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Tuesday, September 20, 2011

Because Every Day is an Adventure...

Yesterday J had his psychological evaluation with the school psychologist to see if he qualifies for an IEP. Her office is an hour away on the other side of Atlanta, so we had to get up early (for us) in order to get Little Brother to my friend's house before we left. The testing was to take about two hours and I knew that LB and I would both be much happier if he were occupied elsewhere. Preferably somewhere with toys. Another homeschool mom volunteered to watch him for me, so I left him on his own for the first time. I've left both boys with someone (other than their dad or brother) once or twice, but never LB alone. He was not enthusiastic about going, and J didn't really help. Being a worrier, he kept bringing up things that could go wrong. Fortunately, he didn't start that until we pulled into the driveway, so I was able to get LB out of the car before he got upset and panicky. J stayed in the car while I took LB in and after a few minutes, I left, with no tears in sight (from either of us.)

In the five minutes between my friend's house and the interstate, J managed to spot a spider. Have I mentioned that he's terrified of spiders and bugs? So, someone screaming while you're driving down the road is always nice. He refused to kill the spider, but by the time he told me that, we were already on the interstate. And it was on his window, but not in a spot where I could just roll down the window and let it out. I'm still not real clear on exactly where it was, but I think it was on that little "wing window" area at the back part of the window. Except these days, those windows don't open. So he spent the entire hour ride staring at the spider to make sure it didn't attack instead of playing his DS.

When we were about ten minutes away from the office, my phone rang. It was a friend who has recently realized that her son is autistic. She was having a really rough day and although I did listen for a few minutes, I felt bad that I didn't have more time to talk to her. We all need someone to listen on those days when we're just totally overwhelmed with everything.

Just as we pulled onto the street where the office is, J yelled, "Roll down the window! Roll down the window!" So, I'm on the phone, driving, watching the GPS, and trying to operate the power window. (I only have two hands. I think moms should be granted an extra arm and hand each time we give birth.) That was interesting, but the spider was gone and I didn't run into anything.

While J was having his evaluation, I got to fill out paperwork. I filled out five different questionnaires. Several of which were the same as those I filled out for Brain Balance. (Just something to keep in mind when a doctor tells you that the Brain Balance centers don't do proper evaluations. I'm just sayin'.) It took me over an hour to fill all that out. Fun stuff.

We won't get a full report for a couple weeks, but Dr. Wells did talk to me for a few minutes before we left. She said J's vocabulary and language skills are off the charts and that he is exceptionally bright. Yes, thank you. We knew that already, but it never hurts to hear it from someone else.

I can't even remember the last time we ate at a fast food restaurant, but we were hungry, an hour from home, and I wanted to give him a little treat for putting up with the testing. He wanted to go to Chick-Fil-A, so I punched Chick-Fil-A into the GPS. Turns out we were right around the corner from one. "40 seconds" away, to be exact. That was pretty entertaining. We've never been 40 seconds away from anything before. Even at less than a minute, I would have expected it to read, "1 minute," not 40 seconds. I even took a picture and posted it on Facebook.



I was so focused on the whole GPS thing that I didn't remember why we haven't eaten at Chick-Fil-A in a while. They don't have anything that doesn't have batter. Batter has eggs. I didn't even think about it until we had already ordered. They were already making our order, and it's not as if it's a life-or-death thing, so I just let him eat the chicken strips. His dad had fixed him a salad the previous evening with bleu cheese dressing anyway, so it's not as if he didn't already have eggs in his system.

On a side note, I decided this morning to let him go back to eating eggs. It's been several months, and we've done really well, with only three or four infractions (and two of those were this week), but we haven't seen any changes. I know not all sensitivities manifest in physical symptoms, but I would rather he eat eggs and hashbrowns or homemade pancakes for breakfast than the crappy cereal his dad has started buying - pretty much because it's so hard to find something decent J can eat for breakfast (that he will eat) without eggs.

So we're driving down the interstate eating waffle fries when J screams again. His spider's twin was on my little storage console thing between my front seats. I grabbed a napkin and squished it. (Sorry, spider lovers, but I was driving 70 miles an hour with a phobic kid in the car. I had to take drastic action.) I put the napkin in my trash bag between the seats. Everything is all happy and greasy until a few minutes before we get off the interstate. "A spider just went into your console thingy!" Oh, for pete's sake. Either we have an infestation or we have a zombie spider.

When we got to our exit, I pulled into a gas station parking lot and pulled everything out of the console. Killed the spider. Again. Or whatever. Probably should have done the "save the spider" thing, but honestly, I was a little freaked out at that point. Threw the napkin and the squished spider into the gas station trash can. So the zombie spider is someone else's problem now.

