One of Molly's Aversions.....

We can't pinpoint exactly when Molly's fear of animals began. She was raised with Darley, our fetch obsessed yellow lab who we had pre children. As with all of her OCD issues, they creep up on us until they smack us in the face with the obvious. When she wouldn't get out of our car at a trailhead to go for a hike, was the day that we realized that Houston we had a problem. She KNEW that she'd see lots of dogs on our Colorado hiking trails. It's what we do out here.  And have you tried to make an autistic child get out of a car and go for a hike? It wasn't worth the prolonged tantrum nor the noodle that she would become on the ground.

But instead of letting her win this forever battle as we like to hike, we knew that we needed to get another dog a year after Darley passed away. So we rescued Tucker (a 7 year old mellow yellow lab, who was not a puppy that would jump all over her).

This helped. They hiked together for 8 years until Tucker passed this past November at 15 years old.

And slowly Molly has learned to accept other animals around her. She doesn't love them. And keeps a wary eye on them when near her. But she doesn't panic and freak out. She even walked a miniature therapy horse around the parking lot at work recently.

So when THIS happened last week, I was very touched.

See that tiny black fur ball? That's a dog :)

Molly had gone with me up to Denver to do some work since she is on summer break and my work allows for that kind of "bring your kid" flexibility. We plugged her into her music and she sat down on the sofa. This tiny poodle Rosie was jumping all over her and licking her ankles. Molly was edgy and kept saying "No". Finally Rosie understood and plopped herself on a chair across the room. Molly didn't take her eyes off the sleeping dog. I went into the other room to work.

1/2 hour later I went to check on Molly and this is what I saw and HAD to take a picture. Rosie was sleeping happily beside Molly and Molly had a sweet little smile on her face about this whole friendship. I couldn't believe it!! I said "It looks like you made a friend! I'm so proud of you Molly!" She just smiled. She seemed proud of herself too.

And all of that went down in absolute silence with no panicky noises from Molly.

My girl is still learning and growing!!

xo

Yellow. Where would YOU take someone that said that?

What if your daughter came and stood 5 feet away from you, staring intently at you? You have NO idea what she wants and she keeps staring deep into your eyes like you can read her mind. You finally feel uncomfortable and say "Go get your talker and tell me what you want". She comes back and says (with the talker) "car". You think to yourself...."this is pretty cool. She wants something and is initiating telling me. But does she want something out of the car (that she left there?) or does she want to go for a ride IN the car?" Jack pipes up..."Show her both options with your hand in the air" (a common practice we use). Meanwhile Brooke chimes in "We went on a Jeep ride earlier and I told her we could go again so maybe that's what she wants?" We look outside and it is dumping rain so Jeeping is out. So I put emphasis with my left hand "do you want something inside the car?" and then with my right hand "OR a car ride?". Molly points to car ride.

"Ok, where do you want to go?"

She said "Yellow".

Your guess is as good as mine when she answers like this. "You want to go for a car ride to Yellow?"

She nods.

Ugh. Where is Yellow? Yellowstone in Wyoming? Kinda doubt it. My mind is blank.

Brooke says "Oh, right!! She was telling me that she wanted a yellow shirt and some red socks the other day when we were out. Maybe that's what she is talking about?"

I look at Molly...."Do you want to go shopping for a yellow shirt?" She nods and immediately heads towards the door. Sweet! We figured it out....way to go team Bell! If Brooke hadn't been there, the outcome would not have ended so happily. And it's Saturday afternoon with no commitments so I could take her right then.

We head over to Big 5 as I know that's where she and Brooke had been the day she was wanting "red socks". The Arc Thrift Store is right next door so I asked her which store she'd like to go to and she said (with her mouth) "Arsh". So we headed to the women's aisle and started pulling every yellow shirt off the rack. As she'd see another one, I'd ask which one she liked better, as she was only getting ONE shirt (because really...yellow is not her color). ;)  The second shirt she pulled was a very deep yellow shirt that said "Costa Rica" on it. None of the next 5 shirts compared and she held on tightly to the one that she really wanted. We checked out and paid $1.99 since it was marked down $1. Gotta love shopping at the ARC! Then we went to Big 5 and bought her socks and my girl was happy!!

