"She Stood" - an important re-posting from Lexistential

I don't re-post full blog posts very often, but this story Lexi shares is important. Just last week Tripped Up Daddy and I had some unexpected changes in our own lives, but it's nowhere near the level this family is enduring. Please read, act as able, and share!

She stood by Lexi Magnusson

I watched her as she stood. She stood. The congregation stood behind her, around her. She stood, so I did.

She stood, so I can.

Never in my life have I known someone who has been through so much and was able to stand. As I watched her, a feeling tore through me that I can't explain. A pain, to be sure, but an awe and a wonder. An awe that gripped me in my bones and said to me, "Do you know how fortunate you are to have this woman in your life? Do you know her strength? If she can stand through this, you can stand." And then the feeling pushed further, "Tell her story and give her a chance to rest."

I have been friends with Kelli for over a decade now. Their family moved in across the street from us shortly after we had moved to Washington. Her two daughters babysat for me on occasion, our oldest boys were best friends and she was pregnant with her second son when I was pregnant with Peyton. She was there for me when I was pregnant with Abby. I'll never forget watching her drag baby supplies across the street for me, or how she was there for me when Abby was born, and was as enamored with her as everyone else.

I remember Kelli walking to my door that bright afternoon. "Guess what?" She said, "I got in a car accident yesterday!" "Oh my gosh! You're kidding me! Are you okay?" "Yes, they had to do some x-rays on my my knee...in order to do so, I had to take a pregnancy test. I'm pregnant. I find out the gender tomorrow!" She didn't look pregnant. She didn't think she was. She thought she was in early menopause.   Her baby was a girl, and we excitedly spoke of the friendship she and Abby would have after we got back from our stint on the east coast.  Her whole life now was turned upside down. The distance between her oldest daughter and her youngest would be 20 years.

Kamryn was born and for the first couple of weeks she was the same kind of infant as any of their other four kids. On Christmas eve of 2011, as Kelli was changing her diaper, she noticed Kamryn's feet were cold. After a long series of twists and turns (you can read it all on her blog, here), several months in the hospital, this tiny baby would eventually have to have a heart transplant.  If you've been reading my blog for the last couple of years, you may remember her story from way back when. You may have even donated to the fundraiser we did to help pay for all of the expenses they had at this time. If you remember, right before Kamryn was born, both Mike and Kelli had been laid off from their jobs.

Mike was able to get back to work, but Kelli had to stay home to care for Kamryn. It was more than a stretch on their finances, but through it all, Kelli stood.

In the years since, there have been graduations, a marriage and even a new grandbaby.  Kamryn's health is fragile as she is on a lot of medications to keep her body from rejecting her heart, and to keep it beating. I'm more than sure Kelli hasn't slept through the night. They've had countless doctors visits, procedures, med changes, physical therapist appointments, etc. Last fall, Kamryn once again was admitted to the hospital very, very sick.  She had the flu, and an infection they couldn't quite pin down. While there, Kamryn had a heart attack.  Once again, this brave little girl rebounded. As always, Kelli stood.

Through it all, Kelli has had the sweet support of her husband, Mike.  He's stood with her.

January came along with the news of her second to oldest daughter's engagement to a wonderful man.  Wedding planning began and the next Saturday they were excited to visit venues for the happy day.  Plans were put on hold. Mike died that morning of a heart attack.

There, in the packed church singing songs of faith as we remembered this wonderful man, Kelli stood. She stood and sung along. From the row across from hers, the strength I felt from her was almost palpable.  She stood and held her daughter as Kamryn pointed to a large picture of Mike and exclaimed, "That's my Daddy!"

The memorial was amazing because Mike was amazing. He was a great father, provider and support to Kelli. He was so loved by his church, his family and his community. He was a man of great faith and has raised five amazing kids.  I loved what one speaker said, "We know he's in a better place, and that's great, but I want him back here now."   We all do.

I've told you only a small portion of Kelli's story. I wish there was space for all of it. To adequately explain how amazing it is that she stands after years of sleepless nights, endless worry, and unfathomable loss. How amazing she is that not only does she stand, but she stands strong. She laughs, she works, she gives. She does and does for others.

