I'm hanging out over at ellenstumbo.com

Hello friends,

It has been a long time since I updated this blog. I mean to come back here, but keeping two blogs has been harder than I thought it would be. I have more writing commitments and deadlines, so I find myself with little time to update here.

But, I haven't been absent, I am still hanging out on Facebook and twitter!

As for blogging, I am writing over at ellenstumbo.com. I have to make a better plan to keep up on this blog, but on the meantime, I hope we can stay in touch.

To make things even easier, I wanted to extend the invitation so you get all my posts delivered directly to your inbox.

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When Kids With Special Needs Wander (Elope) {a guest post by Staci Conrad}

Last week I wrote about conducting a stakeout outside my daughter's school because I was terrified of her bolting during recces. If you didn't get to read that post, please do so, I did my best attempt at being funny in light of a real concern we have for our little eloper.

My friend Staci responded by sending me some links for me to look at in case some of those worked for us. I was so impressed with all the information she had, I asked her to write a blog post, and she did!

So let;s welcome Staci and the advice and resources she has for any parent that has a kid with special needs that wanders (or a typical kid that struggles with this too!)

***

Wandering…eloping…these words strike fear in the core of many special needs parents.  I have tried to find some stats to share with you, but it seems that no one collects this data!? Most sites just say that “TOO MANY” children with disabilities wander off each year and many of them aren’t found in time.

Why do kids wander?  Some get distracted and some just NEED to explore.  Many are impulsive and have no understanding of consequences.  That is the case for my precious wanderer.  

The International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) has added a code for wandering that was effective October 1, 2011.  It is designed to promote better data collection and understanding of wandering, and to prompt important discussions about safety among healthcare providers, caregivers, and the person with a disability to the fullest extent possible.  If your child is a wanderer, please talk to your provider and have this code added to your child’s official diagnoses. 

There are several safety devices available to help keep track of your loved one.  Even though you watch them like a hawk, they are so sneaky!  Everyone has to blink sometimes and that’s all it takes, especially at crowded events. 

Mine likes to take off at night time.  I have an alarm on her bedroom door and window.  I also have STOP signs on each door that leads outside.  I am going to add another lock to the back door, as she recently got out at 4AM.  There are lots of printable resources at: http://nationalautismassociation.org/docs/BigRedSafetyToolkit.pdf. 

For those interested in what technology has to offer, I have compiled the following list of resources that vary considerably in price.  Many of these are still not financially feasible for most special needs families. Although it might be possible to get state waivers or family support funding to help alleviate the cost.  (I could not reach our case worker to confirm or deny.)  These are only a sample of what is out there!  Be sure to look around to see what might fit your family the best.  

Adiant Solutions
Adiant Solutions is revolutionizing the GPS industry by providing solutions that transform lives. You are in control… you decide how to better manage "what matters most". Whether you are looking for tracking devices that locate a wanderer with dementia, a child with autism who is eloping, a low-level criminal, your fleet or cargo, or even a teen driver, we have the answer with our easy-to-use, customizable technology. Adiant's products ensure that people and property are where they belong…..and when. The devices are easy to use and can be managed from any computer or smart phone with Adiant's easy-to-use LocationNow Software.
www.adiant-solutions.com

Care Trak
The Original Law Enforcement Rescue Program that electronically tracks people with Alzheimer's who wander and special needs kids. Sheriffs, Police, Fire Departments, SAR Teams, etc. use Care Trak to quickly locate at risk individuals.
www.caretrak.com

EmFinders
The Emergency Locator Device "EmSeeQ" helps rapidly locate and recover your loved ones via the 9-1-1 cellular network.
www.emfinders.com

EZ100 Personal Emergency Notifier and GPS Tracker
The EZ-100 from EYEZ gives families of wandering special needs children added peace of mind and the confidence to engage in activities and adventures with the whole family.
www-eye-zon.com

LifePROTEKT
LifePROTEKT is dedicated to providing care givers, individuals and organizations with the most superior, innovative personal location based GPS technologies available while providing a network of support for those who care for special needs individuals. We want to give back to those communities who rely on our technology to assist them in safeguarding their loved ones.
www.lifeprotekt.com