I put everything back into the console and we went to pick up LB. He was happily playing with Play-Doh and hadn't cried at all. Glad he missed us. I told him to thank his little friend for sharing her toys. He did, and the first thing he said to J when he got in the car was, "R shared." LOL Then he said, "My seat smells like chicken nuggets." We had thrown the trash away when we stopped, and I had the windows down, but I guess you can't slip anything by that one. Fortunately he didn't pursue it.

We then went to the park for our homeschool group's regular park day. Where most of us sat around talking about our spectrum children. I did get to hear two moms who are new to the group tell me that their sons, who had come to park day for the first time last week, had specifically mentioned at home that J was nice and had made them feel welcome. Hello, warm fuzzies. :-) He's pretty good with some social stuff. He just doesn't understand when someone is through listening or ready to move on, and he just keeps on with his own thing.

Then we met another mom who isn't part of our group (her son is in regular public school), but has an autistic son. So we talked for a while, and I got some useful information and a new Facebook friend.

So, I was thinking that it really sucks that there are so many of us. And frankly, I'm not thrilled with being one of "us". But no one asked me before I was volunteered for this club. So we'll share information and stories and shoulders because none of us can get through it alone.

Monday, September 19, 2011

Book Giveaway - Seeing Ezra: A Mother's Story of Autism, Unconditional Love, and the Meaning of Normal

I run a weekly book giveaway drawing on my other blog. This week's book is Seeing Ezra by Kerry Cohen.  Hop over and enter. It's very easy. Just leave a comment. (On the other blog, please, not here.) It's a great book and I'd love for one of you to win it. Just go here to enter.

Tomorrow, I'll post about our adventures in IEP land, including a spider hunt.

Seeing Ezra: A Mother's Story of Autism, Unconditional Love, and the Meaning of Normal

Thursday, September 8, 2011

Seeing Ezra by Kerry Cohen - Book Review

I usually do my book reviews on my personal blog, but I was actually asked to review this book on this blog. If I didn't think it was worth sharing with you, I wouldn't, but I do, so I am.

Amazon summary
Seeing Ezra is the soulful, beautifully written memoir of a mother’s fierce love for her autistic son, and a poignant examination of what it means to be “normal.” When Kerry Cohen’s son Ezra turns one, a babysitter suggests he may be “different,” setting her family on a path in which autism dominates their world. As he becomes a toddler and they navigate the often rigid and prescriptive world of therapy, Cohen is unsettled by the evaluations they undergo: At home, Ezra is playfully expressive, sharing profound, touching moments of connection and intimacy with his mother and other family members, but in therapy he is pathologized, prodded to behave in ways that undermine his unique expression of autism.


It soon becomes clear that more is at stake than just Ezra’s well-being; Cohen and her marriage are suffering as well. Ezra’s differentness, and the strain of pursuing varied therapies, takes a toll on the family—Cohen’s husband grows depressed and she pursues an affair—all as she tries to help others recognize and embrace Ezra’s uniqueness rather than force him to behave outside his comfort level. It isn’t until they abandon the expected, prescriptive notions about love, marriage, and individuality that they are able to come back together as two parents who fiercely love their little boy.

Powerful and eye-opening, Seeing Ezra is an inspirational chronicle of a mother’s struggle to protect her son from a system that seeks to compartmentalize and “fix” him, and of her journey toward accepting and valuing him for who he is—just as he is.
Seeing Ezra: A Mother's Story of Autism, Unconditional Love, and the Meaning of Normal
My review
I'm learning that the more personal a book is to me, the harder it is to review it. Seems like it should make it easier, but it doesn't. I don't totally agree with Ms. Cohen on some things, but that doesn't make the book any less impactful. I finished this book four days ago, but I couldn't find the words to write a review.

At first, I found it hard to relate to her because when she first started seeking help for her son, she didn't want anyone to think badly of him, so she didn't tell the doctors and therapists everything they needed to know to properly evaluate him. I'm a straight-up kind of gal, and I figure that even if the "experts" don't have all the answers, they can't help us if they don't know what's going on. Eventually, though, she moved past that. She came to a point at which she could tell the doctors everything, but she didn't hesitate to get up and walk out if their needs weren't being met. That's my kind of mom.

The question Ms. Cohen keeps repeating in her book is one that I think every parent of a special-needs child faces. It doesn't matter what your opinion is on alternative therapies, or curing autism. The most important thing is: Where is the line between helping him with the areas where the world feels hard for him and negating who he is?

There is some foul language in this book, but don't let that stop you. It always helps me to read about how other moms are dealing with challenges. Not only do I usually learn something, it helps me to not feel so alone. (No matter how much support we have, I think sometimes we all feel like no one else knows what it's like.)