And so was I as she had initiated a shopping trip and asked for what she wanted. This NEVER happens and I love being able to do something for her that SHE wants!

Can't wait for the day that she says "Happy Hour"!

Yellow

You CAN teach a 20 year old new tricks!

At 20 years old, Molly still surprises us with new things that she has learned. Not sure if they are taught to her at work, if she is recalling years of lessons attempted to be taught at home, or if finally she is just picking up on things naturally through life?

Brooke loves a good milkshake and Sonic has a fun summer special for 1/2 off milkshakes after 8 pm. It's awesome! He recently asked Molly if she'd like to go after dinner. She of course nodded her head "Yes". 8 pm rolled around and the 3 of us hopped into the car, pulled through the drive through, ordered our shakes and once in hand we proceeded to try and suck them through our straws. No go. WAY too thick. Molly and I both had strawberry chunks blocking the path and Brooke's had an piece of Oreo lodged in the straw. Luckily the drive home is not even a 1/2 a mile away and Brooke mentioned that we could eat them with a spoon when we got home. So with pedal to the medal, we headed home.

Upon arrival in the driveway, Molly booked it out of the car (she does everything fast) and ran straight for the kitchen to grab a spoon. Brooke and I sat down in the TV room to watch a show. This is where Molly shocked us.....she had grabbed THREE spoons and handed one to each of us as she sat down next to Brooke. We looked at each other with surprised faces.

I know that this probably doesn't sound like any big deal to most of you and I'm not even sure that I can adequately put into words why it was so shocking to us but I'll try. I even had to ask Spencer's mom and Brooke if they had words to adequately explain why this was so cool.

1. She thought of someone other than herself! Kids with autism aren't notorious for thinking of what others might want or need.
2. She counted the correct number of spoons. Hey, she can't add or do math (that we know of) so that was kinda cool to see.
3. This was totally unprompted from us. And that's probably the biggest thing as she will do anything that you ask....but she relies almost 100% of the time to be prompted (asked) to do something. So the fact that Brooke had mentioned that she might need a spoon to actually eat the thick shake 10 minutes before, did not mean that he had asked her to give us a spoon too. So when she thought to grab utensils for us; that made our hearts melt. Brooke looked at me with the same surprise that I felt inside. I love when he responds the same way that I do as it validates my reaction. It's nice to share life's little victories with someone else that totally gets your life. Someone else might not see the beauty in that tiny little gesture but a parent sure does.

Cheers to thick milkshakes in the summer!

Hidden Camera?

Our yellow lab Tucker was the master escape artist. We rescued him at 7 years old and he came with a few bad habits. "Marking" the house to claim it as his own was THE WORST habit. Escaping when the door or garage was a tiny bit ajar was the other. He would blow out the door and sprint up the street without a look back as we were chasing him, calling him, begging him...... And he'd be gone for hours until a nice neighbor would call or we'd finally find him sniffing around the hood.

We always talked about putting a Go Pro on him just to see what he did during his adventures (never actually happened). But wouldn't it be fun to see? His meeting other dogs, sniffing, being pet by random people on the hiking trails, running from them as they tried to grab him and figure out where he belonged, swimming in the stream, chasing a rabbit, chasing a deer, carrying a deer leg found on the trail, marking HIS territory....etc, etc.

I feel the same way when Molly hops on the bus to leave for work. I have NO idea where she will be working that day and she can't tell me when she returns (and if I test her knowing where she went, she usually answers incorrectly). I love the texts that come through late afternoon that give me a little idea of what she did. Here is one that I got this summer:

"Molly was in my group today at Christmas Unlimited. In the morning she colored in the craft room and used her talker to tell me what she wanted for lunch. We went through the Burger King drive through on the way. While volunteering we kept it low key today and she unwrapped packages of ornaments. The client sitting next to her had a seizure but Molly stayed calm and continued working until things returned to normal. While the client was resting, I sat with Molly and she said "Yes" she needed a little break as well. We ate lunch in the break room then Molly used her talker to tell me she wanted to look at magazines and when I asked her where, she quickly navigated on her talker to "library". We went to the library where she picked out 2 magazines to look at. She seems to be doing a great job with her Metro ticket and keeps it safe with her lunch money."


