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.
I was thinking about ways we’ve been affected by becoming the parents of an autistic child:
There are so many – but here are just a couple of things I’ve been thinking about lately in particular:
1.) “Living is easy with eyes closed…”
Many years ago, I lived life with blinders on. Children with autism, cancer, birth defects, and other diseases and disabilities were just something that happened to OTHER people. I’d hear about it, think “oh, that’s so sad…” then go back to whatever else I was doing.
Now I know (and live constantly with the knowledge) that that could be us. It forces you to live your life in a very different way. It causes you to see those same stories now – and actually act to do something to help instead of just contemplating it. Nothing is taken for granted, and we very much live in the moment. Having been on both sides of the fence, I can honestly say it’s a happier way of being.
2.) “The Butterfly Effect”
Everything we do and say affects others. This was not a concept I thought anything about before we had Lila. I did what I wanted, when I wanted to do it. Go to the bathroom, open a bag of chips, leave the house at the drop of a hat, clean the house, etc. I am now acutely aware of what I am doing at all times, and how it affects others.
Seemingly simple actions such as opening a door, using a hair dryer, or trying to vacuum the house can send her into a sensory meltdown. It causes us to always be (at all times) very aware of the potential consequences of our actions.
Like I said, there are many ways we’ve been affected by Lila being autistic, these are just two of them. And both also happen to make us better human beings. Amidst all of the inevitable challenges we go through on a daily basis, there is so much light, love, and hope. I am always grateful for the lessons she is constantly teaching us.
I’ve been getting a lot of questions on both GI and sleep issues… I feel your frustration (and utter desperation!). I’ve been there (ask Janet), so I will say the following:
ALL of our autistic kiddos are so vastly different, as with so many things, what works for one may not work for another.
However, here is what has worked for us:
GI Issues
Lila has been through a battery of GI tests (catheterized to check kidney function, X-rays, an upper GI, dysphagiagram, and an endoscopy as well). Know what they have been able to tell us?…. absolutely nothing. They can’t find any physical reason for her GI issues – they attribute it directly to her autism, and the brain’s (apparently flawed) connection with her gut.
We have been holding steady for the past year or so with the best results we’ve had so far – and that includes: acid reflux medicine, prescription gas medicine, a daily dose of Miralax, multiple types of probiotics, and switching her from cow’s milk to vanilla almond milk.
You’re going to ask about diet (I know you are) J, and we’ve been there tried that. Lila has severe oral sensory issues and is what’s considered a “problem feeder”. She eats less than 5 “foods”. When we took her gluten-free, she stopped eating altogether. It was very scary, and not something we intend on trying again any time soon.
Sleep Issues
Holy smokes… let me say that Lila did not sleep through the night until after she turned 2 years old. It was brutal – I can’t even believe the impact that sleep deprivation can have on every single aspect of your life. We were up approx. 3 hours per night in the middle of the night – every night. Looking back at it, I have no idea how I still managed to make it to work every day.
As far as sleep issues are concerned, here is what has worked for us: a white noise machine, making sure no light gets into her room via the window, and creating a highly predictable bedtime routine as well, including a “first-then” countdown to bed-time.
Medication – we tried melatonin, we heard so many wonderful things about it, and I know it works really well for some children. It didn’t work well at all for us – we experienced increased night-waking, and what appeared to be night terrors as well.
At the recommendation of our pediatrician’s nurse, we tried putting Lila on Cyproheptadine (Periactin). For whatever reason, that has worked extremely well for us. We give it to her in her vanilla almond milk around 8pm. She still doesn’t go to sleep until 10-10:30pm, but she does sleep through the night. It’s been nothing short of a miracle, as far as I’m concerned.
***I’ve also been getting a lot of questions in regard to the floor-time/play therapy we use with Lila 24/7, along with the other components we throw in the mix from time to time (RDI, some modified ABA, TEEACH, etc) – and I will expand on that in the near future. Thank you all for being here and as always, lots of love to you and your beautiful families!
I’ve seen a few comments lately, and just so we’re clear – if you want to:
1.) Recommend that we put Lila in ABA therapy for 40 hours a week (and feel we’re failing her in some way by not doing so),
2.) Insinuate that there’s hope that one day she will look “normal” and no one will know that there’s anything “wrong with her”,
3.) Pray for her to be “normal”,
4.) Or if you feel that she is “less than” in any way in her current place in life…
This is probably not the page for you. She goes to special needs pre-K where she receives speech and OT – at home we’re a floor-time family. We use what she’s passionate about 24/7 to help her progress with speech, fine motor skills, joint attention, etc. – and it works extremely well for all of us.
We all work very hard over here – and if she doesn’t feel safe and completely loved – she shuts down and cannot learn. That’s who she is – and it’s beautiful, regardless of how much progress she does or does not make.
It is not our intent to stifle her beautiful little autistic self in any way, shape, or form. We actually join in whatever she’s interested in, and we stim with her! It’s encouraged – it’s a form of expression/communication for her. We just want her to be happy, and to help her become the best Lila she can be.
Just wanted to make sure we’re all on the same page – and if not – our story is probably not one you’ll want to follow. Lots of love to you and yours! 💖
Happy Friday, All –
We got the best report from Lila’s teacher today:
They’ve started using an “I Need a Break” picture card there at school for the past two weeks. When she starts pinching, scratching, getting really upset, etc. they show her the card, then lead her to a small rocking chair in the reading area to give her time to self-soothe and calm herself down.
