Showing posts with label asd. Show all posts
Showing posts with label asd. Show all posts

Thursday, December 10, 2015

ABA Therapy in the home

We've just started ABA therapy up again after almost a year break. It's been super helpful already, as we can see forward motion occurring already for both of our darlings with autism. We've utilized this therapy in our home before and also in a clinical setting. 

Once again I feel our girls are doing better with it in the home rather than in the clinical setting. And here's one big reason why, triplets playing together in facilitated activities. Here they are with a sensory bin filled with rice - and no pica concerns either! Triplets = Built in social interaction peer group therapy! Thanks Sunshine triplet for being so interested in playing with your sisters!



Thursday, November 5, 2015

You know you're a special needs mom...

Because independence here opens
up the world in so many, many ways!
when the following email from your autistic daughter's first grade teacher makes you go into a full-fledged happy tears moment for 5 full minutes.

I wanted to tell you of something that was pretty exciting today.  Out on the playground Princess was tugging on Mrs. F., so she prompted  "I want.....".  It took about 5 prompts, but then Princess said "I want potty".  She brought her in, and Princess independently went to the restroom.  It was great to see her recognizing her need for the bathroom, and advocating for herself!

Imagining my little girl in a situation where she's actually verbalizing her needs and advocating for herself - this, this is what we work so hard for. This is a moment, I've been waiting for literally years to see or hear about. I can't tell you how proud of that little girl I am right now.

Wednesday, July 29, 2015

Dining in public... a story of compassion

They called out to her,
practically by name, I'm sure.
So with all the crazy kids in restaurants and the public's frustration with their antics, I thought I'd share this. On Monday my 6-1/2 year old (who has autism, by the way, if this is the first time you've ever seen my blog), got tired of waiting for food at the sub shop, although I was paying for it just 3 feet away. Instead, the chips at the next table called out to her.

I saw her leave the table and shouted NO! but before I could stop her a grubby little hand reached into a stranger's Doritos bag and grabbed out five chips at a time. (It was totally like the movies, like it was being shot in slow motion or something. NOOOOOO! And you turn and try to stop it, only to be too late).

Totally embarrassed, I offered to buy the two ladies another bag of chips but they refused to hear of it. (They saw I had triplets, but I never mentioned there was autism in the mix at all).There was no judgment, there was simply compassion.  And for that they were thanked at least three times by me. 

It is my hope that everyone who has small children or children with special needs and dares to go out to a restaurant, would be greeted by customers, strangers, as compassionate as these. Thank you kind strangers, you really sort of made my day. And I'm positive you made Angel triplet's day because Mommy doesn't even let her eat those chips normally.

Friday, December 12, 2014

Our #AutismChampions!

The little girls are getting some attention on Twitter today :-) That's great because they're all Champions! It's part of a trend started by Autism Speaks to show our wonderful kiddos and all that they do and how amazing they are.




If you are against Autism Speaks for whatever reason and therefore think I'm horrible for participating in this PR/Awareness endeavor, please know I see many sides of the issues and would refer you to this well written post. Perhaps there's room for all of us and all of our shades of disagreement/agreement.




Monday, October 13, 2014

Norwex to the rescue!

Imagine parenting a child who is drawn like a magnet to the most dangerous things in your home. Drawn to put magnets, batteries, razor blades, broken glass, and far more into her mouth to explore them. Drawn to eat non-food items or at least chew them to the point that she might as well have eaten them. Drawn to the idea of sucking on any spray bottle, especially window cleaner, bathroom cleaner, and hair detangler. A little girl who is also smart enough to outsmart (or even out climb) any childproofing device or strategy employed. Child lock is working today? Wait a few days or a week, she'll figure it out and get to what she wants leaving your child lock in the dust.
This used to be a good option...

If you've followed this blog at all, then you know this is the world of The Tripped Up Family with one of our 6-year-old triplets - Angel Triplet who has autism. No amount of teaching has resolved this situation because for some reason her little body craves these sensory experiences and her autism keeps her from understanding the immense danger she puts herself in.

It's not an unusual occurrance for kids with autism (or for those with sensory integration or processing issues) to seek these types of sensory experiences and struggle with pica-like behaviors. The hard part is that because the disorders are so varied in their outworking for each person, the solutions for typical issues are just as varied as each person struggling with the issue. Once again the old adage of "if you've met a person with autism than you've met one person with autism" rings true. While we have tried many different solutions for Angel triplet's mouthing obsession, we have never had anything work beyond the first month or two of novelty (at the longest). Once she gets bored with a new solution, there's no convincing her to use that coping mechanism and she's back to the typical mouthing patterns.
How does this NOT
look like candy?