LoJack SafetyNet
Personal locator bracelets for individuals with autism with a tendency to wander. After contacting authorities when your loved one goes missing, law enforcement and public safety officials use LoJack Search and Rescue Receivers to track the radio signal being emitted from the Personal Locator Bracelet on your loved one's wrist or ankle.
www.lojack.com/safetynet

Loved One Locator from Mobile Health Technologies LLC
Mobile Health Technologies provides the ultimate solution for Mobile Personal Safety - Anytime, Anywhere. ASD children at risk for bolting should not be without our products! Our service combines on-demand GPS location, automatic alerts when a user leaves a pre-defined "safe zone", and Automatic Fall Detection. Our devices also feature 2-way voice, and 24/7 monitoring by EMTs.
www.lovedonelocator.com

Please Find My Kid 
What do you do when a loved one suddenly disappears? If your loved one were using SecuraPal or LifeTrac, you could simply go to a secure web interface and find them on a map. With SecuraPal and LifeTrac you get peace of mind and your loved one gets to keep the independence they deserve and desire.
www.pleasefindmykid.com

Project Lifesaver International
Project Lifesaver International helps provide rapid response to save lives and reduce potential for serious injury for adults and children who wander due to Alzheimer’s, autism, Down syndrome, dementia and other related cognitive conditions. Project Lifesaver provides equipment, training, certification and support to law enforcement, public safety organizations and community groups throughout the country and nation.
www.projectlifesaver.org

I have just one final tip for special needs families with wanderers today.  Please let your neighbors know that you have a wanderer.  Just a couple of other families on your block that know to watch out for your child can be a huge help!  

***

Staci is a follower of Christ, single-momma to 2 amazing adopted girls with special needs, and foster mom to many. Staci blogs at Our Different Reality you can also follow her on twitter @stacianne

Transitioning to Kindergarten

It feels as if the baby years are officially behind for my rascal. My "baby" will be transitioning into Kindergarten, and already we are celebrating some of the transitions, while trying to hold on a little bit longer in other ways. Yet, can we really hold on?

Preschool years are now behind us. This last year, Nichole had the most incredible teachers. She was in an inclusive classroom, with a regular teacher and a special education teacher. Her special ed teacher was...fantastic! She believed in Nichole, she saw her potential, and she loved her. She went above and beyond and was able to look at things from my perspective - the parent's perspective.

I received a note from her teacher and her aide, both of them expressing what a treat it was to have Nichole. They believed in her potential and really loved her. We were blessed to have them be a part of Nichole's life.

Nichole  is now attending summer school getting ready for Kindergarten. She loves it, and she really likes her teacher, so I feel like we will have a successful year. it also helps that her teacher is my friend and she knows my concerns with Nichole so well.

Another new development is that Nichole was recently diagnosed with speech Apraxia. While I wish I had pushed for this sooner, now we have pretty "tried and true" resources to work on her speech. It might sound crazy, but already I feel she is doing better.

And a celebration, we are done with pull-ups! One day we ran out of pull-ups and I got her in underwear. She was fine all day. She is a rascal, she had us, she conned us for who knows how long. So we are done! It is so nice not to worry about this anymore, and perfect to have her potty trained before starting Kindergarten. She finished preschool with big girl undies, and so far, no accidents at school!

Going On a Field Trip!

Last week, I got to join Ellie and Nina on their school field trip. It was a hot day at a farm, but it was so much fun!

I took lots of pictures, and so you get a photo-dump post today!

Of course I asked the girls to pose, and Nina is a more willing participant, since she is not running around all over the place (which is actually something I appreciate about CP, Nina actually gets to hang around and I spend more time with her)

The plan was to use Nina's walker, but we soon realized that the terrain was not ideal for the walker. Not to mention the farm was pretty large and I wasn't sure how much she would last there. One of the owners approached us and asked if we would like to use one of their wagons. I was so thankful! So we got Nina in her fancy ride, then I folded up her walker and put it in there, along with my heavy backpack. I also had the other friends help me push it, Nina loved it! Sometimes, she would lay down and close her eyes with a smile of contentment in her face. Love this girl!

