Today was a heck of a day. It seemed that most of the day was going from one thing to the next that Jacey was climbing on. I would walk over to her climbing my kitchen drawers where I would tell her that was a no and set her down. Then she would be off to the entertainment center in hopes of climbing on that. I would have to hurry over to tell her no again and set her down. Usually at this point she screams and pitches a fit. Then she attempts to turn the TV on and off...on and off...over and over and over again. I stand there and remove her hand from the buttons on the TV only to have her attempt again and again and again. Imagine this all day long! It got really tiring, especially when I didn't sleep well last night.
I wasn't able to fold laundry, I couldn't wash dishes, I couldn't leave the room to use the bathroom, and so on. By the end of the day with Jacey, I was emotionally spent. Thankfully Judd arrived home before I lost my sanity completely.
As I type this I am trying to get Jacey to go to sleep. She is climbing on her dresser, playing with her curtains, climbing on the dresser again, playing with the CD Player that is on top of the dresser, opening and closing the door repeatedly, and again climbing on the dresser. Thankfully I'm taking something good from this and videotaping it for our video for 4 Paws. Hopefully they get the idea that she is a CLIMBER!!!
Anyways, after Judd had gotten home and I had been able to relax for a little bit (Thank you Judd!!!), he decided to take the kids for a walk. I thought it would be good to get out and enjoy a nice walk with the family and be able to enjoy the nice weather with them. The two older kids road their bikes while the two little girls hung out with dad...granted Jacey was running ahead a little bit. I held the leash to Sasha as we walked. On our way back down a little hill on our road, Jacey wanted to grab the leash from me. I let her have it and it brought a huge smile to my face. Jacey was ecstatic! Oh, if you could have heard her giggle with delight!!! She would look back now and then with a smile for us as she trotted down the road with Sasha.
Seeing Jacey hold the leash and walk with Sasha, and hearing her giggle with pure enjoyment made me want to cry as it does now. It allowed me a glimpse into the future when we have a Service Dog for Jacey. It allowed me to see and hear the delight within Jacey that will come with the independence she will gain with a Service Dog. Walking today did much good for my soul. After the day I had, I think Heavenly Father knew exactly how to buoy me up for another day with Jacey. I am so grateful for the glimpse into what it will be like with a trained dog next to Jacey. All by choosing to take a walk with my family and our dog Sasha.
....Now I just need a glimpse of what it will look like to have Jacey go to bed without climbing on everything!
Wednesday, May 19, 2010
Sunday, May 16, 2010
Reflections
It seemed that as she got older she got a little happier. She got a little happier when she was able to sit up, then a little happier when she could crawl, and a little happier when she was able to walk. We both recall really beginning to like her when she was about eighteen months old.
It was always funny going to the grocery store. I'm sure you all know what it is like to go up to a cute baby and talk to them in hopes of getting a smile from them. On many occasions, I would be out grocery shopping with her and my other children. People would come up and try to get her to smile. I felt so bad for them because I knew that the chances of them getting a smile in return was extremely slim!!! I always told the people that if they did get a smile, they would know that they had earned it. It was hard for even Judd or I to get her to smile. I'm not saying that she never smiled, but you definitely had to work for it. Grocery shopping was a different experience having a baby that would just stare at strangers smiling at them.
The spring before she turned two, the local school had a Preschool Screening. We went and had all of my children evaluated. They also include hearing, and vision for the older children. It is fun to watch your child interact with the therapists and see what skills they would display for them. Everything from stacking blocks, feeding a baby doll, hopping on one foot, identifying pictures, and many other things. When I took Jacey to it just before she turned two, they found delays. They were interested in contacting me later to talk more about what we might want to do. At that time, I just figured that Jacey had been "blessed" with the stubborn jean (and I'm not telling from which side!). She never would perform for anyone, not even Judd or I. So, I just figured that the reason they showed delays was because she was so stubborn.
By the time summer came around, things were beginning to decline. Jacey started loosing the few words she did say. Everything was a fight - from brushing her teeth, getting dressed, to changing her dirty diapers. We finally went to our Pediatrician in hopes of learning what to do. I love our Pediatrician, but that day was overwhelming. He thought that she might have ODD - Oppositional Defiant Disorder. He told us that we had to throw all of our parenting out the window and start from scratch with her. He also said that we had to create an environment where she couldn't get in trouble. I wanted to go home and cry! How could I change EVERYTHING about how I parented my children? How could I create a safe and discipline free environment without removing most every piece of furniture.