Nearly two months ago, Angel triplet discovered how to break into a cleaning products cupboard and decided to place the dishwasher pouches into her mouth. After all, they sure look like they could be candy, right?

That was my last straw. Our cleaning supplies had to change. I can't successfully figure out how to keep them under a child-lock mechanism that my daughter can't outsmart. Instead of hiding the materials and thus making the materials even more interesting (because what kid doesn't always want exactly what you say they can't have?), I decided the cleaning solutions have to be safe even if she does ingest them.

And that's when Norwex came to the rescue. I had heard about Norwex and its amazing cloths before. I had even attended a party, but I never actually used a cloth myself. The whole key was that I could clean without a cleaner - just with water and a microfiber cloth embedded with silver. This cloth and water would clean up everything and make my home really clean without bleach or other harsh chemicals. I decided to try it myself finally. I began with an Enviro cloth and a Window cloth. I was amazed at the cleaning power, but even better was the idea of removing dangerous items from all of my girls' hands and mouths.

It wasn't too long before I realized I could earn free cleaning items and help others do the same by becoming a consultant myself. I love the flexibility it offers.

Since I'm still a fairly new consultant, I'm doing a Fall Open House with Norwex this weekend and invite all local area folks to stop by. There will be free food, interesting demonstrations, and plenty of fun. Let me show you the magic of cleaning with only water and let you in on how you can get you some free product as well! Just email me for all the details.

Not from the local area? Don't worry, we can connect and do a home party via Skype or Facebook. I will work with you and make sure you get as much free product as possible. Contact me now to book a party.

Norwex offers the best microfiber cloth available
and the company makes it so easy to earn free product. Don't miss your chance to remove harsh chemicals from your home and clean better than you thought possible.

Don't worry, this blog will not turn into a Norwex blog. It remains a parenting blog that offers a special focus on autism, special needs, mulitples, and triplets, However, Norwex is making a huge impact in our home because of the autism complexities and Norwex's simple cleaning methods. Please don't be offended if I periodically share that with you, because honestly, if it's making a difference in our world in a positive way, it just might do the same for someone else.

Monday, September 8, 2014

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!

Friday, August 22, 2014

Autism milestones that make a daddy smile

Angel triplet hops into our bed this morning. Tripped Up Daddy reaches over and gently pinches her nose.
Daddy: "beep, beep"
Angel triplet: "Nose!" <laughter>


(We promised "Daddy rants" a long time ago. This is one, stolen from his own Facebook status. It was just too good not to share.)

Wednesday, August 13, 2014

Continuing the "Our Autism" conversation

Huffington Post Parents and Autism Speaks just published a post by Jessica Watson, of Four Plus an Angel, and it's wonderful! I've posted links to it via my personal and blog Facebook pages, but thought I'd bring it up here on the blog specifically as well. Jessica says she wants to encourage people to share what their autism experience is and I think it's a marvelous idea.

I'm including an excerpt of the article, a link to it in full, and my own response below. I'd really like to see more conversations started at any of these sites about what autism looks like for all of us.
From Jessica:
Since the beginning of my life as an autism mom, I have been surrounded by versions of what people think autism is. Well-meaning onlookers have mentioned that my daughter doesn't count 5,000 items in 30 seconds like Rain Man, or memorize the name of every U.S. president like that one other person with autism they know. In the early days of her diagnosis, some questioned it so much that I questioned it myself, even though we were given the label by a nationally known autism expert who just happened to be a short car ride away.
But here is the thing: Our autism is not their autism, and it's not your autism either. There is a saying out there that autism parents like to use because it is so very true:
If you've met one person with autism, you've met one person with autism.
In an effort to help other autism parents feel more comfortable embracing how their children's autism is very similar and very different from others', I wanted to share "our autism" with you and encourage other families to do the same. I hope opening up the conversation about what it's really like helps others to stop judging from the outside looking in.
This is our autism:
Our autism is nonstop episodes of the Food Network and knowing every bus route within five miles.
It's visiting restaurants because Guy Fieri has been there and praying no one bumps into her plate.
Please enjoy the rest of Jessica's post here.

Here's a small glimpse of what our autism looks like at The Tripped Up Life castle:

Our autism is making sure all plants in the backyard are non-toxic because you can be sure she'll be eating every one of them at some point. It's trying desperately to stay in front of the hyperactivity and mischief that results. It's trying to draw out another girl from her quiet spaces. It's offering plenty of places for jumping and running and swinging. It's being forever flexible and yet very, very planned. 

