That explains it

Dudes.

No freaken wonder I am so tired.

This is a snippet of Faith’s electronic sleep log. And this is only the times I remembered to hit the “wake” and “sleep” buttons.

This has been going on for years.

And this is the hard copy that we will be keeping for two weeks. It goes to the Sleep Disorder Program. The shaded area is when she was asleep. The non-shaded is when she (we) was awake.

Mom is tired.

Still not the same

When I was growing up, the 4th of July was the holiday. We had BBQ’s, friends, family, pools, drinking adults, unsupervised kids, the lake, and fireworks. Oh the fireworks! The bigger, louder, brighter the better! We lived near a Native American Reservation. Do you know what that meant? Not only did we have fireworks, but we had illegal fireworks and lots of them. None of that “Safe and Sane” crap for our Fourth. We had the kind of fireworks that could blow your hand off. If by some chance we ran out of fireworks, we made our own out of gunpowder and aluminum foil. What? You mean you didn’t? I couldn’t wait to recreate these fun times with my own family.

(Hmmm, now that I’m looking back on this, maybe all that wasn’t such a great idea)

Fast forward 30 years and I am now a mommy to a special needs child. She does not like any bright lights or loud noises. Crowds and “different” foods are triggers of a meltdown. She doesn’t even like being outside for very long. The last time we celebrated the 4th of July was right after she was born, before her aversion to all the above became so apparent.

Our current celebration consists of BBQing at home and sending the older children to various places where they have a chance of seeing fireworks. We try to put Faith to bed early before the loudest BOOM‘s start so she does not get overwhelmed. Then hubby and I sit on our porch and hope for glimpses of other families fireworks.

How have your holiday celebrations changed from what you remember as a child? Any holiday at all. What do you do differently?

She’s an American Girl

So, tomorrow is Faith’s birthday.

She will be 9.

Yowza.

Like most little girls, Faith has been excitedly counting down to this magical day.

Unlike most little girls, Faith has special needs.

Birthday parties are a dicey thing for us. Heck, outings are a dicey thing for us.

Last week, the neighbor girls went to the holy grail of girly-girliness: The American Girl Store.

I had no idea there was an American Girl Store right here in Seattle. Did you know that? Did you know that the American Girl Store does birthday parties? I didn’t.

Now, regular followers of my blog may be a bit confused right now. Wondering WHY this matters. Faith is about as far from a girly-girl as a girl can get.

Captain America? Superman? Mario? Firetrucks? Transformers? Yes.

Tea parties? Tiaras? Princesses? No.

But….there is no one peg that fits here. Faith has spent years flipping through the American Girl catalogs. Pointing to each doll and asking about it. Noting which ones are similar to her and which ones are similar to someone she knows. The “Almost American Girl” dolls in other stores have not interested her in the least. It has just been the American Girl dolls.

So…. once I realized there was an actual American Girl Store nearby, a tiny inkling of an idea started to form.

Have you ever been to an American Girl Store? It is a sea of pink and red filled to the brim with squealing girls.

What if…somehow…by some miracle….I could figure out a way to take Faith to the American Girl Store for her birthday?

Crazy? Probably. But I figured the least I could do was talk to someone and see what kind of accommodations could be made. The following is my emails with Anna. Anna is amazing and needs a raise. And a bonus. And a vacation. :)

“Hi Anna,

I am hoping to arrange a visit to the Seattle American Girl Store for my daughter, Faith’s 9th birthday. Faith is developmentally and physically disabled. For three years she has flipped through American Girl catalogs, asking about the different dolls. This year I think we are possibly able to make the trip to the store. This will be her (and my) first experience and I am wondering if there are any accommodations that can be made to help her have an enjoyable experience.

A bit about Faith…. She survived a stroke as a baby. She has a hard time physically walking. She can walk but tires easily. She can manage most of the day without her wheelchair, but if the store will involve quite a bit of walking, we may need it. She also has autism. She becomes very easily overwhelmed by too much stimuli. I am wondering if it is possible to have a small selection dolls in a small area for her to “shop” from rather than have the possibly overwhelming experience of the entire store? What time of the day is the store the quietest? 

We would also like to celebrate her “party” at the Bistro, with the goodies (cake, ice cream, tiara) but it would just be her and us (Mom and Dad). Is it possible to have a birthday party without the “party” part? 

I am a special needs blogger and I would also love to chronicle how this goes in a blog post to share with other parents. Knowing what accommodations can be made at a particular store/event is a huge help for those of us who need a bit extra help with our children.”

Anna wrote back almost instantly.

“Hi Allison,

I would love to meet with you and Faith, and I’d be more than happy to customize her visit so she can have an amazing experience!

