FIGHT AGAINST AUTISM   

 9-6-08-I was looking at regional center's website today..this is who is funding Blake's theapy and portions of Josh's and Austins therapy and this is what I found:

Regional Center of Orange County
Budget Status Statement
September 5, 2008

9-5-08- Hi! Tomorrow is Blake's birthday. Cant believe he is 2 years old. We wanted to post this link. It is a video of kids that have recovered. We wanted to share with everyone our hopes and dreams for our boys. Also- thank you to everyone who helped with our golf tournament fundraiser (Sept 27th). We cant wait for it..it is going to be fun fun fun!

http://www.childrenscornerschool.com/recoveries_new.html

8-7-08-We got national radio coverage today. Christian called the Bubba the Love Sponge Show to thank Bubba for the items donated to our golf fundraiser. It was pretty cool to hear our website on the air!

7-19-08-yesterday I was looking back on pictures of Christmas and I could not believe the difference in the boys. For starters Josh can now hold a five minute conversation (about disneyland..we will have to work on topic changes :) ) however the point is that he can have a conversation about something. I never thought this would have been possible 7 months ago. I am posting this because I want everyone that has helped us to understand that you all have had a part in his success. Without everyones generosity, support and prayers we would not have been able to keep everything going for him. Blake is now starting to combine 2 words together. His speech is hard to understand but we are so hopeful that this will continue to improve with all of his therapy. I cant wait to look back 7 months from now and see more improvements. Everyday we try our hardest to take everything day by day, because if we look outside that we go into panic mode. We can not wait for the day that we can post on this site that the boys dont need their intensive therapy program anymore. Thank you again to everyone that has helped us and those that continue to help us. Without you..these dreams would not be possible.

7-17-08- hi everyone...sorry no update for a while.  We found out that we did not get a grant we were really hoping for. We did however get a smaller grant from another non profit and we are thankful for that. We find out if we win our case in the begninning of Aug. In the meantime please please keep us in your prayers. Our family is well on their way trying to organize another fundraiser that is looking like it will happen in November. Also our brother-in-law's family has designed a T Shirt that we will be selling on our site soon. Thank you again to everyone that has offered their support, it has truly meant the world to us.

6/26/08-Good news today. the Dr. we saw today said Josh has about 1 1/2- 2yrs left of his program, Blake has about 2 yrs to go. The hope is that after that most of their therapies can be faded out. We are so grateful for the good news. 

We also wanted to thank our neighbors for all of their support. We are so lucky to have such a supportive neighborhood.  We also wanted to say thank you so much to everyone who has donated to our wells fargo account. Since it is an anonymous we can not send a private thank you..so we want to thank you here. We are blessed by all of our support and kind words. Thank you again to all.

6/25/08- we went to court on Monday. We will not have an answer until Aug. Keep us in your prayers. Tomorrow we are going to see Dr. Granpeesheh. She is very known in the autism world. She will be able to give us a "prognosis" on the boys progress. We are really excited to hear what she has to say. On June 21 & 24th we had our fundraisers. It was so much fun to see our family and friends all together at the events!! See below-We will be posting pictures on the fundraiser page as well ( I need to get better copies..the ones below are the only ones that would post).  We are so grateful to all of our wonderful family and friends who supported us at the events. You guys are wonderful and you keep us strong. We are so thankful to all the volunteers  that donated their time for the fundraisers and the vendors that donated raffle items. How amazing to do that for a family you do not even know. Thank you!  I cant wait for our future events. We will keep everyone updated on our fundraisers page. I know people are hard at work planning more events. Thank you, thank you, thank you!

6/18/08 - Hi Everyone! We got some really good news.
 