The other big news in her life (and the next step towards more independence that took the awesome Manitou High School transition teams' nudging of ME to try it), is her taking Metro Mobility. I'm always the last on board to trust the community at large with my naive and vulnerable daughter. I always need others to say "it's going to be okay." So instead of the Manitou Springs special ed short bus picking Molly up and taking her to school/work like they have since she was 3 years old (17 years people!), Metro Mobility now picks her up, takes her to work and brings her home.

Every town has this service I imagine? My brother David, who lives with a traumatic brain injury in Charlottesville, Va, uses the bus service Jaunt. In Colorado Springs, it's called Metro Mobility. You call the service and let them know when you need them and they give you a half hour window for when they will pick you up. It's $3.50 each direction and you can pre fill a pass with $ that is scanned when you get on the bus, or use paper coupons that have been prepaid for (we have been nervous about Molly either shredding this ticket or throwing it into the recycle bin but neither has happened...yet). If you are non verbal like Molly, the driver knows where they are taking you since that was taken care of over the phone (by me). Others who are picked up along the route are going to a similar destination. Molly is picked up at 7:30 am for her 9 am arrival at work. In the school bus days, she was picked up 1/2 hour before her arrival at work time so Metro has increased her drive time by over 2 hours each day. Luckily, she LOVES to ride in cars/busses etc.

But here's where Nervous Nelly me has a hard time with this new process. So Molly gets done with work at 2 pm. She normally gets home between 2:45-3 pm.  So I start looking out the window about 2:40. Yesterday was different. She wasn't home by 3 pm.  I'm pacing by 3:15. I finally call Metro at 3:30 just to make sure Molly and her bus driver are alive and the kind receptionist tells me that there had been an accident on the highway that stopped traffic and there is more construction on the road near us that was delaying their return home. Whew. She was still alive and had not been kidnapped. I tell ya....my mind can do outrageous things! Then her bus pulled up, she hopped off, grabbed the mail, ran inside and started doing her clean up routine and all was good in the hood. She was totally fine so it's ME that needs to relax into the unknown, trust these new strangers to do their jobs and deliver her from point A to point B, know that I can't be coddled with calls from the driver (like the old short bus days as they knew I'd worry if she was later than normal), and give Molly that independence that I know she wants to help her feel like the 20 year old young lady that she is. Yeah, I know....it sounds so easy but she has NO idea how vulnerable she is ;)

I know you are thinking, wouldn't it be cool to stick a hidden camera on Molly to see what happens if we let her walk to the neighborhood playground by herself? We HAVE talked about doing this kind of thing just to see if she'd get in a car with a total stranger (that we had prearranged mind you) if she doesn't get nailed first by a driving car since she's still not 100% trustworthy crossing a street by herself. We could do an entire hidden camera Molly series to train all kinds of people: police, paramedics, waitresses, lifeguards etc. One of our checkout people at the grocery store still says the wrong thing every time Molly is with me in his line. It's gotten to the point that I just avoid his line as he never learns. "Are you at a yoga retreat in Manitou?" (he then imitates the sound that Molly is making and I tell him that actually "No, she has autism and can't talk. That is how she talks." Another time he said "What animal are you trying to be?" Yes, people say the darnedest things!! I wanted to say "I don't know what kind of animal she is but I'm a mamma bear who is going to hurt YOU!" But I didn't. I just avoid his line now.) Wouldn't a hidden camera series be interesting? Because even more than you...I'd love to see what happens when I'm not around.

I'm baaaackkkk....at least until next spring hits!

This is apparently a pattern as I look back through the couple of years that I have posted blogs. Spring time gets a little crazy and I don't make time to write. Then summer hits and I have a little more time to update you on Molly's life. I had fleeting thoughts that my blog readers, who are not my FB friends, might be worried that something awful had happened to our family and that's why I had not updated the site since early February. But no, it's just that I couldn't muster up a story for you amidst the fun of Jack's senior year, lacrosse, After Prom decorations, running Molly around to therapies, my job, etc, etc......

