All posts by melindabrown79

Melinda Brown is a wife and mother from Oklahoma City. She loves to dance, scuba dive and travel – and used to do so frequently back when she had free time. She works full-time during the day and does her best to be the best therapist-parent she can be in the evening. She can be reached through her website: www.dancingwithautism.com or on her facebook page at www.facebook.com/ourdancewithautism

How We Got Lila to Wear Her Glasses

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I’ve been asked quite a few times about HOW we get Lila to wear her glasses. ASD + Sensory Issues = Glasses Disaster. Truth is – 6 months ago Lila would scream and completely LOSE it just at the sight of her glasses. Now we’re up to 3-4 hours per day with her wearing them.

All of these kids are different – but I can tell you what we did in case it might help any of you have little ones with glasses who also have sensory issues.  This particular idea was tailored to Lila by our SLP (and resident Mary Poppins) from SoonerStart, Janet. We had a ton of trial and error, and here is what eventually worked for US:

A year prior, Lila had been wearing them for an hour at a time – we moved way too fast, and she regressed with them: big-time. SO we re-introduced them very slowly. We put them in plain view randomly around the living room, eventually we moved them to the coffee table (Lila’s “hub” for everything).

Next we picked a TV show that she LOVES. “Signing Time”: the alphabet episode. It was a huge motivator for her, especially when Rachel was singing. SO when Rachel would start to sing, we would pause the show and say “Time to put on your glasses!”, quickly put the glasses on her, then hit play on the DVR (sometimes holding her arms, waving them around, etc. to distract her).

If she pulled them off her face, we would pause her TV show again. I’d say “What happened? Ohhh, you took your glasses off. You have to wear your GLASSES to be able to watch Rachel!”. Then we’d put them back on and immediately hit play as soon as they were back on her face. Eventually she GOT it, and was fine with wearing the glasses, but only in parts of the episode where Rachel was singing.

Slowly but surely she started to leave them on for short periods of time. The rules stayed the same – I would only put glasses on when Rachel started to sing, and she was allowed to take them off when she wasn’t singing – no pressure (she FEELS that, she is so intuitive and so sensitive to what we are thinking/feeling).

She has now realized that she can see better WITH the glasses, which leads to her leaving them on for longer periods of time. We have our good days and our bad days, but I don’t force her to wear them, and that has led to her wearing them now more than ever. She has to feel like it is HER idea for it to be successful.

The eye doctor recommended at one point for us to MAKE her wear them, use atropine drops in her eyes so she couldn’t see at all without them, etc. We had to make a decision on how to approach this, and there were only two options: go head to head with her, or take the long way around. I knew if we went head to head with her on this – we would lose. Every single time. Lila is incredibly intelligent, and extremely head-strong. We either had to trust the doctor, or trust our knowledge of who Lila is and how she works.

This route was VERY lengthy and incredibly labor-intensive (we HAD to stick to it for it to work, pause the show every single time she took the glasses off, etc.) Consistency is crucial, and I feel that it has been incredibly successful with her. We will continue to try and work our way up to more and more time with the glasses, for now we are just incredibly proud of the Little Lady, she’s come a very long way in such a short amount of time (on many levels).

2014 Family Photo Session #1

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FYI: The picture above was our Christmas picture taken last year. I have NO idea when the photographer got this shot, because about 1 minute into our 15-minute session, Lila had a complete and total meltdown. She was NOT a happy camper (until we were done and heading out the door – then she seemed to be pretty happy about the situation).

Today’s Topic: Family Photo Sessions:

This past weekend we had our first family photo session of the year  – we have scheduled TWO this year to try and make sure we get at least one good photo! Because honestly? The outcome all depends on her mood and the situation on any given day. This past weekend was the first one scheduled – a 15-minute “mini session” out in a field. We got there and took our places next to the vintage truck with a fall-type setup including a multitude of pumpkins.

It was immediately apparent that Lila was NOT having it. The sun was hurting her eyes, she didn’t want to look at the camera or smile, and she most certainly didn’t understand why the Hell we were out there when we could be perfectly happy sitting at home.

She wouldn’t cooperate AT ALL (why would she want to look at the camera when there are so many pretty colors and pumpkins if she looks the OTHER way?!?).  So when Bill was holding her I took it upon myself to run behind the photographer and started jumping up and down, waving my arms, crowing, and dancing like a crazy person. She loved it – super stimmy = big smiles. It worked! Then Daddy handed her off to me and he went behind the photographer to dance and be silly – again Lila was stimming like crazy, and ended up accidentally hitting me in the face a few times! I think we got a decent shot though…(I hope!).

