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#WordsForAva
$1,065 raised
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17 contributors
45 Weeks running
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It takes a village to raise a child, and we need your support to help Ava in these next steps. Ava is on the brink of verbal communication, so we have a variety of thank you gifts available for each donation (since it IS Christmas)! Read "whole story"

The Short Version

Ava is so close to verbal communication!  Ava has come a long way since we started her therapy regimen when she was 1 year old.  When she regressed at a year old, she had no eye contact and her life was filled with stims (stimulating behaviors) to try to calm her down to cope with the world around her, such as masturbating, hand flapping, spinning, and poop smearing.

She is now communicating her needs with us and taking pleasure in being involved in activities. We have been working hard to build a team to support her as she comes up in the world, and the next steps include:

  • A short hospital stay to conduct an MRI, an EEG, and more blood genetic testing  
  • A referral for Horse Therapy, highly recommended by her neurologist as a non-conventional way to boost her social skills leveraging her loving nature and calm demeanor
  • Physical Therapy to aide in strengthening the low muscle tone in her ankles from late walking
  • ABA services, or Applied Behavioral Analysis, the process of systematically applying interventions based upon the principles of learning theory to improve socially significant behaviors to a meaningful degree
  • An iPad scholarship, to aide in language programs such as VAST and Proloquo2go so that she can use technology as a tool (not a crutch) to work with her speech therapists to encourage verbal communication
  • Katie Beckett insurance, to help with medical services not covered by our HMO health insurance
  • Social Security Disability Income, to help with the loss of income to help provide adequate care for her at home while she is young and impressionable

In order to help us keep on keeping on, I am looking to realize some of my many passions to create a lifestyle company.  It’s a pretty lean startup, but as you all know I LOVE to cook, to make jewelry, to organize events.  I also love learning different ways to make life beautiful from a holistic perspective, and I am fascinated about different techniques and nutritional research out there that is meant to improve our lifestyle.

So came about PS Lifestyle (after my tattoo and my passion for writing and creating).  With this project coming to fruition, I will be able to have a personal outlet for my entrepreneurial pursuits, and it will allow me to be a stay-at-home Mom while my kids (and my husband) need me the most.

I’m starting with the following:

  • The Tea Garden – Handmade freshwater pearl jewelry with Swarovski crystal to grace your personal style, paired with an authentic vintage tea cup (discoveries from my antique shopping) to infuse your home décor.  It comes wrapped in a beautiful little cupcake box and is the perfect gift for pretty much any woman, whether they are fancy or free-spirited.

  • PS Floral Arrangements – Floral arrangements are so EXPENSIVE here in Las Vegas, and they really don’t need to be.  I am providing very affordable floral services at wholesale prices to decorate weddings and events.

  • The Cooking Mentality – A much longer project, I am self-publishing my own cookbook.  The recipes are done, now it’s just photographing dishes and pulling a cohesive piece of literature together.  Pre-orders will soon be available, with a release date of March 2017

The long-term vision is to grow the business to sustain more services that enhance the lifestyle of any home.  The jewelry collection will eventually include more home décor pairings beyond simple bathroom teacup displays.  The Floral Arrangements will move into full-blown event planning with DIY party packages available, and the cookbook will expand into multiple publications, and maybe someday we can open a Café and a little shop.

Our Thank You

  • If you aren’t able to give a monetary donation, you are still able to “SHARE”!  We would be over the moon and would love to send you Thank You card with some of Ava’s “art” 
  • A $10 donation will get you a framed picture of Ava to put in your home, reminding you that we are Ohana
  • A $25 donation will get you a free shirt (pictures to come soon), with one of two messages “A Force to be reckoned with”, “Our TEAM is Strong” or “Strong, Sleek and Chic” and options to put her picture on the front
  • A $50 donation will get you a pre-order of my cookbook, release in March 2017
  • A $75 donation will get you a Tea Garden gift set
  • A $100 donation will get you $100 toward flower services (Las Vegas and Southern California only!)
  • A $200 donation will get you all of the above!

If you prefer to donate more but receive a different gift, please let me know!

 

The Back Story

With every story comes some grueling details, good and bad.  Here's some more to our story if you have the time and interest to continue on!

Ten key facts about autism:

  • 1 out of 68 children under the age of 8 are affected by autism. 4 out of 5 are boys.
  • Funding for medical research in autism ranks the lowest behind cancer, diabetes and AIDS, and has the highest prevalence than all of them combined.
  • Autism is the fastest-growing serious developmental disability in the U.S. and there is no medical detection or cure for autism.
  • Every 20 minutes a child is diagnosed with autism and Autism costs a family $60,000 a year on average.
  • In the U.S., 50,000 youth with autism are transitioning into adults without adequate vocational and transition planning.
  • More than 7,000 children and youth in Nevada are living with some form of autism spectrum disorder.
  • The cost of care for one untreated child can be as high as 6 million over the lifetime. We can invest now in their future or pay greater in the future.
  • The typical age at which most pediatricians determine a child to show signs of autism is at three years. With better training and diagnostic skills, pediatricians should be able to diagnose the condition of the child as young as 18 months.
  • The typical parent of an autistic child will spend 8-10 hours a week just transporting the child from one appointment to another doctor or therapist.
  • Insurance coverage for treatment of autistic children covers about 30-40% of the average cost of care

 

Update on Ava

Recently Ava has started hitting herself repeatedly in the head, and she has been showing new signs of inflammation.  She constantly has a rash on her chin, her “baby” eczema has returned in full force (not just dry skin due to the weather conditions), and she has broken out in hives for no particular reason (no changes in diet or exposure to anything beyond her normal routine).