I've told you her story, now I need your help in letting her rest.

They lost their soul provider. Kamryn's immune system still requires her to have constant care. There's a wedding this summer of a beautiful daughter who has just lost her dad. Their families and church has rallied hard to raise money. A Kickstarter has been made, but is not even quite to half the goal. I want to help get them to their goal of $25,000, which still isn't near what Mike would have earned this year. Will you help me?

The Kickstarter is here: http://www.gofundme.com/Helpmikesfamily.

Whether or not you can give, one of the biggest things you can do is SHARE. Share her story. Share it on your social networking pages, your blogs (feel free to copy and paste this in its entirety, I don't care). If you know people in the media, please share it with them. This family needs the help, and Kelli deserves the rest.

If nothing else, remember this woman, my hero. Know that if she can stand, so can you.

With all of my heart, thank you.

Lexistential

http://www.lexistential.com/2015/02/she-stood/

Check us out on The Mighty

So, so excited to be a featured post today on The Mighty. This website is all about creating a community focused on changing the perspective on disability. Proud to be part of that today!

http://themighty.com/…/why-i-wave-goodbye-to-my-daughters-…/

The unedited version of this post was my Mother's Day gift to other parents of special needs kids and is featured in Happy Dream & Wave Bye Bye.

Slippery Fish or It's the little things that aren't so little after all

If you've never experienced kids with delays or special needs this might not mean much to you. If you know the struggle of meeting even one milestone amidst delays, read on.

While going potty this morning, Angel triplet (yes, I did say GOING POTTY) starts singing this song and doing the motions. Then her sister Princess triplet joins in. Yay for ABA therapy and for daily progress!

https://www.youtube.com/watch?v=45VuWNq3cjs

Everyday Confetti - Book Review

This year round guide to celebrating holidays and special occasions offers ideas and recipes for both major and minor events. Throughout its 12 chapters the authors, Karen Ehman and Glynnis Whitwer, provide readers with a constant stream of ways to integrate the Christian faith into daily life with fun and excitement.

The goal is to create lasting memories that instill Christian values into your children throughout their lives. Appropriately then, many of the holidays are from the traditional church calendar and those that originate from a secular origin are given a Christian slant. This is a book written by Christians and mostly meant to be used by those of the same belief system. The authors are connected with Proverbs 31 Ministries which has the mission to help women deepen their relationship with Jesus Christ.

An autism mom's thoughts

When I was provided this book by the publisher, Revell a division of Baker Publishing Group, I was specifically asked to review it from the perspective of a mom or family raising kids with autism. So as I was reading, I simply asked myself the following questions: Would this integrate well in our household? Do I know of other autism families that could utilize this idea? would it be worth it for an autism family to purchase this book? Is this particular idea enough? Are there enough ideas that could easily be implemented in an autism family?

The answer to most of those questions is a resounding MAYBE. While there are plenty of times the authors expressed that readers should adapt ideas to fit their own families (and gave examples on how they did just that themselves), there wasn't even a single example of a family with special needs considerations utilizing any of the ideas. So, if you do have kiddos with special needs, autism, developmental delays or any other similar challenges, you should plan on having to adapt nearly every idea to fit into your family's world. Of course, that in and of itself is not unusual for an autism family (or a family with twins, triplets or more for that matter), but it is a situation that gets old when it's constant. Sometimes it's just nice to have something actually FIT in your world. This book will not alleviate any of that frustration, in fact, it may simply add more. It is however a creative spark and if that's all the authors intended then they succeeded.

What I liked

1. An encouragement to live with intentionality

The authors say in the Forward, "Life goes by too quickly and at the end of the year we can look back and wish the simple moments had been celebrated more. We wish there'd been a few more pauses. We wish we'd made more opportunities to look into the eyes of someone we love and say, with words and actions, 'You matter. I value you.' ..."It's the little touches that say, 'I remembered.' It's celebrating effort. Rejoicing together in success. Supporting each other when discouraged. These are the times that weave our hearts together."

