Just the other day, a mom I know from back home contacted me asking for our special education attorney’s information. Sadly, it came as no shock that this intelligent, dedicated mom was having issues with our former school district — the same school district that she teaches in, and that is well aware that she is the mother to a child on the autism spectrum. Her story was all too familiar and pressure instantly filled my head. I was furious! Did they NOT learn anything from our situation three years ago? Surely it wasn’t that far in the past that they forgot! I immediately passed the attorney’s information on to my friend and really started to think about what had happened to us and what has changed.
A significant change in our former school district was that they are no longer part of the county’s special education co-operative. Maybe that’s why it seems that the experience surrounding our son’s education and advocacy was filed in the past and no one cared. Everyone is different, from the principal to the coordinators to the special education director. They obviously cannot learn from what they do not know… or can they? Shouldn’t they be able to at least use some common sense? In my friend’s situation, her son’s math teacher expects him to do math homework every night. Sure, not really a problem, unless you’re a child on the autism spectrum. Not only does the homework take an excruciating amount of time to complete for this child, but the teacher expects the parents to correct the work and make him redo the problems he missed. Now, some of you will think, “So what? What’s the big deal?” Imagine what that feels like to a child that already struggles all day in school trying to keep focus and attention on what is needed while working so hard to block out the sensory world around him that is cranked up to 100! Then come home to homework, therapy sessions, and siblings that throw in even more sensory overload. It has got to be utterly exhausting for our kids. When this was brought up to the teacher, he responded by attacking the mom, who, mind you, is also a colleague AND a MOTHER TO A CHILD WITH AN IEP! 
This is not shocking news that was withheld from the teacher. He is well aware of the child’s needs and who the mother is. The parents asked for an answer key to be provided so that checking for errors would speed things up and the teacher refused. Flat out refused. The rest of the team at that point agreed that was a reasonable accommodation for this family, however the teacher still refused and the meeting was called to an end pending an advocate for the child and his family. Why does it have to come to this? The accommodation wouldn’t cost the district any money and barely any additional time for the teacher. He just refused for no apparent reason. So now the team will have to meet again to resolve any unattended to issues that should have been resolved at the initial meeting. Another substitute will be called in for the mom and other teachers in attendance leading to unnecessary costs in a district that lacks funding, in a state that can barely pay any of its bills.
Now, I have to add that the above issue might seem like a trivial thing, but the meeting was scheduled to address 13 issues with the IEP, most of which are health and safety related, such as the IEP not addressing the child’s EpiPen. So I think it is safe to say that this was the straw that broke the camel’s back. I know it would have been for me, and it was, back when we went through this with our son. Our school nurse at the time disagreed with our allergist/immunologist’s assessment of our son’s allergies, and she asked us, “Did he get his degree out of a Cracker Jack box?” I do not think that all school nurses are somehow failures and that is why they settle on being a guru on band-aids and ice packs, but I have to say that this particular school nurse was long overdue to retire, regardless of her age.
I know so many parents that struggle and have to fight their schools over EpiPens, enzymes, probiotics and other supplementation that is accompanied by a doctor’s note. My own cousin’s daughter, who is diabetic, had struggled with the public school on the policies around whether or not she may or may not test her own sugar and if she was to be accompanied to the office. It was such an ordeal that he chose to remove all their kids and send them all to the Catholic school where they left the decisions up to the parents on how their daughter’s diabetes should be managed, as it should be. To refuse this child the courtesy of having a classmate walk her to the office on the occasion that she feels she needs an escort because of the danger of passing out, is, to be blunt, asinine.
Schools are not prisons. They are environments that should be dedicated to educating and keeping children safe. More often than not, I’m hearing stories from families that sound like their children’s schools are run by dictators and wardens. When our son was five, the school started to lose control of the environment in his kindergarten class. It was just too chaotic and the teacher did not want to make accommodations for him. The aide tried his best, but was failing quickly, and our son could sense it. As a result, he started to lash out at the aide so that he could avoid the environment and go in the hall where it was calmer for him. The principal at the time brought us into the office to tell us that our son was a danger to his staff, and that if he didn’t begin to act calmly, that he would be forced to call the police. Now, mind you, he was talking about a five-year-old child that was slapping his aide, a 6’ tall 300+ pound man. I made suggestions on how to keep him calm and suggested we have a meeting to come up with a behavior plan. In the meantime, I asked to observe the class. He refused. The school will handle the situation according to policy and not by my suggestion. Seriously??? I’m NOT the enemy here. Why do schools go to such great lengths to treat us as such? After much debate and threats thrown back and forth, I was able to observe the class only after they began implementing a new strategy. 
