Tuesday, July 30, 2013

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? 

Monday, July 8, 2013

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....