Personally I need constant reminders to live with intention. Why? My world is filled with managing occupational, ABA, and speech therapy appointments (times 2), constant mad dashes to pull something out of Angel triplet's mouth, countless trips to the potty that still end less than successfully (times 2), transitioning into a parent of an adult at the same time as parenting kindergartners, and all the other variables and levels of chaos that only an autism family with triplets could enjoy every day. Reflection and Intention fall victim to Survival and Urgency every single damn day. While a reminder to live with intentionality doesn't mean I will do so to the level I really desire, it does help me re-focus my mind at least for a while.

2. Celebrating dinnertime and birthdays

For me the first way of being intentional in honoring your family is by protecting and encouraging dinner around the table together. The tradition of eating together as a group brings about more than a tendency for healthier eating habits, it also provides a consistent opportunity for communication and support. Dinnertime was really important when I was growing up too and while I believe strongly in the concept, the actuality of it in my current family is less consistent than I like.

In the first chapter, the authors suggest some ways to celebrate each family member (both in a birthday situation and also just because) and it also elevates the dinnertime tradition at the same time. One of these that I really liked was having/using a Family Honor Plate that a family member would get to use at special times throughout the year (you choose the times). Use it as positive reinforcement for desired behaviors, the passing of milestones, or simply to say "We love that you're part of our family." Make the plate somehow special, you could even decorate it at one of those paint your own pottery places.

Another idea mentioned that's similar to the honor plate is to celebrate each family member on their own name day. Some names actually correspond to feast days and you can use that day as an honor day for that family member. There is an American calendar for name days as well, but if your family member's name isn't on it, just make up their own special name day.

There is a whole chapter devoted to birthdays which can be a difficult day to celebrate for many kids with autism. Delays in social awareness, communication and relationship building are common for many kids with autism, so birthday parties and other celebrations can be quite overwhelming and complicated to plan. In the birthday chapter, I found some ideas (like creating a special place mat or tablecloth with pictures of the family member to honor) could be easily used to make a special day a little more special without causing too much chaos. That's a huge win for an autism family.

3. Christmas evaluation

The authors propose a wonderful idea to help reduce the stress and craziness of the Christmas holiday season. They suggest a family meeting before the season begins. To do what? Simplify and make sure what you're doing is right for your family. You can help assign tasks and make sure everything you're doing is truly meaningful for your family. I am definitely doing this idea this year, because with one child at college, I know our holidays are undergoing a whole new perspective.

"Gather everyone around the kitchen table to answer questions about your family celebration. Encourage everyone to be honest with their responses and promise no hurt feelings. The goal is to discover your unique way of celebrating the holidays and help alleviate some of the Yuletide 'Yikes!'"

4. Trove of ideas

As I read through Everyday Confetti, I marked up the book - things I liked and things I didn't, questions, comments, sometimes I even carried on a conversation with the authors (well, one-sided anyway) and basically made the book my own. I went back and counted up the ideas I found interesting and potentially fun enough to figure out how to do in my own family. After counting up the "I want to try this" notations, I came up with 34 ideas which doesn't include any of the many yummy-sounding recipes. The book offers anywhere from 5 to 10+ recipes per chapter (and there are 12 chapters). So even for an autism family I found 34 ideas that I'm interested in exploring plus I know I will want to try some of the recipes. That's not too bad for a 182-page book.

What I didn't like

1. Narrow perspective

If you are hoping this book will broaden your perspective or horizons around holidays, you need to know it probably won't. It may provide new ideas, but always from within the same cultural perspective. What is that perspective, you ask? Well, I couldn't see that anything was coming from anywhere besides a nearly complete white bread, Protestant Christian, middle class, American, suburban to rural perspective overall. Okay, so yes, the Tripped Up Castle is filled to the brim with white, Protestant Christians, but I don't want to raise my kids with the idea that this perspective is the only one that matters. 