So let's do a quick recap of the last 4 1/2 months through pictures and then I can go back and share a few stories in the weeks to come, sound good?

PS Even after all this time I STILL struggle with adding pictures....they are mostly in chronological order :)

Molly tuns 20 years old and makes cupcakes for her friends at work.

We have to prompt this to happen by literally putting their arms on each other.

Her birthday and the Valentine's Day Dance fall on the same night. This means a hot date with Spencer.

Special Olympics Basketball

Post basketball medal! She was more excited than she appears.

Brooke told her to "go put on a hat to go for a Jeep ride." This is what she came out of her room wearing! :)

AMAZING ABA/music therapist Kirsten's last day :( Full blog post on this therapy to come. Molly is talking more than ever!

Spent many hours creating the After Prom "Back to the 80's" decorations for Jack's high school.

Did I mention that we parents had to stay up to chaperone from midnight-3 am? Took me a week to recover as I'm a 10 pm (at the latest) bedtime girl.

The beautiful prom people!

 

Molly loved watching Jack and all of his friends having their pictures taken before prom at the Broadmoor.

Silly Brooke during a game we were playing. That story will get it's own blog post.

Jack's #1 lacrosse fan!

Captains helped take the team to the state semi finals where they lost to Valor.

Jack made 2nd team All State. These are the other Cheyenne Mountain boys that made the All State team too. John Grant, Jr. photo bombed them.

Jack's graduation with Mimi and Gdad (who drove out from Virginia) and Brooke.

Jack is in the left group...can you see him?

THIS is what our summer will look like....Molly staring at me not knowing how to entertain herself in the pool.

He did it!! Off to CU Boulder next year.

Pinch Me! Is it FINALLY resolved?!

If you have a special needs child, like me you know that nothing that is government funded works quickly or efficiently. We have been dealing with Molly's SSI (Social Security Income) for exactly a year and today we finally get to celebrate a resolution with a dinner out!! And Molly can treat.

When a child turns 18, they then can apply for SSI benefits. You have to prove significant disabilities and of course Molly qualified. You fill out the stacks of paperwork, get the school to send in it's IEP notes and get the doctor to submit their paperwork deeming your child's disability.... and then you wait. And wait. And of course one never hears anything via email or phone or even the mail. That process took 6 months and then a lump sum of $ was deposited into Molly's account (that we had created for that purpose). Of course Brooke wasn't checking that account daily...or even weekly as no one ever gave us a heads up on when it would be deposited.

What we did know was that to keep her benefits, we always had to keep her account under $2000. We charged her room and board and she'd have a little extra each month for clothes and going to the movies, etc. Not sure anyone really can live off of $730 a month....but she can since she still lives with us.

Stay with me here as this is where the entire process got messed up. August 31, 2015 SSI deposited over $4000 for the back pay that they owed Molly since she turned 18 years old 6 months prior. We were told that we had 9 months to pay that down without getting penalized. We got a letter 6 months later (last February) telling us that Molly obviously didn't need her SSI benefits as she had too much money in her account. So they froze her account and said that she owed back over $3000 (I'm not using exact #'s here so don't do the math).

We were frantic. What are they talking about? We had 9 months to get her account under $2000. We filed an appeal like they said we could in the paperwork. We wanted a face to face sit down to go over this. Two months go by and we hear nothing. So starting last May and for the next 6 months, I go to the SSI office and wait for 3-4 hours with all the other frustrated patrons with sick coughing, crying children, no WIFI and NO food allowed. Sometimes I took Molly but waiting for that long is not her forte. I'm not very good at it either. And taking her away from her work to go sit doesn't seem fair and is penalizing her even more. Every time I'd finally get to the window with an actual person to talk to, they'd look up Molly's case and say "It's still under review" and I'd leave. And go back the next month having still never heard anything via the mail.

