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

Response to 1 in 68

The CDC has released its latest numbers on autism. Now we know that 1 in 68 children have an autism diagnosis compared to the 1 in 88 of the past.

The report also indicates that boys are 5 times more likely to be diagnosed with autism, but in various reports I've been reading this could be simply because the symptoms in boys are more prominent and also because professionals have been trained to look for it more often in boys than in girls. I believe we will see autism diagnosis equalize between genders as the years go on.



This clip features my friend Kim from NJ with her lovely daughter Ava. Kim was one of my own first supporters when we received the autism diagnosis on Angel and Princess triplets. In fact, without knowing Kim and her story, I don't know if I would have finally pushed to discover the real issues in our own daughters.

The report also indicates that once you know, you can get early intervention. Oh if that were only true for everyone. Certainly, I support early diagnosis. Certainly, I support early intervention. I guess I just want to bring to people's attention that whether or not you get the type of intervention you really need depends on more than just the diagnosis. It depends on your insurance. It depends on your state. It depends on your school district. It depends on your income level. It depends on how adept you are at finding, applying for and being awarded available grants. It depends on how determined you are to work with what's available until you can obtain what's actually needed. It depends on how easily you accept the following answers relative to your child: "No," "Not now," "We don't have those kind of resources available," "Since you're self-pay we can only...," "I'm sorry, but" and the list goes on and on and on and on.

If you have any concerns about your child, I strongly suggest you seek out answers as soon as possible. However, you need to be ready to fight for your child and his/her needs from the beginning. An autism diagnosis is great and in some places, that's all you need to make sure you get the needed services. In most it's really not. Dig, research, talk to parents and never allow yourself to believe that one professional knows all the answers. Don't allow yourself to remain in denial or fear for very long. When you have a child with autism, you may need to be much more than just a parent. Your roles will also include therapist and advocate. Get used to it, that may not change for years.

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!

I don't hate your neurotypical child

Really, I don't. Hate him or her, I mean.

Is it HATE? Is it ENVY? Does it even matter?

Have I lost you already with the word neurotypical? I'm sorry, it's all part of my post diagnosis vocabulary, let's call it. Basically it means a person who doesn't have atypical neurology according to Wikipedia. I know I've been incredibly quiet over here since the diagnosis, so you might need a quick refresher on the Tripped Up Family and our unique challenges with our all girl triplets. We've struggled with speech delays and milestone delays with our triplets, noticed by us since they were about a year old and by 18 months old we sought help through our state programming. As we continued to work through the delays and other interesting behavior, it became clear that we were probably dealing with more than just the "they're triplets" and "they were preemies" excuses could account for. We pushed hard for answers and now we know that two of our triplets are on the autism spectrum with a diagnosis of classic autism. Today at 4-1/2 years old, Angel and Princess triplets are still mostly non-verbal and show plenty of stereotypical autistic behaviors. You can't miss the diagnosis anymore at all. Meanwhile their neurotypical triplet sister Sunshine has overcome her speech delays (the triplet & preemie explanation is very plausible here) and will be joining a general education class by this fall if all goes well.

Okay, consider yourself caught up.

Let's get back to hatred, or lack thereof. Hatred of neurotypical children, specifically yours. Only I don't, hate, I mean. Right, I don't hate your neurotypical child, after all, I have two neurotypical children of my own right here in the Tripped Up Castle and I love them immensely. I don't hate my kids with autism either, although I think I can safely say I do hate the autism itself. Sorry if I offended anyone in the autism community with that, but there it is, that's the fact.

I hate how every day I see kids learn and grow and say the cutest things and make everyone smile, while two of my triplets struggle with the simplest of communication, like saying "Mommy" or "Daddy" or "I want drink."

I don't begrudge the success of your neurotypical children - I celebrate them! Just like I celebrate the successes of Lotte and Sunshine triplet. I will admit, however, that in every celebration of success there's an inner struggle for me as I wonder, "will my Princess and Angel triplets ever reach that goal or one similar to it?" Will I ever just smile in wonderment with them as they show me some amazing feat they've accomplished? And the answer comes, I just don't know.