After only about 30 seconds of observation, it was very apparent that my son was overwhelmed by the chaos of that classroom and needed to either be provided accommodations, or be switched to a calmer class. The teacher had a high-pitched voice that would cause our son to shudder every time she spoke. She would flick the lights on and off to get the kids attention, which would then cause him to want to keep the lights flickering on and off. There were so many colorful and sparkly things hanging from the ceiling, tacked to the walls, desks and floors that I too was overwhelmed and felt like I had walked onto the Vegas strip. Our son’s behaviors were all avoidant, which should have been noticed by the aide but wasn’t. Since the aide wasn’t aware, our son’s tolerance level would keep dropping until he just couldn’t take it anymore and he lashed out. Then it was their procedure to remove him to a room down the hall that had a bean bag in it, where he had to sit to calm down. I followed him and the aide while the vice principal escorted me. I was strictly told that I could not intervene nor talk to the aide and I was only there to observe. What I witnessed next was completely out of line. Our son had to calm his over-loaded sensory system by lying still on a bean bag. If he stood up or rolled off the bag, he was physically put back by the aide. That was done by grabbing him, just above the elbows, lifted up and then firmly placed on the bag in a seated position. This was done repeatedly. I stepped in front of the vice principal and asked if this was necessary. He said yes. I disagreed, and added that should another parent, not knowing the situation, walk past and see this, he or she would look at this in another light, and possibly call the police not on the child, but on the school staff. Only then did they agree to my request for a meeting to draw up an appropriate behavior intervention plan.
So while Autism Speaks is out there trying to make people aware of autism, we as parents are working doubly hard on educating our educators about autism. Our children are difficult to deal with, I agree. But as educators, they need to have compassion for ALL kids. Not just the mainstream, neurotypical ones. We were fortunate to be able to get away from this school district, but it wasn’t until a couple years later, after even more damage had been done to our child. I understand educators think they’re doing what is best, but they really need to step back, forget about everything they learned in school and really put their heart and soul into each and every child. Forget the title of mom, teacher, speech therapist, principal and focus on the child and their needs. I will never forget when a new speech therapist came on board and disagreed with me at a meeting. She was so angry with a suggestion that we were making that she leaned across the table, pointed her finger at me and told me to, “Just be the mom. I’m the professional. You’re just the mom. Just be his mom!” These meetings should not be such a struggle. Our children should not be treated as criminals and their staff should not fight so hard against making such a simple, yet crucial accommodation.
~ Cupcake
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Trust me that it can seem that special needs kids garner all of the attention in a classroom, to the deficit of the nuerotypical kids. Every parent wants the best for his kid and so it seems that every parent is willing to get the best at the expense of the others. I’ve seen it from the POV of the parent and the teacher. Aids aren’t therapists, they aren’t trained like them and they certainly aren’t paid like them.
I watched my friend’s kid get bullied, and called the N word and hit all in the name of mainstreaming the special needs kid. The whole classroom suffered when 80 percent of the teacher’s attention went to the kid who had the parents with the lawyers who would do anything for their own kid and who cares about the rest. It’s bad on all sides I guess.
My son is only three and he doesn’t have autism, but OMG is this what I have to look forward too??? People really don’t understand autism – and why they are NOT educating themselves considering the increasing # of kids diagnosed, is beyond me. I can’t believe this is your reality. I wish I had something brilliant to offer – but I don’t – just wanted you to know I am sorry this is the reality and please keep doing what you are doing to educate people.
This article is right on target, and describes what happens to many parents. Unfortunately, many schools, teachers and administrators are sorely uneducated about autism, behavior and how to provide FAPE. We should have autism teacher competencies across the states. The reality is that parents need advocates from time to to time to help them navigate and fight for services, and when necessarily go to due process to get FAPE. Of course, both of which can be financially and emotionally draining. It is not easy.
My grandsonm and daughter have fought for 3+ years with the public school. Finally found a school 20 miles away. School was expected to pay for his education since they were unable to meet his needs. Another IEP, no wonderful changes. He refused to enter the school. Asbergers and a brilliant mind gone to waste while they argued. Thank God there are Mothers who fight for their kids.