I will credit the authors for at least mentioning other groups, but it seemed to be from the tone of we need to understand our other brothers and sisters and their culture so we should celebrate Black History Month, Native American Day, Cinco de Mayo. It came off as a sort of "I'm writing to people just like me about those other people, the ones not like me but who believe like I do so they're okay" type of tone. This narrow viewpoint may be partially due to the expected market/audience for the book - predominantly Evangelical or even Fundamentalist Christian or a Protestant Christian who have conservative political and economic leanings, but I believe the authors themselves would indicate they want to reach out to as many people as possible with their ideas, especially those who consider themselves Christian, conservative or not. That larger group includes a lot more diversity than what's represented in this book. Christians are African American, Native American, Asian, Latino and much more. Our skin color is all shades. Our heritages are from many different places not just Western Europe, so it really bothers me that there was such a lack of diversity presented. That's not the "confetti" I want to spread in my household.

2. Special needs unrepresented

This really goes hand in hand with my number 1 of what I didn't like in the book. Many families have unique situations, not just autism, but many other special circumstances which require them to plan and carry out activities very carefully in order to best serve the needs of their whole family. I never felt there was even a thought of "how will this actually fit in the family confronted with special needs every day?" Specifically, I think of autism and sensory integration issues that were completely ignored (because, of course, that's the world I live in). It's as if the writers never even had a thought that many families (potentially 1 in 61 these days according to the latest CDC numbers) may be struggling to celebrate any holiday at all in the midst of a sensory minefield. This misses a huge segment of people.

There are at least 20 ideas or more that are deal breakers for those with autism or sensory integration issues or both. It was never suggested anything be toned down. Nothing was presented that would tell readers the authors understand many people can't even approach any celebration without serious anxiety.

While there are plenty of recipes in the book, there's no mention of any that might be suitable for families struggling with food sensitivities or allergies. If you're an autism family attempting to follow a gluten free lifestyle, you will have to adapt these recipes on your own. Vegetarians and vegans likewise do not exist in this world the authors discuss.

3. No photos, not even one

I'm not sure who made the call on this one, authors or publisher, but I don't agree with it. Photos help people understand what you're presenting, especially when you're talking about decorations and holiday ideas. If they were trying to keep the purity of thought so that readers could imagine the idea more effectively in their own family, I guess I can see it somewhat. But what about all those recipes? Perfect opportunity for some yummy looking photos! (Please understand I HATE cookbooks without pictures. What's the point if I can't see how it's supposed to turn out?) Mostly, however, the lack of photos in this instance comes off to me as a cost-savings measure in publishing. Also, when the book is pitched as Pinteresty idea book, then the lack of photos seems silly.

4. Every day is a holiday or special occasion

While I do like the idea of living with more intentionality, I'm not sure I'm all on board with the idea of making every single day some kind of a special day. I recently finished reading A Thousand Days in Venice and while the author of that book is preparing for her upcoming wedding, one of her vendor's tells her that a little suffering (or a little misery) brings out the sweetness of life. Later when the author reflects on how perfect her wedding day and life is at that moment, she thinks about how grateful she is for that little bit of misery or suffering which also occurred because it truly did make her more aware of when life is sweet.

The authors state at the beginning, "Our desire with this book is to spark your creativity and provide you with ideas for planning and implementing wonderful holiday and holy day celebrations with your loved ones. But we don't want to stop there. We hope that with a little ingenuity and a slight shift in your spiritual perspective, you will learn to toss a little confetti into the everyday too - to be on the lookout for days and ways to make the ordinary extraordinary."

When I mentioned the idea of making every day more filled with confetti, Lotte (almost 18 now) said, "That's stupid, Mom. If you make every day special then you won't even recognize the specialness of the days you really designed to be special."

Too much special, too much of a good thing leads to a lack of gratitude in my eldest's eyes. I'm not sure I completely disagree. I do think an additional sense of embracing the magical and the special of even normal days is vitally important. Finding joy in a sunset, the beauty of a child's laugh, the amazingness of a child speaking words they've never spoken before... However, even King Midas learned that too much of his favorite thing was just plain greedy and actually led to more discontent. The key is balance I think.

