Julia's Softball Tournament to raise money for the Rise School!

Things are going good with getting ready for the "Rise to the Challange" softball tourney that Shawn is putting together. We have about 7 teams (wish we could get a few more....), and several people who have volunteered ther time to help out. We got the fields reserved in Lakewood, working on umps, and mostly just trying to organize and figure out prizes, sponsers, booths, banners, etc for the event. We want this to work out and be profitable because The Rise School of Denver is just so great. They have been so patient with all of the intrusiveness of the attorneys and different Life Care Planners and other evaluators. They have made Julia A PART of a classroom, instead of being placed "apart" in the public school she attended for a year. They are just the best, and all proceeds go to the School, not a dime to Julia's tuition. We want to help. So, pray for success! And a special Thank you to Colorado Service Dogs for all the information you gave to Shawn yesterday to help spread the word. I am still shocked at the coincidence of meeting Dobbie and hearing about you at this perfect time!

Lots ahead!

So, tomorrow, Julia has her second round of botox under general anesthesia to help re-straighten her left leg. It has turned inward so much since her last injections 4 months ago, that her new brace is not fitting anymore and she REFUSES to wear shoes. I have experienced the people reprimanding me about her shoes, or lack there of, for years, but today, Shawn got to experience it pretty intensely. I hope the anesthesia goes well, again, as it did last time, but of course I am a nervous wreck. I hope her leg straightens out again appropriately so that we don't have to go through all the appointments to get a new brace soon. We JUST got this one!

The settlement is wrapping up. I think it will end in a settlement soon, or else on November 4th, there is a hearing set to END it. I am having nightmares everynight - the one last night that I had - we ended up with $250 for everything!! WOW! That better not happen, or I WILL appeal, which, with an appeal, you never win - but hey, for $250 it would be the point of the appeal. I am sure things will be OK. Probably not Hannah Poling OK (if you aren't familiar with her settlement for MMR and autism, just google her name), but I expect at least half of what she got. Once we get the settlement - that is IT. No more medicaid, no more nothing - everything comes out of the fund. Please pray for it to be fair, if not more than fair, for the loss of who she could have been.

I am feeling so stressed, that even in my dreams, I am telling myself how I just want to lay in bed for a month. Seriously, the other night, the dream I had was a current version of me talking to a younger version of me, and discussing how emotionally drained I am. Done. I was talking to the younger version of me explaining how she could change things so that life would not be so challanging in the future. Just a dream.

Though all this sounds negative, there are a LOT of positives going on in my life right now. A real potential for a new, more appropriate job for myself to support my family. The settlement, which the paperwork over the last three years has consumed my life, is almost done. A WONDERFUL caregiver for Julia. LOTS of helpers who truly care about Julia and my family. LOTS of good stuff happening.

I am just stressed. I want tomorrow to be over. Have to be at the hospital at 745, and then get to work by 1pm. The screaming and tantrums. The phonecalls to attorneys and medicaid and doctors and everything else. I am exhausted. I know this is Julia's blog, but I am just whooped. I crave my bed and quietness.

Enough complaining. It is what it is, and it will get better very soon. There are lots of changes coming that are going to turn many things towards a more positive direction.

Almost bedtime for Julia, then just one more to get down, then I am done - to get up tomorrow and do it again.

Julia - you are one amazing kid. Even with all the behavioral issues, you perservere and show me why I do what I do.

I LOVE YOU JULIA and we will be FINE!

Susan

Please God, let me know my path......

I have a meeting with Dr Larry Magnuson on Tuesday morning. For those who know, you know how important this is for me! I hope to get somewhere with him on Tuesday. My life has evolved in a new direction and I hope this Dr Larry is a start to a new beginning for me and my family.

Julia is doing great. We have hired a new ABA therapist, and she will be starting with Julia very soon. This should help greatly with some of her more trying behaviors. Julia is doing great in God's grace and His plan for her and for my family.....it is hard for me and for Jack, and for Shawn, but...it is his plan, and we will keep on keeping on. I truly feel something is going to change soon! I just read 180 pages of Temple Grandin's new book - "The Way I See It" - and have a new insight into how Julia may percieve her world. Helps to read and understand these things - how difficult it must be to be her. Sometimes we get so caught up in how it is to be "us" but this book opened my eyes to what it is like to be HER. I know several people in Shawn and I's family who should read this book, but will not push it on anyone. So odd how the themes of family, taking a step back, travel through all of our families. I do not feel so alone anymore - this is sad, but normal. Even some of the stuff I have gone through in the last week with Jack and school - all normal for the life of a family with a disabled child. Crazy!

Anyway, Will let you know how Tuesday goes. I hope to have a new career soon, but we will see.......not putting all my eggs into one basket - I have a family to consider here.

Take care, all!

Susan

PDD-NOS

So, Julia got the diagnosis, sort of - PDD-NOS (pervasive developmental disorder - not otherwise specified). So, she is "kind of" on the autism spectrum. This may help tremendously with some insurance issues and may open up more opportunities for her with different programs out there. So, I guess I should be happy, right? And it doesn't change who she was yesterday, or who she will be tomorrow....its just a diagnosis. Anyway, I'm having mixed feelings about it. Glad for the extra opportunities for her, but more aggravated than ever with those who say vaccines don't cause Autism. When I get her case report from the Vaccine Injury Compensation Program - anyone interested is welcome to read it. Vaccines do cause brain injuries which lead to autism - all I have to say. I have living proof.

Susan

Wow, long time since i posted anything.......

Life moves at a very rapid pace, I have seen lately. So much has happened with so little time to document anything. I will try tonight.

