an autism journey

Archive for January, 2012

Who is Global Giving/Pepsi/Animals for Autism fighting against?

The battle between Animals for Autism and the families involved seems to continue to take twists and turns. Seems that Global Giving has stepped up to fight on Animals for Autism’s behalf. Sadly, the ones they are fighting here are the children…. and they are losing.

Animals for Autism put out a recent email to all the families involved in this. Ok, well, shall I say most of the families… Ms. Kaydus seems to have forgotten a few of them somehow. I guess she is just so doggone busy training those imaginary dogs of hers that she is no longer sure who is in this mess. In her email which she posted to her wall as facebook page http://www.facebook.com/#!/photo.php?fbid=313842625317682&set=a.187518351283444.33622.185190538182892&type=1

Basically she says

1) She is just so old fashioned that she would prefer to talk on the phone then respond to our emails or questions on facebook. (Interesting since the families were previously getting up to 3 emails a day from her during the Pepsi Refresh voting period and she posted mulitple reminders a day to vote as well as posting all over facebook to various places trying to get more voters). 

2)She is serving us all as individuals not as an organization….. ahh let me show you a little something I have in writing in regards to that….

Animals for Autism

(I am intentionally leaving off the old address)

 To Whom It May Concern:

The (my family’s name) family applied for one of our autism service animals for their son, (my son’s name). After carefully reviewing their submission, our team determined, along with his physician, that an autism service animal is in (my son’s name)’s best interest.

Shadow (fka: Siku) the puppy has been matched with (my son’s name) and will be placed with the family sometime next year.  Shadow is enrolled in a training program designed specifically to meet the needs of (my son’s name).  The training program is designed for 1000 hours of individual, hands-on training for the puppy, and final placement is a certainty once the training program is completed and the program fees of $5000 have been paid.

Should you require further information, please feel free to contact me via email (again left off by me) or by phone (left off).

Warmest Regards,

~LM Kaydus

Founder, Animals for Autism

Does that sound like I agreed to be served by an individual or an organization to you? By the way, I left off her personal info for the protection of her family, a luxury she did not give us when she published press releases all over the internet with our children’s info without our permission and then Pepsi posted the same press release on their website. Ihave asked for that press release to be removed by Ms. Kaydus to which she has not complied. Pepsi did take it down after months of it being there. I also asked for Ms. Kaydus to remove pictures she had posted on the internet of my son…. she refused to remove those as well and I went in and had to have facebook remove them.

3) She wants the families to respond via email to her to let her know if we are in or out of the program.

She answered no questions, gave no info, no pictures, no financial stament she has promised some of us…. just that.

Global Giving then posted their own blog defending Ms. Kaydus saying she is doing the best she can and the dogs will be “delivered” this spring (dogs that they themselves have verified are in shelters… the reason why they are in shelters varies depending on who you ask..).  http://blog.globalgiving.org/2012/01/27/animals-for-autism/

The families then responded to her and  Global Giving with some very simple requests of what we would like IN WRITING… things like pictures, vet records, financial statments of our payments, and donations sent on our children’s behalf by family and friends. You can also find that email posted to Animals for Autism’s wall.

Global Giving again via her facebook page told us to all call…. despite our ask for answers in writing, we are to all call. Now, Global Giving has begun to call the families (again some families, but not all for some reason…) and telling the families they must give a decsion as to if they are going to still want their dog. Apparently they cannot meet the resquests for our answers in writing. Very simple requests any legitimate organization could have easily provided…. probably without ever being asked to do so. Oh yes, and these decisions must be made by the end of the week….. that is it? They are obvioulsy helping Ms. Kaydus know exactly what to say and not say in all this… They sit in their plush offices and defend Ms. Kaydus so they don’t have to admit they made a mistake. The families, some of whom have put a lot of money into these “free” dogs are now stuck with deciding if they do or don’t want a dog that they were already told they were getting. Why should the families have to do anything here? The families have not done anything wrong and yet the burden falls on them. I can’t help but wonder what happens to those who say yes, they still want their dog…. are they going to have to agree to be quiet and take an untrained dog or what if they say no? Does that mean they then have stepped out of their own choosing and Ms. Kaydus and Global Giving and Pepsi are all off the hook? Seems to me the families are in a lose lose situation no matter what they do. Global Giving and Pepsi are huge organizations standing behind a woman who at best has been dishonest and not lived up to her agreement to our families…. at worst, she has completly scammed us. Let me direct you to another blog from one of the moms…. showing you who exactly it is that Pepsi and Global Giving are fighting here…. the children. She will be featuring different stories of the children..

 http://stinkerbaby.blogspot.com/2012/01/and-in-this-corner.html take time to get to know the opponents. I am proud to be on their side win or lose. These children have far more character and kindness in them in their young lives than the otherside could ever muster up in a lifetime.

