Follow by Email

Tuesday, October 17, 2017

All the Ribbons of the Rainbow

hat hair is not currently in the DSM
I can't remember what I've written and what I've left unwritten.  I'll write this chapter style because there is a lot to unpack, and it's all related and also completely separate...So let's hop in the wayback machine and adjust our dial to late winter of 2016...

Chapter 1:  A Lil Help Please

Because of the severity of Lily's disability, she qualified for a case manager through her ID (intellectual disability).  That person put me in touch with an agency.  That agency suggested I solicit my doctor's office for a "letter of medical necessity".  That letter, forwarded to Lily's Medical Assistance insurance got her approved for a home health aide.  Basically they would pay for an aide to stay with Lily 4 hours per day on school days that I worked, and 10 hours per day on non-school days that I worked (ie. the summer). 

Amazing benefit, right?  Except that the problem isn't even getting approved for the benefit.  The problem is finding someone to actually provide the care authorized BY the benefit.  Nobody had anyone to offer.  Six agencies told me they would recruit for the position.  Meanwhile my parents and in-laws continued to commute to my house for daily bus duty.  I speculated that maybe because there were limited hours...or the pay offered through insurance wasn't enough, or the hours were weird.  I wasn't sure, but wasn't getting a lot of interest. 

After two or three months, I finally had a string of interviews (they call them "meet and greets").  The first one didn't show up to the meeting.  No thank you.  The second one didn't show up to the meeting.  No thank you.  The third one showed up to the meeting and seemed quiet, but was fine.  A fourth meeting was scheduled but canceled before the meeting. 

Four interviews.  Three no-shows.  The person who "showed up" was hired.  It made me extremely uncomfortable.  But...she was the solution. 

Okay, let's put a pin in the aide situation.

Chapter 2:  Hidden Results

Around the same time as I was getting Lily's ID "label", I had reached out to Lily's developmental pediatrician to ask him about Rett Syndrome and Lily.  We had gone back and forth a few times about it in the past.  He asked me if we'd ever done the testing.  I told him I thought we had, but that the results had been negative.  Over the course of time, I had looked through all of Lily's genetic testing information and eventually came up empty despite feeling CERTAIN that we'd done the testing. 

I reached out to him again and asked if he had access to any other genetic test results that I didn't, because I couldn't find any record of it being done.  In March or maybe a little later this year he finally got back to me via phone to tell me that he found it.  And it was positive. 

And of course I was like...what.  the.  actual.  fuck.  dude. 

It turned out that yes, he'd ordered a genetic test for Rett for Lily back in 2013 or 2014 and that the results HAD come back around the same time.  And that they had been positive for the genetic marker for Rett.  So...what happened?  Why did I always think that she absolutely had been tested and absolutely didn't have it?

It turns out that the genetics lab had sent a cover letter to the doc indicating the preliminary findings, with promises of a report to follow.  The doctor filed the cover sheet and waited for the report...which never arrived.  He forgot the cover.  Forgot he was waiting for the report.  And everyone moved on.

But Lily continued to show some pretty stereotypical Rett's traits...hand wringing, pressured breathing, etc.  And, forgotten results notwithstanding, the doctor treated Lily as if she DID have Rett, or at least "prescribed" supplements that were supported by science for the treatment of patients with Rett Syndrome. 

So we found the cover sheet.  Genetics lost the report.  It's gone.  But Lily has Atypical Rett Syndrome.  Atypical in all the best ways...she CAN walk.  She does NOT need a feeding tube.  Those sorts of atypical things.  But with the new Rett diagnosis came a referral to meet with a geneticist.  I started looking into setting up an appointment.

Chapter 3:  Seize the Day

In April Lily's school reported her first seizure activity.  Absence seizures.  She was unresponsive for a minute or two, rocking rhythmically and drooling.  Then she would snap out of it and be okay again a few minutes later.  They loaded her in an ambulance and I met her at Children's Hospital ER. 

A long day in an emergency room followed. 