Wow! I was really surprised to see that it was not only here in S.A. that you can have problems with the school system. We have a foster daughter who was diagnosed with ADHD, MDD, PTSD and also struggles with SPD. Well, to make a long story short, the grade 0 and 1 teachers did their best although they could not always understand her. Beginning of grade 2 was still fine, then the paw-paw hit the fan when the teacher had to go on Maternity leave and the new teacher thought she knew better than us on how to handle our daughter. She and the head of the grade decided to do things their way and made such a mess of it that we wanted to start homeschooling. One example of how clever they were was when the Occupational therapist suggested that she should use a pacer to write with because she presses too hard when she writes the teacher refused. Well, my hubby spoke to the headmaster of a small school in our area and he suggested that we give them a year to see what they can do with her. The first thing the new teacher told me was not to worry, she has two children with similar difficulties, so she understands them. When she heard our daughter struggles with the writing pressure she immediately suggested a pacer herself. We are about 3 weeks into the school year, but we already have a different child. She now loves going to school, has made friends (which was a huge struggle before) and simply adores her teacher. Just this past weeks she told me that her teacher took her to brag at some other teachers and the Headmaster because she is working so well and her books are so neat! I am so glad we gave them a chance, hope all the other parents who have similar struggles will find help soon.
Sometimes to move is your last option. We just gave up on our school district after 3 years of battles for every little accommodation. After 3 years of failure to provide appropriately for my child’s needs, and failure to recognize my rights and my knowledge as a mom and an educator myself. After 3 years of refusing to follow the IEP b/c they didn’t think he needed it, and 3 years of my son hating school and failing everything–my son with the genius IQ who suddenly can’t (won’t) do basic math or reading.
We are now in an amazing school district who is in the process of reviewing his IEP. They cannot believe the incompetence of his previous district. They are appalled at the lack of basic accommodations, even at the refusal to acknowledge his autism diagnosis! They are asking ME if they can have this therapist evaluate him so he might qualify for MORE services, or if they can try this accommodation that they think would help, or what else can they do to help him and make things better for him! They call me all the time for input before trying something new with him–they keep telling me “you know him best…” It’s a whole new world. I wish every school cared that much. I wish every team valued the parents that much and respected their knowledge. And I’d tell all those parents in the wrong school districts to give up and move. You’ll never change them. Do what it takes to make the change yourself–We’re doing a short sale on our home b/c it won’t sell and we have to rent now–but it’s worth it to make life better for my son!
My stomach is in knots after reading this. All-too familiar feeling. I’m a mother of 3 children, a NT daughter and two boys on the spectrum. I’m also a former middle and high school public educator. I retired due to the challenges raising my eldest, now 15, who has always been fully mainstreamed. My youngest, age 8 is also mainstreamed. My thoughts and feelings about inclusion, empathy for the challenges educators face as well as egregious acts against my children yo-you so often, that sometimes i feel as though I need treatment. In a nutshell, as an embattled parent who has seen the best and worst in education, however, I’ve also come to the conclusion that inclusion doesn’t work. i know, I know, it’s a dirty subject for some who are out there fighting for our kids. But, based on our experience trying to get the horses to drink the water even with an air-tight IEP, we’re just emotionally and physically exhausted, stressed to point of chronic illness, (including breast cancer and autoimmune disease) . All this despite the knowledge and expertise to navigate and outwit the system and educators we have worked with. Bottom line is that although the impetus behind why our society implemented the ADA in the 70’s, thereby warranting inclusion, the time has come to reexamine whether a FAPE truly is appropriate for our children. Particularly those who have underlying sensory issues, low frustration tolerance, little to no communication, etc. I tell all i know there’s a book or two in all of this, but, as most of you know, I’m just to frazzled to make it happen. Thanks for your blog…it’s a relief to know we’re not the only parents fed up.
I have a very close friend going through this right now in the same school district she watched me have problems in. It’s frustrating that they keep trying to make our children fit their ideals of a “student” and if the children or parents become to much of a problem by reminding them what the”I” in IEP means, they just shut down and the child is doomed. I moved to another state and we’re great now. I love going to IEP and ARD meetings (CRAY CRAY I KNOW!)but she’s not in the position to do that yet. It’s heartbreaking that some of us have to leave our hometowns because they failed us. I grew up there, but when I needed them, when LoRenzo needed them, we just didn’t matter.
Diana, we too moved out of state. We are so grateful that my husband lost his job when he did. It allowed us the opportunity to move and find just the right school district to focus on our son. We couldn’t have made a better decision than to leave the nightmare behind. Granted, he still has nightmares over it, but they are few and far between now. Keep up the fight and support your friend the best you can.