The family photos of all three of us are always next to impossible… since neither one of us is behind the camera acting like a raving lunatic. Bill and I kept trying to switch sides, bouncing her up and down, trying to get a smile, trying to get her to look up – the whole thing was 15 minutes of absolute insanity. Once we were done, I felt like we had just run a marathon. I was SO proud of her, regardless of what pictures we end up with. Things like that are so incredibly difficult for her, and she did the very best she could that day.

As we piled into the van to head home, the next family took their place for photos. The Mom and Dad walked over and sat in the truck bed, and their two little girls stood where the photographer told them to as well. They all looked at the camera, and started their photo session. I couldn’t help but think “SERIOUSLY?!?” because it’s THAT easy, right???

Family Photo Session #2 is slated for next Monday… wish us luck!

One Year Ago Today – The Developmental Evaluation

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One year ago today, Bill and I took Lila to her developmental evaluation with SoonerStart. That initial assessment at around 14 months is the one that hit Bill and I like a runaway freight train.

We had done the research, and we could see the writing on the wall – but to have someone ELSE say the words?  To see how “below normal” her scores were in every single category…. it absolutely gutted me. I will never forget that drive home with my husband. I knew our lives would never be the same.

Honestly, it’s extremely difficult for me to look at the “big picture”. It’s just way too much to handle, and the future has way too many unknowns. But when I DO stop and think about where we WERE in October 2013, and where we ARE in October 2014, it feels nothing short of miraculous:

October 2013

  • Lila would not interact with us – no real communication whatsoever
  • She would not respond at all when we spoke to her
  • She would wander around the house aimlessly, stuck in her own little patterns and routines
  • She flipped objects constantly and would hardly ever look up at us
  • She only showed interest in electronic toys – toys that light up and make sound, or spin
  • She didn’t seem to notice or care when we left the room, or left her at daycare
  • We couldn’t take her outside much, and if we tried to set her down outside she would lose it
  • She was not able to sit in a stroller at all (instant meltdown), so we had to carry her everywhere

October 2014

  • Lila loves to play with us – she will come find us in another room just to interact
  • She is using a modified approach to PECS cards: she can tell us when she is thirsty and when she is hungry (and even what she wants to eat) She loves bringing us the cards, and sometimes uses them just to have that positive interaction
  • She babbles constantly, and has started to repeat words or sounds AND display motor imitation that she hears and sees both from the TV and from her Daddy and me
  • For the many things she is unable to communicate yet, she finds little ways to try and get her point across (ie pushing us to where she wants us to go)
  • She loves board books, bouncy balls (she will roll a ball to us!), she plays with balloons, etc.
  • We can go places with her (although it’s still challenging) – restaurants, stores, even the park. She will even sit in a stroller now.
  • She’s using the iPad to play games and even create little works of art!

How can you thank someone enough for GIVING you your child back? I know Bill and I are the ones who do the work at home with her, we involve therapy (in one way or another) into almost every single one of our interactions with Lila.

BUT…if it weren’t for Janet…. it makes me all teary-eyed just thinking about it. The truth is, if it weren’t for Janet – we wouldn’t have the little girl we have today. We will never be able to thank that woman enough. There are just no words. She gave us the tools, showed us HOW to get into Lila’s little world, and to slowly (but surely) help draw her into ours.

We still all have a VERY long road ahead of us, but we will continue to take it one day at a time, and celebrate each and every step she makes. No accomplishment is too small – we don’t take ANYTHING for granted at our house!

We didn’t listen… and that has made ALL the difference.

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We heard it at every turn: “She’ll be fine”, “What are you so worried about?”, “My friend’s kid didn’t talk till he was 4”, “She seems normal to me”, “You’re being paranoid”, “Don’t worry, just give her time”.

But I knew. I knew Lila was different. She was our first child and I still felt it was fairly evident from a very early age. Something wasn’t right…. she had terrible colic from the beginning, and would scream for hours and hours on end, she had GI issues, and sleep problems as well.

The closer she got to 12 months old, the more evident it became. Lack of eye contact, lack of response to our voices – I honestly thought she was deaf. She was never a fan of people other than Bill and me, and she was a mess if we strayed from our normal routine.