Overall, I give the book an OK to Good rating. I think there are some good ideas, but as a Mom with two children with autism, it will require a lot of adapting to fit any of the ideas in our home. Honestly, I'd probably be more interested in a book that addresses celebrations and how to really enjoy them while minimizing the meltdowns, explosions, and emergency situations they can bring on. And, while the ideas are good, I'm not positive some good Pinterest research wouldn't provide you the same result complete with photos. A quick Google search led me to another book I'll be adding onto my reading list & hopefully reviewing as well.

Want to see more book reviews? Well, I love to read, so comment with suggestions and I'll add them to my list. I'm always reading about eight to ten books at a time. Have suggestions for great books for autism families? Please comment with those ideas too!

Little Keeper Sleeper - Review

What the Pinkalicious room is supposed to look like
when trundle is pulled out and 3 girls sleep there.
Notice the lack of "brown art" - it's by design.

I'll never forget the first time it happened. I don't even know what to call it. Diaper exploration at naptime? Brown art? Creative painting? (Actually I've since learned the official word that doctors, therapists, behaviorists, teachers, and others use is smearing).

The problem

Last summer while all 3 of the triplets were off school, I DESPERATELY needed them to take afternoon naps or at least play nicely in their bedroom without my intervention. Maybe even play long enough until they eventually fell asleep for an hour or more. I got used to the idea that "napping" really sounded a whole lot more like jumping on the beds. It didn't matter, I needed the time. What I ended up with was not "naptime,"  however, it was more like playtime at the zoo and left a decidedly barn-like smell and sight. The once pretty pink room, complete with sun bonnet quilts, pink drapes, and all manner of stuffed animals and books, had been streaked indiscriminately with brown - EVERYWHERE.

Angel triplet shows off her flute
to Tripped Up Daddy while wearing
 her cozy Little Keeper Sleeper.

I wish I could say that it only happened once or that it only happened with one triplet. Unfortunately, we had different variations of it with both Angel and Princess triplet. Princess tended to smear if she could get to her diaper area, while Angel just wanted to be naked and wasn't getting the idea that a potty chair should be used instead of bed, floor, chair, rug, etc. All attempts to outsmart them were failing, and we still had three weeks before school would start back up again. I thought I would lose my mind. I sought advice from everyone and learned it's not an unusual occurrence for even neurotypical toddlers, but can happen more often and for longer with kiddos who have autism or sensory integration issues.

The solution

Princess: We used a lightweight, footless sleeper put on backwards so the snaps were in back where she couldn't reach.  We were able to find a cute one at The Children's Place. Since she only needed at nap time, we could get away with just one sleeper. (However, after a mishap last night, Princess triplet will most likely be getting at least one Little Keeper Sleeper of her own.)

Angel: The Children's Place sleeper failed with her because she could stretch it out and shimmy out of it. In fact, she never unfastened the tabs on her diaper either, she simply shimmied that down as if it were a pull-up (no matter how tightly they were fastened). We finally broke down and bought two specialized sleepers for her, after a week, we purchased two more.

Back full-length zipper, 3 snaps,
and non-stretch neck

Little Keeper Sleeper

At $25 a pop for a simple sleeper, you might think we're a little free with our cash here in the Tripped Up Castle, but honestly I'd do it all over again - and I have, more than once. The Little Keeper Sleeper is not just a simple sleeper, it's a major stress reliever because of its patented design. The soft jersey knit cotton makes your kiddo comfy and the backside zipper is secure. Topping off the zipper are 3 ingenious snaps, guaranteed to keep even the most masterful child from unfastening it. For me, the best part is its non-stretch neck. With a mechanical genius like Angel triplet, she's learned to shimmy out of almost any clothes at all by simply stretching out the neck. (This is the same child who only recently was still able to squeeze her body through a kitty door and get into an area of the basement that's not child-proofed.)

Cute embroidered bear on left front

The Little Keeper Sleeper is perfect for special needs kiddos like mine who haven't mastered the judgment calls of potty training yet, but have the skills to make a mess. It's offered all the way up to a size 10 and in two different striped colors. They also offer three different styles - long-sleeve, footed; long-sleeve, footless; and short-sleeve, footless.

The feet wore out WAY TOO SOON!