Fun fact:  Children's hospital does not have large pullups for children.  So, if you are meeting your child at the ER and somehow did NOT pack pullups in your car for work, they have no way to control potty situations.  Might as well duct tape a fucking roll of paper towels to your daughter, sir...we at "Children's" hospital ER are not equipped to handle your special needs.  Dicks.

They wouldn't let her eat.  Or drink.  Had tests to run.  It wasn't fun.  Ultimately left the ER without any sort of confirmation of the seizure itself, but other tests that came back "normal". 

We also left with a recommendation for a new sleep-deprived EEG to be conducted, and a sedated MRI, along with a followup with a neurologist.  Lily's developmental pediatrician seconded the recommendation.  I began to look into setting up those appointments.

From April to August she would have another two or three seizures, and I finally witnessed one myself.  I didn't love it. 

Looking back, people have been reporting seizure-like activity all the way back potentially to her being three or four.  It was always maybe once or twice a year someone would say she would just sort of stare and rock and drool and be unresponsive, but we'd never actually witnessed it, nor had a nurse (like the school did in April) witness it.  So, although we DID do a sleep-deprived EEG years ago (2011 to be precise) the results then were inconclusive.  The saw no seizure activity.  And the followup recommendation they made was met with a polite but clear "fuck you." At least in my head.

Chapter 4:  Appointments

I don't remember what was first, and I'm too irritated right now to look it up for accuracy's sake.  Lily did a sleep-deprived EEG.  She did a sedated MRI.  She met with a neurologist and a geneticist. 

The results of the EEG were...inconclusive.  According to Lily's developmental pediatrician...they showed "normal background slowing consistent with someone with Lily's diagnoses".  Only this and nothing more. 

The results of the MRI showed a Chiari type 1 malformation that was not shown on a previous MRI Lily had when she was like 2.  That generated a recommendation that she see a neurosurgeon.  I scheduled that appointment.  We visited. 

I will wrap your head around all this awesome appointmenty goodness momentarily. 

I met with the Geneticist.  Did you know that 90% of people with Rett Syndrome have seizures?  No?  I didn't either.  90.  Percent.  So yeah...she seconded the idea that Lily meet with the neurologist, who I was already scheduled to meet with, but it was wayyyyy out in the future because apparently it's all the rage to have a neurological condition.  I asked about followup.  She said, "I'd love to continue to follow Lily, most of my Rett kiddos end up being followed by neuro though."  k.  She recommended a bone density scan, and some other stuff.  I haven't looked into scheduling that yet.  At this point the number of appointments that branch from each previous appointment requires a fucking diagram.  hmmm.  Maybe I'll do that.

I met with the neurosurgeon.  Chiari Malformation isn't really a thing in kids.  I mean it is and isn't.  They did this study in the 50's.  All these people who died.  They found this statistical incidence of some measurement ratio in the brain.  Like...these people all shared this ratio in their brain stem and it was when measurement X exceeds such and such a percent of measurement Y...we shall call this ratio a Chiari Malformation. 

But it was a study done on adults.  And there is no data on children.  Soooooo...when MRI technicians see this magic ratio, they spike it out and a neuro-surgeon magically appears to follow your child through the rest of her days like you said "Bloody Mary" three times in a mirror.  Symptoms to watch for...loss of balance, dizziness, head banging, etc.  We don't see that. 

I asked about followup.  She said, people follow up yearly and get a new MRI every five years.  But if there are no symptoms, we won't really have anything to discuss.  I said...okay...so a year from now can I just reschedule for the following year?  "Yes.  That would work."

And then I met with the neurologist.  She put a giant purple ribbon on the entire encounter by telling me that because Lily two or more seizures we qualified for the "Epilepsy" package!  So it turns out that by virtue of Lily's seizures she's considered to have epilepsy.

Here are some things to think about that maybe I never thought of before...Don't leave Lily unaccompanied in the bath (in case she has a seizure and falls under the water) ...or in the swimming pool (jesus...not that I ever would)...or really...anywhere that she could fall and get hurt in mid-seizure.  ALSO...we're going to give you an emergency medication in case her seizures last more than five minutes.