 Our first activity involved these bouncy horses. There were three different sizes and the kids loved them!

 They also had stilts. I tried them too!

 One of the favorite activities was feeding the goats. It took the kids a little getting used to having the goats lick their hands, but once they got used to it, they loved it!

And yes, Nina was balancing like a super star, even while feeding the goat!

Another favorite activity was petting the bunnies. Now, I will say that some kids were mean to the bunnies, picking them up and dropping them, or jumping on them (one little bunny had his back broken). These poor animals were terrified of the children and trying to get away from little hands, so I had to intervene and help Nina hold a bunny. You cannot see this here, but I had three other bunnies hiding between my legs trying to stay away from the children.

 And of course there was petting the kitty. Nina loved it, Ellie was scared of the kitty, afraid she would get scratched!

 There were a couple of rope swings, Ellie did amazing! We tried to get Nina to do it but that proved to be challenging.

Next to the ropes, there were these long tunnels, I love the pics, and there is a story to this photo, but I will share more about it at the end of the post, because it was a God moment, and we are framing the picture with a special saying for Nina.

 The girls with their teachers. We have AMAZING teachers. I love them to pieces. Both of them! Ellie's teacher challenges her and affirms her, as a mom I appreciate that so much! Kids need to hear praise form other adults in their life, not just their parents! Nina's teacher has been such an encouragement to ME. There have been times when I have had doubts about what Nina can or cannot do, she looks at me straight in the eye and says, "She can do this." and I just need to hear that from someone else! So often I am the one having to advocate for my daughter. She is one remarkable lady, how blessed we are that she is Nina's teacher!

 Nina got the "hamster wheel" turning!

 

 They had these sections of large pipes (same as the long tunnel material). Except these were set on some sort of rails. The kids then got in them and rolled them from one end of the rails to the next. I tried it, and fell a couple of times. it was fun!

 

 

 Fun tractor!

Wooden horses, and swing horses. No real ones but hey, the farm had horses kids could ride!

And proof that I was there with my girls!

This was not an ordinary field trip, God met me there in a meaningful way. The picture below was a gift from God.

I actually wrote about it for Not Alone. If you want to read that post, click here. I highly recommend you do! And it is a pretty short read ;)

Here is the significance of this photo:

God had been showing me His love for Nina throughout the day. His love, His delight, His pleasure. Then we got in the tunnels, and it was so bright I could hardly see. Then I snapped this picture and God reminded me once more that Nina is His beloved, and His light shines bright on her, illuminating her, reminding me, and showing her, how much He loves her. it was a Holy moment, right there at the farm.

 And this might just be one of my favorite pictures of all times, because somehow God allowed me to capture a Holy moment.

So to get the full story, do check the post for Not Alone in the link above.

Our First Dance Recital

I have so many pictures to share and all sorts of catching up to do. I will begin with most recent events and work my way back, so bear with me.

To start, Ellie had her first ballet recital last Friday. She did amazing! I know I am her mom, and I am most likely biased, but I think she stood out in her dance. She was poised, graceful, and she flowed with the music. This girl has the gift of dance!

I was a dancer since I was little. I danced ballet through the Royal Academy of dance, and danced tap, jazz (modern theater), and national dances through the Imperial Society of Teachers of Dance. My Junior year in high school after one of my examinations, the examiner offered me a possible slot in one of their companies, she said if I kept it up, she would help me get to England and continue my dancing with them. Then we moved to the US and there was no ISTD studio in our area.

To say the least, dancing has been a part of my life for a long time. I teach Zumba (which is close enough for now) but I hope to be involved in dance again.

I did not realize how invested I was in dance until Ellie and Nichole began dancing this year. As we got ready for recital, I understood the "parents living through their kids." I could get really caught up in this, so I have to watch out my attitude (because I had a bad attitude most of the year, expecting the same quality and standard I grew up with) and I don't want to take the enjoyment of dance away from Ellie.

