Lila Meets “Signing Time” Rachel Coleman

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I can’t even….

I’ve been trying to start writing this for the past few days, and I just can’t seem to find the perfect words to accurately describe our trip to Tulsa to meet Rachel from “Signing Time”.

Lila has loved Rachel and the show for a very long time – like with most things that just naturally “click” with her, it involves music. Lila and I actually communicate in song a lot of the time, for transitions and therapy purposes, as well as for fun – she loves it when I take music from her favorite shows and both sing the song and act out what’s happening on the TV screen. It’s been a way into her world, and it’s the place where it appears the most seamless for us to meet in the middle.

Rachel is the reason Lila started wearing her glasses, and the reason for a few of her words she has attempted along the way. Although she uses picture cards instead of signing, she always seems more motivated to try and say a word when there’s a fun sign involved (“octopus”, “elephant”, and “crab” to name a few). Plus the many countless hours of us doing the “Hopkins Hop!”.

I had been excited (and to be perfectly honest with you – in a way… dreading) this trip for a while. Lila loves “Signing Time”, and I wanted her to have the opportunity to meet Rachel… but the prospect of taking her all the way to Tulsa, into a concert venue, and getting her back here without major upset was a dicey undertaking at best.

It’s difficult to feel home-bound so often. Trips to the grocery store, a restaurant, anywhere new, and especially in public – it’s never easy, for any of us. Aside from the obvious issues with change in routine and new places, there are always plenty of sensory assaults that lie in wait – lighting, sounds, etc.; situations far beyond my control. But…I didn’t want her to miss out. What if for the first time at such an event…. she actually had FUN?

So Bill, Lila, Janet, and I ended up heading out later on Saturday than we should have. I was scared to have her there too long before show time because I knew that in the unfamiliar environment before the show, she most likely wouldn’t last long. Rachel messaged us and said she could see Lila prior to the show, and by the time we found out, we were cutting it very, very close.

Once we made it there and made our way down to the stage, they met us in the wings. It was dark, and Lila’s anxiety started to rise quickly. She started to melt down…. and then something amazing happened. Rachel Coleman started singing…. “It’s Signing Time with Lila and Rachel…”

Now – unfortunately I didn’t get it on video, but I can promise you – it’s a moment I’ll never forget. It was truly an honor to witness. You could instantaneously see Lila shift… back from the brink. They had such a sweet interaction where Rachel gave her a couple of stickers (which Lila held onto throughout the show by the way), and we took a few pictures. Rachel couldn’t have been any kinder, and to go out of her way like that, well – it just meant the world to us.

We headed back out for the show – and can you believe it? Lila lasted a whole hour. She climbed up and (mostly down) the stairs – oftentimes just trying to get back down to her new friend, Rachel. There were a few incredible points about this: First of all – Lila doesn’t react like that to hardly anyone, it was incredible to see her continually try and get back to Rachel. It was so truly adorable to watch. Second of all: no one seemed to care that Lila was meandering around on the stairs. Everywhere I looked – every kind of disability and all sorts of “Team Quirky” surrounded us. Flapping, vocal stims, and everywhere I looked… kind eyes. These were our people, and that in and of itself was truly an amazing experience.

During one of Lila’s trips to try and get closer to Rachel, she slipped on the stairs and when she stood up – conked her head a bit on the railing. She started to get upset and I tried to calm her. It didn’t work, and that ended up precipitating a meltdown that would eventually cause us to have to leave. However despite that – we consider it an incredible success. Going to the concert and having it go so well was sort of transformative in a way. I feel confident that we can do more now than we have ever been able to in the past. We’re pushing her boundaries – and she astounds me at every turn. She’s one of my greatest teachers.

Later that night Rachel messaged me with a sweet note that included the following: “Thank you so much for being daring when I know that most times it’s just easier to stay home.” She truly “gets” it. And I’m so grateful that we were able to meet up with her. She’s such a kind, down-to-earth, and genuinely beautiful person – both inside and out. If she ever comes back to Oklahoma, you better believe we’ll go and see her again!

Sending so much love and light to Rachel Coleman and her beautiful family! ♥

Until next time…

 

P.S.: Thank you so much for putting the beautiful video above together, Janet. And thank you for coming with us and for just being so incredibly wonderful!