Also also...we need to do a prolonged EEG to see if we can observe her seizures to better prescribe seizure medication for her moving forward.  Okay...but doc...doc...hold up.  Her seizures have all been pretty benign.  I mean...she just sits and rocks and drools.  No thrashing or tongue biting or whatever.  Why even bother prescribing meds.  What can it do for her?  She only has one about once every three months if that, and when she does...she's recovers in a couple minutes and is good as new.

ohhhhhh...yeah...about that.  We have this little thing in the world of epilepsy.  Probably you haven't heard.  It's called SUDEP.  In order to minimize the risk of SUDEP it's important that we get her seizures managed. 

Oh...okay..what's SUDEP? 

Uh...well...it stands for Sudden Unexpected Death from Epilepsy.   Fan-fucking-TASTIC!  So yeah...

So yeah, we need her to be medicated.  So I asked whether the results of a prolonged EEG would dictate which med she took.  The doc more or less said that odds are it will be Depakote, but it might be this other drug (can't remember).  But before they can prescribe Depakote they have to first do a POL g test because if the results of THAT come back positive, then they can't use Depakote.  So I'm on standby while they negotiate with the insurance company to see if they can get the test covered. 

Chapter 5:  Revisiting the Aide Situation

In September my aide quit.  Awesome.  It'll be sooooo easy to find a replacement.  (spoiler alert...I haven't yet found a replacement).  A week after my aide quit we had a meet and greet with an aide.  Again...she showed up.  Again...I wanted to proceed.  I took the day off on her first day to go over stuff with her.  She didn't show up to get Lily off the bus.  Thank god I was there.

It was probably for the best anyway, because it turns out, an aide can't legally give Lily any medication...including the emergency seizure med already in my house (for a seizure lasting longer than five minutes).  So even though she'd have been covering Lily...once the med was prescribed she would have had to get replaced by a nurse.

I had to reach back out to the doc for a NEW letter of medical necessity including the NEW diagnosES so that the insurance could review and approve (they did...and did) a NURSE in place of an aide. 

Soooooo...currently looking into the nurse situation.  To date...One nurse interested in a meet and greet...failed to show up.  In her defense...the agency indicated she had to go to the hospital.  That was two weeks ago.  She must be REALLY fucking sick.  That agency offered me a male nurse instead.  I politely declined. 

I was super excited to take a half day off today to do a meet an greet with another nurse that was interested!  But they called this morning.  She took someone else's case first. 

If you're keeping score at home that's six no shows.  This morning's no show made me a lot sadder than I expected it to.  I think I got my hopes up (the nurse thing has gotten more bites in less time than the aide thing ever did) but basically I'm still in the position where the one person who actually makes it to an interview and shows up for work...gets the job.  I feel EXTREMELY comfortable with that.  SARCASM!!! 

Meanwhile my parents have been covering the bus drop offs and I've been attempting to work afternoons from home...which actually works pretty well, but does NOT have the blessing necessarily of my boss's boss and I'm worried that at some point it'll come to a head. 

I'm frustrated.  I'm anxious.  I'm worried.  I'm upset.  I'm tired.  I'm standing. 

A friend of mine said this morning when I told her about the latest fucking no-show..."what now?"

And I told her, and I'll tell you...

What now? 

Recover my mood.  Reclaim my patience.  Breathe in.  Breathe out.  Follow up with agencies.  Wait.  Beg favors from family.

Local nurses looking for work?  I can actually guarantee you a job with any of the agencies that staff this shit.  Insurance dictates the pay, but it's work.  Inquire within...

Fin...

Epilogue:  I've been  meaning to write about Rett for a long time.  But the cascade of new appointments and diagnoses all needed followups to understand and unpack.  And each new appointment generated NEW appointments and diagnostic followups, and it never seemed to coalesce into "the big picture". 