Her balance has not been improving, and her teachers have raised a concern for her constant tripping and her “dropping” to the floor beyond typical toddler tantrums.  She is really hard to keep on her feet and is really floppy, and her neurologist is now pressing us to conduct further testing to make sure there is not a rare condition contributing to these new symptoms.  We have just conducted a full CMA (chromosomal microarray analysis) and have ruled out any chromosomal duplication, deletion, or thousands of other genetic anomalies as the test has returned negative.  We are moving forward to a hospital visit where we Ava will receive an MRI to assess her brain imaging, and while she is under anesthesia we will also be re-doing an EEG to monitor for seizures and taking blood to test for other genetic conditions not covered by the CMA.

He has also recommended that she start Horse Therapy to begin bonding with animals, which he says has helped young children like Ava improve her social skills.

Physical Therapy is still at the forefront of items we need to schedule for Ava to help with the low muscle tone in her ankles and her poor balance.

We are in the middle of applying for a scholarship for an iPad with certain expensive programs that aide speech therapists with nonverbal cases.  Some programs include PECs visual aides to give Ava assistance in expressing her needs, and others which uses different techniques such as VAST and Proloquo2go.  We have a speech therapist that incorporates music lined up to schedule once we are able to purchase an iPad to use as a tool.

She is on the waiting list for ABA services, which will help improve the core functions of her learning capabilities and her behavior toward learning, interacting, and communicating

We are also working to secure Katie Beckett, which is a government program to supplement our out of pocket costs for her medical that are not covered by insurance.  In order to get Katie Beckett, I have been in a long arduous process with Social Security to receive disability income, which needs to be denied strangely enough before Ava’s case can be appealed through the Desert Regional Center for autism services.  With a successful appeal, we will have Katie Beckett and monetary assistance for the loss of income I have experienced to be able to stay at home and care for her at her level of need. 

Taking hold of our income will allow Jesse more rest.  The poor guy wakes up every day at 4 AM and works tirelessly from 5:30 AM until 5:00 PM, and then we switch cars so that I can work a few evening shifts until the wee hours.  Both of our jobs have been incredibly supportive, but we eventually want to take hold of our financial lives and live beyond paycheck to paycheck.  We want to save up to move back to Hawaii, where I can help my Mom with her Real Estate (and impending retirement), where the kids will have the beautiful Hawaiian culture and our big Ohana to grow with, and where we have a greater sense of community when it comes to Ava’s special needs.  Unfortunately, Las Vegas is the worst state for education, especially within the special needs programs.  Her teachers this year are phenomenal, but we also have heard some horrible things about the education system in general.  FEAT has helped to provide representatives to make sure our children are safe from physical abuse, and also to make sure the teachers are implementing each individual IEP (Individualized Education Plan) to hopefully bring our special children into mainstream education.

My Story

They say it takes a village to raise a child, and you better believe that there is some truth in that.  In having children, I’ve have grown in ways I never could have fathomed.  I’ve learned many things, but the traits I hold dear to my heart are compassion, patience, trust, drive, and tenderness.

When I became pregnant with Ava, I was not ready to be a mother.  Her kind little spirit managed to heal my own, and I started to develop this loving tenderness in my demeanor, and I was given no other choice but to learn trust and drive to get from one day to the next.

I learned compassion for my mother, and gained insight to different perspectives that the many people that helped to raise me might have had.  As a child, my own birth mother struggled with drug addiction to the point where she was unable to feed us and care for us.  I never understood it and kind of avoided any conscious emotion toward my (nonexistent) relationship with her, but when I had the choice to become a mother, I gained more compassion for the journey and the sacrifice.  And I mean sacrifice in every positive connotation possible.  To love and give life to a piece of yourself is to understand the true meaning of evolution.  To be blessed with children is not everyone’s God given right, it is a little soul that finds its way to you because it needs you just as much as you need them.  I believe every little soul, whether the child is born or lost, is a blessing and an important part of who we become, and I commend everyone for their own stories.

My own mother gave me the gift of life, and I thank her for that.  It took a village to raise me, and living through a few foster homes, I experienced so much by being raised in different atmospheres and I have so much love for every single person who gave me a piece of their hearts along the way.

The patience came much later in my path as a mother.  Not when I was 41 weeks overdue, not when I was attending to the crazy newborn schedule, not when I was working long work weeks at the law firm to keep our family afloat.  The patience came when I found out my daughter was not going to have an easy life when it came to her development.