About this book
Title: Seeing Ezra: A Mother's Story of Autism, Unconditional Love, and the Meaning of Normal
Author: Kerry Cohen
Publisher: Seal Press
Release date: August 30, 2011
Pages: 288
Where I got this book: I received this book for free from the publisher in exchange for an honest review.

Tuesday, September 6, 2011

First IEP Meeting Over

I made it through the first meeting this morning. Because we're enrolled in a statewide virtual school, the meeting was a combination phone/online conference. I met with the school's Special Ed Rep and the school psychologist, who were both very open and helpful. J has an appointment with the psychologist (in person, of course) on the 19th for yet another evaluation. This will be similar to, if not the same evaluation the neurologist recommended for him. In the meantime, I need to get him to his pediatrician for a hearing and vision screening.

Thursday, September 1, 2011

What About the Boy? by Stephen Gallup - Book Review

I write book reviews for my personal blog, and I recently received a wonderful book written by the father of autistic child. (Actually, he is no longer a "child", but during the time detailed in the book, he is.) I wanted to share it with you here. If you're reading this blog, there's a good chance you've already decided that there may be more solutions out there. This book is about a family who made extreme sacrifices to get their son the treatment he needed.

From the back cover
Nobody knew what hurt little Joseph. Perhaps some toxin had invaded his mother's body before his birth. Perhaps it was the difficult birth itself. Or maybe the origin of his disabilities was genetic. Whatever the cause, something had gone terribly wrong — but no one was offering solutions or reasonable guidance.

He cried most of the time, and thrashed about as if in great pain. He wasn't learning how to crawl, talk, or interact normally. His parents sought medical help and were told at first not to worry so much. Later, the professionals recommended counseling to help the parents accept reality. Nothing could help their son, and the quality of their own lives was at risk.

Refusal to accept that advice launched an improbable journey that changed their lives forever.

What About the Boy? A Father's Pledge to His Disabled Son chronicles a family's rejection of hopelessness and their pursuit of a normal life.

What About the Boy?: A Father's Pledge to His Disabled Son

My review
I expected this book to make me cry. I did not expect it to make me mad. As I read about the Gallup's struggle to find answers for their son, I was so disgusted by the mainstream medical world's refusal to, at first, acknowledge anything was wrong, then later, to acknowledge that someone somewhere might know something they didn't.
 
This is a book about being your child's advocate. It's about pushing past all the "experts" who are basically telling you, "We don't have the answers, so you're not allowed to have questions." It's about parents who were so desperate to help their son that they humbled themselves and asked for help from people they didn't even know. It is not about Super-Parents. Steve is very transparent about just how human they are.

One thing that Steve and I agree on is that every child should be allowed to reach his full potential. He mentions one father who told him that if he had to choose between his child being low-functioning but full of the understanding that she was loved completely, or a “normal” child who didn’t feel loved, he’d choose the low-functioning. Steve (and I) wondered why the two were mutually exclusive. We’re not talking about making a child feel like he is less of a person or that he is damaged goods. We’re just talking about making the effort to do what we can to help our children function at as high a level as they are capable of.

I found it interesting that back in 1989, the program that the Gallups used to help Joseph reach his full potential used some of the same methods I’ve seen in “alternative” programs in use today. Alternative programs that are working. As Steve says, “We’d seen enough to know that the answer for one kid may be unrelated to what works for another, that very seldom is any answer complete, and that there’s no escape from guesswork. The only feature the various success stories shared was a willingness of each family to reject experts who would not help.”
 
I did cry three times while reading the book. The first time was reading about all the amazing volunteers who had stepped up to help with Joseph's program, almost all of whom were complete strangers at the time. The second was when an Institutes staff member told the Gallups that the whole staff went out for ice cream to celebrate when they got the call telling them that Joseph was walking. At that meeting, the staff member also told them, "Joseph deserves to be told how great he is." (I'm quite sure Joseph was getting message loud and clear from his parents.) I also cried at the end of the book, but you'll have to read it to see why.

This is the story of an amazing family. Parents who were willing to make great sacrifices for their son, and a son who was strong enough to do what the “experts” said he couldn’t do. I won’t say it’s an easy read because there is some emotion involved, but it’s well-paced and well-written. I highly recommend this book to everyone, especially parents.

About this book
Title: What About the Boy?: A Father's Pledge to His Disabled Son
Author:
Stephen Gallup
Publisher: Lestrygonian Books
Release date: Sept 1, 2011
Pages: 376
Where I got the book: I got this book
for free from the author in exchange for a review
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