So now it has.  I mean...I still have bone density scans and other stuff to do, but basically it's a relatively clear picture at this point.


Emma cut straight past the bullshit to a spectacular question..."So does this mean Lily doesn't have autism?"

For 8 years (seven?) I've been blogging about autism, participating in autism groups, even leading them.  And here we are...not...autism?

The neurologist indicated she is still on the spectrum, officially.  I guess it would be difficult, especially since Lily's Rett is atypical, to separate what is Rett and what is autism.  And certainly the symptoms put her squarely within the DSM's current guidelines.  But Rett IS genetic.  You CAN run a "simple" genetic test and KNOW that your child has it.  There's no grey area.  No refrigerator mom bullshit.  No engineer dad bullshit.  No internet caused it bullshit.  No overweight moms caused it bullshit.  It's just a genetic anomaly...like Down's Syndrome.  

But yeah...Lily is still autistic...

...with Rett, epilepsy, and a chiari malformation, and no fucking nurse.  I'm going to run out of room on my chest for all these awareness ribbons.

Monday, September 11, 2017

Anniversaries

***The first half of this was written a couple weeks after Leslie passed**

I don't know how to do this.  There's too much ground to cover.  Eulogize?  Explain?  Vent?  Maybe all of the above.

My best friend...my wife... passed away on April 7th.  I didn't have a lot of time to prepare for it, but I suppose I had more time than most people do.  She'd been sick for years.  Cancer. 

I know, fuck cancer, but I don't even really hate cancer.  I just hate the circumstances.  This was round three.  The first two times we knew we'd beat it.  But it was like that cat in song that just kept coming back the very next day.  Always a sucker punch away.

It all started with a cat, actually.  We got Emma a cat.  I'm allergic.  Leslie always said, "I'm not allergic to cats, just dogs," but when we brought the cat home, she started coughing and wheezing just like I did.  She didn't like her PCP (primary care physician) so she hated making appointments, but my doc gave me Singulair and I started taking it and I got better.  She finally caved in and got allergy meds too, but she didn't get better.

We finally went to the doc and had an x-ray that showed fluid in the lining outside her lungs.  I can't make this super medical or complicated, or this post will be impossible to read, but where most people inhale and their lungs expand into the empty lining around their lungs...Leslie's lining was slowly filling with fluid that wouldn't allow her lungs to expand into it and she couldn't breathe.

They biopsied the fluid and it was cancer.  "But the cat came back the very next day..."  Metastatic breast cancer.  I made the mistake of googling what 'metastatic' meant.  Leslie didn't.  She didn't like to know the odds against her.

Scans/tests/new chemo...pleural drains/dressing changes...it got worse.  A couple months later she switched chemos and things started to stabilize.  But then they didn't.  And then the other lung couldn't expand.  And it got harder and harder for her to breathe.  And then she was wearing oxygen.  And then we were turning the oxygen up higher.  And higher.

It seems like that process took forever.  It seems like she was on oxygen for years in hindsight.  But she wasn't.  I think I/we were so busy reacting to symptoms that we forgot to tell people she was sick again.  Or maybe we were just tired of giving people the same bad news all over again.

She started working from home when she couldn't climb the stairs at work.  She never made it back.  She worked from home for months.  On good days she'd bring her laptop downstairs and we'd all be in the same room together.  On bad days she'd stay in bed.

I was leaning heavily on family and friends.

Leslie and I used to say that we'd never been tested.  Despite perceptions about what Lily's diagnosis meant for our family, with a few hiccups here or there, she never really tested our capacity to care for her.  As Leslie's ability to help around the house dwindled, I picked more up.  I had the room.  It's amazing to realize how much your wife does when she's not longer physically capable of doing it.  I picked up more and more things as she was able to do less and less, and STILL I thought..."I've got this." But it was only because my in-laws and parents were picking the kids up every day after school.  Leslie had lost the ability to walk to the bus stop to pick up Lily.  I started feeling tested.  I started to wonder just how any single parent could do that day in and day out without support. 