Ellie was a shining star (I am her mother, what can I say!).

My little ballerina!

The studio sent very detailed instructions on how to do makeup. Including what eye shadow color to use, and making a V on the eye corners. Ellie hated the makeup. We did makeup for rehearsal and there were minor tears involved not wanting to do eye liner. This was enough for her to say she did not want to be in dance if she had to do makeup like this. Imagine my surprise when we got to rehersal to find out nobody was making sure that makeup was done properly, and there were several girls that did not follow the "guidelines." I promised her we would go lighter on recital day.

The day of the performance with my little ballerina!

We got Ellie flowers and she posed for us after her fabulous performance!

Proud mama and daddy!

I already promised Ellie we won't bother with eye liner next year, I think she might stick with dance then!

Cerebral Palsy, Rhizotomy, and Gait Lab Study

A Gait Lab Study is done to determine the way someone walks (their gait). People with cerebral palsy have difficulty walking, and looking closely at how they walk provides information about how their body works, and what muscle groups are affected, shortened, etc.

My daughter, Nina, has spastic diplegia. Before her rhizotomy (SDR: selective dorzal rhizotomy) her cerebral palsy was quite involved. They chart kids in a 1-4 scale. One being mild, and four being most involved. My daughter was at a four before this surgery.

Before her rhizotomy, Nina had a gait lab analysis. This last Monday, she had another gait lab done to determine her progress two years following her surgery, and determine the next steps.

The progress she has made in two years is pretty amazing! Here is a before and after video.

These Girls Got Wheels!

One of the great and exciting rites of childhood is learning how to ride a bike.

I lived in a fenced-in neighborhood in Mexico City. Although we did not have freedom to wander anywhere we wanted, the neighborhood kids and I owned the safe streets of our small community. We had hills, empty lots where we built forts, and trees to climb. Oh the many days spent on my bike riding with my friends, the wind on my face, sun on my back, and the promise of fresh lemonade waiting for us when we needed a break.

The thing is, riding a bike is not the same for kids with special needs.

Last summer, Nina got to borrow an adaptive bike from the school so that we could work with her at home. Nina had an IEP last Tuesday, and Andy asked if we could borrow it again this summer. For many kids with cerebral palsy, things like riding a bike can be challenging because of coordination and strength.

But then Friday came along, and Nina decided, forget the adaptive bike, I want to feel that wind on my face the same way all typical kids do, I am not missing out on that!

So she got on the little bike with training wheels...and she took off!

This girl is ready to prove that she is full of potential. Amazing how chasing her as she rides her bike reminds me of where she would be at if we had not adopted her. Yet here she is, feeling the wind on her face, flying down the street on her bike!

And you know what? I think someday those training wheels will come off.

Now here is the deal, Ellie (my oldest) witnessed Nina riding her bike and thought, I am older than my sister, maybe it is about time I lose the training wheels.

So on Saturday she asked Andy to take the training wheels off and asked, "Do you think I can learn how to ride my bike today?" And he said, "Well, maybe it will take a little while, but we can start working on it." But she said, "No, I want to learn to-day!"

She has heard us say plenty of times, "You can do anything you set your mind to" and she believes it. She wanted to loose the training wheels on Saturday and learn how to ride her bike...so that is exactly what she did!

Today, both Andy and I have gone around the block with her a few times, and she already tried to ride "as fast as I can" which almost resulted in a wipe-out. Thankfully, she saved her balance and kept going.

I call this one memorable weekend!

Now to get the rascal to show an interest in riding a bike!

An Independent Walker, Cerebral Palsy Won't Stop This Girl!

Two years ago Nina had a Selective Dorzal Rhizotomy. It basically means that half of the nerve rootlings from her spinal chord were cut.