According to one of the teachers at the girls' school, a typically developing child has to repeat a skill 1 to 200 times before it becomes a learned behavior. With special needs kids, you can ramp that high number up to 2000 repetitions. And the kicker? We don't know exactly what or when our kids will learn or what or when they'll actually retain. We don't know what skills may always remain elusive for them. We live our lives trying to presume competence, trying to have high enough expectations, knowing that if we don't, then we aren't helping them to reach their full potential. It's a constant struggle, and you feel like you can never let up, otherwise you'll fail your child forever. Trust me, as a parent with special needs kids, I've become an expert at piling up the guilt on myself, been doing it for years now.

Sometimes I really want to let go of the pressure and the strain and just enjoy the marvelous wonder of my children - each and every one of them. I find I can easily do this with Lotte and Sunshine, but it's almost as if I'm afraid to let go with Princess or Angel. It all comes down to a fear of losing ground in the basics of what we have right now. The good stuff that is happening. If I'm not constantly focusing, will she forget how to use a sentence strip? Will she stop reaching out and holding my hand at dinner? Will she stop singing with me? Will she decide stimming is more important than trying to communicate?

I used to be the type of parent who believed strongly in "let kids be kids," let them play and experience, let them set the agenda. It fit my spontaneous personality quite well. As a family with triplets, and two of those triplets with classic autism, spontaneity has disappeared and been replaced by a never-ending structure. Simple parenting has been replaced by a strange mix of guiding/therapy/teaching/hoping/loving that always requires more than you ever thought you had, and you're always worried there isn't enough.

No, I don't hate your neurotypical children. Really, I don't, but in the middle of Autism Awareness Month, I do find myself still grieving the lack of typical neurology that exists for two of my children. Sometimes green eyes are pretty, sometimes they're not, and envious eyes are probably some of the ugliest around. Bear with me as I work through the grief and anger of still coming to terms with this diagnosis and what it means to our whole family.

The hope of babble breaks

Princess triplet surprised me yesterday when I realized her normal babble of "Princeeze" had actually broken into "I didn't do it, I didn't do it" in English. It took a second or two to realize that's a line from The Polar Express which she hasn't seen in a week or so. Rather than say this is an autistic behavior of random language usage, I'm choosing to believe she was actually asking to watch the movie. Does an out of context full sentence count as a child using sentences? Maybe not, but it does give me room for hope.

Hope is one thing I've really started to embrace in this land of special needs where I live and raise my kids. It's always a little different in families where there are kids with special needs and as parents we can often feel isolated (usually not in a good way). Lately I've been trying hard to switch my perspective on the toughest parts of the daily parenting experience of kids with autism (of preschoolers with autism, of triplets - 2 of whom seem to be in perpetual toddlerhood). Switching my perspective means looking at the things that drive me crazy, switching the lens, and choosing to see a benefit within the struggle itself. Suddenly this lens change, this change of perspective has brought me more into hope overall. It's also allowed me to see that as a special needs parent, I get to hugely celebrate the littlest milestones of my kids without anyone groaning. Nobody minds when we throw hopeful parties over here.

So yesterday's (and today's so far) hopeful party was all because of a break in babble, a break in babble into English.

And guess what? It doesn't matter how irritating that kid is in The Polar Express who repeatedly says, "I didn't do it." I can hear that from my Princess triplet for the next 2 days straight and be really excited about beginning speech patterns every single time.

The dreaded A word

Stress and the Tripped Up Family seem to go together like peas and carrots, as Forest Gump would say. It's right up there in the header, in the mathematical problem we use to describe us. (3 cats + 1 teen girl + ggg toddler triplets + 1 computer geek dad + 1 writer mom) When you add all of our variables up, even on our best days, we end up with a medium to high stress quotient. And now we just walked some more stressors right in through the front door, or perhaps we just better defined ones that have been here for a while.


I've been tipping my hand on Twitter with this but haven't blogged about it because we didn't have any official statement. Now we do. Yes, the A word is part of our world. Can you guess it? Since April is Autism Awareness Month, it's probably not a huge leap to go to the word autism. Yes, you'd be right with that thought, although sometimes I think it can also be Anger, Anxiety, Apprehension, Alarm, Aversion and many other adjectives describing the mixed emotions of getting an autism diagnosis.