It has worked so well that she has started using it…. on her own! Recently when she got frustrated/mad at the math center, she just stopped – walked over to the reading center and sat down in the rocking chair all by herself. She knows her limits and is trying to calm herself before it turns into a meltdown.
They leave her in the quiet area until she is calm, then they go over and thank her for calming her body, then they go back to the activity they were working on before she got upset.
Absolutely incredible, as always – we’re so very proud of our Little Lady!
Hello All!
Anyone else glad that the Holiday Season is over? 🙂
We’re all back in our normal routine now, and trust me – no one is happier about it than Lila!
Two of my favorite things from this week:
Lila is saying more and more words, and this week there were 2 that caught my attention. Not the actual words per se, but the manner in which they were used.
One evening as she was coming over to me while I was on the couch, I said “Hi!”, she got up on the couch with me, looked me in the eyes, and said “Hi!” – we went back and forth with it for a bit – those moments of incredible connection always just literally make my heart melt.
Another evening this week while we were there alone, she decided she wanted me in her new playhouse. She didn’t say anything, but she pulled me in there by the hand. I sat down and thanked her for inviting me into her playhouse. I was excited and doing her patented happy stim move, so she got excited – then she looked at me – smiled – and said “mama”. She smiled at me one more time, and she was off!
So excited to watch her continue to learn and grow – we’ve all come a very long way together, I can’t wait to see what 2016 has in store for all of us!
A couple of things from the past week or so…
These two ❤
Our Little Lady had a LOT of anxiety about the schedule being so haphazard over Christmas break. She even tried to scream and push Janet out the door at one point (very uncharacteristic of her). However, after she was able to calm herself down, she was so so so happy to see her Janet!
Our friends the Austins came by for a visit as well:
I just love these pictures of Lila, John, and Sarah so much. It’s hard to watch your child desperately want to interact/play with others, but not quite know how to do so. They all did such a great job in order to make it work!
I can’t keep up with her anymore! All of the floor-time/play therapy we’ve worked so hard for the past 2 years is paying off in so many ways right now, and seemingly all at once. Because the foundation of how we’ve worked with her has always been 24/7 floor-time therapy, she not only continues to flourish – but she genuinely enjoys each new step forward. She knows how much she is loved – and that she is perfect as she is. We’ve always mimicked her actions as well – we spin, flap, dance, etc – that has created an incredible amount of trust between all of us, I’m so grateful that Janet taught us how to work with her so well.
As always there have been a few steps forward, and a couple of steps back as well.
Positives:
We’re fairly certain she has apraxia, but she is trying SO hard to mimic what we’re saying nowadays. She gets positively giddy when she says something we understand (and we do, too!). Other people may not be able to decipher these quite yet unless you’ve been around her, some of more clear than others. New additions include: hello, hey, thank you, today, no, cat, duck, roar, meow, octopus, and elephant!
She’s gained a new food – curly fries (only from Jack in the Box). It’s not the healthiest, but it’s solid food – and we’re thrilled. She’s been pulling apart pom-poms and making pom-pom fuzz. She loves to roll it between her hands as a fidget and enjoys having it pinched apart and tossed down onto her face as she lies down.
Lining up figurines: she loves it! She got a bunch of new figurines for Christmas to add to the lineup as well! Cardboard boxes/her new playhouse: she loves them as well – our living room may or may not have 2 cardboard boxes AND a playhouse in it at the moment 😉
We recently mounted an iPad Air with an AAC app only on it (GoTalk Now) to the wall next to her PECS board. Hoping this will aid in a transition from cards to an AAC device.
Current Challenges:
She cannot STAND the back door (or any door for that matter) being open. It creates a lot of anxiety for her. If Bill or I go out into the back room she gets extremely upset as well. Picking: she has started picking at her fingernails, toenails, and lips. She’s done some damage and now won’t tolerate getting her nails trimmed anymore (even with the iPad) – working on a new strategy to try this weekend.
Holy smokes – code RED, people. I’m sure it’s a combination of Christmas and her routine being completely different, but it’s been rough. She’s has some aggression issues, and she tends toward the iPad more often than usual. The lack of routine has really grown her for a loop – it’s been very difficult for her. Ready to get back into our regular routine!
Sending lots of love to all of you, I hope you and your families have a wonderful New Year!
Ring-A-Round the Rosie
Pocket full of Posies
Ashes, Ashes
We all fall down!
I hadn’t ever thought about that nursery rhyme very much until last night. Bill and Lila were in the living room – Bill grabbed Lila’s hands and they skipped in a circle. After a few times around, Lila came over and grabbed my hand – then led me over to where Bill was. She stood there between us for a second, grabbed my hand, then she grabbed one of her Daddy’s hands…then we all started skipping in a circle. I started singing “Ring-A-Round the Rosie” and she just LOVED it! She giggled so hard when we would all fall down at the end, clap, and say “yay”!
She continued to come get us and lead us to the same place to do the same thing again and again at different points in the evening. She would prompt and say her version of “ready”, then we’d say “set”, and she’d say “gooo!”. She would even say “up” to get us to stand up and start over. It was like a dream. I love when things like that happen, and I’m so fully aware of just how incredible it is even while it’s happening.
Two years ago she had regressed to a point where she would barely acknowledge us – after 730 days of 24/7 floor-time/play therapy, meeting her halfway, and always following her lead – the three of us were all singing, skipping in a circle, holding hands, laughing, and totally connected with one another. That folks, is nothing short of a miracle.
Dancing With Autism 