Waiting waiting waiting for bad news (Part I)

Its been awhile since I've updated, but as always, I simply can't keep up with everything that is going on. Broken bones, doctor's offices that don't call back, homework, and family members in the hospital have kept me busy.

Where to begin? I suppose where I left off. In the last post, I noted that Emily's therapists hoped to have her evaluated by a developmental pediatrician. I contacted our new (wonderful) pediatrician at the beginning of the school year to see if he agreed, which he did. He gave me a referral to a doctor at Children's Memorial Hospital. I contacted them over the phone and must have passed the oral screening, since I received a big fat packet in the mail days later asking for Emily's medical history. I filled it out to the best of my ability, and as I did my heart began to break. On paper, Emily looks and sounds autistic.

How can a child, who is obviously lovable and likable and friendly as can be, be, well, autistic? I still can't believe it, and of course maybe its not true since I haven't been to the specialist yet. But it sure didn't help when Dr. Phillips said, "Well I just don't know what to say about her delays...she very well could have autism or Asperger's.". Part of me just can't believe it. Wow, did I cry, and cry, and cried some more. Then I got irritated. Why not me? Really, why my daughter? But then, I suppose, every mom and dad probably thinks the same thing when they get bad news from the doc.

So now I'm just waiting. And waiting. But I'm not the kind of person to sit around and twiddle my thumbs, so as I wait for the phone call that seems like it will never come, I've started reading. It's almost like being back in grad school, the gusto with which I've started reading about what are popularly called the "new childhood diseases" of autism, allergies, ADD, and ADHD. In typical Ivy fashion, I've tended to be drawn to more of the out of the box approaches to these issues. The tomes written by doctors and the experts haven't appealed to me nearly as much as the books written by the moms that have stood by their kids and pulled them back from the nightmare world of a child that can't function in our society. But I guess I'm getting ahead of myself here.

First, let me give you a breakdown of what the experts look for in autistic children. The following information came from http://www.everydayhealth.com/autism/recognizing-symptoms.aspx?ipc=B00448:

1. Difficulty communicating. This can present itself in a number of different ways. For instance, some autistic children are uncomfortable carrying on a conversation. Others don't use words and instead will rely on hand gestures. Here are some other communication warning signs of autism:

-Language milestones that are delayed or not met
-Frequent rhyming that doesn’t make sense
-Repetitive sounds, words, or phrases, possibly from a TV show or a book
-References to self in the incorrect person — calling himself "you" instead of "I”
-Not looking at things that are the topic of conversation or that others focus on; for instance, if you’re talking about a car, the child won't turn to look at the car.

2. Difficulty interacting socially. Children with autism often show unusual symptoms or act uncomfortable in social situations. This can include:

-Acting isolated or withdrawn
-Inability to express empathy for others
-Frequently playing alone instead of interacting with other people
-Difficulty making friends
-Avoiding eye contact
-Ignoring friendly advances, including smiling
-Problems playing games or just interacting with others during play

3. Sensitivity to sensory stimulation. Autistic children have unusual reactions to sensory stimulation — either no reaction at all or an over-sensitive reaction. Here are some autism symptoms relating to the senses:

-High tolerance for pain or, conversely, a very low threshold for pain
-Unusual sensitivity or very low sensitivity to taste, sights, sounds, smells, and touch
-Unusual responses to regular noises such as covering the ears or saying that the noise hurts
-No interest in physical contact
-Frequent physical contact with objects — uses taste, touch, and smell to better investigate objects

4. Behavioral problems. Children with autism may experience a wide variation of behavioral problems, including:

-Very aggressive behaviors
-Repetitive motions like rocking and twirling
-Interest in only a few activities or games played often
-Resistance to change or new activities
-Difficulty paying attention
-Either demonstrating withdrawn, quiet behavior or being extremely active
-Acting out with severe temper tantrums
-Inability to move beyond one activity or problem

I would add a number 5: An inability to wait in line, especially at birthday parties and in the grocery story!

It would actually be quicker for me to list the items above that do NOT apply to Em rather than the other way around. As far as the communication problems go, that list above describes her to a T. The second list of symptoms, which are associated with social interactions, don't apply as well to Emily simply because she has been in therapy for 9 months to increase her sociability. Unfortunately she still doesn't have any friends, but she does parallel play. As far as sensitivity goes, there may be a reason why I can't keep her in clothes, even when she's freezing. That would also explain her love of eating hot sauce and soap. And I'm blessed and fortunate that the behavior problems have lessened, again due to nine months of non-stop therapy. That didn't, however, stop her yesterday from beaning Nora square in the head with a shoe.

