The rest of the title didn't fit up there so here it is:
"The Elephant in the Playroom: Ordinary Parents Write Intimately and Honestly About the Extraordinary Highs and Heartbreaking Lows of Raising Kids with Special Needs."
I asked my friend Jessica, who is an Early Childhood Education major specializing in Special Education, about if she would prefer to have a child with special needs. I mean, obviously everybody wants perfect children, who are always perfectly healthy, but does part of her want to use her unique talents for relating to and teaching kids with special needs? I don't remember exactly what she said. I'm interested in knowing what others think of this.
This book is written in brief essay form by the parents of kids with a very wide variety of special needs, from ADD to severe autism. Reading the parents' points of views, I started to address the question: "How would I deal with raising a child with special needs?"
My aunt once turned to my mom when she was pregnant with my brother and asked her, "So, what are you going to do if he's born retarded?" My grandma stepped in and said, "Then we're going to take that child, and love that child, and make that child our own." My mom was extremely grateful for this comment, because she herself had never thought much about it. But besides a strong knowledge that I will love all my children regardless of their abilities, I haven't thought much about the mechanics of raising a child with problems.
Like, for example, one major theme that this book addresses is how the parents figured out that their child was different. The pattern for many families seems to be that they have their first child who is a terror, or behaves strangely, or whose milestones are wayyyy off, and they don't even realize anything is wrong until child number two comes along, and they have something to compare with. I think many parents end up in a trap of feeling like they are somehow responsible for their child's disability. It's so weird that this is how our culture is; I mean, it's a bit odd when parents feel guilty about physical disabilities their children have, so why should mental illness be any different?
I never had considered that babies don't come out of the womb with a label on their head saying, "I have autism," or, "I have sensory learning disabilities." I suppose my own babies could have these things. We will have to wait and find out, I guess. (I'm mostly positive neither of them has an extreme case of a mental illness or learning disability because they are either at or above average with all their growth milestones).
Many children in the book had mild cases of asperger's syndrome. Some had ADD. I found them all fascinating to read about. All of the parents had a difficult time.
There was one particular parent with whom I totally disagreed. Her son had a mild form of autism, if I remember right. She was upset when the teacher at the school couldn't get him a one-on-one aid, or pay enough attention to him, or something. I think he was in a classroom of 5 or 6. She was explaining her frustrations to her friend (who was a teacher), and the friend said, "Well, the teacher has to think about the other kids in the class, too; she can't just focus entirely on your son." The mom of the autistic kid got so offended by this comment she almost completely cut off her friendship with the teacher lady. Seriously? I mean maybe I'm just sympathetic because I have had autistic students in my classroom before. She shouldn't have gotten offended; it's the truth! It's certainly too bad that it's that way, and obviously we're missing the tone of the conversation, but if the teacher friend was just making an observation about how the teacher had to pay attention to the other students, I think, "Well, duh!"
There were several other times in the book where I seriously wondered if I would have handled the situation the same way. Truth is, I'm not sure.
One thing I am sure about: parents of kids with special needs have a much harder time of parenting, and my heart goes out to them. It seems like it is a difficult, but extremely rich and rewarding experience. One that I'm not sure I want to have first hand!
This is an important and timely topic. There are some things it is impossible to understand without actual real life experience. I expect people put their stories in these kinds of books because it provides a catharsis for the parent and a small measure of understanding for the reader.
ReplyDeleteThere are some disabilities that show up almost immediately and some present when kids enter school and some when they reach secondary school. Often it is extremely difficult to tell what is ordinary behavior and what is the result of a disability.
Feeling responsible or guilty is common. In the society we live in such children and parents are stigmatized.
Certainly a teacher must consider the needs of all the children in a class, but it is also imperative that the needs of every single child is addressed in appropriate ways. The Americans with Disabilities Act was enacted in order to try and facilitate appropriate educational accommodations for disabled children.
A class with only 5 or 6 children is most likely a special class and each child will be required to have an IEP that is arrived at in a conference between parent and teachers. That is the place to address concerns over how much and what kind of attention a child will receive.
