Adjusting to life!

There are days where I forget to breath. Payton is progressing slowly but I can tell there has been some changes day by day. Better eye contact, dragging me around to different areas of the house trying to express her wants and needs.  I have been told it will feel like sometimes you will take two steps forward and then three steps back. 

This is a place where I can share my feelings and I plan on telling the raw truth. My mind is consumed daily about Payton's future. What will she be like? Will she ever talk and carry on a conversation? Will she get worse? Will she get better and catch up? Will she live with us forever? Will she get married and have a family of her own? Those questions haunt me everyday. I try my best to remain positive but it is so hard because the diagnosis is just that. There are no guarantees or promises of what she will do but I wish I could look and see what it will be like even a year from now. 

Autism is a spectrum. No two children are alike. Every child is different and the unknown is eating me inside. I want her to be the best she can be and I will try everything I can in my power to help her along this journey. A journey is exactly what it is. This is part of my life now. I am not in denial. My daughter has Autism. I have said it over and over again and finally I am believing it myself. Am I doing the right thing for her? Is she getting enough therapy? Are we choosing the right therapies? The Internet is my best friend and my worst enemy. I cannot help but google success stories so the hope stays alive and I don't feel sad. Hope is such a powerful word to me now. I hope that one day I will hear her utter the words mommy. Or say I love you or just look at me when I talk to her. For now, I force myself to get into her world so she does look up and smile. She is the most beautiful girl I have ever seen. I can see the beauty she has inside just by looking into her deep blue eyes.  She is loved so much and everyone who works with her just adore her to pieces. 

Enough about me and my feelings and on to some positivity! I put Payton on the GFCF diet(Gluten Free Casein Free) over a week ago. She was getting really bad eczema and it wasn't controlled where it usually was. It was going on her torso and her face. I have read so many success stories about how it has helped others with eczema who are also on the spectrum and figured why not try it out? So I hit the store and removed gluten cold turkey and all of dairy. The benefit of a gluten-free/casein-free diet is based on the theory that children with autism may have an allergy or high sensitivity to  foods containing gluten or casein.  Children with autism, according to the theory, process peptides and proteins in foods containing gluten and casein differently than other people do. Hypothetically, this difference in processing may exacerbate autistic symptoms. Some believe that the brain treats these proteins like false opiate-like chemicals. The reaction to these chemicals, they say, leads a child to act in a certain way. The idea behind the use of the diet is to reduce symptoms and improve social and cognitive behaviors and speech. So far after a week I have seen improvement in eye contact, awareness of her surroundings and of course her skin is so much better. All of her eczema patches are gone. So far so good I would say. She sees an allergist to get tested on the 26th and I am thinking she is allergic to gluten and dairy but we will see! 

Payton is the light of this house. The boys are so incredible with her and she actually goes to find them sometimes. She is such a joy and we are so blessed to be her parents. With patience and persistence we will continue on this journey together as one and spend time dwelling on what she can do, rather than what she cannot do.... yet! 


                Do you think she is close enough? 

Our Daughter is everything I ever hoped for and more

It has taken me a week to write this post. I have started numerous times but for a few days I was in fog and couldn't really write clearly and thoughtfully. I had a lot of anger and sadness and I feel like I have risen above it... for now... No promises :)

Going into the appointment I was hoping I was wrong. I was hoping he would say she was just delayed without the Autism label. When he was finished doing his assessment he looked at Devin and I and said she is on the Autism Spectrum. He thinks she is moderate-severe. Moderate-severe. I stopped listening when he said moderate-severe. I am not a doctor but I would consider her to be mild-moderate, at least from the research and testing with her other therapists we had done. He was with her two hours during nap time and to say she was very uncooperative would be an understatement. She was in no mood! He was not my favorite doctor because he defiantly had no compassion and said worst case she will never talk. I know that it is a possibility and I have thought about her never speaking but I will not dwell on the worst case, I will hope and pray for the best case. We left there and I felt so defeated and we haven't even started yet. My husband gave me a hug and said we caught it early babe, we know what we need to do. Lets do it. It could be worse, it always could be worse. He knows just what to say and can make me laugh when I need it the most. We hit the phones after that!

We went to a center for ABA on Friday for a tour and we go to a school and another center today. Insurance went through and we got that taken care of and luckily where we live there really is no waiting lists for this type of therapy like there is in other parts of America. We are hoping and praying that with intensive early intervention that we will make Payton's future as bright as possible. Her brothers are so helpful and anytime she babbles and it sounds like a word they come running. It is so adorable and they are so hopeful for their sister. She has a lot of cheerleaders and we are hoping to find the best therapy and routine that will help her become the best she can be.

With prayer anything is possible. Payton may be different but she is not less. Like Devin said to me when I was having a sad moment, "Our daughter is everything I ever hoped for and more. I wouldn't have her any other way then the way she is." Neither would I....

So it begins!