FINALLY in September, the person behind the glass started live chatting a lady in the back about our case. She was shocked that we had never received any correspondence about our appeal (and could see that no letter had ever been sent to us). She told me that was highly unusual and that here was a phone # to deal directly with a decision maker. What?! Are you serious!! Hallelujah! I called the lady from my car and within a week she had called back. She said "You are correct. Molly should not have been docked for those two months of coverage. But the other two months ARE your fault since her $630 life insurance policy is deemed cash in her account" (Hello...thanks for telling us that now!). "Even though there was under $2000 in the account those two months....that life insurance policy took it over the amount. If you pay back that $1460 then her account can get reactivated." Brooke then called this lady daily saying that we still wanted a face to face meeting to talk about all the back pay. She NEVER returned his call.

We felt like this was all crap...that Molly had been penalized for one year of services and all for their initial negligence and lack of correspondence. But we were up against the wall with no choices since we wanted her services to resume. What if we suddenly died and she didn't have us to support her financially, we NEEDED to get this started again? So I went back in and sat for 4 hours and read the book "Finding Flow" and tried to stay positive, and smile and use my nice voice when I finally got up to the window. Lo and behold once I handed over the check the helpful man behind the glass said that Molly would be getting back pay for all of those months!! I hadn't even asked him about that yet. All I needed to do was present bank statements from the last year showing that she didn't have $ in her account (which she didn't). I left, found another day when I had a 4 hour window (which is never), took in the bank statements, handed them over so that they were stamped and I KNEW that the SSI office had them....and we waited for another 2 weeks and just found out that TODAY $ was deposited into Molly's account!!

I actually feel like crying. This was a challenge in patience, persistence, anger, frustration and finally relief. We will never let her account have more than $200 now as we don't want to deal with this slow moving incompetence again. Tonight Molly treats for our favorite noodle bowl place and (maybe) champagne!!

Awkward Moments

We have become friends through this blog, right? We can curl up on the sofa over a cup of coffee and really share our hearts, our fears and our victories. I toe the line on how much to share about Molly as she can't speak for herself or say "MOM!! You CAN'T share THAT!!" You might tell me that I'm an over-sharer and I'd have a tendency to agree with you. However, over and over again, I hear how much this blog helps others to understand autism and we are able to put a face to the challenges and hopefully folks out in the world are more compassionate to others like Molly because of my over sharing.

With that said, I'm going to take the plunge and talk about "Aunt Flo's" monthly visit. I know that every.single.mother of a daughter with special needs freaks out about this concept WAY before the event actually happens. We imagine the worst! I know that I did.

We had one horrific week of Molly smearing poop ALL over all her bedsheets, walls, chairs, and herself DAILY when I'd put her down for her afternoon nap at 3-4 years old. I need to dig up the video footage of her room as it was disgusting and I was ready to call it quits on motherhood!!

So I was picturing her period being very similar to that. One week a month for the rest of her life.....

She was in 6th grade when I got a call from her school towards the end of the day. "Molly was having a really hard time and was pitching a fit in the bathroom. When she finally came out, I asked her what was wrong and to tell me on her talker". She pushed the button "Red". Aunt Flo had arrived and Molly's intuitive teacher knew exactly what she was talking about. Molly was coming home shortly thereafter so I was prepared. I went out to greet the bus like always, and as she got off, she had a very stressed looking face. I smiled as big as I could and said "Molly, I heard the good news. You got your period and are a woman now!" (All you women out there know that was totally for show!) She looked right at me and gave me a huge, tight hug. What was SO shocking about this reaction is that she NEVER gives tight hugs. She leans in but doesn't wrap her arms unless prompted. And even if she does that, she never squeezes. My girl must have felt REALLY relieved to react that way. She wasn't dying! I wonder what she WAS thinking? I was touched by emotion to feel her grasp me that way.

You all know she's a cleaner so she rifles through a gazillion pads. Hard to explain to her that you really don't need to change them every hour but heck...that's better than NOT changing them at all, so she has done remarkably well managing her period through the years.

I keep track on a calendar so that I know her crazy, moody day could be that Flo arrives tomorrow. Or having it marked makes me buy more pads in preparation for the big day. But this post isn't really about that. This post is leading up to the story that she probably wouldn't want me to share. So don't tell her.

Here it goes....

You know that my brain is a bit foggy on years and smaller details so I think this happened the summer before 8th grade. I can't recall why we had to go to the pool that day, as typically, we just don't go those 4-5 days during her period since she doesn't know how to use a tampon. But for whatever reason, we were going to the pool during her period. So she had to wear a tampon.