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“I’m Mad”

I have such an incredible video on my phone… but unfortunately, I can’t show it to you. I try to protect Lila as best I can and not show anything that might embarrass her later on in life. You see, she happens to be throwing a tantrum in this particular video – but there’s something incredible that happens during that tantrum.

To set the story: she had been playing outside (I still can’t get over it). Typically when she goes outside to explore, she prefers that her Daddy and I stay in the sunroom – in a specific chair. I believe that’s to help cut down on the possibility of something unpredictable happening outside – to help make sure that she’s in total control of the environment out there at the moment. She came into the sunroom, grabbed my hand, and led me outside.

She walked me over to the door from the side yard into the garage, and prompted me to open it. I did. Then she wanted the garage door open, so I did that too. I tried to sit down in the garage to see what she would do. Nope – she grabbed my hand and kept trying to lead me back to the sunroom around the back of the house. She wanted me to go back and sit in my chair (where I “belong”) 😉 while she proceeded to go explore the front yard and the rest of the great outdoors….. alone.

Now I tend to be a bit of a push-over, but obviously that wasn’t going to happen. I ushered her inside and she was livid. She threw quite the tantrum (which was fine, I obviously prefer a tantrum to a meltdown). She stomped her feet, slapped her hands down on the coffee table, and was crying. I said “Are you mad? It’s OK to be mad”. And she looked up, looked me square in the eyes and said “Mad!”. I about fell over. She said it over and over, and I told her that it was OK to be mad – she could choose another activity, or we could go out front together. She brought me her “milk” card, calmed herself down while she drank her milk, and then we moved on with our evening.

But make no mistake – to express herself verbally, especially in a time of anxiety and upset – I KNOW how incredible that was. I’m so proud of her! *high fives all around* Go, Lila, Go!

Outside

On Friday, March 11th, 2016 – Lila went outside to explore and play – for the first time in a YEAR. She had only recently started going into the sunroom, and in the past that had even been too much for her – just too much anxiety to even go through the doorway.

A week prior, I had attempted to open the screen door while we sat in the sunroom and she played in the trampoline. Her anxiety instantly shot through the roof, I could feel it. It feels like a wave of panic that hits you like a freight train, from zero to 300 in .2 seconds flat.

However on this day –  Bill started it with a game…. He would say “open!” (then open the sliding glass door). She would motion for him to close it, and as he would he said “close!”. They did this a few different times, and eventually she started going over to try and peek out the doorway to the outside.

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A few times of that (open and close, open and close, open and close) and then…. just like that – she was off!

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It was incredible – for months and months – she has been looking out windows, I’ve been opening the windows inside so she could feel the breeze on her face, she’s been watching shows and playing apps about “outside”, and watching social stories about going outside as well. It was like she had done all of her research, deemed it “acceptable” – then finally actually headed outside at full force.

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She doesn’t prefer us to be outside with her at this point – I think we (not unlike her shoes) represent the possibility of unpredictability, and that causes her anxiety levels to go up. So, she leads us over to open the door for her, and then back to an office chair in the sunroom, – she holds our hand as we sit down, and then she heads out to explore the back yard.

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I’ve been lucky enough a few times to be invited outside with her (I know this because she smiles at me, grabs my hand, and heads out the door with me right behind). She loves the purple flower weeds the most, with sticks coming in a close second. I can’t even begin to explain the happiness, pride, joy, and excitement for the future that this seemingly small occurrence has brought to us.

My Advice for Parents of a Newly Diagnosed Autistic Child

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Our daughter’s initial developmental evaluation was honestly one of the toughest days of my life. She has severe, classic, (I say pre-verbal) autism… and she’s absolutely incredible. She is perfectly and unabashedly herself, and she has become one of my greatest teachers. Things are not anywhere near as scary or as daunting as they seemed in the beginning. Here are a few things I would tell parents of newly diagnosed autistic child:

1.) Breathe

Listen to me. It’s going to be OK. You’re going to be OK, and your child is going to be OK. I promise. Nothing has changed from when you walked in that evaluation room. He/she is still the child you’ve known all along, and you’re still you. The official diagnosis will only help you obtain the services that your child needs. I know it’s overwhelming right now but just breathe – take it one day at a time (one minute at a time if you need to!). Everything will be OK, and it WILL get better.