It's watching the mystery of having triplets - 2 with autism and 1 without - and also realizing that their triplet experience is so completely different than what typical multiples experience. It's realizing the promise we got from others, "triplets really start getting easy at age 4" has had absolutely NO bearing in our world and we really don't know when triplets will ever start getting easier. 

It's hearing a little voice saying "Mwah" and feeling your heart squeeze as you give her the kisses she's asking for. It's hearing Fefame Feet (Sesame Street) requested for the 15th time today and still just being excited because it's an actual thing you KNOW she wants and it's clear enough that even Grandma can understand it. It's hearing songs being sung and melodies chanted constantly but hardly ever hearing either of them say Mama very often. It's hoping that pull-ups will no longer be part of our world someday and yet being grateful they're brushing their teeth, getting dressed and usually using utensils to eat. 

It's always feeling like you never get a chance to simply enjoy the wonder of childhood with your neurotypical triplet and yet having moments of pure joy when you see all three truly enjoy being together. 

It's more than you ever imagined, fuller than you could have dreamed, and a constant study in contradictions.

Monday, August 11, 2014

What every family with autism needs

Yesterday we spent Sunday Funday putting this together, then watching our girls enjoy it. It was a lucky break to see an ad for a free used trampoline if we would just pick it up. We still need a new safety net and better step up for it, but this will be getting a lot of use.

For the record, our two girls with autism do jump a lot and our indoor tramp is important for regulation, however, our neurotypical triplet loves this big trampoline just as much as our other two.

I'm planning to read The Reason I Jump in order to get a better glimpse of what's happening to my kids with autism and why they need that sensation so much. It's right there on my GoodReads To Read list - #1.

We love to jump! 


Friday, July 4, 2014

Don't mock the headphones

Headphones - it's how we roll!
Princess triplet, like many kids with autism, find the 4th of July challenging because of sensory issues. Today's parade was enjoyable because her headphones provided a barrier at the beginning until she could get used to all the stimulation.

If you see a kiddo today with headphones on, don't mock it. This may be the only way that family can enjoy a "typical" American holiday.

And fireworks? We'll try them tonight and hopefully they'll go better than last year for Princess. Since we only have one set of headphones right now, Princess, who is far more sensory defensive than Angel triplet, will get them tonight. Hopefully Angel will find the visual interest so intriguing that she may be able to block out the auditory onslaught.

Happy 4th of July!

Wednesday, July 2, 2014

And it's not even breakfast time for Mommy yet

The best I can say about today so far is at least it's happening after coffee... even if it is before I get breakfast.

Today's most often used phrases so far today (and it's not even noon):
  1.  "No, stop eating the book." 
  2. "You may read the book, hold the book, look at the book. Do not rip the book. Do not eat the book."
  3. "You may not break the book binding. We read books this way."
  4. "Breaking light bulbs is dangerous!"
  5. "Stop! Give me the broken light bulb. No, not in your mouth."
  6. "No we may not unscrew lightbulbs."
  7. "Come back downstairs. You may not be upstairs without Mommy."
  8. "You may have water, not juice."
  9. "No juice. Water, would you like water? Have some water."
  10. "You may not hit your sister."
  11. "Where is your barrette? Take your barrette out of your mouth."
  12. "Stop licking the puzzle pieces."
It feels like a Pica heavy day today. Is this transitional behavior? Who knows? It sure could be. We're transitioning in our ABA therapy, school, speech, and OT therapy. Plus, we just sent 1/6 of our family to Europe yesterday. I think you can safely say our life is tumultuous today.

Sunday, February 16, 2014

Intensive potty-training - Day 1

Today marks the beginning of the New World Order in our house. Angel triplet is learning to go potty. TODAY. It's Midwinter Break so we have 2 days off from school. Tripped Up Daddy is in charge of Princess and Sunshine triplets today. I've hired a babysitter to watch the other two triplets tomorrow and Tuesday so Angel triplet and I can live in the bathroom.

We're following a regimen indicated by her ABA supervisor, and it normally works after about 2 to 3 days.

It's insane. It's programmed potty times with only 10 minute breaks in between. That's 15 minutes of sitting on the potty, then a break, and then back to the potty. We've done 4 cycles already, had one accident, and only a little balking. She can play with anything she wants while she's on the potty, and if she goes two amazing things happen: 1) SHE GETS CANDY! 2) We get to wait 45 minutes until the next scheduled potty time!

So far the best potty time activities are her Barbie B Bright computer toy and My Pal Violet. Oh and Mommy's reading electronic potty books whenever there's a lull in interest.

