Amaya’s Story


Update: October 30, 2008 - Help Amaya attend the UCLA program for autistic children starting Nov. 10th, 2008


Written by: Pattie

Our beautiful daughter, Amaya Rose was born on August 9th, 2006 at 12:46am.  She was a perfect bundle of love who was gorgeous, healthy and who liked to eat.   She also liked to express herself specifically when she was hungry, tired or had a poopy.  She was always a colicky baby who enjoyed being swaddled, swung and who loved the sound of running water – clearly she had sensory issues.  Early on, we discovered Amaya had acid reflux.  It was pure misery.  Amaya was crying most of the time she was awake, was spitting up most of what she ate and I was losing my mind.  The lack of sleep and constant crying was like nails on a chalkboard.  Her acid reflux caused her so much pain until we got her on prevacid at 4 ½ months of age.  She would still have the projectile vomiting, but she wasn’t uncomfortable anymore.

Although Amaya was not always comfortable, she hit her milestones on time until after 6-7 months.  She did have reactions to her vaccinations on many occasions, but we were told by the pediatrician’s office that her reactions were normal reactions and she would be fine so I didn’t question it.  They were the experts and I believed in them.  She continued to grow and was usually in the normal growth percentages for weight and height, but did have a smaller head.  Nobody seemed concerned so I wasn’t either.

Gradually Amaya started to fall further and further behind.  Prior, she was one of the first of her peers to hit her milestones, then she was on target with her peers, and then she became one of the last ones.  As time passed, we saw more and more babies her age, and younger, pass her.  Initially we thought she was a late bloomer, but reality started to sink in that something was wrong.  We had her evaluated by the regional center at 9 months, only to be turned away because she was behind, but wasn’t far enough behind.  They thought she would catch up.  We would go to the doctor’s offices for our check ups and they would tell us, “She is just a late bloomer.  Just wait and see.  There’s nothing to be worried about.”  We went with it and believed there was nothing wrong with our little angel.  It wasn’t until October 26th, 2007 that I realized something was very wrong.

My younger brother was turning 23 and our good friends were giving birth to their first child, a healthy baby girl. I remember being tired because Justin was away on a business trip and he was always so helpful in the mornings, but through my heavy, sleepy fog something was nagging at me. Something wasn’t right with my little Amaya. The “A” word was always in the back of my mind, but I never went there. I didn’t want to.

Our day started off like it normally did with our morning routines, going out to run errands and some free time for me during her naps. After her first nap I usually let her have some time to herself. She didn’t like to play with me and never respond to my attempts but I convinced myself it was good for her to learn how to play independently. I was sitting on the steps observing her as she played in her playroom like she usually did. She ever so casually picked up one of her favorite wooden blocks with numbers, pictures and letters on the six different sides. She proceeded to examine the block, twisting, turning and manipulating it until she found the number side. She then cocked her pretty little head to the right and proceeded to rotate the block clockwise over and over and over again. I was shocked. How could I have not noticed this before! She tossed that block, pick up another and did the same thing. Again, tossing that block over her shoulder and repeating that process for 15 minutes straight. I sat there and watched her as I felt all the blood rush out of my face into my stomach. I felt like I was going to throw up.

I grabbed my computer, looked up some common signs for Autism and read through them. No eye contact – check. Her eye contact was non-existent. No language or presence of a language delay – check. The little language she had was gone but we were positive she was focusing on other skills. No social contact – check. She never acknowledged anyone and only looked at me when needing something. And then I saw repetitive behaviors – CHECK! I logged onto my email account, saw my sister was online and I started to type. With big, slow tears starting to drizzle down my cheek I typed “I think Amaya has autism.”

After I typed those 5 little words, I cried like I have never cried before. I couldn’t speak so I continued to correspond with my sister through typing and the more typed the more intense the crying became. My sister tried to reassure me, but nothing helped. It hurt so bad but felt so good to cry. I just couldn’t stop. This cry was long overdue. It was always a fear but now my fear was our reality. I could not believe it. Why her? Why not me instead! As our day continued, I cried. She didn’t react nor did it seem like she cared. She didn’t understand why Mommy’s face looked like that. Did she even know who Mommy was? I cried for what seemed like an eternity. I cried for the loss of the child I thought I had. I cried for all the things she might not be able to experience. I cried because I was scared for her and what her future will hold after I’m long gone. Who would take care of her?!? I had so many fears! My heart was breaking into thousands of little pieces. A pain so indescribable only other parents in similar situations could relate.

