Monthly Archives: July 2014

My Challenge: Eric

I consider myself very lucky today. I have read a lot about autism from the perspective of the parent, the teacher, the doctor, etc…but today I want to introduce you to Eric. A young man who recently graduated high school and entered the work force.

My Challenge: Autism

My name is Eric and my challenge is having autism. Sometimes I have a hard time coming up with the words to say what I am feeling. Sometimes I think people are acting a certain way for a certain reason and my mom and dad tell me that it is probably not for that reason.

I graduated from high school in May of 2013 and I did a lot of volunteer work. I finally got a paying job last month and now I work as a dishwasher three nights a week. I really like that I’m finally getting paid. I am looking forward to my checkbook balance going up. One day I would like to own my own car instead of driving one that my mom and dad own.

I like being able to drive myself and get around. I’ve been driving for two years now and I haven’t had an accident. I am a very good driver.

My favorite things to do are golf, bowling, watching movies, hanging out with my cat, working puzzles, building models and making things. I created this marionette puppet out of pipe cleaners.

I thought it was pretty cool and brought it to school to show off.

I need people to be willing to explain things to me different ways so I can understand, but then I am just as capable as any other teenager to do jobs. I like being useful at home and at work.

It is a challenge to have autism and sometimes I wish I didn’t have it but I am learning to live with it.

************

Wow. Eric. Just. Wow. Thank you for being so cool and honest about living with Autism. How it makes you, well, you but it also changes how the world perceives you. Here’s the thing, though. Almost every one of us knows some one with Autism. They are learning next to you in school but then they grow up. Just like you. They get jobs, they have a fulfilling life. A person with autism has just as much impact on the world as one who doesn’t, thank you Eric for showing that. And good luck on your new job!

To find more information about Autism, please visit The Organization for Autism Research.

What's your challenge is a series that was inspired by a program I created at Abby's school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at firebailey@gmail.com

Who Runs 4 You?

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I am now at number 1302 on my quest to find a buddy to run dedicate my runs. If you are looking for a pick-me up for you or your child please consider signing up! There is NEVER a cost to join. You can register at Who I Run 4

TBT–That Parenting Manual needs updating

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Welcome to my version of Throw-Back Thursday, blog style. I’m taking Thursdays to revisit some older posts. I hope you enjoy the trip back in time.

Originally posted 23-AUG-2013

You know how before you give birth some one gave you a What to Expect book? You also probably did a birth class. None of which prepares you for life with an actual child.

Last night Boo woke up at midnight and proceeded to throw up every 15 minutes for the next couple of hours. Then she only woke every 45 minutes to throw up. Eight hours and four loads of laundry husband comes home from his shift. As I lay Boo on the couch to go to work, she throws up one more time….all over me.

Second shower and a change of clothes and off I go to my paying job. You know when you get into the office you ask the question, how are you to your coworkers. Not that you actually care after being up all night, but just to be polite.

And then that one coworker, the one without children. The one who is unmarried and lives with the dog that is her life. You know the one that I mean. The one that has time to exercise, take long walks, drink her wine without interruption. The one who has the life you used to have before children. Let alone a sick child. She proceeds to tell you that she is ‘exhausted’ but ‘surviving’.

And all you want to say is survive this (with the one finger salute) and walk into your office. Instead you empathize and escape to your office as soon as it is polite. You walk into a call from your husband saying Boo has now spiked a temp. What should he do? To another call saying the contract is ready to be picked up and that a hundred emails that tell you other things need to be done before you can escape to take care of the most important part of your life.

But you need the paycheck. So you put your big girl panties on and go to work.

And think to yourself, I’d really like to meet the author of that book, because they have no freaking idea of what to expect.

They don’t go to Harvard wearing diapers

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A friend of mine is battling toilet training. She asked my advice and all I could offer her was good luck. There is nothing more difficult as a parent than toilet training a toddler. You can deal with sleepless nights, but eventually a child will sleep. They will either learn that they can cry themselves to sleep or they will learn if they cry long enough they can sleep with you. Either scenario, a child will learn to go to bed. You and/or your child become sleep trained.

You can teach your child to count by rote, learn their letters and dress themselves. But potty training? Exactly how do you explain to a child who has almost no language skills how to work their bladder system? They can barely feed themselves without issue. How exactly do you let them know what a full bladder feels like? To even describe the sensation, there are no words. It is not something you can model. You cannot play/act it out. You cannot say “watch mommy” because while they see you sitting on the toilet they cannot see the inner workings of how it happens.