Before you think this review will be nothing but glowing, I do, indeed, have some issues with the Little Keeper Sleeper. First, don't bother purchasing the footed style. We purchased two of that style and within 3 wearings the non-slip grip on the bottom had snagged and with a little more laundering the feet were an absolute mess. I never complained to the company about it because everything else was working great, and I knew how to easily put ankle ribbing on to make them footless sleepers. The other issue I have is while it is a lightweight cotton sleeper, it's still not the greatest option for 80 degree weather, and unfortunately, summertime does not mean an end to the behavior. Even if they offered a shortie version with tight shorts that ended just above the knee it would be helpful for the hot nights. Lastly, although the striped sleepers are cute (and certainly better than the original plain light gray color - can you say convict?), it would be nice to have other color/style choices as well.

White cuffs at ankle
work just fine,
after feet wore out.

For those of you who are saying, "why don't you just potty train your kids, then?" Well, it's not exactly that simple. This is part of a long process. We will be potty training soon, but the process will not be easy or work the same way as with neurotypical children (which, by the way, wasn't at all easy with Sunshine triplet anyway). We're going to need the support of our ABA therapists, OT therapists, speech therapists, and teachers as we work on these daily living activity goals like toilet training. In the meantime, we have to avoid poor judgment situations for our own sanity.

Overall the Little Keeper Sleeper gets a thumbs up from me and if you have a similar struggle I definitely recommend purchasing one or more (just not the footed style). Are there other homemade options out there? Sure, duct-tape the diaper, put diaper on backwards, cut feet off other footed sleepers and put them on backwards, put diaper on backwards then duct tape it, then put a swimsuit bottom over top of it all - there are plenty of ideas. I like this one because it's a streamlined solution made for the problem. And, we NEVER have an issue if Angel triplet is wearing her Little Keeper Sleeper - that's definitely worth it to me.



*Disclosure: Little Keeper Sleeper has not provided me with any money or product for this review. This review is simply my perspective after using a product that's helped make the Tripped Up Castle a little more happy and a lot less stressful.

Time for Tears

Today many in the autism and special needs community are honoring the memory of Mikaela Lynch

by publishing supportive blog posts for her family. Mikaela wandered from her home on May 12, Mother's Day, and her body was found on May 15 near a creek where she drowned. Mikaela had autism and the family, like many others in the autism community, struggled with autism elopement and various sensory concerns with their daughter.

My heart goes out to the Lynch family. I have two daughters with autism and I understand the constant fear of "what if they wander?" I understand the constant struggle to keep clothing on children who struggle to feel okay in their own skin, let alone skin that's covered with clothing. The Lynch family had Mikaela to love for nine short years, it was too short and they are grieving a horrible loss that no parent ever wants to face. Unfortunately, they've also had to face a lack of understanding from the media from day one in this horrible chain of events.

I am reminded constantly today of a song that I love, by Charlie Peacock - Now is the Time for Tears.

Now is the time for tears
Don't speak
Save your words
There's nothing you could say
To take this pain away
Don't try so hard
You can just simply be
Cry with me don't try to fix me friend
That's how you'll comfort me

Heavenly Father cover this child with mercy
You are my helper through this time of trial and pain
Silence the lips of the people with all of the answers
Gently show them now is the time
Now is the time
Now is the time for tears

I don't know the Lynch family. I don't know their religious beliefs or even if they have any. I do know that the last 8 days have been the worst days in their lives and the media hasn't helped. Today, I cry with them. Today, I support them in their love for their daughter and in this debilitating blow that is their worst nightmare come to life. I do think they'd appreciate the comfort of simple tears, simple support, simple hugs, simple love - and I hope they receive that all today and for many, many days to come.

I've also learned of two other children with autism who wandered from safety this week and were found later dead. Autism elopement is a real issue and as a parent of autistic children, I'm astounded by how little we talk about this issue in the community, in the press, even in the therapy office. I think I've been hoping my two little girls will simply "grow out of " their desire to wander, but I'm beginning to understand this type of constant vigilance may simply be my life.