Our store is usually the quietest during the week in the morning and early afternoon. We will begin to be busier as summer break approaches, but weekdays are often much quieter than weekends. Our store is all one level, and very accessible, so Faith would be able to enjoy everything, including the bistro and doll hair salon, while visiting in a wheelchair so she could be the most comfortable.

I’d be happy to select some dolls and outfits for Faith beforehand, and then meet with her to help her go through choices. If you can tell me which doll(s) she’s excited about, or if she’d like to find a doll that looks like her, I’d be happy to bring a selection of dolls to her to help make choosing easier.

I can also help with creating a selection of outfits and accessories too. If you can tell me a little bit about Faith, her interests, hobbies, favorite colors, what style clothes she likes, I can create a customized shopping experience with outfits and accessories she’ll love! 

You can absolutely have a birthday party for three! The Bistro Birthday Celebration includes a drink, appetizer, main course and special cake and ice cream for dessert, with a goody bag for girls. The cost is $28 per girl and $18 per adult. If you have a date in mind for visiting, I’d be happy to check on reservations in our bistro!

And you’re more than welcome to take photos to remember the experience, or ask any questions that we can help answer! I’m looking forward to meeting with you and Faith!”

This was starting to feel like something we could actually do! The American Girl Store was very willing to help come up with accommodations to help Faith enjoy her American Girl experience to the fullest even with the additional challenges. Anna called me so we could speak in more detail about what we could do to help Faith. Anna was patient and full of ideas. She also went well out of her way to not only check the Bistro’s menu for Faith’s allergens, but she also ensured that they would have Faith’s favored ice cream on hand.

Wow.

Here are the photo’s from an amazingly magical day.

Faith and I on the ferry. This was before she understood where we were going.

As we wheeled into the American Girl Store, Faith exclaimed “Mommy, there is DOLLIES here!”
Anna helped Faith get settled on a bench away from the main flow of store traffic.
Anna then brought out 4 dolls for Faith to choose from. She showed her each doll in a slow, calm manner. She opened each box and took them out so Faith could really look at them.
Oh this one. I love her. She is my very own dolly!
Next up, Anna slowly showed Faith accessories for her Dolly. Each item was unboxed and Faith was allowed to touch.
Including a chocolate lab!
Anna helped get Faith's dolly dressed up. :)
Next, Anna helped us with an appointment at the American Girl Salon. Faith supervised intently. LOL
After dolly's hair was finished, Anna escorted us to the Bistro. Dolly was settled into her own seat. Faith thought that was amazing! On the table was a birthday card for Faith from the American Girl Staff and a tiara.
Prior to being served, the staff double checked with us about Faith's allergies. Faith chose Mac and Cheese. She deemed it yummy!

Surprise! Faith was quite perplexed as to why all these people were singing to her! She blew out all the candles in one try.
"It's my Berf-day!" The cake was simply divine. Fit for a princess, or a superhero. Or even a superhero princess transformer.
The day was a success. Not only a success, but an "I had such an amazing time that I fell asleep in the car which I never do sitting beside my new bestest friend in the whole wide world" success. And I'm pretty sure that is the best kind.

If you have ever considered a trip to the American Girl Store, but have hesitated due to special needs, please email them. I can not stress enough how accommodating the entire staff was. Every person we came in contact with was so helpful, patient and understanding.

Thank you American Girl Store for helping to make a little girls wish come true.

Water towers and off days.

I admit it.

I’m having an off day (week, month…). Things seem much harder than they really are. I have no energy to be creative or even friendly. I would actually just like to stay in my yoga pants, curl on the couch and watch a marathon of An Idiot Abroad.

Where am I going with this? Nowhere.

Like I said, I’m having an off day (week, month…)

I just spotted something on Facebook that brought back a flood of bittersweet memories.

Two words.

Water Tower.

Many moons ago, we lived in the tiny town of Smithfield VA. Known for Ham, History and Hospitality. (…and for the reek of the slaughter houses a few miles up the road….but you didn’t hear that from me.)

The two years we lived there were pretty darn rough. Hubby was deployed most of the time and Faith was sick quite a bit. Not like “cough, cough” sick. I mean “first name basis with the PICU nurses, inpatient for weeks at a time” sick.

It was also during this two year stretch that Faith was diagnosed with autism.

With 6 years between now and that moment….

…..the time standing still, I know she’s a little quirky, and for the most part only repeats lines from TV, and spends a lot of time flapping her hands and rocking, vomits when she touches anything with the texture of yogurt, and she poo paints, a lot, but what the heck do you mean she has autism moment?

Anyway, looking back, I can finally see some humor in our time in Smithfield.

