Nora's X-Rays

 

Here is a copy of the x-ray image of her arm from the day of the fall. The doctor said that the angle it has moved is between 10 and 12 percent.

Nora's Broken Arm

 I suppose this was the universe's way of telling me letting the kids play hookey from school for the day wasn't the best idea I've ever had. But it sounded like so much fun...

And the beginning of the day was fun. I planned an afternoon with my mom, who was home recovering from a chemo treatment. (As many of you know my mom is currently fighting breast cancer. I don't really write about it here in the blog because I feel that its her story to share, not mine). Anyhow, we went to the store for some delicious chocolate almond milk, got a picinic lunch to boot, then headed over to my mom's house on one of those beautiful fall days that looks like a postcard. Blue skies, the trees in every shade of red and yellow you can imagine, and the long grasses were brown and rustlng in the wind. Who'd want to go to school?

We visited with my mom for a bit, but the kids were getting antsy and my mom was looking tired, so we headed to the park. Since it was only 2pm, the other kids weren't home from school yet and we had the place to ourselves. Emily loves the slide there. I like the swings because my feet don't drag on the ground. Nora was excited to try a new set of monkey bars. We were all having a good time. I was on the swing, watching Nora when she jumped to reach the monkey bars and missed. She grabbed at the air as she fell, and she hit the ground hard.

My mom alarm went off. She didn't get up, and the cry got stuck in her throat. It only took me 2 or 3 seconds to reach her, but oh my god it felt like eons. I reached her little crumpled body on the mulchly ground, and for a second I wasn't even looking at Nora. I was looking at me, and I was 11 years old crumpled on the ground one block over from that very park, with a broken arm. I knew that arm was broken without even looking at her.

The walk home was just awful. No kidding. Sometimes, no matter what you do, you can't win. Since we hadn't been at the park all that long, Emily wasn't ready to go. When I said, "Nora's hurt! Time to go!" she started screaming. I had to carry her to mom's, and she kicked and screamed most of the way. Since I had one writhing toddler in my arms, there was no way I could carry Nora too. She had to walk next to me, and she was crying and said, "Mom!!! You're going too fast. Every time I step it HURTTTTSSSS....". That walk home took forever, and the park is only 4 doors down.

I laid Nora on the couch, and she didn't move. Her little wrist was so swollen. I drove like a maniac to the store to get her some pain killers, because past experience from my broken arm taught me that sports creme is not an effecive cure-all. Once I got the meds in her, I made arrangements to drop Emily at home with Ryan while I took Nora to the clinic. Another long drive...75 miles in fact between mom's and the docs. But we missed rush hour and made it safe.

Once at the clinic, Nora was a star patient. I couldn't have been prouder! She listened to all of the instructions when her x-rays were taken. She sat as calm as could be waiting for Dr. Patel, who was a very nice and very funny doctor. She was brave when they put on the temporary cast, and managed to eat every last bite of her Happy Meal. She even went to school the next day. Since then, she has been to the orthopedic doctor twice. They've moved her into a permanent cast, which is the brighest pink you can imagine. She will probably be in the cast for 3 months. So far she has adjusted to life with the cast. The only thing she misses are her long baths with Emily. Obviously the cast can't get wet, so she has to sit by herself with no bath toys. She also misses the park, and continues to ask me if we can go and play when the weather is nice. It's good to know that even after such a big fall, she's ready and willing to get right back up.

Waiting waiting waiting....(Part 2)

Another day has passed, still no news on Emily's appointment, although the nurse I spoke to said don't be surprised if our appointment is scheduled for next MARCH. Umm...okay. Well, I can still do some reading; after all, being informed can't hurt. So here's the second installment of what's on my mind concerning Emily.

A lot of the info I've come across has discussed that in addition to the problem of autism or allergies or ADHD, a lot of the kids presenting with these disorders also have stomach and digestion problems. Many moms, including me, think that the link between the two is more than coincidence.

I know my kids have tummy troubles. They are plugged up like, oh I don't know, something with a cork. Anyways, since neither one of them has ever had runny poop, I didn't think they had an issue. Well wasn't I wrong. After doing some reading I decided to talk to Nora about her potty habits, since she can talk, and her diapers were always similar to Emily's. (A good mom knows everything about her babies). Nora informed me that she didn't go potty everyday, and when she did it hurt. I started timing her, from the time she first felt like she needed to go to the time the cork popped, so to speak. Sometimes it would take her 24 hours to make one BM. Oh my goodness, that is just terrible.

To save you all from unnecessary details, take my word for it that Emily has the same problem. And so now for the solution. Coincidently, step one of project "Save Emily from the Short Bus" is also helpful for Nora, who I believe is lactose intolerant, like her dad.

STEP ONE: REMOVE DAIRY FROM THE HOUSE.

Read that again carefully: I removed dairy from the house. No more ice-cream, yogurt, or milk. No more mac and cheese or Goldfish. No more bread made with milk, no more fake meat products since many of them have caesin or whey, a milk derivative. No more eating like I know it.

It's been two full weeks since I've had the kids off the big D completely. They are adjusting, thankfully, better than I. The first few days were really rough. Both girls refused to drink the almond milk, and were literally hanging from my legs crying for ice-cream. Emily started to have these bizarre hyper-active fits, in which she'd kick her legs for an hour at a time. She couldn't be still to save her life. She is still having those fits, although they have lessened in frequency and duration.

As far as stomach pains go, the kids are doing great. Ryan said he hasn't felt better in years. Me? Well, I think I'm having the hardest time with this because dairy doesn't make me feel sick, it makes me feel full. And soy milk, well it doesn't sit so well with me. I've increased my Starbucks latte intake to make-up for the lack of milk at home. Its not what I planned to do at all. I wanted to stand by the kids and go dairy free with them, but I actually felt so hungry without dairy I couldn't sleep. After a week of being awoken by my growling stomach, I had to concede defeat and purchase a latte with milk. (Irony? Yes, that I'd need coffee to sleep does seem backwards).

So that is the happy medium we've achieved thus far. These changes are hard, but we are getting used to them. I imagine in another week or two going diary free will be as natural as being a vegetarian has become. Once we hit that point, we will initiate phase two, which is to remove gluten from our diet. I haven't quite figured that out yet, since the literature states you cannot be meat free and gluten free. So we've got some choices to make around here, but whatever we decide, it will be with Emily's best interest in heart.

For further reading on the links between developmental delays, autism, and diet, please check out the following sites:

Talk About Curing Autism: http://www.talkaboutcuringautism.org/index.php

Generation Rescue: http://www.generationrescue.org/home

Do Toxins Cause Autism?: http://www.nytimes.com/2010/02/25/opinion/25kristof.html?_r=1

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!"