The first time I used one, I waddled around all day with the cardboard applicator still inserted and could NOT understand why ladies wore these incredibly uncomfortable tampons :) Go ahead, laugh. But I bet YOU have a story too. We all do!

Due to my (uncomfortable) experience, I wanted Molly to be fully prepared. I checked out a gigantic doll from Memorial Hospital that has all the anatomically correct holes. I demonstrated on the doll where a tampon went. Molly didn't seem to be at all interested nor did she seem to understand. So I took it a step further. I invited her into the bathroom with me to demonstrate putting a tampon into myself. She's a visual learner, y'all! Can I just say that that might have been the most embarrassing moment of my life? She had the most horrified look on her face as she watched what I was doing. Almost like "MOM!! WTF are you DOING?!!" I thought "What AM I doing? This is mortifying." So we both quickly moved on and haven't talked about it since. :)

But as you know there was one last step to Molly going to the pool on the day of her period. We had to get a tampon in her! And let me tell you friends, that is not an easy task to do on someone else. The angles are funky. Do I try by standing in front of her...or from behind her? There is a little moisture finagling that has to be done. There is the autism factor where she can't communicate if this is hurting or she's just mortifed. All in all, it's just not a natural mother/daughter situation. And after a few tampon tries, we were successful!! Yippee!! Off to the pool!

She swam. I watched. We stayed for a few hours (for a birthday party? For something Jack was doing? I have no idea?)

When we got home, I said "You did awesome!! Congratulations! Come on into the bathroom and we can take out the tampon." We took off her bathing suit. She stood over the toilet. I went to grab the string to remove the tampon.......and there was NO TAMPON!

I'm sorry pool staff. Do they shut down pools for rogue floating tampons?

We didn't go back to the pool for weeks ;)

The newly invented Carpet Therapy!

If you are my FB friend, there is really nothing new to read here but am feeling guilty that I haven't updated this blog in a month. What my FB friends don't know is that I have blog followers from Russia, France, Germany, Canada, Australia (family), Spain, UK, Ukraine, Romania and Bermuda. I have no idea how most of these folks found me....but hello out there!! I imagine that they are all touched by autism in some fashion and hopefully find hope when reading about Molly and our family?

Since my last post I have not been feeling the creative juices flowing. Hubby has battled shingles in his eye and his gout flare migrated from one ankle to the other which limited any Christmas skiing in the mountains. He has been around the house A LOT and that is really weird :) He's usually the guy that grabs Molly to go for a hike or Jack to hit the slopes. Not this month. Then Jack woke up a few days ago unable to move his neck or head, had a fever and debilitating headache so we headed to the ER. One spinal tap and CT scan later and he was cleared of meningitis (which was the fear). Just an ugly virus that has sidelined him from the lacrosse tournament this weekend as well as snowboarding in all the awesome new snow that has pounded Colorado's mountains. He is on the mend too so hopefully this family is back to 100% health soon.

Couple cute Molly stories from this month. We were up in the mountains over the holidays and Molly  had pulled out the game Uno and was playing by herself for over an hour. When I peeked in on her to check on her I said "Are you winning or losing?"(not really expecting an answer). She looked right at me and in all seriousness said (with her mouth) "Losing". That cracked me up. I always sensed that she was a grass is greener type...but maybe not?

Brooke and I are practical Christmas present givers to each other and that usually entails something that we need for the house. The carpet in our TV room has changed from a nice clean cream/white-ish color to a forever brown. We were waiting for Tucker to go before we replaced it as he was the main culprit of it's new hue. And maybe not enough carpet washing too? So we went shopping to see if we could agree on a new one. We took Molly. This is what she did the entire time we were in this carpet store.

See her feet?

She stood still as a statue between the carpets for over 10 minutes and miraculously didn't scare other shoppers as they flipped through the options :)

This is how she watches videos on her iPad since getting the new blanket for Christmas. Cozy.

We are heading out again shortly to check out a few more stores. I'll snap more pics if she does this again.

Happy New Year to all!!