Tripped Up Daddy and the others went to church leaving me alone in the insanity. Actually, I think I could do this if it were just her and me. Of course, nothing, absolutely nothing else, will be accomplished today.

Wish me luck. If it works we'll be down to just 1 triplet still in pull-ups

It's no secret we're behind on this daily living skill (the girls are 5, after all), but that's not unusual when you're dealing with autism or other developmental delays. If you've followed along with us in the past you're used to reading about the potty training dilemma, if not, you can catch up pretty quickly by looking at the earlier posts (linked in this paragraph).

Thursday, June 6, 2013

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.




Saturday, June 1, 2013

Selling extra diapers?!!

Where we are
I recently saw a photo of a big box of diapers for sale on a Facebook post from a local garage sale group. The title was "Selling Extra Diapers - my son potty-trained faster than I expected." Looking closer, I saw they were Pampers and I love a deal, you know. Unfortunately, they were a size 3. A size 3! I haven't seen a size 3 in this house in well over a year. I used to get excited about the Pampers Gifts to Grow program. Now that we're on size 6 diapers, there's nothing much on the reward list we don't already have, so we just get coupons for more diapers, and that's not exactly exciting.

Back to selling diapers. That mom doesn't need any diapers for her son anymore, at all. I almost cried. I am definitely not THAT MOM, and not just because I don't have a son.

I can't even imagine how it must feel to be able to say I don't need diapers anymore. In fact, I'd love to be able to say "she's potty-trained" for any of my triplets and know it means a process that's actually finished. While Sunshine triplet really only has accidents at night now, those accidents often include number 2 just as often as number 2 ends up in the potty. (Okay, I lied, we just had a Number 2 accident and it's in the middle of the day).

Potty training = nightmare


Sunshine triplet's night-time wear
Potty training is an absolute nightmare with triplets, especially when two of the trio have autism and are significantly delayed with milestones. Okay, I lie. I haven't really even tried much with Angel or Princess triplet, just some basic introductory stuff to the potty. My goal has been to get the neurotypical triplet trained which would magically make it easier for me to deal with the other two, right? Potty training my neurotypical triplet has been hell, and I've been afraid of what it will be like to really concentrate on it with my autistic daughters.

My experience with potty training in the past is minimal. I used to think it was just perfect experience, now I know better. Lotte was about 3 years old when her dad and I finally started the divorce process. Potty training, while I thought about it briefly, was rejected as not a good thing to pursue until some of the instability of her world disappeared (is that another way of saying I was lazy and didn't have a clue as a first-time mom?)

Anyway, Lotte practically potty-trained herself. She came up to me one day and said, "Mommy, I don't wear diapers anymore." I replied, "Really? Okay then let's go get some big girl panties for you." One trip to the store, 2 packages of brand new underwear, 1 set of training pants with plastic pants for over top and 2 weeks of practice. Potty training was done, finished, complete - EVEN AT NIGHT! Oh, did I tell you that she was in daycare full-time back in those days? Yeah, in retrospect her potty-training had absolutely NOTHING to do with me and EVERYTHING to do with a really fabulous daycare Mama. (Don't ask me how long it took for me to realize that).

Anything and everything


We have 15 pair of training pants
ready to go right now
for Angel and Princess triplets
Back to the trio - Lotte would be so happy if I would quit discussing her potty training after all. I should tell you that we tried absolutely EVERYTHING with Sunshine triplet, and I do mean EVERYTHING. Rewards worked enough to get her to sit on the potty, but honestly I spent over a year just trying to get her to go number 1 in the potty. I have never met anyone with such a bladder of steel. The girl could hold it for 12 hours if she wanted - even with me pushing fluids as much as possible. She would simply wait until she knew she would be wearing a pull-up to go (like at night). School was as frustrated as me, well, maybe not quite, they usually only had to change one diaper/pull-up a day after all. And they certainly don't pay for them.

In the end, what worked for Sunshine, you ask? Well, it was a little meanness and the use of an old summer camp prank that actually did it. Here she was, just before bed, sitting on the potty jiggling her legs and screaming "I want a pull-up," when Tripped Up Daddy said, "tough." "You have to sit and you have to go here. We're staying right here and you're safe, but you have to go on the potty, not in a pull-up." Then he pulled out a dishpan, filled it with warm water and stuck her bare feet in the water. Within seconds, Sunshine triplet surprised herself by going pee in the potty, and not just a little. She had been holding it for hours after all. That was the moment when she finally realized there was nothing to fear about using the potty, at least for number 1. Then within days, she self-initiated bathroom time and she's only had a number 1 accident about 3 times total. That was about two months ago.