I also learned that there are tools out there that may help parents like the Lynches and like myself with this important safety issue. If you worry about your special needs child wandering then you may want to sign up for a Big Red Safety Box to help you.  If you don't have a child with special needs, but would like to help others who struggle with the wandering or running issues, you can help by making a donation to the Big Red Safety Box grant program. Today is the day for our communities to come together and support families who struggle with these kinds of safety issues every single day.

No one should ever have to endure the type of Mother's Day the Lynches did this year. Mikaela Lynch was loved, of that I am sure. Mikaela Lynch's death was a tragedy, and I weep for her family. Now is indeed the time for tears.

Happy Dream and Wave Bye-Bye

As I walked out the door of Sunshine and Princess triplets' bedroom, Sunshine did her typical closing of the day statements.

Sunshine: "Good night, Mommy"
Me: "Good night"
Sunshine: "Happy Dream"
Me: "Happy Dream"

Sunshine repeats these closing statements again and again as you walk out the door, all the way until the door clicks shut for the night. We think it's partially because she has to have the last word in everything. It's a ritual she began a few months ago. And, every night I still hold my breath, waiting and hoping.

Princess triplet on her first day of school 2012-13

You see, once, out of the blue, as I was saying good night and only expecting a response back from Sunshine triplet, I heard a second "Happy Dream" from Princess triplet's bed. My mostly non-verbal child was wishing me a happy night just like her sister. Of course, I rushed back into the room, kissed Princess all over again and insisted that she too have a happy dream of her own.

It seems a small event, and yet, to any mother of a child with speech or milestone delays, a moment like that makes your throat catch and brings tears to your eyes. It's not just the moment in itself, it's the uncertainty of whether the moment will repeat itself at all or with any regularity. It's a moment you simply may not get again. It's a moment to treasure.

Angel triplet loves riding the bus but hates photo shoots

Every school day I stand by the bus as Princess and Angel triplets get buckled into their seats. I wait and I wave, every single day. When Grandma is there she watches me and says something like, "Do they see you?" or "I don't think they care about waving today" and I never answer those statements. I wave goodbye every day until the bus turns left and they can't see me waving.

Triplets wear "I'm the Litttle Sister" shirts to school.

Have my two autistic daughters ever waved goodbye back? No, not yet, but I still keep waving, because I'm mom and that's what moms do. They wave bye-bye to kids who stare back, sometimes without seeming recognition. Because one day, they will wave back, one day, bye-bye will be part of their social world. Or, because one day there will be another moment, like when Angel triplet looked directly into my eyes with recognition and pushed her tiny hand against the bus window as I waved. She kept her hand on the window until the bus turned left and I couldn't see her anymore. So, yes, I wave. I wave every day.

Today's post is my Mother's Day gift to all mothers of children with milestone delays or delayed development. We strive every day to teach our children, to presume competence, to hold our expectations high enough, to embrace our child's differences and yet carefully recognize the fact that it could take up to 2000 repetitions for our child with special needs to learn something that a typical child will likely learn by 200 repetitions. We balance expectations every day - not too low, not too high and realize that in addition to being mom, we get to play therapist to our very special children. Sometimes there are those days when we'd give almost anything to just be a parent, a simple, run-of-the-mill parent with "typical" expectations. The one whose kid says "You're not my best friend anymore, Mommy" on the day right before Mother's Day - the typical kid stuff - the stuff that makes you smile. Then without warning, we get a moment. A "Happy Dream" moment, a "Wave Bye-Bye" moment and all of a sudden nothing else matters but that moment. That moment when you absolutely, positively know how lucky you are to have this special child who shows you what LIFE and LOVE and JOY really are, because before that moment you know for sure you've only seen a shadow of those things.

Lotte - still too cool for school :-)

Happy Mother's Day to my fellow "special needs" Mamas. I hope you have a moment tomorrow with your very special child, but even if you don't, think back to a recent one and look forward to the one you will have in the future. You are LOVED and there's no doubt in my mind that God made you and your child especially just for each other - no other mother would do, no other child would do. You are perfectly suited for each other and tomorrow, please breathe that knowledge in all day long.

Happy Mother's Day All!