After our lawyer submitted our exhibits for court, regional center decided to make Josh eligible for 1/2 of his services! We are so excited. We are still going to court on Monday to try to get reimbursement for the $35,000 we owe for Josh's therapy for the past 3 months. Josh's therapy per month is going from $11,000 to $5,000. Big difference, however-we are still going to need fundraising events because this is likely the amount we are going to have to pay per month for the next 2 yrs to get Josh through this (not to mention our out of pocket dr. bills, meds, scoping procedures for the boys, oxygen therapy for all 3 boys..I can go on and on). We feel with help from fundraising that we actually and finally have a chance of getting Josh better! So exciting! (1/2 is much easier to come up with!). We are making progress and it is so wonderful. Thank you for all of your help and support! Please continue all of those prayers..they are working! Get could not get where we are today without the help from all of you. We thank you from the bottom of our hearts.
 
If you are interested in reading about Josh and Blake's therapy and the outcomes, here is the study that started it all.
http://rsaffran.tripod.com/research1.html

6/13/08 - We wanted to keep everyone updated on what is going on. We are going to court on Monday the 16th and the 23rd to try to get some Josh's services back. When you have to go to court, it is really hard for parents to win. There are a whole lot of politics involved. Yesterday was the very first day that it crossed my mind that I do not know what we are going to do if we lose. If we lose, we can not litigate the issue again. Here is a little glimpse into how we got where we are today with Josh's therapy program. About 3 months after Josh was diagnosed- I met this woman who had recovered her 3 children with ABA (type of therapy Josh is getting). They are recovered...I met them. They are older now and have been recovered for a long time. At that time-I thought Josh was getting ABA, until she met with me and went over all the qualities a good ABA program needed to have in order to help my Josh get better...we did not have any of those with our current provider. After numerous of hours on the phone with providers in our area, I found a great one. We applied to switch. They had a 3 month wait list (as of today they have a 8-13 month wait list as all the quality providers do… there are only a handful), so we had to wait it out until they could accept us. Once we got in-Josh blossomed. I attribute all of his success to his ABA and his biomedicine. I know some of you are familiar with his success, because you have seen him through it all. I can not imagine in a million years having to give this up. I have been told by a few well respected/educated people, that Josh has the potential to recover if he remains in this program for 1-2 more yrs. same with Blake. Can you imagine knowing that your children have the potential to lead a pretty normal life, but you might have to give that up because we have no funding for it? This is the reality in the world of Autism. Can you imagine having a child with Cancer and they have a 50% chance of recovery from it, but you can not afford the medicine...so you have to go from having a 50% chance, to a 0% chance. This is where we are. There are numerous peer reviewed scientifically based studies showing that if a child gets a quality ABA program for 2 or more yrs, they have around a 50% chance to lead a pretty typical life. No matter how much parent training we go through (which I do daily) this therapy is not something we can do on our own. It is very broken down, and each program leads to a new program which then leads to a new skill learned. To get to one new skill learned, it is broken down into many steps. We have also already fought our insurance company on this issue. It turns out that our insurance is self-funded, so they do not have to abide by any state laws that are passed. There is one law out there to help called AB88, and there are many more on their way-however as long as we are with our current healthcare agency-we will not get to use those laws (I have learned A TON about the law from our lawyer). Mind you, we have a PPO with untied healthcare under Christian's job. I know this sounds crazy, but this is my life and I love it. Everyday, I get to rejoice in something new Josh does on his own. It is the most amazing thing. When he comes up with a sentence on his own, or he tells me he is thirsty. That is our progress...and it is beautiful to us. Please pray for many miracles to come our way. Thank you again to everyone.  Here is an article written about the same thing we are going through: http://www.ocregister.com/column/services-rcoc-children-1878016-fair-policy

6/10/08- We just wanted to let everyone know that we are so overwhelmed with all of your support. Having the support from everyone helps us have brighter happier days. It really is amazing how wonderful people are and how big everyone's hearts are. We thank you all so much. We are trying to add a blog to our site so everyone can stay updated.

6/2/08 - It has been three weeks since we opened up up to everyone about our family's struggle and it has been a roller coaster of emotions. We are grateful for all of the support that not only our friends have shown, but friends of friends and complete strangers have shown as well. We will try to keep this page updated as often as possible with the boy's progress, fundraiser information and anything else that people may want to see. If anyone has any suggestions, questions or comments please email us. Thank you to everyone for all that you have done.