I am of the opinion that one must be careful and aware of what is going on. Too often children with behavior problems are labeled as special needs kids when the only disability they have is that they don't behave appropriately in school. It is tempting for teachers to assume that a misbehaving child has some kind of mental illness or learning disability. While this might be the case it is incumbent upon parents to advocate for their child in such a way that they make sure that proper diagnostic methods are used to ensure that no child is misdiagnosed.
Yeah, I'm sure it's a very SMALL measure of understanding that I get from reading it. I think there are people who are naturally compassionate to everybody, and then there are people like me who have to make a definite effort to put myself in others' shoes.
ReplyDeleteYou're right about disabilities showing up at different times. Because I just had never thought about living with a child with a disability beyond, "Of course I'd do it," I found it interesting for the people to write about how they discovered their child's problem(s).
I totally agree with you about teachers meeting all the needs of the students appropriately. By what she wrote, it seemed that the mom got offended too easily when the teacher friend pointed out that one on one attention from a teacher 100% of the time wasn't really possible.
I am totally for the Americans with Disabilities Act, the least restrictive environment, IEPs, etc. I think the truth is that most children (including "gifted") would benefit from and "Individual Education Plan." Ideally teachers would tailor all of their teaching to all of the children to meet all of their needs all of the time. Is this possible - no way. I think this is one reason why parents are so important in making sure their child succeeds; they know far better than a teacher ever could how their own child learns. Well, that's kind of a blanket statement, but in general I think it's true.
I know that for me, when I was teaching, I found that it was really easy for me to expect less than excellence once a student was labeled with an IEP, which is totally not the goal of IEPs! I wish my BYU education classes had done a more concrete job teaching me how to differentiate instruction. The truth is that in a Middle School Arabic class, everybody needs the adjustments most IEPs require: extra time, lots of visual cues, emphasis on verbal over emphasis on written, etc. Heh, well the REAL truth is that in Middle School, grades for world language don't count so much as the experience. The kinds of assessments that I relied on were almost all "informal", and all the students who put in effort met success. Granted, I never had a severely autistic child in my class. From what my mom tells me, it is nearly impossible to teach any of the students she's responsible for unless some severely autistic kids have a one-on-one aid.
Teachers have a horrible tendency to label children as "ADD" or "Aspergers" or whatever just by how they act in class. I totally agree with you about being cautious about misdiagnosing a child. IEPs go on the record forever.
Danny thinks that Tom Sawyer would have had ADD. But because he "lived" (as much as a character in a book lives) long ago, people just saw him as a spirited child.
Interesting conversation.
As a behavior counselor in elementary schools this has been an interesting discussion for me to follow. I work mostly with ADHD, Disruptive Behavior Disorder, Oppositional Defiance Disorder, and a few mild Autistic or MR kids. Most of the kids function reasonably well in school, they just need some additional support from a counselor to help them manage their anger or other negative emotions throughout the day. Every now and then there is a child who comes through our program who needs more one on one help, and with some of their behaviors it would be totally unrealistic to expect the teacher to give the attention the child needs. I think there should be more one-to-one counselors or aids available in the schools to help keep special needs kids on task. After working with these kids for 9-10 hours a day for the past year I can definitely sympathize with the parents and the additional effort they have to make to meet the needs of their children.
ReplyDeleteThanks for posting about this book, Kate. I'll have to check it out; looks like an interesting read.
And like my aunt says, probably it's hard to tell if the problems stem from a chemical imbalance or bad experiences in the home. I know you've talked with me before about how sad it is to see some of these kids and their broken homes. Recently I saw "The Blind Side" - wouldn't it be awesome if Michael had just been born into the Oher family and didn't have to go through all of the misery to get there? Isn't it sad that children with disabilities are born into families who don't have the resources or requisite knowledge or ability to treat them?
ReplyDeleteOn the other hand, isn't it sick how many, many wealthier people choose to abort a baby as soon as they learn they are "disabled"?
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