The lessons

Church NextStep Toilet Seat

So what have I learned? Well, I wish I would have realized it was fear and not really stubbornness that was the issue with Sunshine. I also realized she had almost been at the same point about 6 months earlier, but I gave in to the frantic screaming and fear by letting her have a pull-up. Had I instead stayed strong, she ultimately would have broken through and succeeded, saving us months of anxiety and frustration. I also wish I had found Potty Training Concepts a whole lot sooner. I think it would have been an invaluable resource. I wish I would have chosen a specific method of potty training that I agreed with and stuck with it. Sunshine triplet enjoys structure, maybe even more than her two triplet sisters with autism. If we had chosen a specific structured approach to the whole process and stuck with it, I think it all would have been easier. Instead, we were way too busy trying everybody's suggestions, the doctor's, mother-in-law's, friends, family members, teachers, etc., that I think it simply confused everyone, especially Sunshine. Last, while potty chairs are fine, I strongly recommend using a potty seat on the actual toilet, like the Church NextStep Toilet Seat.

Where we're headed,
sooner rather than later
we all hope.
What can I apply to the next two triplets for potty-training? Ahhh, now that's an interesting question. At this point, we will be working very closely with the girls' new ABA therapists and OT therapists regarding the process. While I've found many plans out there and even recently went to a seminar specifically for toilet training kiddos with Down syndrome (and other disabilities), I still am not sure what method is the best. Stay tuned, though, I'm sure we'll be learning a lot soon because toilet training is definitely on the goal list for both Angel and Princess triplets.

If you have any advice, I'll sure listen, because like I said, potty training stinks (even for singletons who don't have autism) and obviously I'm no expert on all of this.




Wednesday, May 29, 2013

Errands with the kiddos

Even on good days a trip to the grocery store can prove disastrous with kids. When you add in multiples and also special needs, it can be really trying. So trying, in fact, that today I shot out a tweet - almost in fear:



No, not from today, but it is 2 triplets
& they are in a cart.
Don't get so picky about details!
As it turned out, the trip was probably the best we've had in a long time. It was just me with Princess and Angel triplets, and we spent over an hour in the grocery store with absolutely NO meltdowns to speak of, no major challenges at all. The only thing I can identify that may have made it easier was being able to spy one of the big, 3-kid-seat carts in a cart return. Of course I parked the van as close as I could, grabbed it before getting the girls out of the van, and moved them into that directly from the van. That saved us numerous transitions, which I really was worrying about as we were driving into the lot. Beyond that, the free bakery cookies helped, but mostly the girls were just in really great moods. They were pleased to be out of the house and somewhere different and were excited about the sights around them. That doesn't mean the sounds of carts moving around, the electronic alarm going off or the bottle return noise (from 3 aisles away) didn't adversely affect them. We still had fingers in ears & hands over ears even while 3 aisles or more away from the sounds.

They continued the good behavior by playing quietly once we arrived home so I could even unload the groceries in relative peace. Are they getting older? Are they just becoming more used to their surroundings? Maybe, or maybe we were lucky and hit everything right on. In any case, I absolutely know that it could have all gone horribly wrong in 2 minutes or less.

Then an even more surprising thing happened. Meijer replied:



How do you like that? One of my regular grocery stores wants to know how they can help make a sometimes very challenging experience better for my daughters. I'd say that's good customer service! Since it was only a day after a huge firestorm erupted after word got out about a Kalamazoo salon owner berating a customer for not controlling her autistic son as he received a haircut, I'd say Meijer looked pretty family friendly and proactive today. And trust me, I don't always give them credit for those two things.

Anyway, the question, "how can we help you," prompted me to wonder exactly how to answer back. It also made me wonder what other folks like me do with the basic errands of life. You know, people like you. How do you involve your autistic (or special needs) children without feeling too much apprehension? How do you plan for a great time? Or is it simply beyond our ability to control and we just take what we can get, smiling when it's good, crying when it's bad? I asked for feedback on my newly created Trippeduplife.com Facebook page too and am waiting for responses. I'd love to get some feedback that I could actually give to Meijer. How could they make it easier for kids with autism to feel comfortable in the shopping experience? With 1 in 88 kids being diagnosed with autism, it's worth knowing. Besides, I think it's important to reward companies when they start asking the right questions.

So stop by the Facebook page, like it & reply. Or, just comment below. Let's get some answers out there, because somebody wants to help, and I don't know about you, but I don't always feel that kind of love when I'm out with my autistic kiddos.


Monday, May 20, 2013

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.

Saturday, May 11, 2013

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!