2.) Research Your Options

You may hear that one specific therapy is the end-all, be-all way to help your child – they have to have that therapy (whatever that may be) or you’re not doing all that you can for them.  The truth is…there are many different options out there in regard to what types of therapy you can try with your child. All autistic children are so incredibly different, so therapy options are definitely not a “one size fits all” approach. It’s also extremely important to read articles by (and talk to) autistic adults as well. Ask them about their previous experiences with therapy – ask what impact it had on them and how it made them feel. They’re an invaluable resource. PS: Don’t listen to anyone who tells you that your child cannot or will not be able to do something. No limits!

3.) Love, Accept, Support Your Child

This sounds like an easy one but you need to do all of these things for your child….. love them, accept them, and support them….as they are this very minute. It can’t be contingent upon whether or not they’ve hit specific milestones. I beg you not to spend your time mourning for the child/life that you may feel you “should have” had. I know it’s hard – but if you live your life that way – you will miss out on the beauty of everything you have right now!  Plus, our children pick up on everything: your body language, your vocal/tonal inflections, the way you feel, how anxious you are, etc. Even if we don’t communicate by speaking to one another – I promise you that our Little Lady knows that she is incredibly (and unconditionally) loved.

4.) Always Presume Competence

Listen…I know there are a lot of times when they’re not looking at you, and/or don’t appear to be paying attention – however, it is more than likely that they are. They’re constantly taking everything in. If your child is non-verbal, please don’t assume they don’t understand what others are saying, because again: chances are that they do. I talk to my daughter like I would any typical child her age. I ask her about her day, we talk about things I’ve heard she did at school that day, etc. She may not be able to answer yet but I know she understands. I believe it’s better for them to always set the bar too high rather than too low. Chances are they’ll surprise you when you least expect it!

5.) Create a New “Normal” For Your Family

Take all of your pre-conceived notions of what your holidays, outings, and “typical day” in general should be…. and throw them out the window. “The Key to Happiness is letting each situation be what it is – instead of what you think it should be”. I love that quote, it was given to me by our Sooner Start therapist (who is now a part of our family).  It’s so incredibly true – disregard tradition and create a life that works best for you and your family!

Vaccines

I get a lot of questions from people in regard to how I feel about vaccines. Just a heads up – when you ask me about vaccines (and typically do not readily accept my answer, anyway), you are:

  • Insinuating I knowingly did something to cause my child’s autism
  • Making it known that having your child be like my child is your worst nightmare

It happens a lot; and I’m sure you don’t think of it that way… but it’s actually incredibly hurtful when you think about it.

So here’s my answer:

Do I believe Lila’s autism was caused by vaccines – no. Do I believe children can be vaccine-injured? Absolutely. However, the rate of instance is so small that I believe it to be worth the risk. By not vaccinating your children you are putting them (as well as others) at risk from life-threatening diseases that had once all but been eradicated. And just to play devil’s advocate – what if vaccines did cause autism? Would you rather have a dead child, or an autistic one?

Please vaccinate your children.

Big Girl Bed

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…… and just like that she’s in a “big girl” bed  🙂

The Little Lady had started crawling over the front of her crib in the past week or so during playtime…. and then she started doing it at night…. and then crawling out in the morning-time as well. As daunting as it is, we figured it was finally time to try and convert her to a “big girl” bed.

With Lila (as is the case with the majority of autistic kiddos) – any sort of change or break in the routine can be extremely difficult for her. We thought about a few different alternatives, and decided modifying her current crib was the best option. That’s HER bed – she already feels safe and sleeps well in there.

Last night was the first night – and she did come back out into the living room a few times after I had put her to bed initially. We’re going to have to work on limit-setting again with this new change, and per usual it’s absolutely imperative to stay consistent. Once the bedtime countdown and transition song is done – it’s time for bed.

It will be interesting to see what this weekend brings – I hope you all have a wonderful weekend with your beautiful families! Lots of love to all of you.

The Little Things

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She’s stimming over the way the Grape Nuts look in the bowl – she makes me take a bite, then opens her mouth (to get me to open MY mouth) so she can see what’s going on in there!

She finds so much beauty and detail in things we typically see as mundane (or don’t even notice at all). I had never paid attention before, but the little pieces do look pretty cool bobbing up to the top, then sinking back down in the milk.