Since the triplets were about 15 months old, I've had concerns about their speech development and actually other potential delays. Ultimately we contacted the Early Intervention group in our state to see if there were delays. Indeed there were. We began the suggested programs for them at 19 months. We've been actively involved with the Early Childhood Special Education programs in our public school district ever since and our entry point with all of this was the label Early Childhood Developmental Delay for all three.

Copyright © 1999-2009 Design By Cher - All Rights Reserved

The dreaded A word has always been in the back of my head. We mentioned it here and there to various professionals connected to our kids, but until recently, were always told things like: "they're triplets," "they were preemies," "they probably have their own language," "they'll catch up," "every child progresses at their own rate" etc. If only it were that easy. Finally, I saw an article with a list of autism symptoms in bullet points, and I realized that our Princess triplet had some levels of every single one. Additionally, our Angel triplet also had some of the symptoms. My head was filled with raging questions: Why do we assume they're exempt from autism again? Why is that word never brought up by any of the professionals working with us again? This led Tripped Up Daddy and me into a new season of more dedicated advocacy for our children, which brought us to an autism center where we received a provisional Autism Spectrum Disorder diagnosis for both Princess and Angel triplets.

So there it is, the A word. There really wasn't any shock connected with it. In some ways, there was relief. At last, I could acknowledge there was something going on beyond the "they're triplets" and "they aren't parented the same way as singletons are." (A fancy way of saying - you're not a great parent, but you have triplets so we can't really fault you too much) Finally, I could cut myself a break and realize it wasn't because it's impossible to parent multiples utilizing the best practice techniques that child educators, pediatricians, child psychologists and speech pathologists recommend for singletons. I could stop blaming myself for the lack of one-on-one time, for too much PBS or other TV, for not providing enough freedom for them earlier to encourage exploration, and on and on and on.(Oh by the way, if there are best practice parenting techniques for parenting multiples, somebody send me the list or link, I'm afraid I've lost my copy).

In mid February we changed the preschool for Angel and Princess triplets to one where they will have more intensive services. We're already seeing improvements in regard to an interest in socialization and attempts at communication. These are positive signs. Our little girls need additional intensive therapy that our insurance currently will not cover, but because of some changes in Michigan law, we expect it to be covered in January. We hope we can provide enough early intervention through school and at home in the meantime so Angel and Princess will have the best possible outcomes.

The dreaded A word in our world comes with a lot of baggage. I'm realizing lately that I can choose for that A word to be Awesome and Amazing as I look at the progress my daughters make each day. For they do make progress and because of how much work each step takes, we have the opportunity to celebrate much more often than you might with a neurotypical child. (NT for short - you see, I'm already learning a whole new language with this diagnosis.)

I have much to learn about autism itself and how it presents in each of my daughters. You know the old saying "if you've seen one, you've seen them all?" Autism is not like that. If you've met a person with autism, you can say, "I've met one person with autism and seen it manifested in one way." The recent statistics from the CDC say 1 in 88 children have autism - 1 in 252 girls more specifically. Each of those cases is incredibly unique - just as unique as our Princess is from Angel.

She wants more applesauce!

When you have speech delayed toddlers, a new sign language sign used spontaneously is wonderful. We still get really excited when Princess or Angel triplets choose to sign "more" rather than simply cry for attention. While Sunshine triplet is moving forward and adding new words to her vocabulary every day it seems, we're still waiting for the same "light bulb" to click on with our other two.

At the last play group though, Angel triplet blew her teacher, Tripped Up Daddy and others away. She asked for more applesauce - "Mo appa." It was as clear as day. For the parent of a speech delayed toddler, this is a major victory! The same day, Princess triplet had a victory moment of her own during a diaper change. Her daddy said hi to her and asked her if she could say, "Hi Daddy." She replied by mimicking his words.

Needless to say, those communication efforts are wildly praised by us and everyone working with the girls. I do know that the girls probably attempt to speak and communicate more often than we even realize. Sometimes it's not clear enough for us to differentiate from the typical toddler babble, sometimes it's simply too soft, and sometimes we're just plain too busy to notice. But we really try to give as much positive feedback as we can to every attempt we recognize.