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Sticking it to Autism… My Son is Here

 

As a mom of a special needs child, I find it easy to get caught up in the “work” of raising a child with autism. Let’s face it, it takes a lot of time. There is a lot of hands on care giving to be done. There are doctor’s appointments, occupational therapy, speech therapy, and in my case a full time ABA program. I find that I spend most of my day with Samuel. We are working on behavioral strategies, feeding programs, seat work,  teaching play skills, encouraging speech, preventing and coping with meltdowns.  I am with him morning, noon, and night…together and yet somehow I seem to miss the real time of just being together. I am talking about the time that I spend just being with my son, expecting nothing in return from him…. Just enjoying him. Today I took the time out to do just that…. Just be with him.  We didn’t work on any skills, I didn’t prompt him to respond or to speak…. We were just together. We spent hours today, just singing songs, reading books, and playing…. I let him decide what he wanted to do and for how long he wanted to do it.

Something amazing happened out of it…. We just had fun, real fun.  We laughed and enjoyed each other. I found out that I really, REALLY like my son (of course I already knew that, but it was nice to be reminded). He is funny and smart. He has even developed his own way of teasing me now. He does funny little things just to see how I react and then laughs and laughs… then stops to see if I laugh and then laughs harder when I do. By stepping out of “Autism Mom” mode and just being “Mom,” I discovered my son has really come a long way in the past year. We connected. He made eye contact. He made verbal requests. He paid attention to me and he sat willingly of his own choosing for over an hour to read book after book after book. That in itself is a miracle since back in May our ABA goal was for Samuel to sit for 5 minutes to do ANYTHING…. Yes, really. He even on his own just spontaneously gave me a kiss and said , “I love you.”

For a little while today, autism didn’t play a role in our lives. We were just mom and son. It was awesome. Of course the autism will eventually be sure to slap in the face to remind me it is still here, but that is ok…. Because so is my son……

A New Journey Begins

 

A New Journey Begins

When we started our journey to get our son a service dog, we had no idea the path it would take.  Last May, our son was paired with a little puppy that we renamed Shadow. We had high hopes that this dog would indeed be his “Shadow,” following him wherever he went. We hoped this dog would help make Samuel’s life better, provide a constant companion, ease anxiety, help him gain confidence, help him be able to experience life in a whole new way, and open doors that had previously been closed. Our son can’t even play at the park like most kids his age. We hoped that would change.

Sadly, as most of you now know Shadow will not be coming home to our son. The dog we thought to be Shadow may never have existed at all. We had hoped, questioned, voiced concerns, fought for the truth, and grieved.

One week ago, our story was shared on the local news by the same reporter who initially introduced our community to our son and his dog in training. The follow up story was one of loss and disappointment. It was like we were finally closing the door on that part of our lives and accepting reality.

Today, however we announce a new journey to our lives, to our goal of a service dog for Samuel. A much different journey that we are confident will this time have a much happier result. After our story aired, a wonderful organization stepped up with a desire to help Samuel receive the dog he so desperately needs.  A nationally known organization that has placed over 500 service dogs….. 4 Paws for Ability.  We are honored to be a part of this and incredibly humbled by their act of genuine kindness by the fact they are not requiring any fundraising on our part. Our son’s dog will be covered.

It will be a long wait still before he receives his dog, but we have confidence this time that he will indeed receive a well trained dog suited for his needs. We will continue to keep you posted on what happens. We will also continue to stand with the other families involved in this mess to hold the individuals accountable for what they have done and to try to find a happy ending for the other families involved whose children still need a service dog.

We would like to thank all of our family, friends, and community who have supported us in all of this. Thank you to Mike Brooks WICS, Jesse Jones KING 5, and especially to Jessica Noll WCPO, and a HUGE thank you to 4 Paws for Ability!!!! We are so excited for this new journey.

http://www.4pawsforability.org/

How To Be Scammed By An Autism Service Dog “Organization”

Looking for an autism service dog and wondering how a person can get scammed? Learn  from a pro. Let me tell you exactly what to do to get yourself in a mess! (With a touch of sarcasm…  Perhaps you could use this as a what NOT to do!)

