It has been almost 5 months since Payton was diagnosed on the Autism Spectrum. A spectrum I have come to study and gain a better understanding to know our daughters way of thinking. Devin and I were talking about how far she has come since July. In the beginning of therapy we didn't exist at all. It was like groundhogs day all over again everyday. She never looked at us. She never wanted us to play or even come for hugs or kisses when she fell or was sad. She didn't know she had brothers. Since July, she has grown so much. Baby steps of progress but important steps that are essential for life. She is responding to her name when she is not hyper focused. She looks at us in our eyes more often than not. She has mastered two inter verbals. She is trying to say set when we say ready set go and two when we say one, two, three. She is making more sounds than ever before.
She can wait for about 60 seconds which is HUGE.
She holds hands better when we are outside. She still doesn't have receptive language or much expressive language, but we are working hard to get her there. She has been very in tune watching our mouths move when we talk. She has started to mimic clapping and blow kiss when asked. Little things to some parents but HUGE for us. The holiday season is upon us and I always feel like it is bitter sweet. Its one month closer to the 3 year anniversary of my sisters passing, the 1 year of my uncle passing and its hard to ignore the holes in my heart that are yearning for one last hug or one last conversation. Life is so incredibly short. We are full of gratitude for Payton's progress. She has a long way to go but we have come so far already. I cannot wait to see what she can accomplish with the life she was given because the Lord knew she was strong enough to live it. We are leaving for Phoenix for Christmas in a few weeks and we are excited to be with family again because life can get quite lonely when your so far away from the ones you love especially during the months after adjusting to our new normal. What I would give to call my sister and say hey can you come watch the kids while I...... One day I will be able to!
We are so blessed beyond words. We have been given a challenge we never thought we would have to do but it has grown our family stronger. Devin and I have grown so much as parents and we both have our moments of why us, why her, why why why? We quickly think why not? We can do this. The worst part about it all is not being able to just make her better. There is no cure and there is no one reason why and there is no two kids alike on the spectrum, nothing to compare and each and every child's journey is different. The unknown is what eats me inside. When I am down and think I cannot do this anymore, Devin lifts me up. When he is upset and sad I can make him laugh and feel like everything will be OK. We don't know what the future holds for Payton, but we can wake up every morning and say that this girl will change the world and we are so lucky to be her parents.
Wednesday, November 27, 2013
Wednesday, October 9, 2013
Everything has changed
It has been awhile since I have given a detailed update on Payton and our life lately. First I want to thank everyone who donated to Devin's bike ride! He starts the 200 mile journey on Saturday morning and you all donated to such a great cause. The EOD wounded warrior foundation is amazing and your money is going to help service members who have been injured. Thank you again!
Everything in our life has changed. I used to have one child in school and two at home and now I have three gone. I was not ready for this! I get about an hour and 45 minutes alone each day and I get very lonely! My brother and sister can attest because I call and bug them! Love ya Lex and Ty! We have been laughing at how fast life changes. Our worry years ago isn't the same as our worry today. We not only have mastered military acronyms, but also Acronyms associated with Autism. ABA,BCBA,ASD,IEP,IFSP,VMAP,BMP,NV,DAN and the list goes on!!! We are getting the hang of it and sometimes we feel like we talk in code. :) Payton just started at a new center because her therapist opened her own! She is so amazing and loves our daughter like she is her own which literally is all I could ever ask for. We did get so lucky.
We have had a lot of progress this past month and a lot of new behaviors that we are working on. Payton turns to her name about 30% of the time which I will take because it was 0% a few months ago. She is using her PECS book to communicate so much more. She is a happy girl and that is all I need is a smile on her face and a belly laugh to get through the days. My heart aches for my husband who so deeply wants his daughter to know he is there. She uses me as a tool and sometimes just needs her mommy and usually only pulls me around for things she needs. He wants her so bad to want him. It breaks my heart and we are working on her noticing him and letting him touch and love her. One day it will happen and until then he enjoys her smile from a distance and occasionally tortures her with kisses.
