Chapters 5 and 6

Chapter 5:

How ironic!  The author would probably add a plug for Alanis Morissette…”Don’t you think?”  When I chose to blog about the fifth and sixth chapters around Sept. 9th, it was more of a “pick some short chapters” instead of my patriotism, which I hate to admit.  I didn’t even know the content at the time.  But ironically it was the weekend of the 15th Anniversary of 9/11.  Coincidence?  It was humbling and also brought me back to where I was and my feelings about the events on September 11th, 2001 (only my second year working with JCPS as an SLP).  For my generation, it’s definitely one of the “where were you when” moments and seemed to be for the author as well.  If he is going to write about his young daughter during that time, it’s one of those things you just mention.  You just do. Especially if you were as close to the location of the tragedy as his family was.

He starts by talking about playing and dancing in the area of the former World Trade Towers, and Schuyler’s laugh which she has never lost.  He remembers her hands touching the glass of the towers and the invulnerability and innocence taken for granted then.  In my mind, it foreshadowed or was some sort of analogy this family had BEFORE Schuyler’s “MONSTER” was first reveled.  Then he immediately writes, ”when the first plane hit.”  Everyone knows what he means without much introduction.  He continues to write, “something horrible was going on in the city, but no one seemed to know exactly what it was just yet.”  I can only assume this is how Robert and Julie felt during their extremely long wait before their daughter’s final and accurate diagnosis.  He writes about “it”. It.  One word to encompass the entire event and the whole place.  The saddest place in all the world.  A place and people with unanswered questions, anger, frustration, and scared as could be.

Chapter 6:

Robert (the author) tells us that his daughter was now 18 months old.  He wrote that they really weren’t aware that she should have been talking, or at least trying to talk by now.  I guess we (well I will speak for myself), as SLPs, with our education and training, think, “DUH!”.  I guess I take it for granted knowing the communication milestones of children.  I have had it memorized from undergrad language development class (GO CATS!  You know I had to throw that in :)).  One word at one, two word utterances at two, three at three…it was one of the easier things to memorize, wasn’t it?  But then I think about my own knowledge or lack of knowledge about car engines at the same of my college studies.  At one time I opened the hood (proud I could do that) and looked around the pipes, tubes, tanks, etc. and said, “Where is the radiator?”  So, that made me more forgiving for a family that are not SLPs.

Robert tries so hard to get his daughter to say, “Mama…Mama…Mama!”  But every single time, Schuyler would look up at him with a big smile and say nothing at all.  By the time they were beginning to have her evaluated for their Birth- to -Three program (I guess what we call First Steps) her speaking deficits were becoming more obvious.  Her speaking deficits, not necessarily her communication deficits.  She could produce vowels, had inflection, appropriate eye contact, and smiled at others, but no consonants…therefore no words.

I have never heard of “The Holland Thing”.  This was a new concept to me.  Apparently about 20 years ago, a writer for Sesame Street (my fav) had a special needs child with a diagnosis of Down’s Syndrome.  She wrote an essay about how she perceived life with a child with special needs.  Her essay compares the unexpected situation of planning for a vacation in Italy, to instead have the plane land in Holland.  She discussed her disappointment in the differences, but learned to appreciate the wonderful aspects of Holland could be as good as Italy.  My first thought-“This is no sort of vacation in anyway.”   This “Holland Thing” didn’t help them.  He states that he was bothered by the fact that it called for nothing other than acceptance.  At this time, there was something very wrong with their daughter, and no one could tell them what was wrong or what it was…Who would “accept” that?  They continued to wait for answers at the Child Development Center at Southern Connecticut State University which spent several hours observing Schuyler, weeks compiling data-to say the obvious-“She Couldn’t Talk”.  The unanswered questions started the thoughts of personal failures and the beginning of personal darkness and negative effects on the family as a whole.

–Kim Raho, SLP at Norton Elementary


9 thoughts on “Chapters 5 and 6

  1. Darcy Lanham says:

    I love the “Holland Poem”, but I found it interesting he did not. It made me realize that people are always in different phases of the grief or acceptance progress.

  2. Jane says:

    I think Robert’s analogy of September 11th is appropriate to explain how devastating it can be for parents to experience such a change in their perception of and dreams for their children. The reminder of the fall of the towers sets up a picture of darkness and helplessness that Robert and Julie will feel after they receive Schuyler’s diagnosis. It also provides a context for not buying into “the Holland thing”. Just as September 11th was not just a simple little change in vacation plans, nor is Robert’s experience with Schuyler’s diagnosis. But if given the chance, I would point out to Robert that even after something as tragic as Sept. 11th, people still found ways to come together and support each other. And if he is open to it, I think he will find people will come together for him and his family.

  3. Reading chapter 5 brought back a time of uncertainty for our nation. The swirl of emotions and feelings of unrest and helplessness abounding in my home land, which had always felt so safe, were overwhelmingly scary. I like how he took the time to describe this in detail, so that we could relive that emotion. I agree with his assessment that America was swimming in sorrow. I cannot even imagine what it would have been like to see “IT” up close and personal. But isn’t it true that children are the sunshine in our darkest moments? Highlighting the idea that Schuyler was a bright light in that dark time is so true. She had a purpose for being in that moment, to bring some level of joy to others. Bringing to the surface, the fears that 9-11 thrust in our faces, we can relate to the fear that they were feeling as parents with no answers to their child’s problem which was becoming painfully clear. Fears inside of us can do lots of damage. It saddens me to think of the anxiety that Julie and Robert were faced with awaiting a diagnosis. I can imagine that raising a child with special needs takes a toll on a marriage. I hope they fight to keep theirs lasting through this book. Chapter 6 reminds us, as SLPs, to give grace to parents faced with helping their child, regardless of the problems. They are grasping for answers and hoping for successes so that their child may be a functioning member of our society. Many of us deal with parents going through the difficulties of acceptance regarding their child’s functioning on a daily basis. May this remind us to be patient and understanding.