1) Look for the cheaper option. Sure there are fantastic organizations out there, but they are so expensive… most cost between $15,000-$20,000. Ignore the fact that it takes a lot of time (thousands of hours actually) and energy to train a proper service dog. Over look the possibility that a legitimate organization will offer you lots of support and help in fundraising, perhaps even lists of places to apply for grants or other options such as Medicaid. Determine in your mind that you will never be able to fund such an expensive dog and look instead for someone cheaper. After all, you bargain shop for everything else so why not a service dog? Yeah, that is smart.

2)Don’t bother calling the IRS to confirm if the organization is indeed non profit and don’t check on the internet even though there is a website that lists non profit organizations and it only takes a minute to find out. Instead, just  take the person’s word for it. It says it right on the website and on facebook that they are non profit, and we all know they can’t legally say they are if they aren’t ….. right?

3)Don’t ask for references to talk to. If they have people giving testimonials on the website, assume it is true and not copied from somewhere else. Why would they copy it from another site? Also assume that the individuals who say they got dogs from them actually received SERVICE dogs and not just PET dogs….. this is a service dog organization after all. Why would they have people talk aobut getting their pets from them? It is not some breeding business.

4)Take their word for it when they say how much experience they have. Those credentials  look so impressive why would they make it up? You don’t need any proof, you don’t need names of the trainers or volunteers that work with them and certainly you do not need to know about their board members. They have no reason to make something like that up. Uh-huh.

5)When you tell the things you would like the dog trained for and they say they can do that…. Believe them. Never mind the fact that every organization is different and specializes in different things. If they say they can train the dog for anything and everything…. They can!  They are such great trainers you can have it all.

 6)Ignore that gut feeling that thinks the breed choice might be a little odd. If they assure you that the breed is really irrelevant if it is well bred and well trained, then that is good enough. Even though you keep asking questions about it, they have a comeback for every concern. They are the experts in this, so of course they know what they are talking about.

7)Let them rush you into a decision. If you don’t make a decision this week and put down your first payment, the dogs will all be spoken for and there is no telling how long you will have to wait. There are a lot of other families interested and they will probably all be wanting a dog and there is just not enough to go around. They only have your best interest since they know how much your child needs a service dog and they really don’t want him to have to wait…. Yes, hurry up, you don’t want to miss this chance.

8)Go ahead and make that first payment without a contract. They will send you one later. You can work out all the details of training later. They are very busy right now, but things will settle soon and then you can get all those things worked out. After all, the important thing is to get that payment in so that your child can be matched with an available dog that is ready to start specific training for your child…. Even though they don’t yet know what his needs are. Oh yeah, and you better pay through paypal because sending a check will only delay the process and if another family gets their payment there first, well there just won’t be anything they can do to help you.

9)Once you have made your first payment, and they give you a picture, don’t worry if it is just a little tiny newborn picture and they don’t have anything newer, they will send you a new picture soon, when things settle down and they give you that contract and training specifics….. just keep making payments anyhow…. It is not like they will move and not leave a forwarding address, stop answering your calls and emails, take down the website, and still not have given you pictures or updates or a contract or training specifics 9 months later. They really care about you and your child….

10)After all, if this is a scam…. You would have plenty of legal protection. I am sure you could get your money back and put a stop to all this. Shoot you could probably even get those big corporations that gave grant money to the organization to help…. They would never fund a scam and if they did, they would certainly do the right thing to fix it. YUP…… its all good.

Hope and Healing

What a whirlwind the past few weeks have been. More and more families have begun to speak out over being scammed by an autism service dog organization. As we tell our stories, it seems to beg a question from those around us… Didn’t you research, look into this organization? Didn’t you ask questions? Didn’t you see the red flags? How could you have been so misled? The answer is yes, yes, yes and yes, and yet somehow, yes, we were still misled. Why? Because we needed hope. It was offered, and we took it.

Let me tell you a little about some of the children involved in this Animals for Autism/ Pepsi Refresh Scam. Some don’t speak at all. Others have very limited verbal skills. Some use speech devices to communicate their needs. Some have been in and out of hospitals. Some are at risk for wandering. Some have  self injurious behaviors.  Some aren’t potty trained. Some have seizures. Some have other serious health issues  on top of autism. Some have mobility issues. All have autism and ALL are beautiful, sweet, talented children who deserve better in life than what they are getting.