I tried to compose myself and got on my hands and knees with Amaya and got in her face. I said her name with zero response. I tried to get her away from the blocks to play with something else but she turned her back to me. I held her gorgeous little face in my hands and begged her to look at me. Nothing. I saw a shell of a child with empty eyes. I started to panic, but then I crumbled and cried some more. I called my husband who told me I was being paranoid and I told him what I saw. I begged him to do a little more research while requesting him to read an article I emailed to him because I so badly wanted him to tell me I was crazy. He called me back saying “That sounds like Amaya.” He was calm and I think in shock. He was stuck in traffic 6 hours away and I so badly wanted him home with me. I was all alone and just wanted someone to help hold me up. At this point, my eyes looked as though I had gone ten rounds with Mike Tyson in his prime and all I felt was numbness.

I grabbed my computer with more tears streaming as I frantically was searching for a cure. I knew it had to be there somewhere with some magic pill, or some wizard or witch doctor. I came across all sorts of diets, alternative medicinal regimes and engulfed myself in all this new information because I so badly wanted to “fix” my daughter. Every free moment of that day was devoted to finding out as much information as I possibly could about autism and what I could do now! I continued on with Amaya the best that I could, reading books, feeding her lunch and dinner and giving her a bath, which she loved. I just wanted to make it to her bedtime so I could figure out how to help her. After Amaya had gone to sleep, I collapsed on the couch with my new best friend, my Dell laptop, which I nicknamed Delia.

I came across some user groups where parents and grandparents traded secrets. They spoke about all the available therapies, stories and about raising these amazing and wonderful special needs children. These people were so unbelievably positive, encouraging and so normal. There in those people I found what I was looking for…pure love, hope and endless amounts of information. As my exhaustion from the emotional roller coaster of a day was kicking in, I felt something warm and comforting. I felt a sense of relief and calm come over me. I finally figured out my precious angel who always put a smile on my face. I was happy that I could now help her and was beginning to realize that she isn’t going to be lost in some black hole labeled autism. I knew I needed to grieve and I accepted the journey wouldn’t be an easy one, but I knew I could help her.

At that moment, my outlook on life immediately changed. I didn’t care anymore about my pedicures, the brand of jeans I wore, or what was going on in the world around us. I just cared about my family and, more importantly, that my daughter was here with me. I thought about all the families who have lost their children to cancer, freak accidents and to unsafe environments. I began to mourn for the families who couldn’t provide for their young or put food on the table. I felt so blessed and fortunate. Not fortunate that we had a long hard road ahead but rather because I knew I could help and hold my daughter.

Since early 2008, Amaya has been following the program of Dr. Michael Goldberg in Tarzana, CA and is also receiving a slew of therapies, including Occupational therapy, ABA therapy, Speech Therapy, Physical Therapy, and Early Intervention.  The therapies have been so helpful in her slow, yet steady progress, but she needs something more.

Amaya has made great progress in less than a year of therapies and treatment, yet at the moment (age 2), Amaya is still not speaking, does not point, clap or wave and is at the cognitive and social levels of a 10-12 month old baby, but we have so much hope for her.  We believe in her and in ourselves and we know we are going to help her get to the best possible place we can.

Recently, we have just received word that there is a spot open at the UCLA early childhood partial hospitalization program.  There is a very long wait list (we put Amaya on the list about a year ago) and many kids do not get selected for enrollment.  We feel so blessed to have this opportunity.  Amaya will be provided with intensive 1-on-1or 2-on-1 therapy for 6 hours a day, Monday thru Friday for 10 weeks.  This is the same program Jenny McCarthy sent her son to.  Her son is now recovered at the age of 6.  Unfortunately, this program does come at a cost.  Insurance will hopefully cover some of the costs, but we are expecting to have to pay thousands of dollars, in addition to paying for the doctor bills, medications as well as additional private therapies that are not covered by insurance.