Faith has had some pretty interesting obsessions over the years. Some memorable ones have been a spatula, a bar of soap and water towers.

Oh she loved water towers. Any size, any shape. Water towers were the highlight of her day. Luckily we had one right by our house.

When she would spot a tower, she would begin flapping her hands and making “Eeeeeeeee! Eeeeeeeee!” sounds. She would smile so huge that you couldn’t help but smile with her. She was 3. She had almost no communicative speech. But she could make everyone in the car with her laugh at how excited water towers made her.

During the time we lived in VA, we became water tower experts. We could plan a trip anywhere in area making sure we passed at least 3 towers each way.

Anyway….

The time we lived there I was miserable, depressed and always felt like a black cloud hung over my head. I was so happy to leave Virginia. I just plain did not want to ever look back on our time there.

Yet today I did. When I spotted the words “water tower” on Facebook.

Not only did I look back, I looked back and felt a flood of good memories.

The girl, she loved those towers. And she was so damn cute when she spotted one.

So maybe, just maybe, at some point in the future I will look back on this time fondly also.

Thursday Tirade

(I know, I know….It is supposed to be Thursday Thinking)

(But I’m riled up.)

(When I get riled up, it’s better for me to come here and vent instead of eating Cheetos.)

(Mmmmmmm……Cheetos……)

Morning Rant:

While trying to subscribe Faith to a monthly craft service, I had to lie about her birthdate in order to have the developmentally appropriate items sent.

How about instead of relying strictly on birthdate, allow parents to choose the level?

I feel like I’m denying Faith all the amazing progress she HAS made when I have to lie and say she is only 4 in order to have the proper items sent.

Rant Over.

Brush it off

I need your help.

Imagine you have a special needs child.

She has autism.

She has some pretty severe sensory aversion.

She has some fears.

She has super, crazy, thick, wavy hair.

She is going through a “water near the head equals screaming unless I’m in a pool” phase.

She also has severe dandruff.

And her hair is black.

Faith has been in a bit of a challenging phase lately. She does NOT want her hair washed. By that I mean that the sight of the shampoo can result in screaming, thrashing and throwing. I have tried almost every trick I know of. We have washed Daisy together, we have washed her stuffies, I have brought her in the shower with me. We have tried using the sink. We have read social stories. We have watched cartoons. We have watched Elmo’s world. We tried “dry” shampoo.

I KNOW eventually we will move out of this, but I need some advice for the here and now.

Her hair is a mess.

The dandruff is awful.

How awful?

This.

I brush her hair several times a day hoping to help loosen it and help it fall out. We have had a nylon bristle brush, but she said it was too scratchy and hurt. It also didn’t seem able to penetrate the thickness of her hair. She is ok with my using a plastic ball tipped vent brush, but it does not seen to help bring the flakes out of the hair.

Has anyone ever used a boars hair bristle brush. Are the bristles softer than the nylon bristles? They are kind of expensive but if they can get through the hair and help get the flakes out, I’m willing to buy one.

Happy Birthday to ….. Pepsi Pups

Last year – yes it has now been a year, when we began the process of applying for a service dog from Animals For Autism (also known as Siberian Snow Babies) we were matched with a beautiful pup. We excitedly looked at the information about this amazing puppy who was about to change our lives.

It was fate!

Her birthday was 03/07! That is Jimmy’s birthday! Today!

"Bella"

This little puppy, who we were instantly smitten with, shared Jimmy’s birthday!

It was meant to be! This beautiful girl was to be ours.

She was perfect! We memorized everything we could about her.

"Bella" at 6 weeks

We put her picture on our phones so we could show complete strangers in the Target checkout line. We made her picture our screen saver so we could see her when we walked by the computer. We put her pictures on Faith’s iPod so she could scroll through them. And she did. Several times a day.  We sent in our monthly payments of $750. We talked about Bella. We loved Bella. Today should have been her first birthday.

Too bad she never existed.

Oh, as a dog, she existed. She is a real dog. But she was not born 03/07/2011 as stated.

"Bella" with date info

She was born 03/24/2007

The dog my daughter fell in love with, that we all fell in love with, did not exist as we were led to believe she did.

None of the Pepsi Pups existed.

"James" the free service dog

And neither Pepsi or Global Giving see anything wrong with this.

So today, instead of wishing the dog we fell in love with a Happy Birthday,  I am saying goodbye to the dream that began 1 year ago.

Who needs sleep anyway

The past 5 days have been interesting.

Ok, that is a total lie.

The past 5 days have been awful.