She has spactic diplegia cerebral palsy, which means that mainly her legs were affected...and they were really affected. The truth is, we had very little hope of her ever walking independently. In the picture bellow you can see how high she was on her toes, and that was her trying to get her heels down, mostly her weight was on her big toes. You can also see that even with her braces on, her heels did not touch the floor, she was still high on her toes.

But Nina is a fighter, a survivor, and she is walking independently. That is, most of the time, except for very morning at school as she walked down the hall to her classroom.

Well, this morning we realized her teacher forgot to drop off the walker in the office, where we usually pick it up. I told Nina to go ahead and begin walking while I got checked in so I could help her. it turns out, she did not need my help.

Yeah, today, I am claiming my daughter to be an independent walker! Watch her go!

When blogging blew me away

I began to blog because I am a writer, and writers write. But I also blogged because I wanted to connect with other parents that walked the same journey I walk.

Through this blog, I began to share about life with a baby with Down syndrome. After a while, I began to receive emails from other women who were struggling with a new or a prenatal diagnosis of Down syndrome. Somehow, it seemed, my words touched their heart and they needed someone to talk to. I prayed for each one of these women, and soon I recognized I was part of a greater story where I only had a small part to play. But however small, I considered it to be an honor and a “high calling” so I continued to write.

When our “special needs” family expanded by adopting a child with cerebral palsy, I began to write about adoption. Mainly, I was writing about the emotions of adoption, because I wanted to be honest and real about the process. Adoption was hard. I wish someone had reached out to me and affirmed that my emotions were normal.

I write because I want to offer hope, courage, and community to those reading my words.

I write because I don’t want the hurting, struggling, or broken to think that they are alone in this journey of life.

And I write honestly, because if I only tell you what makes me sound good, perfect, or like a worthy pastor’s wife, then I have cheated you in some way. If I tell you that adoption is hard, but I don’t tell you that it took me more than a year to feel any love for my child, I have alienated you if you too are an adopting parent struggling with love. If I tell you that I struggle with anxiety, but I don’t tell you that almost a year ago I had to ask for help, then I have made you feel lonely in your own struggles thinking nobody will understand or that you are “worse off” than the rest. If I tell you that being a parent is a joy, but I don’t tell you that at times I feel like a failure as a mother because of my media addiction, then I am not allowing a level of accountability or honesty to enter into my life, and maybe yours too.

Last week, I wrote about special needs parents feeling invisible. I wanted to affirm them that they are not alone, and that I see them. You can read that post HERE.

Wow.

That is where blogging blew me away.

In a week, that post has been shared more than 10,000 times on Facebook through my blog and through Not Alone.

And I want to say thank you! Thank you to all of you who shared that post.

Mainly, I am simply humbled that my words were able to encourage so many special needs parents. Because I do, I see you!

The typical sibling AKA the "normal" sister

April 10th is National Sibling day. In other words, a day set apart to celebrate siblings of kids (or adults) with special needs.

If you have been around here, you know I have 3 girls. My oldest daughter is my "normal" child. I use this term because I think this is what most people outside the special needs community use, but here is a little "educational moment" it is really more appropriate to use the term "typical." You know that little saying, "Normal is a setting on a washing machine" yeah, that applies for special needs too.

Because of the nature of this blog (and my writing) I really don't talk much about my oldest. And the thing is, she is pretty phenomenal.

Because of her sisters, she is one of the most accepting and understanding kids I know. I love her heart of compassion, and how well she "gets it" when it comes to other kids (not her sisters) having special needs.

I am proud of her. Okay, that might even be an understatement. But she really makes me proud, and in so many ways I look up to her.

So today, in honor of sibling week, I am sharing with you her newest passion: playing the piano. Ellie has been taking piano lessons for over a year. All of a sudden it just clicked and she plays every single day on her own, because it is fun. She works on her songs for her lessons, and then she learns her own songs, by ear.

Oh this girl is so talented! but she is also very shy! We have asked her several times if she would like to sing (she has a great voice too) but she does not want that type of attention. She might consider playing the piano, she said maybe for Mother's day. I think that would be really sweet.

So here it is, her first recital (and you all get to be the attendees).

