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!

The Tripped Up Life celebrates 1000 Ausome Things #AutismPositivity2013

Today I'm participating in the Autism Positivity Project Flash Blog by celebrating two of the most "ausome" parts of my world: Angel and Princess triplets. This flash blog is about showing the world the positive side of autism, the acceptance part of autism. And, on the last day of Autism Awareness month, I felt it was important to participate in - even though I'm really late in the day.

Here is a description from the author of The Third Glance blog, who is one of the major organizers in this effort. I couldn't have explained it any better than this: Last year hundreds of bloggers came together in a show of support and solidarity in response to an anonymous person’s Google search “I wish I didn’t have Aspergers”. The posts that came flooding in from all over the world were a beautiful example of the power of strength in numbers. With so much negativity still surrounding Autism and the misinformation and misconceptions that continue to abound, we invite each of you to share one, or two, or more “Ausome” things! 

Princess and Angel triplets

No matter how difficult life can be when raising triplets, two of which have neurological differences which make communication extremely difficult, there's never a day without moments of pure and overwhelming love and pride in my children - all my children, those with autism and those who are neurotypical.

No matter what trouble Angel triplet has started, my heart always melts when she looks up and says, "Hi!" Just like how my heart always skips a beat whenever Princess triplet sings one of her favorite songs.

These are my awesome girls. These are my sweet, strong, and determined girls who work so hard every day just to fit in a world that doesn't really understand them. Every day they make me smile, every day they make me shake my head too, just like my other children. Every day they are my children first and little girls with autism second.

These are my "ausome," positive, hopeful, proud things that I get to shout to the world about. I have the privilege, the honor, (and yes, sometimes the struggle), the responsibility of raising these amazing autistic daughters - for that I am truly blessed.

Yep, she'll eat anything

Brussels Sprout - raw, stolen off counter & gnawed on.

Angel triplet really does put anything in her mouth. She was eating grass in the backyard on the first day of real spring last week. Really.

So, this everything in the mouth issue sometimes has its benefits. Angel triplet likes vegetables, unlike my other two triplets. She likes some vegetables more than anything else at dinner. While she attempts to grab any and all food that may be on the counter and unprotected during meal prep (peanut butter, syrup, raisins, bananas, etc), tonight's snatch was rather interesting. Brussels Sprouts, intended for a pot of boiling water, and nabbed instead by Angel triplet. The remnants of the one she tried to eat is above. I'd say she got pretty far.

Anyway, we ended up having green beans and Angel triplet had thirds on the beans. Maybe that's why she has the "Angel" nickname. In contrast, Sunshine triplet had her own drama at dinner, summarized by this statement amidst tears: "there's a bean in my mouth and I don't like it!" (We required her to eat at least one bean before she could have seconds on grapes, I know, we're cruel).

And Princess? Well, as long as her dinner has tomato sauce in it & lots of spice, she's usually happy with that. Just don't ask her to eat regular veggies alone - raw or cooked, doesn't matter.

So cute, it almost made me cry!

Pink fabric is rain coat side, brown polka dot is cotton lining.

Those actually were my words. I was in the fabric store for only 10 minutes, I swear, and then I saw this incredibly cute material that would be perfect for a windbreaker/spring jacket for the triplets.

So of course I had to buy it, because why wouldn't I make my own hooded reversible rain/wind jacket with adorable buttons for the cutest kids in the world, right?

Why wouldn't I pay a boatload of money just to get the supplies needed to make a super cute raincoat (with pockets and ruffles, I might add) in triplicate. A ton more money than I would have spent at a regular store, except they don't have this perfect material, and ohhhh these buttons! So thanks Pinterest and Whimsy Couture for the great idea, ahem, ahem, for the EXTRA WORK, yeah, thanks.

Yes, I turned into some ooohhing and ahhhing craft monster and yes, I guess I am SEWING new raincoats for the littles now.