It is easier to teach your child algebra than it is to teach them how to use a toilet.

When my oldest daughter was young she was in a Montessori daycare that only went to age 2.9. After that she would need to transition to another school. One that required all children, upon admittance, to be toilet trained. It still amuses me that the Montessori school philosophy of “let the child lead” includes everything but potty training.

About six months prior to “graduation” I began to panic. My daughter showed absolutely no interest in the “potty”. During Spring break I was determined; we would succeed by eliminating diapers and putting on her big girl panties. Here was my brilliant if misguided plan:

Put on panties

Wait for her to tell me she had to go the bathroom

Run like hell to the bathroom

Here is what happened:

Put on panties

Walk to the living room

She peed and said, “WHAT HAPPENED”

All over the hardwood floors, with a dog ready to mark his territory. As I am a slow learner, it took the rest of the day to realize this wasn’t going to work. I tried to reason with a two-year old. “Honey, you know that feeling you get right before you pee all over Mommy’s floor? That means you have to go to the bathroom”.

I tried, in vain, to explain how it works. I tried to make her pay attention to her body. I tried bribery. I gave her an M&M every time she was successful. I ate most of them.

After a few days of complete potty failure I was tired of doing laundry, cleaning the floor and keeping the dog at bay. I lit on what I think of is a brilliant plan. I went and purchased the pull-up. Realizing it was a diaper and she wouldn’t get the feeling of being wet, I put her underwear on UNDER the pull-up. Now when she messed, it was contained but she felt it. I thought this was the perfect solution. Surely now it would only take a few days for her to understand what it ‘felt’ like to need the bathroom. But I was mistaken. It took forever and she really didn’t mind being wet.

Finally a week before she was due to graduate daycare I realized that while no child graduates Harvard in a diaper, my kid might not make it into Montessori Pre-K. I did what any reasonable, mature mother would do.

I lied.

I walked her into her first day of pre-K, with a change of clothes “just in case”. I handed her off to the unsuspecting teacher, waved goodbye and on the way out of the parking lot I thought to myself:

I snuck her into pre-K I wonder if I can sneak her into Harvard?

My Challenge: Kara

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This is my friend, Kara. She is the best teacher in the whole wide world according to Abby and her friends. Kara is also the mom to Robbie, the best dressed almost 2 year old I have ever seen. Seriously, he is gorgeous. Except when facing a challenge all parents face.

My Challenge: Getting my child to sleep

My challenge is getting my toddler to sleep! My degrees in psychology and education couldn’t prepare me to transition my son out of his crib. Nightly, we would hear the loud THUMP and pterodactyl like scream as he escaped his crib, yet again. I know what you’re thinking, how much of a challenge can sleep training really be? Well, after weeks of sleep deprived nights for the whole family, we realized what a luxury sleep really is. Although this is a bump in the toddlerhood road, we won’t let this challenge define us. Extra cuddles, bedtime stories, and special attention will get us through this challenging time…Oh, and loads of coffee!

I really wish I had the magic answer for Kara and all other moms out there. Abby was that first child that just went to bed. Boo? Holy crap that child would scream for two hours, dose for 30 minutes and then start screaming again. We tried the Karp method, we read the Parenting advice, the cry it out method, the sleep with your child even though you are not supposed to method. Finally she just slept. Yet each time we go away, she returns to screaming herself to sleep for three nights.

I am sure Kara would appreciate any advice you can offer in the comments!

What's your challenge is a series that was inspired by a program I created at Abby's school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at firebailey@gmail.com

Happy Fourth of July!

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To all the Veteran’s who make our country free.

To all the women before who gave me my independence.

To all the therapists who work with Boo to make her strong, stubborn but independent.

I thank you.

Happy Fourth of July!

Throw Back Thursday–Independence

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Welcome to my version of Throw-Back Thursday, blog style. I’m taking Thursdays to revisit some older posts. Posts from before anyone read my blog. I hope you enjoy the trip back in time.

TBT Blog Style

(Originally posted on 03-JUL-2012)

Tomorrow, July 4^th, we celebrate our Nation’s Independence. The preparations got me thinking of how, as parents, we provide the tools for our children’s independence. Even though it breaks our hearts, a little, every moment we are preparing them for growth.

Allie is already an independent 8 year-old, going on 45. Preparing her to be independent means giving her the confidence to know she can do anything she sets her mind but nurturing the desire to include others on her journey.

Naturally, I wonder about Boo’s Independence Day. Will she ever have one? I know she is only 3! But I am a worrier and a planner. I want to know today what I am doing tomorrow. This is where Boo’s needs fit perfectly with my own. I need to plan and she needs a plan for every day!