From her piano lesson.

From her love for music, she figured it out by ear.

EDITED TO ADD: this post was inspired by my friend Shasta, who thought about making sibling's day sibling's week. CLICK HERE to visit her blog and the other blogs linked up. If you write a post about your typical kids, join us!

I think soon she will be running!

Nina is doing a phenomenal job with her walking. I cannot believe that it will be almost 2 years since she had a rhizotomy. Sometimes, I really do forget she has cerebral palsy because she is becoming more and more independent.

She is walking all the time, on her own, and loving it!

Here is a video of her walking. Now, her gait is far from perfect. Her right leg is almost completely turned in, making her knees touch every time she takes a step, and her right foot is completely facing to the left. She hips are rotated and she needs to swing one arm to balance that difference.

We are headed to Mayo clinic and discussing her next surgery coming up this summer. It will be pretty involved as we deal with her hip displagia, bone malformation, and short muscles that need to be released a little. Just thinking about it makes me cringe for my girl, but the difference it will make in her gait (the way she walks) her balance, and her ease of movement will be so great for her.

Nonetheless, here is my girl, and you better believe we are incredibly proud of her!

Recovery after surgery...

For the last 5 years of her life, Nichole is on a mission to surprise us and challenge any expectations even we - her parents - have of her. This surgery was no different.

First of all, the plan was for Nichole to get ear tubes, at least for one of her ears as there was fluid there. However, when they went in, her ears had no fluid, although the doctor did mention one of her ear drums looked peculiar. Not sure what that means, but I am sure we will talk about it later. In 3 weeks we go back for a check-up and a hearing test.

Recovery was hard. How do you help with pain when your child refuses to take oral medication? I think the chemistry of Tylenol did not feel good going down her throat. She spit most of it out, refused to take it, so I think she was not getting enough relief from her pain. We could get her to drink a little bit, and eat a little bit, but it was hard.

And this is where I discovered that I don't handle my kids in pain well at all. It was hard with Nina, but with Nichole, my feeling of helplessness was even greater. While Nichole cried refusing to take her meds, I was crying too,begging her to take them, yelling in desperation "Nichole, please, take you medicine sweetheart, you have to take it!", and of course making the sisters cry too.

So I got suppositories.

Oh how I love suppositories! Nichole did not mind them that much either. No more crying to get meds, it was so easy and fast she really didn't have a chance to fight it. I tried to avoid it, I mean, who wants to use suppositories? But after that she began perking up and this girl likes to eat noodles and eggs, and drink her juice! So that is what she had for about a week.

Same day we started the suppositories, she started asking for chicken and french fries. Yes, my kid is a McDonald's junkie, and for some reason this was exactly what she wanted to eat. She kept bringing me her coat and shoes and asking to go get them. She is not a fan of a soft diet, and the poor girl has sensory processing issues, so textures are a big thing. That is why we only ate noodles and eggs. Those are okay.

We considered sending her to school today, but she wanted to stay. Next week we are back to normal. praise God!

Oh, and since she is all better now, guess what treat I got her. Asi es! A Happy Meal! 

Update on Nichole's Surgery

This morning, we arrived at 6:15 am at Children's Hospital for Nichole's tonsillectomy, adenoidectomy, and possible ear tubes. It was an early morning, but Nichole was happy as we got out of the car. I kept thinking, she has no idea what is about to happen!

We talked about the surgery with Nichole. We do think she understood it to some extent, and she was mildly cooperative in the morning. That is, until they had her take her pajamas off and put on the hospital gown. I can't figure out how to paste video from my phone here, so check out this linkhttps://www.facebook.com/photo.php?v=10151797109752802 on my Facebook page. It was pretty cute, and you get a pretty good sense of Nichole's communication skills.

Nichole gets pretty worked up with doctors and getting her vitals checked. At first, we thought she would loose it, but she pulled it together.

Here she is, resigned to wear her scrubs and right before surgery.

She is a daddy's little girls, and was happy having daddy with her. Although she did not like daddy getting scrubs on either.