  4. Melanie says:

    I feel like Robert is taking forever to dive into the topic we are all interested in but after reflecting I suppose the long drawn out beginning of the book symbolizes the length of time it took him (and maybe his wife as well) to accept that his daughter is not developing along the typical developmental path.

    It appears that he and his wife are struggling to work as a team during the journey and are becoming distant from one another which seems to be very common amongst spouses who have children with special needs.

    It will be interesting to see if they become more distant or grow closer together as Schuyler receives an official diagnosis and everyone works to help her share her “voice.”

  5. Karen says:

    Melanie, I completely agree. It seems painful to me to not know what the monster is. I will be honest . . . I have finished the book. I could not discipline myself to only read 2 chapters each week, plus I wanted to know! I have never been in a book club before and perhaps this is why. The reference to 9/11 is a good time reference and lets us know how it impacted Robert. I am not sure that it is really relevant to Schuyler’s story though. We are given insight into the struggles and disconnect that disability brings to families. There needs to be support groups out there for families in these situations, if they already do no exist.

  6. Carrie says:

    I am glad Julie was persistent in advocating for Schuyler to learn ASL, and I was annoyed with the therapist who discouraged it. Really? Ugh!!
    Robert describes how Schuyler was often not fully cooperative / was annoyed with examiners, because she had been placed in those situations so often; he also mentions how she responded much better when the evaluation was more playful and when it was on her terms. True for many of the preschoolers we see. My curiosity rose when he stated that Schuyler was friendly and playful but that she danced mysteriously with her shadows, did not engage with other children, was fascinated by her reflection, and gave limited eye contact to examiners.
    I felt guilty when he said that the language the examiners used to describe his daughter was both alarming and alien. ……. I am going to try to improve the way I discuss / present test results to parents… I do try to present weaknesses gingerly, to highlight strengths, and to use lay terms…… but that dang Lang Assessment Summary visual makes things difficult, as does the rating scale (re kids with severe delays / disorders).
    Lastly, I cringed a bit when he said the examiner at the Child Study Center said she would be in touch in a few weeks, but it ended up being several months. Yikes!!

  7. Pam says:

    I am so enjoying reading this book. I appreciate the author’s transparency and his honesty. When you have children, you feel like you are responsible for every thing about them, and you internalize their faults and weaknesses. He knew his daughter well. It made me think about evaluating a 3-year old. You get such a short window to assess their skills and make decisions. Parents know their children so well, and have a lot of information to offer, even when they don’t realize it. He was hanging on the words of the Yale diagnosticians, “pinning all his hopes on them to find an answer,” and continuing to feel as though he had failed Schuyler.
    My son had ADHD, and really more of the ADD type. Before he was diagnosed, I felt like such a failure. I have an older daughter who was the picture of normal development. I knew I knew a lot about developmental milestones and how to help children through them, but he just wasn’t learning. I spent a lot of time kicking myself and wondering what I had done wrong, what I was continuing to do wrong, etc. On the one hand, I wanted to accept him the way God made him, and just love him for who he was. On the other hand, he wasn’t learning (though he had great speech and language, and good school behavior).
    Our business became a lot of people’s business. His impulsivity and certain behaviors drew looks from others. It was humbling. He wasn’t the student who was going to get the scholarships, etc. Medicine helped my son, but he had lost a lot of learning time, and acquiring the skills he needed was a long process. Though my situation is different and not as life changing, my trip to Italy also took a detour.
    And by the way, I think all of this is pretty hard to accept for a young child. One’s logical mind MAY be able to say, “This is a detour and I am just going to appreciate the detour.” But actually, at least at first, it may just be too scary to believe that the alternative (Holland) is better than what seems to be the ultimate (Italy). For your child’s sake, you just cannot be satisfied with less than what you think is best. I think you need some years and some evidence to be able to see that the alternative WILL work out and it WILL be okay.

  8. Rachel says:

    I found that although the chapter regarding 9/11 did not necessarily provide a direct impact on “Schuyler’s story”, it seemed to me as a symbolic representation of the beauty of the seemingly perfect, invincible twin towers, and it’s iconic place in the NY skyline and how quickly that all came crumbling down…..much like how the family’s vision of their daughter’s future seemed to be crumbling.

    I have read the Holland Poem many times and always enjoyed it, but I agree with Darcy, it puts in perspective that not all people will react to having loved ones with disabilities in the same way. I think it put a unique spin on how everyone may arrive in Holland via a different “journey”.

  9. Marie Fisher says:

    I always think back to exactly where I was on September 11th. I think that time stood still for everyone on that day ( even though I was only in the 5th grade!!). I like how Robert wrote about taking Schuyler to NYC after the attacks. He referred to her as “sunshine” at a place when it was hard for people to find anything positive to look at. I often feel like this about the studnets I work with. I think that we all have a special few kids that brighten our day each week we see them (not that I have favorites…) regardless of the stressful day we might be having.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s