I'm very supported by friends and family.  But I know not everyone is.  I tried to imagine how I'd do it without support but couldn't.  I was getting to work late so I could drop kids off before leaving for work, but at least I was able to work a little later because grandparents were there to get my kids off the bus for me.  Sometimes they'd start cooking so that I didn't have to when I got home.  Sometimes they'd make the kids lunches for me.

Leslie was guilt-ridden.  She felt like she was abandoning the family.  She felt like she was failing me.  She felt like she was a burden.  I tried to tell her that caring for her was my greatest honor.   I struggled through tears to tell her every time, but I did..."Caring for you is a privilege.  I feel like I finally have a chance to pay you back for all the care you've given our family."

We finally went to the hospital when the oxygen concentrator at home pegged out at 5 lpm and Leslie still couldn't get enough to breathe.  She was having panic attacks in the middle of the night.  Sometimes three or four of them.  She'd wake me to help calm her down, fetch medicine to help her, turn up the oxygen...but then there was no place to go.  We needed help. 

We went to the hospital for a tune-up.  Get the meds under control.  Get the breathing under control.  Get the anxiety under control.  Her parents were worried.  It was their 50th anniversary and they'd arranged a cruise.  Leslie begged them to go.  Told them she was fine.  The day after she went to the hospital she was like a new person.  I emailed her folks to tell them how much better Leslie was doing.  But that was the high mark of her visit.  It went down from there. 

A few days later she was still in the hospital.  She had some close friends visiting and the physician's assistant pulled me out into the hall to talk to me.  "I'm telling you this because I think it's the right thing to do."  They told me that the cancer in her lung had progressed beyond their ability to treat it.  They gave me the option:  make her comfortable or keep fighting.  She had chemo scheduled the following week.  I asked how long they thought she had...sucker punch...absolute best case scenario, "months"...worst case..."today".

So I pretended I knew nothing while I went back in to smile and chat with Leslie and her friends and inside I was thinking..."Jesus, this can't be happening.  How did this happen?  How could we not have known?"  I think I spent the night that night.  The staff met with me the following day and I told them I needed to find out whether Leslie wanted to know.  It's something she typically wouldn't want to know.  I had them ask her hypotheticals about what if THIS doesn't work, or what would you like us to try if THAT doesn't work.  I knew that if I asked, she'd know. 

They got to a point where she told them she wanted to know and they told her, and then I went to see her and we just sat there and cried and held each other and I felt like somebody had just put a big hourglass on her bedside and the sand was running out.

We told each other so many nice things.  Every day from the day I learned, I resolved never to leave anything unsaid.  I told her how much I loved her and how much I respected her and how much she'd changed me and what a great mother she'd been and how much I'd miss her.  And we knew we had to tell Emma.

I talked to a social worker and a grief counselor and googled things and by the next day I'd made notes on what to tell her.  There is nothing I have ever had to do that is harder than having to tell Emma that her mom was going to die.  Nothing. 

So here are the notes...I more or less memorized them for our talk with Emma, but these are them:

"Some doctors think that the cancer on Mommy's lungs is too far along to stop. They don't think they can make it go away. And that Mommy's breathing will continue to get worse and not better, and that all they can really do is to try to make her more comfortable as it gets worse, not cure her.

We just found out about this. We didn't know how much damage to her lungs the disease had done. As soon as we found out we started talking to people about the best way to tell you. We don't want you to think we've been keeping it from you.  We just didn't know.

1) Doctors don't know everything. Mommy's cancer doctor still wants to treat her. They can guess. They can estimate. But every one is different. We just know that it makes sense to make the most of our time with mommy right now while we know that we can.

2) Your mom is a fighter. She is not giving up on treatment and neither should you.

3) God is with us always. God has provided mom soooo much comfort throughout this struggle. This isn't God's fault. Lean on God. Pray for comfort. Pray for guidance. Know that mommy loves God and that God loves us all.