One of the difficulties I face with Boo being undiagnosed is I do not know what her future holds. I do know that all children’s futures are uncertain. While I can imagine Allie being a wonderful dictator to a small Caribbean nation (hey, I want to retire to a beach and she loves ordering Boo around!), she may just run a household. And that’s okay. And it is okay that I will always worry that Allie is living a fulfilled life. That’s the definition of MOM, or it should be!

Boo is another worry. I just don’t know what her expectations should be. Should I expect her to be reaching for the stars or just concentrate on her teaching her to hold our hand? A year ago, Boo was using a pediatric walker. Today she is walking independently. This is where I have to stop and acknowledge her success. She may never reach total independence. But she will have moments of independence that I should remember to celebrate in small ways.

I have begun to set short-term goals, rather than long-term expectations.

Tomorrow, while I am attending the parades and fire department musters and watching the celebration of our Nation’s Independence Day, I will also remember to celebrate Boo’s accomplishments. In just a year she has become independent in:

· Walking

· Climbing on-top of my kitchen table

· Signing “I want” and following up with verbalizing “cracker” (or her version of the word)

· Getting herself into and out of her toddler bed

· Opening her bedroom door

· Drinking from an open cup

Happy Independence Day, Boo! I cannot wait to see what the next year brings.

Being okay doesn’t mean being satisfied

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A few months ago I wrote a post titled Paging Dr. House. One of the most fantastic benefits of blogging is when a reader might not comment but instead send you a lifeline. To protect her privacy, “T” wrote to me shortly after that post and encouraged me not to give up. Not to despair. But more than a pat on the shoulder “T” gave me the name of a doctor who might be willing to review Boo’s history. She may have found our Dr. House.

So last week we took a little 20 hour road trip hoping to find an answer to what is Boo.

We were worried, to be honest. David was nervous of walking into a Justina Pelletier issue. I was excited, we might have an answer. A little nervous that we were making a huge monetary investment in a hoax. Then I got excited again. Until the day we left and I realized that answer might be that Boo has only five years left of life. I wasn’t quite ready for that news. I sent a panicked text to Tia who replied: BREATHE.

Thankfully our fears never came true. Instead we were given a new hope: finding an answer. We might not, the doctor was very honest with us. However just looking at Boo she said she was confident that not only did Boo have a syndrome but that the answer was out there. Not five years from now, but as near as six months.

For the first time in too long a Doctor got it. A Doctor looked at Boo from her beautiful hair, to her teeth, to her fingers and toes. A Doctor didn’t talk with just me, but looked at Boo and spent time (almost 2 hours) with her. She noticed that Boo grinds her teeth, that her hands/feet are slightly webbed, that she is the best hugger and has bowed legs. She took out her medical books, laid them on the desk and said, “I’ve seen this characteristic before….” and “wait let me think about this…”

She was also honest and said we might not find the answer today but that it was important to never stop searching. She understood the why of it all. That to get Boo the best life possible we cannot be in the dark. We need to be aware of what she has so we give her the best chance at living her life that is this beautiful miracle.

This Doctor was clear: While Boo’s tremendous advances may have “ruled her out” for certain syndromes that might not be true. Without her therapies and schooling she would not be where she is today. Her advances might be in spite of a syndrome rather than because of one. She was also honest: She might not find the answer but that didn’t mean the answer isn’t out there somewhere.

She solidified for us that we have to continue to be warrior parents. That the hole in her heart may be “trivial” but it is important, that her temperature issues might be manageable but they are important, that Boo has dysmorphic features and they are important. In her terms, Boo has “structural issues” and these are due to a genetic syndrome and not by chance. That we need the answers because one day these “trivial” issues might prove to be catastrophic. That it is our job as parents to continue to be the thorn in the medical establishment’s side. She understood on an intimate level that this is our child, the most important child in the universe.

Boo will have to undergo more laboratory testing. The tests take about six months to result. The six months will be worth the wait, even if the answer is we don’t know. At least we found someone who won’t stop looking with us. We will know we have exhausted every option, for now.

Maybe, just maybe I will have to change the name of this blog from Undiagnosed but Okay to something more appropriate.

Won’t that be a cool problem to have?

Thank you, “T”. You know who you are. Thank you for reaching out and “stalking” until you found me on Facebook to offer us a lifeline. When I was in despair and worried you were willing to take time out of your life to offer me hope. I won’t forget it and hope to pay it forward someday.