First and foremost, my new daycare provider, Kayanna, is a miracle sent from God. She has jumped right in and done above and beyond what I expected. I can't wait for the settlement to hit so I can pay her better for her time that she dedicates to not only Julia, but our whole family. We are pretty sure funds will be allowed for live in care when we get the settlement, and I think she is it. What a great provider and friend she has become in such a short period of time. THANK YOU KAYANNA! Julia LOVES you. We love you for taking the time to take her places, just like any other kid, and being able and willing to overlook the stares that come with doing so. Shawn and I ordered some business cards to hand out to those who give those evil looks, or say those evil things when she is out and tantruming. I experienced this yesterday while at Elitch's with the kids when Julia was melting (from the heat and overstimulation).....can you believe a group of people behind us in line said, "if that were my daughter, I would have slapped her in the face by now"....I just picked up my daughter, held her close, and turned and gave them the evil eye - and to those of you who have experienced my evil eye - it speaks volumes - no words really needed - but I would have liked the business card.

Secondly, I have met an amazing veterinarian who has gone through a horrific murder of his son many years ago, who understands loss, and wants to become a part of my family's life. I so hope he keeps in touch. His son's story was documented in a book called "10 Minutes Till Midnight" and I read all four hundred pages in just over two days. What an inspiration. His biggest thing he has taught me is to stop questioning God. God has his plan, and everything happens for God's reason. It has helped me immensely when I find myself frustrated with Julia. Saturday, as I was towards the end of the book, I snuck in to Julia's room, and just watched her sleeping for about 10 minutes, said lots of prayers for her, and for my family, and she woke up HAPPY, instead of crying like usual, and she had the best night ever. Maybe she felt it, I don't know. I am trying to forgive and not be angry with everyone about what happened to her. It is hard, though, to forgive a pharmaceutical company and a government who knows what vaccines are capable of. It isn't like I have ONE person to forgive for murdering her....because she wasn't murdered - she is still alive, but damaged, and by something manufactured to protect her..but I just know too much about vaccines to let it go. I keep thinking about the other kids I have learned of injured by vaccines. I keep thinking of my friends and the decisions they have to make with their children after knowing Julia and I. I keep thinking of all the new babies arriving happily to their new families who will also suffer Julia's fate. Anyway, I will stop rambling. I will get there some how, some way.

Lastly, Julia started back at school today. She is in a new class, and did just fine today. Shawn sent me pictures from the drop off, and one of Julia's classmate's moms emailed me today to see if we could get the kids together and get to know each other better. Jack is back in school and doing great. He joined the cub scouts and is at his first meeting tonight with Shawn, who is pretty sure he will be a cub scout leader.....like we need another thing on our plate....but that is just Shawn.....we will figure it out and make the time to do it. I'm just glad Jack has this opportunity.

Anyway, things are going well here. Shawn and I are speaking for the "Professional Miracles Foundation" next Monday night at Pradera Golf Club. Shawn has also organized a softball tournament to raise money for Julia's school which is a non-profit run special needs school. All money raised will go to the school, not to Julia's tuition, so if anyone is interested email me or him for details. It is scheduled for October 9th.
Julia is also going to be video taped using her augmentative communication device (her "talker") by the manufacturer, as Julia's Speech Therapist is so impressed with her ability to figure it out. They are going to tape her at Speech Therapy, at her school, The Rise School of Denver, and at home. Pretty excited about that. Shawn and I were also video taped at a round table discussion on children with disabilities and training of respite care providers, which should be out soon. Whew! We are busy folks - but everything we are trying to do is good - and it is all for others - so we feel great about it!

Julia is scheduled for a "stroller/wheelchair" fitting next month to make outings a bit easier, as it is hard for her to walk long distances and she gets tired and her leg starts hurting. She is also scheduled for her next round of botox to "re-straighten" her leg again- the last round has worn off...hopefully the botox will prevent us from having to get her another new brace, as the one we just got is no longer working due to the worn off botox.....ahh, the appointments just keep coming, but - DON'T QUESTION GOD'S PLAN. Yes, Larry, you are right. I will just keep rolling with it.

Thanks to all of you who continue to follow and support Julia and our families efforts for everyone!

Susan

November 4th....

We should have some answers by November 4th....that is when the hearing is set, as both sides have not been able to come to a settlement for Julia. So a hearing as been set, in front of the Special Master, to duke it out and finish this thing up. So, I am looking forward to this being finished....it has consumed my world for three and a half years. I want it DONE. And it will be soon. What a great birthday gift - especially for my 40th... I asked if there was anything else I could do to help, and the attorney was real nice and said I have done all I can and thanked me for being so on top of everything. That was nice - epescially from the mouth of an attorney! HAHA.

So, keep Julia in your prayers for these next few months - this is it everyone!

Susan

From Exceptional Family TV.....these words are so true for my family and I today.

By Renee Charlan

I have been searching for a way,
A way to have a voice.
A way to be a voice;
A way to hear her voice.

I have been searching for a way to figure out what it is I am feeling.
To figure out if I am happy, if I am sad or if I just AM.

I have been searching for a way to be the woman I want to be,
The wife I know I can be,
To be the mom she deserves me to be.

I have been searching for a way to be a friend again,
One who laughs and loves with all her heart.

I have been searching for a way to know myself better,
To love who I am and to learn from my past.

I have been searching for people who know and understand things I go through everyday,
people who understand the loss of dreams, yet always search for hope.

I have found hope.

I have found it through the people who open their lives to us,
Through the families who have become the voice for their children.

I have found it through the strength I see in mothers who never leave their child’s side; Through the friends who are always there no matter what you’re going through.

Through the people who have experienced tragedy and have come out on the other side filled with hope and love.

I have found hope through all of you,
And I thank you so much for the love and support everyday.