4) No matter what, mommy will always be with us. Her love, her guidance. We want her to live with us as long as she can, but if she has to go, just know that her spirit will never EVER be gone from our lives.

5) We need to love each other and be here for each other. This is the hardest thing we will probably ever have to do. But we can do it because we are a strong family with a lot of love."

Leslie's three biggest worries...that Emma would hate God, that Emma would think she was giving up without a fight, and that Emma would think we'd hidden how sick mommy was from her.

And she took it very well.  She just sort of slumped slowly against Leslie in her hospital bed and Leslie stroked her hair, and she cried and buried her face in bed.   She spent the day with us in the hospital just being with her mom.

When Emma finally went home (staying there was too traumatic with the panic attacks) Leslie and I talked again.  About how much time she had.  And Leslie said, "I just want to see Emma get married," and I just shook my head and we cried.  And then she said, "Then I want to see her recital," and I knew there was no way, but I just said, "Let's get to chemo and then work on getting to the recital."

****

This is as far as I made it two years ago when I first attempted to write about Leslie's final time with us.  I decided to write about other things.  Good memories.  The stuff we've missed together already...the stuff she'll miss in the future...that stuff is just too hard.  Too sad.  Too unfair.  And ultimately...not a healthy way to approach this loss.  I eventually wrote more about it here...One to Make You Cry...but that day I just couldn't.

It's 9/11 today, and while most people are thinking about the lives lost in the Twin Towers and the Pentagon, and in Somerset...I'm thinking about my wedding anniversary, and the woman I lost.  The woman I married 18 years ago. 

A friend asked me if today is hard for me.  It's not.  I don't know why it isn't...but it isn't.  When I think of our anniversary I'm not thinking of hospital beds and labored breathing.  I'm not thinking of future anniversaries uncelebrated.  I do try to take some time to think back on a pretty happy, mostly successful marriage that...yes...ended before it should have.  It IS still sad to me.  When I allow myself to think too much about it, it's so very sad.  And honestly, I know that the hearts of the people who love me are in the right place when they reach out on our anniversary to give a little extra love or tell me to hang in there...but...ironically...this isn't hard for me unless I'm deliberately thinking about it, which those messages invariably force me to do. 

And please...if you're one of those people, don't stop doing you.  I know you're supporting me, and thinking about it, though sad, is worth my time.  It's worth it to remember something special.  Always. 

But...apart from snot-nosed blubbering from rereading what I wrote two years ago...this is still a happy day for me.  I made the right decision 18 years ago.  All the branched paths that our decisions took us on together led me here.  My family is doing alright.  Our children are such a joy to me.  The house we picked together continues to grow and change (for the better I hope) and I continue to remind Emma and Lily of all the little ways that their mom's love and life brought us joy.  Just as they remind me daily of how blessed I was in having children with her.


I thought I'd written about our wedding day and put it in drafts, but I didn't.  I kept inching up to it incrementally and then not writing it.  I thought maybe I'd  write about it for our anniversary, but there's too much.
 
*long breath in...hold it a few beats...long breath out*

I feel like I'm pretty mentally healthy.  But there's some weird stuff going on in my head space (heart space?).  As I move forward in my life and try to find "ME".  Not me without Leslie...just me...I'm encountering some residual fear and anxiety about relationships and opening up that may or may not have something to do with losing her.  It's nothing earth-shaking.  But it's something that I see is...NOT healthy.  Or MIGHT not be healthy.  So anyway, despite basically badmouthing the therapy industry my entire adult life, I'm making plans to see someone to just talk about it.  See if there are things I can think about...homework maybe...that will help me keep moving forward. 

Anyway, I feel like that's something people should know.  Not necessarily about me, but about life.  Sometimes you need help.  Sometimes you don't "got it".  And then you get help.  Sometimes going into the woods and breathing the clean air doesn't "fix it".  Sometimes "pulling yourself up by the bootstraps" doesn't "fix it".  Sometimes compartmentalizing doesn't "fix it".  There may be no fixing it at all, in fact.  There may just be "adapting to it". 