Trenton is trying the lure her out of the corner and out of her blanket :)
Payton enjoys flipping objects over and over, lining up her mini animals, flipping through books, flipping over puzzle pieces and playing with Mr. Potato head and squishing play dough. She is slowly learning how to do functional play with toys. She is slowly making progress and we are happy about that. She really enjoys being outside and listening to the Tangled soundtrack. She is going to be Rapunzel for Halloween and the boys are a blue power ranger and a ninja! We are blessed beyond words and have such beautiful kids and are grateful for the boys and all their hard work and the love they have for their sister.
Everything in our life has changed. I used to have one child in school and two at home and now I have three gone. I was not ready for this! I get about an hour and 45 minutes alone each day and I get very lonely! My brother and sister can attest because I call and bug them! Love ya Lex and Ty! We have been laughing at how fast life changes. Our worry years ago isn't the same as our worry today. We not only have mastered military acronyms, but also Acronyms associated with Autism. ABA,BCBA,ASD,IEP,IFSP,VMAP,BMP,NV,DAN and the list goes on!!! We are getting the hang of it and sometimes we feel like we talk in code. :) Payton just started at a new center because her therapist opened her own! She is so amazing and loves our daughter like she is her own which literally is all I could ever ask for. We did get so lucky.
We have had a lot of progress this past month and a lot of new behaviors that we are working on. Payton turns to her name about 30% of the time which I will take because it was 0% a few months ago. She is using her PECS book to communicate so much more. She is a happy girl and that is all I need is a smile on her face and a belly laugh to get through the days. My heart aches for my husband who so deeply wants his daughter to know he is there. She uses me as a tool and sometimes just needs her mommy and usually only pulls me around for things she needs. He wants her so bad to want him. It breaks my heart and we are working on her noticing him and letting him touch and love her. One day it will happen and until then he enjoys her smile from a distance and occasionally tortures her with kisses.
Payton enjoys flipping objects over and over, lining up her mini animals, flipping through books, flipping over puzzle pieces and playing with Mr. Potato head and squishing play dough. She is slowly learning how to do functional play with toys. She is slowly making progress and we are happy about that. She really enjoys being outside and listening to the Tangled soundtrack. She is going to be Rapunzel for Halloween and the boys are a blue power ranger and a ninja! We are blessed beyond words and have such beautiful kids and are grateful for the boys and all their hard work and the love they have for their sister.
Monday, September 9, 2013
Just when the Caterpillar thought the world was over, it became a butterfly....
It has been an interesting month to say the least. Payton is such a sweet girl and I love all of her little quirks! She has a fascination with putting a blanket on her head and has started to cover her ears. It seems like she is becoming more sensitive to noise and her blanket is her hiding place and security to get away. I encourage her to not do it but I understand she needs an output and when you can't tell mommy what is wrong or go away, the blanket works! I have had some awful experiences recently and I wanted to share them with you all.
I had a rough day about two weeks ago on Friday and got in my first real life fight over my child. I hate confrontation and I prefer to keep to myself but when it comes to my kids, you better know I will fight to the death. Before Payton was diagnosed we were receiving therapy through the State of Florida. She had seen this particular therapist twice before we got her diagnoses and enrolled her in a wonderful place that insurance would cover. They apparently have to do home visits quarterly(the state of Florida) and I agreed that the same therapist would come and do an evaluation in my home and mark her progress for the records. She walked through my door and we sat and chatted while Payton stacked her blocks in a row. She asked where she was going and how much ABA she receives. I told her she gets 10 hours a week and that's all she can tolerate right now. She then tried to get Payton to finish a puzzle by doing hand over hand and forcing her to the point of her screaming to finish her task. I asked why she was doing that and she said,"Do you not sit in on her therapy at the center?" I said, "I have and do multiple times and it is always about what motivates Payton. Lots of floor time and using what her interests are and reinforcing that way." She then said,"Oh, well it doesn't sound like the ABA that I agree with and if you let it continue and you don't force her to finish things and sit for longer than two seconds, she will end up in a home because her behavior is going to get worse and you are not doing everything you can for her." At that minute my blood was boiling, my body was raging in anger and I did everything I could not to just karate chop her in the throat." I said, "GET OUT OF MY HOUSE." She continued on and on about how the floor time is not helping her,(we have seen so much progress already with what we are doing.) and it is my responsibility as her mother to make sure she is a "normal" functioning girl. I walked her to the door and said,"You are not welcome here and I am calling your supervisor." I slammed the door and cried and cried and cried some more. Then I got the courage to call my husband to let him know what happened and tried to call her supervisor. I got no where with it except questioning myself AGAIN on if we are doing all that we can for Payton.
