Thursday, January 31, 2008

One BUSY And Very Crazy Week



In the last week our People magazine article came out. A camera crew from 'Good Morning America' was here almost the whole day on Wednesday. The day before I was making calls to coordinate them going to Emma and Nephi's elementary school and talking to one of our Dr's at the Autism genetic study we've been involved in the past 10 months. We'll know tomorrow when the show will air next week, could be Monday or Wednesday--stay tuned here!

At last count, hold on a minute... let me check... we've had 96 individual emails, 30 blog comments, other Autistic parents have purchased 217 of our 'Autism t-shirts' (that's twice what we've had since we put them online last spring), on this blog people have looked at my profile 293 times and Mom's has been checked 454 times.

Most of the family has been sick with a lingering cold. Mary threw up two nights ago, I took Sarah to the Dr on Tuesday, Emma barfed at school Tuesday, Robin's voice will sound much lower and hoarse during the 'Good Morning America' interview, Sarah made it back to school today after a week and I had to go to Ammon's school today to take him home, because his nose started running like a faucet.

We got info on a different school that Sarah could attend since she will not be able to go to her 'Autism only' school here since I missed getting in the paperwork on time and the school only has half as many openings as Autistic children that need to get in.

We've now received calls from 3 different daytime shows that are talking with us about appearing in the near future. They all wish to remain anonymous (so don't ask) and we are determining which one will give us the most time and best exposure. Sure it's our 15 minutes of fame, but the main reason we decided to start all this about a year ago is threefold:

1) We want to educate this country about Autism, its ups and downs for the families and Mom's and Dad's and other general knowledge.

2) Increase the tolerance for Autism, where people will not assume someone is a bad parent just because their child(ren) are acting up. And especially cause them to pause before making any uninformed or ignorant comments.

3) Make the world aware that Autism is financially devastating for families. Find ways to have needed funds get into the parents hands for what they feel is best for their children. Be it treatments, interventions, diets or home needs. Our poll to the right shows most of the visitors here agree. Money spent now will decrease the money needed and the 'burden' on society required later when Mom and Dad are no longer there.

Then there was today. I was at Mary and Sarah's school to talk with their teacher about how they are doing. Mary, 3, (PDD-NOS) is doing pretty good and is at the worse just a year or so 'delayed'. Sarah, 6, (classic Autism) however worries us, her average 'age' is from 6 to 18 months. Many times she's look at us and get upset like she's trying to communicate and just can't. Like she's trying to get herself out and can't find the way. It's so hard and sad.
At two o'clock the Autism genetic study worker from the University of Utah came by to get blood samples from Mary. Yes, Mary. I was very concerned how she would react, it was her first needle poke. I held her in the recliner, Bobby held her arm steady and the worker put on the big rubber band thing. The whole time she was watching the whole thing and smiling brightly. We talked to her gently and then it came time for the stick... nothing. She continued to smile and watched as he took six small vials of blood. "Look at the little blue butterfly on your arm Mary", I told her. It must of helped that she has seen this worker come to our house many times over the months AND his technique was perfection. Took it out, put the stretchy bandage on she wanted a bottle and she was on her way. To say the least I was quite surprised. When we did Ammon last year it took THREE adults to hold him down.

Our Schwanns delivery driver, Mike, came by about 4. This is one of the prizes we won when Robin won the 'Busy Mom' contest last year. Then Robin went to Cub Scouts for the running of the Pinewood Derby.

To top off the day, the three youngest got their SSI payments shorted AGAIN, second month in a row. I've written and left phone messages. Guess I'll have to go in and see if I can get things straighten out.

Here are some of the comments on emails sent to us that touched our hearts.

"...I love your tee shirts...when ricky was little his actions drew a lot of attention...you know what i mean.We could have used one of those shirts!..."

"...The "gentleman" said "Some people need to learn to control their children." At that point I turn(ed) politely to him and replied, "He is Autistic." He then said (rudely), "How was I supposed to know that? It's not like he's wearing a sign..."

"...You both are truly a blessing from God to both have bared these children and raise them in such an amazing and loving way ! God Bless you Both... God Bless you ALL !!"

"...Please know that just by word of mouth about the internet and websites I am for sure that your foundation will get off on the right foot!! We all need some support from some where..."

"...I cried as I read your story. Your family is beautiful!"

"...I am going to put the photo of John hugging Ammon up in my kitchen so I can see it everyday..."

"...I have read the article written in the People magazine, and I hope it will show some in light on people who do not understand the many forms of Autism."

"...I read and re-read and re-re-read the article in People magazine and the more I read, the more awe-struck I became. You and your family are truly the example of dedication, love and preseverance. Your strength and outlook on life amaze and inspire me..."

To Emma: "...You are a very fine artist! We would like to buy a piece of your art for my room to add to my collection. Would you consider selling us a piece?" (Emma says yes)

"...I will be watching you site and hope the non-profit gets started--we all need it..."

"...Your article was reassuring because it reminded us we aren't alone out there..."

"...Like your kids, our Peter has no friends...and thank goodness he has his siblings. Both my husband and I have felt so much despair in our lives, and thank goodness we have each other..."

"...We read the article in People magazine and my mom started crying because she thought having one autistic son was difficult. My mom has been deppressed about our situation lately but now you guys have inspired us to look at the brighter view. thank you!"

Our thanks to all, now do keep those cards and letters coming!

Dad

12 comments:

Colleen said...

Wednesday I was stranded at the Orlando airport after taking my son with Asperger's to Disney World for a week. Tears rolled down my face as I read your story in People. I am just the mother of one, but I know exactly the frustration, despair and hopelessness that comes in the early days of a diagnosis.