I think my first real introduction to speech delays or milestone delays in children was through a movie when I was young, Son-Rise: A Miracle of Love. It was about a family who had a third child (a boy after 2 girls) and they discovered he was autistic. Back then, autism was not nearly as well known or understood as it is today. The parents were working their own therapies with their son, Raun, because they weren't happy with the accepted forms of therapy out there at the time. For some reason, that movie stuck with me (I wasn't even a teenager when I saw it) and I'll never forget the moment when Raun actually asked for juice. The father, at work, received a phone call from his wife to say their son had asked, had communicated in his way, to ask for juice. Her husband got so excited that he left work immediately to go home, explaining to his boss that his son had asked for juice, while his boss looked at him incredulously saying in his wake, "and you have to go get it for him?"

For us, the "Mo appa" and "Hi Dadda" moments were just as big. We're moving beyond making sure we have solid eye contact to being able to expect some real verbal communication. I think all three of my triplets may really be talking soon!

"I am not dumb now"

Helen Keller's first full sentence of spoken language: "I am not dumb now!" That's powerful stuff.

Helen Keller, 1880-1968, was an American author, a political activist, and a lecturer who spoke out regularly in support of women gaining the right to vote, the rights of workers and other progressive ideas. As the first deaf-blind person to earn a college degree, it's not surprising that she also fought for the rights of people with disabilities. Keller lost her sight and hearing through illness at 19 months old and spent much of her early childhood unable to communicate with any clarity at all to those around her, including her parents. As a young child, I read her auto-biography and watched the play/film, "The Miracle Worker," more than half a dozen times. Then, when my eldest daughter was small, I remember introducing her to the amazing story of Helen Keller and her brilliantly dedicated teacher, Anne Sullivan. I have always admired the courage, intelligence and spirit of both women.

As a mother with 3 toddlers who are all speech delayed, one might imagine this story would be inspiring me almost daily during our struggles with delayed milestones. That thought would be wrong, unfortunately. I have spent the last year in battle of these delays and facing discouragement often - that and always some large doses of guilt, worry and frustration. Sure, we've had plenty of success in the past year too, but our girls are still behind their age group, so the focus of helping them catch up remains at the forefront. Never once did the story of Helen Keller ever cross my mind.

That is, until today when a friend posted this YouTube video of a 1930's news story with Helen Keller and her teacher, Anne Sullivan, on her Facebook page. Suddenly, it was as if I was reading the autobiography all over again. My friend, whose daughter faces an autism diagnosis, said she was so very grateful for all special education teachers and particularly Anne Sullivan, probably the most brilliant special ed teacher of all time. With our daughters heading back into their school year regimen of early intervention to help with the delays, the timing was perfect for me to see this video. I really needed this new perspective. It's so easy to get caught up in the "my kids are behind or my kids aren't like other kids" angst. Well, hey, wait a minute! Helen Keller was more than significantly delayed in milestones - she couldn't communicate with anyone, even her closest family for YEARS. Even Anne Sullivan suffered from her own disabilities.

Neither Helen Keller nor Anne Sullivan allowed their disabilities, their "delayed milestones," if you want to put it that way, to stop them from being strong, compassionate, and hard-working women who made a difference in their world. I have three speech-delayed toddlers - and two who also struggle with other delays. Yes, that's the fact today. Today I also realize another fact, Helen Keller and Anne Sullivan refused to quit and they did great things. Helen Keller died before I was born, so I can only imagine how amazing it would have been to know such a brave and determined woman. Today, I choose to be inspired by Helen and Anne and to use that inspiration to help me teach my daughters. Tomorrow, I expect them to be strong and compassionate women.

Build language with reading and help speech delays too!



A summertime walk up the hill, with little feet, and little trips



Don't you love it when one activity can help your kids in multiple ways? Sometimes I think we forget how little things can impact their world in such a huge way. Like reading for instance. Isn't it amazing that reading to your kids can help them excel at language at an early age and also help those who are struggling with language at the same time? I wrote a little about this in a short guest post for the Reading Kingdom today.



Sometimes when you're bogged down in the monotony of parenting, working full-time, and trying to keep a house at least clean enough, it's easy to downplay the importance of the little things. I'm trying to remind myself today, and every day, that those little things like a nighttime story, a morning cuddle, and a few moments of language focused playtime really do add up to an awful lot.

What are some of your favorite "little" things to do for or with your child?