Life is hard for children with autism. Simple everyday tasks become a challenge. The world is overwhelming with sights, sounds, and smells that are hard for an already overly worked nervous system to take in. They often don’t understand dangers like wandering off at the playground, or bodies of water, or even hot stoves. All you have to do is watch the news to hear the horror stories. They miss out on many of the opportunities that most of us take for granted. Society doesn’t understand them.  They are misjudged. They are ignored. They are made fun of. As parents we want desperately to help them. We seek out treatments. We seek out educational programs. We fight for their rights daily. We want somehow to ease just a little of the pain they feel and we want to find a way to protect them, to keep them safe. We want hope. Hope that their lives will someday be a little easier, a little better.

In walks Lea Kaydus (Animals for Autism). Wow, does she offer hope. Let me just share what she said in one of her press releases.

While not appropriate in every case, Autism Service Animals are a wonderful addition to the treatment programs of many individuals on the autism spectrum.  According to USA Today, “A 2004 study showed assistance dogs could help autistic children learn about living beings, feelings and needs…”   Service animals can:

*Help save lives by preventing wandering.
*Provide opportunities for positive social interaction in the community.
*Disrupt undesirable behaviors.
*Redirect their owners.
*Provide structure to daily living.
*Help teach respect and responsibility.
*Prevent meltdowns.
*Calm their owners with pressure therapy.
*Provide sensory awareness.
*Increase self-esteem.  -and-
*Provide constant companionship.

Hope indeed. The thing about most service dog organizations is that they charge anywhere from $10,000 to $20,000. A lot of money to families already strapped with the costs of raising a special needs child. Animals for Autism only charged an average of $5,000, since they relied on volunteers and donations to run their program. More hope, but lets not forget the best part, Pepsi gave them a grant to provide 10 dogs “free of charge.” For those who were already making payments, their balance would be paid in full. Wow, now we are really talking big time hope.

Why wouldn’t we trust her? She was offering this amazing gift for our children and she had an autistic child herself. One thing about the autism community is that we support each other. We understand each other. We help each other. It all seemed too good to be true…. Looking back now, it was.

The families involved in this mess are not ignorant. We are smart families. We just simply got taken advantage of. We needed hope, it was offered, we took it. We were betrayed by an individual claiming to be one of us, who in reality cared more about her own personal gain than about our children and by a company that cared more about their reputation than standing up for what is right.

Something has been taken from our families, something more than a dog…. Our hope was taken away. It will take a long time for us to heal, but we will heal. It will take a long time to learn to trust again, but we will trust, and it may take a long time, but we will find hope again. We will go on. We are autism moms and dads. We fight for our children, and we NEVER give up.

“We must accept finite disappointment, but never lose infinite hope”   Martin Luther King, Jr.

 

 

 

 

 

Life Lessons My Son Is Teaching Me

Life Lesson #1:

Be sincere. Children with autism often have a hard time learning to pretend, so being insincere is not something they know how to do. Every hug, giggle, and smile is genuine. Insincerity is a skill better left untaught.

Life Lesson #2:

I love you goes a really, really long way. Children with autism don’t have a lot of extra words to throw around, which makes “I love you” all the more powerful.

Life Lesson #3:

Take nothing for granted. I get really upset with parents who complain about their children. I can’t tell you how many times I hear things like, my kid talks too much. My son was talking and then stopped shortly before he turned 2. It was over a year before I heard the word “Mama” again. I appreciate every word my son speaks now. They may be few, but I don’t take a single word for granted.

Life Lesson #4:

Never give up. Very few things come easily for my son. What he accomplishes is because of hard work. He does not have the luxury of giving up. He may get frustrated, but he does not let it stop him. Just think what we could accomplish if we all had that same attitude.

Life Lesson #5:

Sing anyway. Speaking is difficult for my son. The words he does say, often are not clear. However, he loves to sing. Singing for some reason comes easier than speaking. He learns songs easily and finds pleasure in singing. It seems no matter what happens, he always has a song. He even sings when he gets scared. It is his way to comfort himself. It seems he finds a reason to be joyful every day. Our lives would all be better if we could find the joy and sing anyway. Somehow in the midst of our song, we just might find the joy in life as well.