Best of luck to your family. I will keep you in my prayers.

Anonymous said...

I really tried to go through your website for Ideas, is this more for getting donations? I'm a single mom with 2 boys one with add and one with autism I also work full time to try and pay for all of my sons medical expenses. Due to the father not helping cause he's in denial I have been all alone. I here all these new recoveries and I can't ever find what it is. How come all the kids with autism in celebrity homes appear to be "normal" due you need a tremendous amount of money to help your child? Angie My email address is umangelakz@yahoo.com

Mom26children said...

Good luck with all the media blitz...just be careful what you "wish for".
The 15 minutes can be brutal...
Jeanette

Dadof6Autistickids said...

Dear Angie (Anonymous): Seeking donations? Not our main purpose, however getting the AutismBites Foundation off the ground to help parents, sounds like yourself, get the funds for what THEY feel is best for their child(ren). It does appear that well financed celebrities are able to afford any and all treatments that can help their children. Our hope is for the AutismBites Foundation to help 'regular' parents like you and us.

Mom26children: It hasn't been too bad yet, just 3 mean people so far.

Mom26children said...

John and Robin,
I look forward to your show. We were on GMA several years ago. They rescheduled the airing many times.
Please know that I wish you and your family nothing but the best. But, after our 15 minutes of fame, we received horrible emails and phone calls. Some people are very mean. Of course, you 2 are not as outspoken as I am.
I am so happy for you and your family.
Who is your GMA producer?
Jeanette

momof1 said...

Hi I am a mom of 1 and I was sent your article from the People Magazine and I can not imagine what you go through from hour to hour let alone day to day. I do have one question for you though have you heard of the ABA or it may be the IBI not sure? I would just like to know if you have heard of it what is some of your feedback on that as my son will be starting it in March. My son who is very verbal was diagnosed in 2006. Good Luck with all of your future endeavours I will keep you in my prayers

One who picked up the fork said...

I once watched extreme home make-over and the family had 5 autistics. WHoa! Watching some of their story, and reading your really made it sink in that we parents of Pdd's need more lime-light. Our family is smaller a certainly on its own rollercoaster, however we do send our best wishes and prayers your way. We're having our own version of a struggle for money and with three in diapers... well you get my point. I vertainly do hope that your 15 min. gets you all in the direction of what you need. I've got great therapy ideas that have lessen'd the lenth and frequency of tantrums if you want some parent to parent ideas.

Mom of undiagnosed 14 year old said...

Wow, I admire you for what you do. My son is 14 as well and has been going from doctor to doctor getting many many diagnoses...from ADHD to Tourettes to Anxiety to OCD, but when I asked about Autism the other year, Dr. says NO, too high functioning. He has NO friends and has been suspended on several occasions due to not being able to communicate with or understand the communication patterns of todays teens. He has MANY MANY other attributes of this disorder as well. I go to church with a Pediatric Neurologist, and she believes, by watching him, that he has Aspergers'. We are waiting to get a referral to see her...soon I hope. May God Bless YOU ALL! "It is the blessing of the Lord that makes us rich." Prov.10:22 Loves, Carolyn
I have more info on Matthew on my MySpace page www.myspace.com/carolynlafevers

pshaw said...

I can't imagine the load this family carries. And, I think the mom would need a psych evaluation if she hadn't made the comment about burning it all down and starting over. I know of two other cases where social services took "realistic" comments to severely alter people's lives. On the other hand, you have families like the Gravells who were in the system and penned their children like animals. The system is too big and inefficient. But, I hope this family gets every penny of my tax dollars to help them with their situation. And, I do believe they were picked for this challenge because they are special.

Anonymous said...

Hello! My name is Amanda and i recently moved to Utah from Missouri! I have three boys that have been diagnosed with fragile x syndrome. I also have a daughter who does notcarry or have fragile x. Your story was very touching. It makes me sad that they do not have the special schools and intense programs for special needs children as they did in Missouri. My now 9 year old son attended an absolutely wonderful school where he received music therapy,occupational therapy,physical therapy,and also ABA . The best part is it was a public school it was free. In Saint Louis they have their own special school district which consist of 5 or six elementary schools just for children with special needs and a junior high and high school Children receive exceptional services for whatever their needs are..I was very disappointed that sevices are so limited here. It has been a major struggle within myself to get the best possible services for my children here in Utah but it is so limited.I am so blessed to have these wonderful boys in my life they teach me love, they teach me how to love,they teach me to laugh, there are times when i do want to cry there are times i question heavenly father's faith in me to take care of his special children but he does love me so much that he does have faith in me. I would love to meet with you and talk with you. My name is Amanda and my e-mail address is ldsmommy4@yahoo.com. Please contact me anytime.

Glenda said...

God bless you. I have one son (6) with PDD and a daughter with Prader willi syndrome and spina bifida. PWS has many similarities to autism.

I would LOVE to get my hands on one of those t-shirts, sometimes I really wish my won WAS wearing a sign. How can I go about getting one??

Please let me know. (glenda.leigh@gmail.com)
Thanks!

Gina said...

Did you say SSI Checks? Do you get 6 SSI checks, one for each child? What's that like, 2,000 dollars a month? I hope that helps a little. I know it's got to be difficult. Any family having 6 kids has to be. I stopped at 2 because it was just physically and financially draining. I felt i needed to give more individual attention to mine. I didn't have the extended family some do. Well, i do wish you the best and that God give you all the strength to endure.