We are reaching out to everyone we know to raise funds to give Amaya the opportunity to attend the UCLA program. We are in a time crunch as the new classes begin on November 10th.  We are doing everything we can to insure that she can attend.  Justin has agreed to give one hour of his time to answer anyone’s technology questions, make recommendations or consult on computer networks for IT professionals, etc for anyone that donates $25 or more. We would also be happy to help any other families that are in the same situation. We have learned a lot in the process and would be happy to share with them or experiences, recommendations and contacts. Facebook: http://profile.to/justinlofton - Linkedin: http://www.linkedin.com/in/justinlofton

We will happily keep everyone updated on Amaya’s progress in this journey we are faced with. Your help, at any dollar amount, would be a blessing. I want to thank you in advance for your generous donation!


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Update: August 23, 2008

Amaya’s Current Therapies:

  • ABA Therapy 10 hrs per week - We have JUST received approval for increased hours for Speech, OT and ABA.  We haven’t started ABA but we did have a meeting to discuss what we were to expect, what they need from us, and to inform us of what ABA is.  We have committed to trying ABA because we know two families who have recovered children - one from ABA alone and one from ABA and NIDS treatment combo - but we also feel it’s one of the missing components for Amaya.  We really feel that she needs someone to go through the motions and to help establish the connections between her neurons and then we will focus on generalization.  If it doesn’t work, we will re-evaluate, but we feel it’s something we need to at least try.  Prior to ABA, we had been receiving 1 hour of Behavior Therapy to work on her biting, mouthing and her tantruming behaviors.  It has not only helped me, but when my friends have questions, I ask on their behalf.  I’m going to miss our therapist who is super cool and who helped us get more hours for Amaya.
  • Speech Therapy 2x per week - Amaya is non-verbal so we have just started PECS and she is responding rather nicely.  Prior to PECS Amaya wouldn’t hand us anything.  Now, she is not only handing us the picture during PECS but she is starting to hand other objects to us too.  We are actually going thru the PECS exchange anywhere between 35-50 times per day.  It is hard, but the persistence is paying off.  We also use sign and Amaya can sign “eat”, “more” and has her own variations for “drink”, “open” and “all done”, but because she has motor planning problems, we don’t think sign is going to be her main means of communication.  Her therapist, Shamim, is very good and we love her technique.
  • Occupational Therapy (OT) 2x per week - Occupational therapy has been wonderful for Amaya.  Her sensory issues have always been one of the biggest problems for her and we are making headway.  The wonderful therapists (Lowena and Nancy) at the Child Development Center (aka The CDC) in Simi Valley have introduced us to the brushing technique, the Therapeutic Listening and have really helped us to enable Amaya to take in and organize everything around her.  The Therapeutic Listening has made the biggest noticeable impact, but we honestly feel it’s a combination of everything that has helped her.
  • Physical Therapy (PT) 1x per week - Amaya’s biggest gains have been in her gross motor skill area.  Prior to PT, Amaya was an avid knee walker with no signs of wanting to walk.  After she learned to walk, she has started to really run and she practices all the time by running in open areas of the house.  She has started to climb on furniture, is trying to walk up and down stairs (with support by holding onto our hand and a railing).  Her therapist Karen, is also through the CDC and she is extremely knowledgeable.  The amount she knows is truly amazing.
  • Early Intervention (EI) 1x per week - I owe Amaya’s EI therapist, Sandy of DMI.  She was the person who came to evaluate Amaya and really go to bat for us when the Regional Center coordinator was only going to prescribe 1 hour of EI for her.  Sandy had Amaya’s best interests in mind and recommended PT, OT, Speech and Behavioral therapies for Amaya.  She has been our guardian angel.  She is extremely kind, honest and she just loves children.  It shows when she is working with Amaya.
  • Hanen “More Than Words” program - Ends in mid September - This class has been great!  For those of you that aren’t familiar, this program is a class for the parents to try to teach them how to obtain more language from their children in a natural setting. They provide a book that includes easy and a plethora of  examples of what you can try at home.  It’s also nice to be able to reference back and remember how and what to focus on for your child.  We realized we were using enough gestures, weren’t pointing enough and weren’t speaking as simple as we needed to.  Also having more speech therapists to ask questions of is great too.

The information on this website is for educational purposes only. It is given in good faith to help people understand more about what our children are dealing with. It is not intended to replace or supersede patient care by a health care provider. If an individual suspects the presence of an illness, that individual should consult a health care provider who is familiar with the diagnosis and treatment of their condition.