was sensory seeking. Buddy was born with autism, it just didn’t become apparent, even to other people (my in-laws, for example, thought I was making a big deal about nothing until the accepted it and finally banded together with me this Christmas), until this year!
The other part of this is making sure that early childhood interventionists are trained in working with babies with autism, and how to get around to barriers to treatment such as not imitating and not caring about rewards.
With Buddy, you have to meet him where he’s at. For instance, if I ask him to name his colors he won’t do it. But I found when helping him play with blocks if I started listing the color of the block we were playing with he would list it with me. After months of this, he would start naming colors in his every day environment. I term this joining with him.
As I’ve blogged about, I’m currently distraught over the lack of support I feel like I’m getting from the school. When I met his teacher, I wanted to focus on Buddy’s strengths, though I did have to mention autism because he wasn’t going to answer her questions. So I said, “This is Buddy, and he has autism and doesn’t talk much, but he’s real good at counting and can count to 20 and knows his colors.”
The teacher replied that they’d have him talking and socializing in a few months.
I introduced Buddy to her in this way because I wanted to focus on his strengths and build on them.
And she gave me an empty promise in return. And empty, unrealistic promise. While Buddy has made progress verbally, he’s not talking and speaking like a typical five year old, and it was cruel of her to promise it.
So making sure that teachers are trained on what is and isn’t typical for an autistic child, especially if they are special education teachers, it vital. And definitely could use the insurance coverage of effective therapies for children with autism.
I hope something comes of this, or this signals a shift in how we see and work with children with autism. Unfortunately, it’s not going to do much to help me in the here and now.
After a two week Christmas break, school started up again this week. I am never sure whether or not Buddy likes it. When I asked him, “Are you looking forward to going to school and seeing your teacher?” He just repeated her name.
But he seemed eager to go. I was starting to rethink the homeschool idea, with one exception. These week long or longer break wrecks havoc with his schedule, and the school year has a lot of breaks. One benefit from homeschooling would be being able to start a year round schedule to give him the consistency he craves.
Yet even with the long breaks that public school has I wondered if it could work. He’s making good progress. He’s identifying his letters, drawing shapes, he’s not been counting as much as he used to but I think that’s because he’s trying to get his letters down. I’m also starting to have more little conversations with him. We were doing a puzzle that had stop lights on it and he said the green one was blue. I corrected him, and he looked at it and said “I see blue.” Usually when I pick him up from school and ask how his day was he just repeats “day” or says nothing, but on Tuesday when I asked he said, “I read books and played with blocks.” Yes, this is something most five year olds do, but six months ago he wasn’t even talking every day. I was dancing on the moon because I was finally having these little conversations with him! One day his teacher said he was talking a lot at school and they were real excited about the things he’s started doing.
So it was a slap in the face yesterday when I got his report card showing no progress and saying he zones out in class a lot.
I started crying so much while driving him home that I had to pull over. I’ve been seeing him really bloom these last few months and the school didn’t acknowledge any of it and said that he’s having more difficultly. Once again, he’s not where most five year olds are, but he is not on the same timeline for most five year olds! And it’s not fair to compare him to that!
I’m wondering why there’s such a disconnect, and I’m wondering if he feels discouraged there, because I know I’m feeling discouraged.
Some little things are making me mad. For instance, there’s a color code system at his school for behavior and orange is perfect behavior. Every day he has come home with an orange dot on his daily sheet. I don’t know why anyone at this school can’t mention this to me as a positive. Especially considering most kids with autism have behavior problems. Or why the talking he was doing didn’t make it on his report card.
Things I was taught as a counselor include that it is more important to notice and feed what a person is doing right than to focus on what they are doing wrong or not doing. I don’t know where in our society we got the insane idea that if we focus on everything a person is doing badly they’ll change, because it’s not what happens. People get discouraged and live down to those expectations. I feel like he is being set up for failure in pre-k!
I also know from experience just how painful and discouraging this is. I really struggled in elementary school, thought I was an idiot and shouldn’t even bother with college, and hated school. Things didn’t click for me until junior high, when I literally went from special ed to advanced placement and honors classes in two years. This leads me to believe that Buddy is developing on his own timeline like I was. Thing is, those elementary school years nearly broke me, and if I’d not had a supportive family it may well have.
All kids need to be set up and the goals placed upon them realistic for success, but for a child with special needs this is even more important!
Once again, I’m wondering if his teacher has a good knowledge base of what is normal for a kid with autism (since as she is a special ed teacher she should, but having been through the public school system in Texas, I can say that doesn’t mean much). Once again I’m frustrated that the school does not seem like a good place for him to be and that the better option would be to find a therapy group that specializes in autism and homeschool him, because that’s going to cost me both in money and time.
At any rate, when we got home I burnt the report card. Once I got Sissy down for a nap and Buddy happy in front of “Wreck It Ralph” I called Andy and told him what happened and we both agreed to celebrate Buddy that night. When Andy got home we told Buddy that we were proud because he always got orange dots for his behavior and that he was talking to us so much more and we were going to celebrate all of the amazing things he was doing. Then I asked him is he wanted pizza or fries, and he said pizza. Him just telling us he wants pizza is new and progress. Usually if we give him a choice he doesn’t answer us and we have to guess. But last night he wanted pizza.
When we got to the restaurant he jumped out of the car, grinned and hugged me. He’s always on his best behavior when I take him out and he was last night. Then we went for ice cream.
When I went to get him ready for bed he jabbered, and while I could only pick up every few words, he was talking in sentences. When Andy came in to sit with him Buddy told me, “Love you, night.”
Andy and I can’t help what the school does but we sure as hell can make sure Buddy knows his abilities are acknowledged and appreciated.