Faith has never been much for sleeping. It’s as if the little switch that we all have that flips over in our brains and allows sleep, is missing for her. She just stays awake. For about 3 years now we have been using a combination of two medications, clonidine and trazadone, to help ease her into a restful and restorative sleep. We came to use those two particular medications after several years of trying natural, herbal, sensory, diet and behavioral modifications.

For the dose that Faith needs, we have her medications compounded. While that allows for ease in dispensing, it is a pain in the tush. The meds are only stable for 30 days, our insurance will only allow refills ever 25 days and shipping time for the compounds is 2-3 days.

We walk a fine line of “Crap! Only one dose left and the UPS guy isn’t here yet!”

We had our yearly appointment with Faith’s Developmental Pediatrician on Thursday. While discussing this issue we brought up having a back up medication on hand for situations like this. Since Faith is now almost 90 pounds and the medication would be used only very rarely for sleep, we thought of trying Ambien.

Conveniently,  Thursday night we were on the line of running out of her compounded meds and her new ones would not arrive until Friday. Perfect night to give the Ambien a try!

Since I take Ambien, I know it works fast. We waited until almost her normal bedtime of 8pm, and then gave her 2.5mg. Then we waited, hopeful.

9pm – nothing

10pm – she was beginning to act hyper, making many vocalization and stimming

11pm – she was full on stimming, vocal ticking, trying to pick her fingernails off.

12pm – she was combative. Trying to hit Jimmy and I, pulling my hair, trying to hit her head on the floor, yelling at something she was seeing. We had to take turns attempting to hold her to keep her from hurting herself.

1am – combativeness started to lesson, but vocal ticks and stimming cam back, spent a lot of time shaking her head back and forth and laughing at the colors

2am – still wide awake, but no longer talking to things only she could see. Asked for her iPad.

3am – toppled over.

OMG! Every muscle in my body hurt from the force of trying to hold her safe from hurting herself. But at least it was over, right? Right?

7am Friday she popped up and began the vocal stimming again. Not in the frantic way of the previous night, but in a manic way. She was wired. She was unable to focus on anything, was talking but jumping subjects so fast she was hard to follow. This continued all day long. Thank goodness her compounded meds were being delivered that evening.

At 5pm the UPS guy delivered her medication.

Ummm, we have a problem.

Old medication is on the top, new is on the bottom.

Did I mention her meds are compounded on the east coast? Did I mention it was Friday? Did I mention the pharmacy and my doctors office are closed on the weekends?

The new med was totally different. The compound that we have received for the past three years was dark purple, with a strong grape scent. It was the consistency of thick syrup. It was labeled 0.1mg/ml.

The med that arrived on Friday was totally clear, very faintly grape-ish smelling. It was the consistency of water.  It was labeled 1mg/ml.

No note explaining the change. No one answered the phone at either the pharmacy or doctors office. She was still wired. She was still going a mile a minute. Until I talked with someone who knew what was going on, I couldn’t give her the clonidine. She was up until 2am Friday night. She woke once at 3 until 4am. She was up for the day bright and early at 7am Saturday. Then followed another full day of hyper, disjointed stimming and vocalizing.

This has to end sometime….right? Right? 

Saturday she fell asleep once again at 2am. Up again at 5 for about 20 minutes, then asleep again until 7. Sunday was again full of hyper bouncing off the walls. Jimmy and I were on our last nerve. No sleep does that to a person after several days.

Anyway, long story short…

We finally talked with the pharmacy on Monday….after 5 days of hyper, wired, no sleeping Faith.

She had her correct dose of meds on Monday night. She fell asleep by 8pm and slept with only 2 wake ups until 10:30am on Tuesday! Her poor little body was plum worn out.

As are we….

Guess what I have?

The past year has taken a lot out of me. Time that I will never get back. My health has suffered. The stress has taken a toll on me and my family.

If a few parents could find the truth about Animals For Autism in a couple of Google searches, there is no way that Pepsi and Global Giving did not also find it. They have been given information since August. To know that a person is lying, and those lies are being upheld by 2 huge companies, backed by money and lawyers, destroys something. I don’t want to call it “innocence” but I can’t think of a better word right now. Until last year I believed that people were good. That people worked for truth. That honesty would always win. That as long as I told the truth, I would be heard.

I was wrong.

Right now, I feel like my innocence has been taken from me. My health has been taken from me. My money has been taken from me. My belief in the good of large companies has been taken from me. My belief that when a scam is revealed, that it will be stopped, has been taken from me. A year of my life has been taken from me.

But…guess what I have?

I have my integrity. I have my clear conscience. I have the knowledge that when I saw a wrong, I tried to make it right. I do not have to go back and erase things or cover up things, because when you tell the truth, it stands for itself.

And no, I will not sit down and shut up.