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.

Another (no)update – Pepsi Pups

Are you here looking for the latest on the Pepsi Pups? (All previous posts are here)

An update?

Keep looking.

Even the Chicago Tribune ran a No-Update Update on this whole mess.

Once again, Lea Kaydus, the founder of Animals For Autism (who is an individual and not an organization…..) is gone.

Global Giving is not giving any updates.

Pepsi, well we have already established that Pepsi doesn’t care.

Out of the original 13 families, not a single one I was able to contact has heard ANYTHING. Even though they have been calling, and emailing and ASKING for information.

Why the silence?

I would think that if the grantee is on schedule with her expected completion date, someone would be shouting that from the rooftops.

What is the secret?

Besides the fact that the grant period ended March 31st.

And I have not heard of a single well-trained service dog being delivered by Lea Kaydus.

I have heard of a very poorly trained dog being delivered to a family that was not part of the Pepsi Pups. That dog was so unsocialized and poorly trained that the family was forced to abandon all hope of using that particular dog and have had to start back with another service dog organization.

So………have you heard anything? Because the families the $50,000 grant was supposed to benefit have not.

And I know you are reading my blog.

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.

Thank You To Animals For Autism & the Pepsi Pups!

A  “Thank You” to Lea Kaydus, Animals For Autism, Pepsi and Global Giving. 

From the amazing mommy at Speaking 4 Sam:

Today, I have an odd thank you to give out.  To those who have followed our story, you know that we were originally involved with a service dog organization that turned out to be a complete scam. We lost a lot of hard earned money, as well as generous donations from family, friends, and community. Pepsi and Global Giving became involved in this scam when they provided funding to the individual who was the “founder” of the so called organization…. funding that was supposed to help provide service dogs to children with autism(You can read more about our story in the previous blog entries). I, as well as the other families, have gone through a wide range of emotions. We were hurt, disappointed, confused, and angry. We tried to complain. We were told by Pepsi and Global Giving to just wait… everything is fine… and PLEASE be quiet. We took the proper channels to report what happened. We turned to media when all else failed. We hoped someone would hear us and do the right thing.

Someone did. However, it wasn’t the founder of Animals for Autism. It wasn’t Pepsi. It wasn’t Global Giving. It wasn’t people in positions of authority who could have done something….. it was someone not involved in the mess in any way. It was instead someone who could have easily turned the other way and went on with the great work she was doing already… It was the founder of a REAL service dog organization called 4 Paws for Ability. It was someone with a gentle heart, who loves what she is doing, and wanted to help children in need. She stepped up once to help my son by providing a fully funded, well trained service dog (which he will be receiving in October). She could have stopped there…. but she didn’t. She just recently stepped up once again to help another family involved in this mess.http://stinkerbaby.blogspot.com/2012/04/our-new-beginning-to-happy-ending.html#.T4OGIFHBI0o.facebook  Her kindness seems to know no boundaries. She stepped in and went beyond the “right” thing when others who made the mess to begin with wouldn’t. I cannot say enough good things about 4 Paws for Ability.

I have been there on site and seen their dogs. I have seen the training sessions and met the individuals working with the dogs. It is amazing. They are a nationally recognized organization, well respected, honest, and trustworthy. They have trained hundreds…plural…hundreds of service dogs. My son (and now another beautiful little boy from the AFA mess) is going to get a well trained service dog. A dog far better than anything he would have gotten from AFA. It will be trained in behavior disruption, tethering, and tracking (yes, that is right…. The dog is being trained to track my son if, God forbid, he ever wanders off). Wow, we are so excited for what the future holds.

So, believe it or not, I am glad that the founder of Animals for Autism did not follow through on the Siberian husky that she promised us. It could have been a disaster for my son. I have since learned that Siberian Huskies (although beautiful animals) make terrible service dogs and are not recommended for ANY child, let alone an unpredictable special needs child. I have learned that the founder of Animals for Autism lied about her experience, her trainers, her staff, and about the dogs themselves. She was never qualified to train any service dog and certainly not capable of training a Siberian Husky for such a service.  Thank you Animals for Autism for NOT giving my son a dog. (I would however like my money back).

 

Pepsi assured us that the founder was well qualified and told us they were honored to work with her.  Global Giving (who oversaw the grant program for Pepsi) told us we didn’t know what we were talking about. They said they had seen the dogs in training. Everything was fine. The funding continued despite the evidence. It is because of them that we took our stories public.

So, thank you Pepsi and Global Giving for NOT listening to us (although an apology would still be nice).  If they had listened to us and stopped their funding of this scam, if they had just admitted they were wrong, the families would have never turned to the media to have our stories heard. If we had never gone public with our stories,  4 Paws for Ability would have never heard about our situation, and so we would not be in the amazing spot we are now in.

So, in a strange way, I am glad for what happened, because in the end, my son is getting what he needs from a place very capable of providing it. However, I don’t want to forget the ones who started this whole thing to begin with. So as a way of saying thank you, I want to actually keep a promise my husband and I made to Animals for Autism’s founder way back last May when we made our first payment. We told her we would spread the word so that everyone would know about this little known organization and what they do….  I believe I am keeping that promise. I am trying to make sure EVERYONE does indeed know about Animals for Autism, their founder, their dogs, and EXACTLY what they do there. For good measure, I want to be sure  EVERYONE knows about the projects that Pepsi and Global Giving support as well…… You are welcome!