Therapy for Payton today was difficult to watch and broke my heart. Thankfully the specialist reminded me that it is normal to feel that way. I was beginning to think I was loosing it.  She basically forced Payton to do what she wanted her to do. Lots of crying happened and sadness but I know it is for her benefit and she will grow because of it. She said, "Between you and me, I know your daughter is on the spectrum." She is not an actual doctor so she can't really give the diagnosis but she was nice and trying to prepare me for Mondays appointment. She did say as of now, she is on the mild side so that is hopeful and we want to keep it this way and in order for her to progress she needs 5-6 hours of intensive ABA therapy a day. 5-6 hours a day. It is still sinking in. That is one persons opinion and we will get another opinion on Monday. But my attitude is the more the better especially if we can see a difference. As we all know it comes with a cost! :)  Tricare only covers $36,000 a year which is about 9 hours a week. She needs 5-6 hours a day... That is 1,100 dollars a week over what is alotted which is coming from our pocket. I am preparing myself for a battle with them. I have read some success stories so I am hopeful on at least getting additional coverage so it isn't such a huge difference.

 Right now, she is doing Early Steps with the State of Florida and they can do up to 4 hours a week so that swallows some up. We will do whatever we have to do for her and if she needs 5-6 hours a day we will make it happen! She is such a sweet girl and it will be tough to make her work harder for things but it is for her benefit. The whole family must be on board including Daddy who literally treats her like a real live Princess on a daily basis. We have an appointment to look at a school for her called Brilliant Minds which is about 20 miles away. They were highly recommended and will do their own evaluation next Friday and we can move on from there. Thank you again for all of your words and stories! I hope this helps others to understand and spread awareness!

The start of it all

Family and Friends,

So many of you have expressed concern about Payton and at times it has gotten overwhelming. I had a great friend tell me that she finds relief by writing down her thoughts, feelings, and updates for all to see who wants to know what is going on. Essentially it will be like free therapy for me!  We haven't had answers until recently. BUT I want to give a little bit of background for others who might come across this to relate or compare our stories.

Payton was born July 16,2011 in the most loving anxiously awaiting delivery room the hospital had ever seen. Payton was a special child for her Dad and I because she is our rainbow baby, our first girl and came at a time of turmoil for my family. That same year my little sister went to be an angel, my husband was in Afghanistan and had suffered the lost of three friends. We needed her light. The whole family was in the delivery room waiting for her to make her big debut! I was scared to death. It wasn't my first time delivering a baby without my husband, but I had two boys and I knew nothing about raising a little girl. As it was time to push my Dad, my Mother in Law and my Sister were all by my side. One was holding a leg, another was holding my other leg and the most important job, my phone because we were skyping with Devin thousands of miles away. Two easy pushes and the room was quiet. She was there, I was holding this little girl who was just with my baby sister. That was the most powerful moment for me and for my siblings and parents. All I could hear in my head was my little sisters voice saying, Ashley are you pregnant? Are you and Devin getting married? LOL She asked me that on a daily basis. She knew I was pregnant with Payton before I did. I wish deeply that she could of held my sweet baby girl but I knew she just left her presence. She prepared her for earth, for her brothers and for the trials she would face.

Fast forward to Christmas 2012. Payton was hitting all of her milestones except talking. She was running, laughing, blowing kisses, giving hugs, waving bye-bye.... Then in January 2013, she just stopped. It was like a switch went off in her head and stopped looking when I was talking to her, stopped blowing kisses and the hardest for me was when she stopped waving bye-bye. That was our thing. Everywhere we would go she would wave bye-bye to anything that moved. I knew at that moment that our daughter has A.S.D.(Autism Spectrum Disorder)  I didn't need a doctor to tell me. I knew. I took her to the pediatrician and she brushed me off and said oh she is stubborn, she will be talking soon, give it time. Time is not something that I have on my side. I pushed for a speech referral and after giving my own speech of this is not my first rodeo lady, she finally caved and said, "Fine just in case." It took about two weeks to get her in and during  that evaluation, at the end, Ms. Kari said to me that Payton had the communication skills of a 9 month old baby on paper. Those words were so painful. Of course things could be so much worse and I am grateful that she is essentially "healthy" but those are no words a parent ever wants to hear.  Fast forward to today and after 7 months of speech we have seen 0 improvement.

Today is a big day because she starts her A.B.A therapy (applied behavior analysis)which is supposed to be the best therapy for ASD. Maria is a nice lady, but stern. She straight up said that our daughter needs a lot of work and we need to be ready for her to cry and be upset because essentially they are going to be working her to do simple things that she should already be doing, such as responding to her name, following any sort of directions and helping her to communicate her wants and needs and focus on certain tasks. Maria knows she had ASD, but we have not received the specific diagnosis but will on Monday when we see the Pediatric Developmental Doctor.

I love my daughter more than any words could express, she is our light and looking in her eyes I know she is in there, Devin and I will dedicate our life to get that light switch back on. We will do  whatever it takes to help her develop and essentially, hoping, that one day she will show no signs of ASD. This is a blog for updates, vents, and of course questions. I am learning new things everyday. It is so new to me and I am trying to research all the methods of therapy because not all children with ASD are the same. Thanks for reading and helping me along with this journey! I will update after therapy this afternoon!