Our honeymoon period with my son’s preschool teacher, aides and class structure is about to end. I have been staring down the barrel at Kindergarten since the beginning of this school year. I am terrified about what his school experience will become. So far, he has had a teacher and aides who really get Autism and pour themselves into what they do. My constant nagging fear, which has contributed to a sharp increase in the number of grey hairs on my head, is how teachers will handle him. I have NEVER wanted to homeschool. More and more, though, I am coming to terms with the likelihood that I will probably end up homeschooling Josiah. I don’t know that I would have the fortitude of spirit to battle with a school district that values numbers and performance over the individual child.
This story literally makes me sick! This is the reason I homeschooled my kids. And my kids didn’t even have an IEP that I had to fight for. Although, to be honest, sometimes I thought that would have been easier. Try getting any accomodations or the ‘least restrictive environment’ for a kid who they think can or should, easily fit into thier timy little box! Honestly, I sometimes think these people are actually TRYING to make life harder. I mean, could you come up with such stupidity by accident?
I end up blogging a lot about what happens with my ASD son in a mainstream classroom and really appreciate how you describe the challenges, especially your point about how being the mom somehow makes us incompetent (even though we are considered to be quite competent everywhere EXCEPT at our IEP meetings) and your explanation as to why homework is such a struggle for kids like ours. There are a lot of good teachers out there, but even in good schools with good teachers, the struggle to constantly educate is tedious and frustrating.
Anyway, I’ve documented a lot of our experiences with school in the following posts (and related ones ):
http://www.momintwocultures.com/2011/11/schoolhouse-blues-part-deux.html
http://www.momintwocultures.com/2013/01/back-to-school-again.html
As a former Chicago public school teacher and ASD momma, this makes my blood boil with that last statement from that speech therapist. Just be the mom, really?
We have to stay on top of these “professionals”. It’s “just the mom’s” job after all…
Which reminds me, I have to shoot out fifteen emails today. My advice to all parents out there with kiddos…write the teachers if you have issues going on. Talk means nothing. You need a paper trail.
Good reminder of making sure there is a paper trail Nicolette! Our attorney was shocked by the amount of emails I had printed and handed over to her as well as the content the staff and administrators were so willing to put into writing. Always, always get it in writing! Those emails were the nail in the coffin for the special education cooperative. Hands down.
And this is why we homeschool. We spent more time, effort and money trying to force the school to do their job than was worth it. In the end, even a perfect IEP is worthless if the staff refuse to follow it. The teacher’s unions protect the bad to the detriment of the kids. The system doesn’t care and doesn’t have to. Fortunately, charter schools are popping up everywhere and one day, hopefully, the public school system will go down in flames as it deserves to. Our kids deserve better.
Holly, every word you say is so true. I am an educator, and I HATE the way our schools are run. The teacher’s union is baloney and protects bad teachers that need to be fired. Our state finally passed an initiative for charter schools, and I can’t wait to see them give our public schools a run. Public schools need some competition.
More and more I am convinced that homeschooling may be our only option. I am not impressed with anything I have heard about any school system out there. Granted my child is still very young but when your child psychologist basically calls the school systems we are dealing with in our area respite care…I am cautious to say the least. I have an appointment soon with our school system to have our son evaluated so I am not sure what all that will entail. I am even willing to relocate. I know this may not be an option for a lot of people but I will be damned if I am going to sit through this type of thing and bang my head against a wall with people who lack understanding with what we are dealing with. I get enough of that in my day to day life thank you very much. I don’t think schools provide enough of anything anyway to warrant putting my child through this. Anyway….morning rant is over 🙂
What is going on in our country that so called professionals are so adamant that they know best without even knowing our children. Lets see, I have known my son for 16 years, but you know best what he needs? Nope, you only know best what YOU need to make your job easier. I have NT children, and the teachers still don’t want to take suggestions for what they can do to make it work better for the kids. My son had one teacher that I met during conferences who administered a little personality inventory to each child so she would know how to make art class more fun for them. This from an art teacher who had them every other day for one trimester. Why can’t all teachers take such interest in their students? BTW, she had him figured out and it was the only art class he has ever really liked and done well in.
I recently went back to school and the very first thing we were made to do was a learning style assessment. I assumed all these years that I was a visual learner but much to my surprise, I am actually an auditory learner. Who would have known?!? I realize this may be difficult to do with little ones, but imagine how much easier it would be for the teacher to know which kids learn in which way! Each one of our instructors was given a print out showing the results and the instructors then made sure to accommodate the class. One instructor took the only kinesthetic learner and had her write some of the notes on the board for the visual learners and I was allowed to tape the lecture if I needed. It didn’t take the instructors that much more effort in doing their lesson plans at all. Sounds like a win/win to me!