Well, I've had my cry. I've put off telling people long enough that bad news is probably around the corner. Now its time to act. Because sitting around feeling sorry for myself and my kid is not doing anybody any good. From what I've read, many moms and innovative doctors think this plague of childhood diseases is caused by the fact we are poisoning our bodies and poisoning our world with chemicals and other nasty stuff. (Mr. Karma plays a big role too, in my opinion). So now its time for me to act. Its time to save my kid from riding the short bus for the rest of her life. And I will do whatever it takes. Because she's no dummy, that Emily. If you believe my dad she is, in fact, the next Albert Einstein. She's also sweet, funny, and good-spirited. She says please and thank-you. She loves her family. And even if she gets stuck with the label autism now, you damn-better be sure I'm gonna make that label disappear.

Saying good-bye to Speech and OT

I will start by saying this post is INCREDIBLY behind the times in many respects. Emily finished speech and OT at the end of August. But, as I mentioned in several prior posts, leaving two of the most helpful people in Emily's life was really difficult. I felt like I was taking away Emily's life-boat, her means of learning and progressing and expressing herself! Since therapy has ended and school has started, I've seen that this isn't in fact the case. Emily can survive in the school system; indeed, she is thriving, but we both still miss Shelly and Sue terribly.

What follows are excerpts from the discharge reports detailing Emily's progress to date (August 2010) and what type of goals her future teachers should think about. If you go back and read the reports about Emily's behaviors from the beginning of the year, the progress she has made is just amazing. Go Miss Em!

Speech Discharge Report:

"Emily initiates communication frequently at this point, using many single words, frequent two-word combos, and some longer 3-4 word utterances (eg I like it puzzle). She still has difficulty processing what people say to her; she does not answer questions beyond "Do you want..?" and she has difficulty following directions. Her attention at times appears to be hyper-focused on an item or activity and its is difficult to redirect her attention or to wait and take turns. Pictures are still very important to help her understand schedules and routines.

She seeks sensory input, has a high need for activity, has a need for order, and is highly distracted. She has difficulty regulating her emotions and needs her blanket and cup to help calm herself.

Goals include (1) Producing a sentence with a person's name + verb or noun + verb (2) Follow novel commands (eg put the cup on your head) (3) ID objects by function."

OT Discharge Report:

"Emily made great gains in OT in the last 5 months. Initally she demonstrated difficulty regulating herself in a large open space; however, she is now able to particpate in activites in large spaces without fleeting from activity to activity. Emily also demonstrated an improved ability to initiate play schemes, tolerate mixed toy themes, and request her blanket or drink when overwhelmed.

Emily is an adorable child who has demonstrated improved self-regulation and play since beginning OT. She is a child who benefits from visual supports with schedules and novel situations; however, once she gains an understanding of the situation the supports can be removed. Emily benefits from the cue "listen" to get her auditory attention to a situation or task as her visual system is presently stornger than her language processing system. Emily regulates herself with a blanket and a drink and will request or seek out those items when stressed.

A medical diagnostic evaluation is recommended to assist Emily and her family to determine any medical reason for Emily's speech/language delay and difference in self-regulation."

Despite the fact that Emily is behind her peers in terms of language and expressive play, I am so proud of the gains she has made. In the next month I will be attending parent-teacher conferences, and should be able to report on her progress with the new therapists. We are also waiting to find out if Emily will be seen by a developmental pediatrician (something easier said than done) to determine what other medical factors are involved in her developmental delays. I've been doing a lot of reading on the role of diet and development, and will have more on that topic in the coming weeks.

Random Silly Pics

 

Lately Nora has been working on a portfolio of self-portraits...this is one of my favorites! I laugh every time I download the pics off the camera, because I never know what I'm gonna find.

Kids Say the Darnest Things

Welcome to what may or may not be a regular feature of the blog. It's continued sucess will depend on Nora's burgeoning sense of humor.

As you all know, I'm a teacher. Sometimes I talk about work and my students at the dinner table. I recently had a guy that missed the first exam, and I said to Ryan, "I just don't believe I should give him a make-up, not for a party! I know that's mean, but come on..."

Without missing a beat, Nora nodded her head in agreement. "Yea, that's crazy! What kind of boy needs make-up anyways? Boys don't wear make-up!"