She has grown just in the past month and will give us amazing eye contact and will grab others to play. I do want to preach about Autism Awareness. Today at Walmart, I was grabbing some cookies for Jackson's class and this lady approached me and she had a daughter the same age as Payton. Her daughter looked at Payton and said, Hi! What is your name? Obviously Payton didn't look or pay attention. I said to her mom that she doesn't quite talk yet and her mom looked at me and said, "Oh you better get that checked out because my daughter has been talking for almost a year. She is two right?" I wish I just had a business card that says, " My daughter has Autism." The definition is.... and hand them out whenever that happens. I then told her about Autism and she was shocked because she looks "normal". Can I say that I hate the word "NORMAL" What is normal anyways???? I educated this poor girl and in the end she did feel bad but at least HOPEFULLY she doesn't do it to someone who is not so nice about it and she caught me on a good day! In the end we helped someone who was unaware and made sure that she understood exactly what it was. Anyways that is my update! I hope everyone is doing well and we are ready for fall here in Florida! The boys are doing great and we take it one day at a time!!!!
I had a rough day about two weeks ago on Friday and got in my first real life fight over my child. I hate confrontation and I prefer to keep to myself but when it comes to my kids, you better know I will fight to the death. Before Payton was diagnosed we were receiving therapy through the State of Florida. She had seen this particular therapist twice before we got her diagnoses and enrolled her in a wonderful place that insurance would cover. They apparently have to do home visits quarterly(the state of Florida) and I agreed that the same therapist would come and do an evaluation in my home and mark her progress for the records. She walked through my door and we sat and chatted while Payton stacked her blocks in a row. She asked where she was going and how much ABA she receives. I told her she gets 10 hours a week and that's all she can tolerate right now. She then tried to get Payton to finish a puzzle by doing hand over hand and forcing her to the point of her screaming to finish her task. I asked why she was doing that and she said,"Do you not sit in on her therapy at the center?" I said, "I have and do multiple times and it is always about what motivates Payton. Lots of floor time and using what her interests are and reinforcing that way." She then said,"Oh, well it doesn't sound like the ABA that I agree with and if you let it continue and you don't force her to finish things and sit for longer than two seconds, she will end up in a home because her behavior is going to get worse and you are not doing everything you can for her." At that minute my blood was boiling, my body was raging in anger and I did everything I could not to just karate chop her in the throat." I said, "GET OUT OF MY HOUSE." She continued on and on about how the floor time is not helping her,(we have seen so much progress already with what we are doing.) and it is my responsibility as her mother to make sure she is a "normal" functioning girl. I walked her to the door and said,"You are not welcome here and I am calling your supervisor." I slammed the door and cried and cried and cried some more. Then I got the courage to call my husband to let him know what happened and tried to call her supervisor. I got no where with it except questioning myself AGAIN on if we are doing all that we can for Payton.
She has grown just in the past month and will give us amazing eye contact and will grab others to play. I do want to preach about Autism Awareness. Today at Walmart, I was grabbing some cookies for Jackson's class and this lady approached me and she had a daughter the same age as Payton. Her daughter looked at Payton and said, Hi! What is your name? Obviously Payton didn't look or pay attention. I said to her mom that she doesn't quite talk yet and her mom looked at me and said, "Oh you better get that checked out because my daughter has been talking for almost a year. She is two right?" I wish I just had a business card that says, " My daughter has Autism." The definition is.... and hand them out whenever that happens. I then told her about Autism and she was shocked because she looks "normal". Can I say that I hate the word "NORMAL" What is normal anyways???? I educated this poor girl and in the end she did feel bad but at least HOPEFULLY she doesn't do it to someone who is not so nice about it and she caught me on a good day! In the end we helped someone who was unaware and made sure that she understood exactly what it was. Anyways that is my update! I hope everyone is doing well and we are ready for fall here in Florida! The boys are doing great and we take it one day at a time!!!!
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?
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
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....
Thursday, June 27, 2013
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!
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!
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!
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