Life Lesson #6:

Verbal ability does not necessarily equate intelligence and lack thereof does not mean a lack of intelligence. I know some people who never stop talking that I would not consider intelligent and some of the smartest people I know hardly talk at all.

Life Lesson #7:

Find pleasure in simple things. My son has no interest in expensive toys. He finds joy in playing in a rain puddle, running barefoot in the grass, and best yet, in a Hershey bar. If only we all could learn to do that.

Life Lesson #8

Don’t judge others. My son doesn’t care what a person looks like, how much money they have, or what they have accomplished in life. He is an equal opportunity friend. His only prerequisite,  is that the person show him kindness. He is, however,  a good judge of character and knows when someone genuinely cares and when they don’t. He doesn’t waste his efforts with those who aren’t genuine.

Life Lesson #9:

Happiness is contagious. My son is a giggler. He laughs a lot, sometimes even in his sleep. He has the kind of laugh that just makes you smile. No matter what my day is like, I can’t help but feel happier when I hear him laugh.

Life Lesson #10:

Actions speak louder than words. During a group therapy session, there was a little boy laying on the ground crying because he had been pushed down by another child. My son didn’t have the verbal ability to comfort him with words, but he just sat down beside him and laid his hand on the little boy’s back and sat there quietly. He said more with that simple, sweet gesture than anybody could with a whole dictionary of words.

Broken Promises. Where do we go from here?

So, now our story is out. It has been a hard story to tell. We have been taken advantage of by a so called service dog organization. We have been let down by Pepsi and Global Giving.  We have lost time, money and energy. We shared our story in the hopes of not only getting our money back, but also preventing this from happening to other families in need. Now the question many people are asking us, “What are you going to do now?” The answer is “We are not giving up.”

When we started this journey, we had no idea the ride we were on. If we had, we would not have gotten on it. It has been a huge stress. We were seeking a service dog to help with the stress, to make life easier for our son. Instead, it has become a nightmare that has taken far too much time, energy, and money away from our family. We are hurt, angry, confused, and downright exhausted. We will need time to heal.  However, we serve a God who is bigger than all this and we are trusting Him to see us through. We are not giving up on our original goal of obtaining a service dog for Sam. We can’t. We made him a promise. We promised him a service dog. No, he doesn’t fully understand what that means, but we do, and we promised it to him.

 Sam, in his limited vocabulary, carried around a picture of a tiny puppy and when asked who it was, he told them, “my Shadow.” It was heartbreaking to finally put that picture away. Animals for Autism broke their promise. They let him down. Pepsi broke their promise and let him down. It is a lesson that my innocent son is learning all too soon, we can’t trust everyone to keep their word, to live up to their commitments. But doggone it, he is also learning that Mom and Dad do keep  their word. We won’t give up.

 It may have turned into a lot longer journey than we planned. We start the process over. We have to find an organization we can truly trust. That will require time. There are applications to fill out, funds to raise and waiting lists to sit on, but we will keep going. We originally thought we were going to need to come up with $5000, the cost of a service dog from Animals for Autism. A lot of money to us, but we figured with the help of family, friends, and community, we could do it. People stepped up to the plate. We are forever grateful for the donations that came in on Samuel’s behalf. Much of the donated money is still sitting safely in a special account set aside for service dog expenses. When Pepsi stepped in and was going to cover the rest, we thought it was a miracle. We had planned on using the remaining money to cover our training week in Illinois when we got Shadow. That money will now go towards a down payment for another service dog instead.

We will fight to get the money back that was already paid into Animals for Autism on Samuel’s behalf. I don’t know if we will ever see it again or not (I have my doubts), but we will fight for it all the same. Still, even IF the money is returned to us and in combination with the donations sitting in the bank, we will have a very long way to go. Most service dog organizations charge $12,000-$20,000. That is an insane amount of money to a family like mine. It may take us years to raise, but we won’t give up. We can’t. We made a promise and my husband and I intend to keep it. I looked back over the footage of the story Jessica Noll did for us on WCPO, when we first started this journey. I said in that footage that “He has a gift for not giving up. Things can be kind of challenging. He kind of inspires the rest of us. He doesn’t let anything stop him.”I find that very appropriate at this moment. If Sam can keep trying in the midst of autism and all he goes through, so can we.

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