I'm happy.  I really am.  This is just something I need to address to be happier.  HappiEST. 

In conclusion...thank you for all your thoughts/prayers/hugs.  Please don't stop sending them when you think of it.  But also, just know...every day is just like every other day.  I honestly don't feel any sadder on the anniversary of the day Leslie passed than I do on the day we were married.  I don't measure time that way (maybe that's a good/bad thing...not sure).  You won't see yearly posts about THIS being the Xth anniversary of the day Leslie died (That day isn't something I care to commemorate.  I'd rather celebrate her life) or THAT would have been our Zth Anniversary.   

But...I'm fine.  I'm happy.  And when you ask me how I'm doing because today is X...it makes me sad but only because it takes it all out of the compartments I have carefully set up for it and dusts them off and makes me look at it.  But it's worth doing.  It's worth remembering.  It's worth being sad.  And then remember happier times together, celebrating them, and moving forward.







Tuesday, August 22, 2017

A Touch of Lace

Lily has been growing like a proverbial weed.  She's sprung up almost overnight, finally cracking the "growth chart" she's loitered below for so many years.  Every time I take her to a doctor's appointment...and that is "many"...I note her measurements.  You know that baby book you keep for like the first 18 months of your baby's life and then forget where it is?  That's going on in my iphone right now.

See attached chart below:
I like charts.
She's gained almost 30 pounds in less than two years.  It's pretty amazing.  So much of my "autism narrative"...so much of how Leslie and I reacted to Lily's behaviors was overridden by a desire...a NEED to get her weight into a more healthy range.  Now though...game on.  The kid's killin' it at the dinner table.  Now I don't feel so...threatened by her loss of patience when she eats.  Now I don't feel like it's imperative that she get SOMETHING in her, so why bother with working on her self feeding.  Time to refocus.  Kid's got some wiggle room (no wiggle-related pun intended).

So anyway...growth spurt.  Her feet apparently also grow.  Sometimes I forget that.  My parents noticed her toes might be stretching the fabric of her current footwear and took her shoe shopping.  Mom sent me a picture.  Lily's favorites were the powder blue ones, but I liked both.  She refers to colors by their corresponding wiggle.  The powder blue were "Blue Anthony Shoes". 
Side by side comparison of blue anthony shoes and also...blue anthony shoes

It will become more complicated when she wears the red and navy blue ones.  All blue shoes are blue anthony shoes...so... pointing may be involved. 

At Lily's current shoe size...(Big kid size 1) the velcro options are dwindling.  I reached out to fellow autism parent, blossoming autism blogger, and AC of PA staff member, Jen for suggestions on clickable shoe closures.  I knew her son had them because she had initially struggled getting them on his shoes.  She pointed me to Zubits website.  I then went to Amazon and found a pair of knockoffs (Aircity) at half the price.  I bought white because I thought they'd look sharp with the shoes, but also look decent with ANY athletic shoe.  But they have tons of colors.

In a nutshell...they are powerful magnetic closures that you lace your shoelaces through then use the magnet to open and close them.  They look like this...


The magnets are STRONG, but you can get varying strengths for bigger (or smaller) people up through active adults using them for running shoes.  I Amazon Primed them and a couple days later I followed the simple directions and within a couple minutes (like seriously, Jen, what the hell was your problem?) had them on her blue anthony (not the other blue anthony, they have velcro) shoes.  I was pretty excited. 

She's been wearing the powder blue ones pretty much, but when I picked clothes out for her first day of school I thought the darker shoes would be a better contrast and not too "one note". 

Note shoes. 
Yeah...I um...didn't try them on Lily before I fully tightened the laces into the closure and snipped the ends.  I tightened them so much they wouldn't fit over her feet and then close.  I um...can't fix them because I already clipped the ends of the shoe laces so there's no flexibility to loosen the laces and start again (so...sorry Jen). 

So...today I'm shoelace shopping.  We'll try again tomorrow.