 

 

And here they go, ready for surgery and Nichole is waving good-bye. At this point, she really had no idea that when she saw me again, she would be in pain.

 

They called us to recovery, and Nichole was already sitting on the bed. Wobbly from anesthesia, a wonderful nurse helping her. She was whimpering, mainly when she saw she had an IV. She knew there was something different in her mouth, but when I asked if it hurt she said no, and pointed at the IV to come out.

 

 We hung out at the recovery room for a while. Nichole settled down and was watching Strawberry Shortcake, and later on Curious George. The beauty of technology! They told us that technology works better helping kids with pain and anxiety even compared to drugs. I will have to agree.

After a while, they took us to our room and Nichole nestled with daddy.

 And then when the nurse said she could put her Frog jammies back on, she was one happy girl!

We are waiting. The plan is for us to spend the night. It is a precaution that most hospitals take with kids who have Down syndrome or other special needs to make sure that they are okay going home with oxygen levels, or any complications that might arise.

When Nina had her surgery, due to her oxygen levels we ended up staying there for 2 nights.

How is Nichole doing? So much better than we expected! She is drinking, without us pushing it, she wants to. And eating? She ate an entire plate of noodles, and she was asking for more food as Andy and I were eating.

She is amazing!

The main thing right now, is handling her pain. Which so far we have kept on top of it.

What a trooper we have!

Thank you so much for all of you praying for my sweet girl. We appreciate those prayers more than you know!

Becoming Whole: A Sibling's Story

Editor's Note: This is a guest post from Caroline McGraw, featuring an excerpt from her book, Love's Subversive Stance: Ground Yourself and Grow in Relationship.

When I was a little girl, I don’t remember having a firm concept of God, specifically. Yet I do remember having a very clear idea of what heaven would be like. I believed that heaven would be just this: a place where I could talk freely with my brother Willie.

It would be a place without the limits of autism on his part or lack of knowledge on mine, a place where I could ask him a question and receive a complete answer. I remember wanting to ask him about the details of our life; I wanted to know if Cheerios were really his favorite cereal or if he ate them simply because that’s what Mom bought. I wanted then what I want now: a window into his mind and heart.

Yet maybe, just maybe, I can only see in part because to see fully would be too much beauty to bear.

 

For me, heeding this wisdom means that, even as I hope for heaven, I look for those sudden windows into my brother’s mind and heart now.

I remember a time one such ‘window’ opened: during the long-ago era when my brother was obsessed with Snow White and the Seven Dwarves. He had (still has) all seven stuffed dwarves, and he loved to line them up. He referred to himself as ‘Grumpy’ or ‘Happy’ depending on his mood. I realize now that the film was probably an excellent way for him to learn about identifying emotion, since each dwarf is typecast and consistent in facial expression throughout the story.

One day, my parents asked him, “Willie, if you’re Happy, who is Mommy?” For reasons inexplicable, Willie replied, “Mommy is Bashful!” Mommy is not bashful. However, Bashful is a thoughtful, kind dwarf, so perhaps these qualities were behind his choice.

My mom then asked, “And who is Daddy?” Willie said, “Daddy is Doc!” This choice seems a bit more logical. My father wears glasses and has a calm, direct way of expressing himself. He has a quirky sense of humor, and he’s a natural leader.

Finally, my mom asked, “And who is your sister Caroline?” With no hesitation, Willie said, “Caroline is Snow White!”

So there you have it. To my brother, I am a Disney princess. He may not be able to say things like, “Caroline, I look up to you,” or, “Caroline, I’m glad you’re my sister,” but he can cast me in a starring role in the movie of his mind.

I may not be able to see all I’d like to see of my brother’s mind and heart, but what I can see is astonishing. He’s creative, and hilarious, and generous with his casting. 

***

Caroline McGraw is a would-be childhood paleontologist who digs for treasure in people with disabilities, and empowers caregivers to do the same. Her free digital book, Your Creed of Care:  How to Dig for Treasure in People (Without Getting Buried Alive) is available at A Wish Come Clear.