Along this journey we were accused of “creating the problem”, “self-diagnosing”, and a myriad of other incredibly hurtful accusations.

Through it all, Bill and I stuck to our guns, which was NOT easy to do. As a Mother, nothing made me feel worse (and more “Munchausen-y”) than people insinuating that we were “self-diagnosing”, like we WANTED something to be wrong with Lila. It absolutely killed me. It would have been SO much easier to bury our heads in the sand and pretend nothing was wrong. Trust me, there were times that we both desperately wanted to do that.

But Lila needed us, and we were determined to do every single thing in our power in order to find out if something was actually going on with her (and if it was) to confront it head-on as soon as possible. If we were wrong… GREAT! No one wanted that to be true more than Bill and I did, trust me. If we were onto something – Lila needed our help.

After her initial assessment, Lila started therapy with SoonerStart at 15 months of age. At that point, she would barely even acknowledge my husband and me. She was often in her own little world. It was scary at times, when I couldn’t get to her. I was terrified that we’d lost her. She was officially diagnosed with Autism Spectrum Disorder at 21 months old.

We still have a very long road ahead of us, but we have come such a long way in the past 11 months – and we are so beyond grateful. The little girl we have now is NOT the little girl we would have at this point had we not stayed true to ourselves, to Lila, and worked with her every single day for the past 11 months.

BECAUSE we didn’t listen to everyone else, Lila’s future was forever altered – in a positive way. Early intervention completely changed the trajectory of her brain and social development. I cannot say enough about Early Intervention and how important it is. My only regret is that we didn’t know more and start prior to 12 months of age.

If you KNOW in your gut that there is something different going on with your child – please listen to that voice. Don’t give up no matter what. It could very well mean all the difference for them and their future.

Stop – Slow Down and Breathe…

Jackson

Sometimes I feel like our world is spinning so fast – constantly in motion – filled with never-ending chaos and so many things to do.

Somebody needs something from me in almost any given moment during the day (and night), so that’s typically what I’m focused on – the task at hand whatever it may be.

We live day-to-day; we HAVE to in order to maintain some semblance of sanity. The overall bigger picture is way too overwhelming to even attempt to take in all at once.

Well this past week I was forced to STOP everything for a minute. I got a serious reality check.

I noticed that one of our cats (Jackson) looked like he had lost some weight and was acting lethargic.

I stopped everything – took a deep breath… and really LOOKED at Jackson.

He looked horrible; very, very sick – how did I NOT notice this before? I see him every single day…

I thought about it a lot… and the truth is that while I’m snuggling with the cats at night, attempting to focus on TV, or even just talking with my husband – somewhere in the back of my head I’m CONSTANTLY thinking about Lila.

A whirlwind of topics is constantly swirling around in the background of every single thing I do:

Autism… the latest research articles and studies – Are there new things we should be trying? What are our therapy goals for this week? Have I found a Halloween costume that’s sensory-friendly enough for Lila? Have I done the laundry, cleaned up, scooped the cat litter, fed the pets, paid all the bills, got all the groceries we need, given Lila all her necessary medication, worked on glasses time, PECS cards, motor and vocal imitation, taken my pills, at least attempted to exercise today, and got everything ready for tomorrow?

It’s all so structured, our routine – and ridiculously fast-paced – never a moment to rest. We have to be “ON” 24/7, 365 days a year – and sleep deprivation only adds to the insanity.

I need to STOP researching on my phone at 10pm and just truly “be” with my husband instead.

I need to STOP rushing around trying to clean like a mad-woman in the 30 minutes I have to myself after Lila goes to sleep.

I need to just STOP…. breathe… and slow down.

Definitely a lesson learned. Jackson was diagnosed with hypothyroidism and a UTI, thankfully it can be controlled with diet and medication; and I’m very grateful that the cost of this lesson wasn’t much higher.

*Pssst!* Hey you… yes, YOU!

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*Pssst!* Hey you… yes, YOU!

I know you’re emotionally and physically exhausted – tired in a way that is far beyond what you ever could have possibly imagined.

I know it’s hard for you to go to sleep at night – because you can’t turn your brain off – and if I looked into your mind right now it would probably look like a computer with 5,000 browser screens opened at once.

I know it’s HARD. This is the hardest thing I’ve ever done to date. You have to be “on” ALL the time, 24/7.