Morning sickness hit me at 4 weeks, and I found out pretty early that I was pregnant with Ava.  My morning sickness was so severe (with both children) that I was diagnosed with Hyperemesis Gravidarum.  I still maintained whole food prenatals, DHA and an adequate amount of folate, and both children were born above 7 lbs and very healthy.  Ava was exposed to antibiotics in my third trimester when I was hospitalized for a kidney infection, and she was born at 41 weeks past due, and decided to greet the world when my water broke and there was meconium in my amniotic fluid (she pooped).  Due to the risk of infection, labor was pretty intense and I had to push through with Pitocin and eventually move into an emergency c-section when Ava’s heart rate dropped during contractions.

Her real struggle was apparent around 3 months when she started having eczema flare ups that required topical steroids to manage.  When we introduced 50/50 breastmilk and formula diet at 5 months, we found that she had a dairy intolerance and had to switch a very expensive non-dairy and non-soy formula.  After about 12 months, I really noticed a regression in her attention span.  5 days after her first birthday was the first day I really knew my life and Ava’s was not going to be normal.  We had just received her 1-year boosters with the MMR and her physical, and she had her normal fever and eczema flare up.  Those 5 days later, we went to little Liam’s 1st birthday party, and that’s when I noticed that Ava wasn’t social.  She cared very little about the other kids, toddling around her and trying to engage her, and preferred sitting and banging 2 blue balls together in the ball pit.  She still wasn’t walking at the time, and I felt like the world was just whizzing past her while she sat in her own little bubble, content nonetheless.  We had to leave the party when her fever returned and a huge onset of hives (her first one) occurred.

Since then, I was constantly raising my concerns with her pediatrician who unfortunately brushed my observations aside and said that Ava was not eligible for Early Intervention until 18 months (which was not true). 

When we finally started receiving Early Intervention services through the government, Ava learned how to walk in physical therapy at 22 months old.  Progress has been incredibly slow, but thankfully there has been no regression in her learning.  She is still very loving, she engages a lot of the time and her eye contact has improved.  Now with her transition into a school classroom with typical peers, she has learned to stay in designated centers for activities, and she squeals with glee when we arrive outside her school each day.  She loves her teachers, and the children love her very much though she tells them NO quite often when they get in her space.  She prefers coloring on white space only, and LOVES books.  She works well with puzzles, and her teachers have been over the moon because they swore she said a couple of colors and “thank you” just yesterday.  She gestures when she wants something, and is now able to walk almost anywhere with you holding her hand.  She’s trying to communicate, and her language is almost there.  She went from some very high stims (stimulating behaviors) such as poop smearing on the walls, to telling us now whenever she has a poop so we can change it. 

We have just received a donation from a wonderful friend of Jesse’s, the founder and genius of Langenburg water, and he is gifting a formula to infuse Ava’s immune system and repair any possible inflammation that has raised concern through her multiple skin conditions, food allergies, and cognitive impairment.  We have started giving her a probiotic and she takes her multivitamins and DHA every day, and have heard great things about taking a vitamin called phosphatidylcholine and are considering including it in her regimen with her neurologist.

Our TEAM is Strong

Ms. Megan Ms. Megan and Ms. Diane

Ms. Megan, Ms. Diane, and Ms. April at the Gordan McCaw S.T.E.A.M (Science, Technology, Engineering, Art, and Mathematics) Academy, Autism Kids Program.  There is an 8:3 ratio of kids to teachers in her classroom, and they have 6 typical peers (no autism) with just Ava and another autism student added to the bunch.  The low ratio allows her much-needed attention and their training in special needs helps with things such as sensory processing disorder and transitional tactics, while including her with typical peers helps to mainstream her.

Dr. Raja

Dr. Roshan Raja, Child Neurologist – assisting with genetic testing and monitoring the medical side of her condition and symptoms.  We are thankful that he is extremely thorough and diligent in his process.

Max and Karen Langenburg

Max Langenburg, Founder of Langenburg Technologies.  He has worked wonders in purifying water and has been working with many companies to remove sludge, aluminum, contamination, and other impurities from water resources using revolutionary techniques beyond ionization, reverse osmosis, and other methods.  He works with water also to remove contaminants from the body.

                www.langenburgtechnologies.com

Cari Schaefer

Cari Schaefer – Working holistic wonders and providing nutritional and supplemental advice to support Ava’s dietary needs.

                www.sustainablehc.com

FEAT of Southern Nevada – providing support groups, scholarships, and governmental assistance in making sure that an Individualized Education Plan is appropriate and implemented correctly. They provide advocates to monitor the integrity of the public school system and any complaints that may arise. They also have guest speakers with many different services that present to give us options with different methods to work for our kids.

Grant a Gift Autism Foundation – They work with companies to provide autism-friendly events and family inclusion outings in the community, such as the Blue Man Group sensory-friendly show. Events like this help us to get out in the world without worrying about the squealing and tantrums that tend to happen with autistic children that some just don’t understand. They also work with families to help kids build social skills in the community, and they are working hand in hand with UNLV to further autism studies.

Please!

I humbly ask you to please stay with us and be present in our world.  Please be a part of our village, because it does take a village to raise children, and it takes an extra dose of patience and understanding to raise a child with special needs.

 

 

 

 

 

 

 

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