I know you feel guilty (was it something I did? Something I ate that I shouldn’t have? Should I have not gotten that flu shot? Could it have been the vaccines?)

I know you ALSO feel guilty for feeling guilty. Your child is perfect, and there’s no sense in worrying about why things are the way they are…

But you know what?

You’re doing a great job 🙂

It won’t be easy – but it WILL be worth it.

Bath-Time Meltdowns

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For the past week, we’ve been in the throws of a bath-time meltdown phase.

Bath water starts, Lila gets super-anxious. When I come to pick her up to take her to bath (and sing our transition song), she completely loses it.

After a few failed attempts at distraction, I came up with the following: put her balloons in the bath (she loves them). NOT for her to play with, but to help re-direct her focus onto getting those balloons out of the bathtub (they don’t “belong” in the bathtub).

She gets busy trying to get them out, and inevitably sits down while doing so. Once she sits down, it’s like “Hey, wait a minute – this isn’t so bad”, which buys me enough time to get her clean.

The time this happened before, I solved the issue with the fuzzy hair twisties. She would focus on picking them out of the bowl I had them in, and I would say what color she had in her hand.

Hoping this works for a while, and already trying to think of some new distraction techniques for next time!

Nothing Taken for Granted

A little girl at Lila’s daycare (same age as Lila), dragged me by the hand over to play with a toy she was interested in. She told me what the cat says “meow!”, what the dog says “woof woof!”, and showed me HOW she wanted me to play with the toy (made my jaw drop!).

She also hugged me multiple times and called me “Mommy”. No matter how many times I see neuro-typical child behavior, it never ceases to amaze me (Lila is our first and only) It is truly UNbelievable how much EASIER things are for typical kids than they are for Lila. I so wish things were easier for her. Those children just naturally do the very same things that take us months and months to work on.

I hope their parents all know what an absolute miracle each one of those behaviors are and that they don’t take them for granted!

Moments That Come Out of Nowhere…

Even though we live this life, and I run a Facebook page about it – there are still moments that come out of nowhere and feel completely surreal to me.

Today I was reading a beautifully crafted, well-thought out e-mail from our therapist in regards to a little lesson she can give to the kids at daycare about autism…

A therapist is going to daycare to explain to the other children why Lila is so different – that she – our daughter – has autism.

I felt like I was having an out of body experience, having fleeting thoughts of the “before” times, when thoughts of this neuro-developmental disorder had not yet entered into our daily lives.

Yet here I am today, here at my full-time job: trying to sneak-read “Life, Animated”, work on new PECS cards for Lila, prepare for our home visit from the OK Healthcare Authority in regards to TEFRA approval, Google “autism” news/ articles/ studies as I have every single day for the past year and a half, and help Janet plan a lesson to help teach the other daycare children about autism.

I mean….. wait, what?

There never has been (and I suspect never WILL BE) time to truly digest ANY of this, and that’s probably for the best. We just keep going, keep working, keep fighting – always keep moving forward.

Introduction

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Hello, Everyone! I thought I’d do a quick “about us” for those of you who have joined us.

We knew our little Lila was different from the get-go, even though she was our first and only child. She was extremely colicky and would scream for hours on end. Terrible GI issues, acid reflux, and sleep problems from the beginning.

My husband and I live in Oklahoma (service-wise it is unfortunately one of the absolute worst places to live with a child with autism).

However, we got involved with SoonerStart when Lila was 15 months old (she just turned 2!) and we have the BEST therapist/angel ever to help both Lila and us through this journey (Janet). She is our Yoda, our Mary Poppins, you name it – and we’re extremely lucky to have her as an integral part our lives.

11 months ago Lila would barely even acknowledge my husband and me. She was often in her own little world. We’ve come such a long way since then, and we’re so grateful. It’s taken a lot of hard work by both Lila and us to get to where we are now. Most all of our interactions have some sort of therapeutic component, and it has worked wonders.

Lila is the most amazing human being I’ve ever had the opportunity to meet. She’s incredibly smart, beautiful, funny, and such a little fighter. She has to work so hard just to be “okay” in our world. I’m so proud of her, and she teaches us something new every single day.

That being said, there are a LOT of challenges to having a toddler with autism. I created our Facebook page (and this blog page) to help maintain my sanity, and to connect with others in a similar situation.