He also had us set up an appointment with the behaviorist to see what she thought. Our appointment was at the end of summer. We saw her, but were extremely disappointed with the "bed side" manner. We had to fill out a gazillion questionnaires before our visit. Her nurse came for us and did most of the hands on testing with Jacey. When the actual Behaviorist walked in, she sat down and talked with us about the questionnaires we had filled out. The only interaction she had with Jacey was checking for reflexes and muscle tone. Woo Wee (insert sarcasm)!!! I was not impressed! Needless to say, the questionnaires we had filled out leaned towards some behaviors in the Autism Spectrum. She never told us that Jacey had Autism but that she wanted to re-evaluate her in six months. In the meantime, she had us start Speech and Physical Therapy.
When almost six months had passed and Jacey was not progressing, we finally looked at the option of having her evaluated by the North Central Evaluation and Consultation Team. It is a group of specialists that come together and play with Jacey. They used the DSM-IV which is considered the "gold standard" for diagnosing Autism. After evaluating, observing, interacting, and playing with Jacey for about two hours we left for lunch. They would go over what they had collected and come up with a report for us regarding their findings.
We came back and sat down with the team while Jacey went to play in a different room with a Family Support Specialist. All I can think of was the moment that they told us they felt that it was Autism and that she was right in the middle of the spectrum. My mind was in and out from that point forward. How could they decide that after such a short amount of time with her? What did we do now? Where could we go for help? How was I to raise a child with Autism? My mind and body started to shut down. It was a horrible feeling. I was so devastated, I was crushed. I had gone to the evaluation and consultation thinking that they would tell me that she had something else, something that she would outgrow, that it wasn't Autism.
That day, Judd and I drove down to Billings for some meetings he had to attend to. My mother-in-law, Karen, stayed home with our older three children and we took the baby. It was a good time for me down there. I had some quiet time where I could think and reflect on the things that I was told. They had given me a kit for the "First Hundred Days After Diagnosis" for Autism. It was on that trip that I decided that they were the experts and that I needed to accept Jacey's diagnosis. I had to be her advocate because no one else would be. I started researching like crazy and talking to people that had more experience than I did. That is when I learned about Autism Service Dogs.
I hope that if someone is reading this that has a child that is "stubborn" and has delays, don't procrastinate having them evaluated. Don't just assume that they are stubborn. Learn for sure if there is anything causing the delays. I can't change how we did things, but the one thing I wish we had done differently was to have her evaluated sooner. Early intervention is critical!
I'm still working on so many things to try and get Jacey the help that she needs. I am learning and growing in all of my research, but I definitely feel it is beneficial to have Jacey get help from people that have more experience with Autism. If I don't advocate and fight for her, no one else will! I feel that I have dealt with the grief process by fighting for her. I don't have time to cry and wallow away in self pity when there is a beautiful little girl needing my help. Writing these feelings have brought tears to my eyes thinking of how my baby will always have hard times. I just pray that I might do everything in my power to make life a little easier for her.
Amy
Thursday, May 13, 2010
In Complete Awe
Where do I begin?
When I first started researching Autism Service Dogs, it was as if a huge load had been lifted from my shoulders. There was something out there to help Jacey. The path was clear - fund raise $13,000 for 4 Paws for Ability. Insurance has not been so clear. We sent in a predetermination letter that was denied for coverage of ABA (Applied Behavior Analysis), saying that it was unproven and experimental. I now have to send an appeal to insurance to fight against their decision, since ABA is one of the best and well known therapies to help children with Autism. Who knows how long that will take to get things cleared up and hopefully have services in place.
I was so giddy with excitement when I learned that Jacey had been approved through 4 Paws that I thought the skies were the limits. Once reality set in that we had to come up with THIRTEEN THOUSAND DOLLARS, my dream of having a service dog for Jacey began to collapse. The amount that we had to fund raise was SO MUCH! I held true to my determination of getting things started. I sent letters, emails, and called the media. I thought that maybe over the next year we might make a dent in the amount needed. I had no idea that I would be here today to tell you all that we are there! Between the auctions at Trapperman.com, family, friends, Judd's co-workers, and other donors, they've made the goal happen. It makes my eyes well up with tears just thinking about the intense amount of love and support that we have received in less than two weeks.
Trying to wrap my head around the idea that the service dog isn't a dream anymore is so difficult. I was not prepared to be done with fundraising SOOOO quickly. I joined the 4 Paws Yahoo Group in hopes to get ideas for fundraising and wanted lots of ideas so that I could plan out different events to help make the $13,000 goal. Yet here I am telling you all that we're done.
I guess what I'm trying to say is that I am simply amazed. There are no words to express my true feelings at this moment. However, if you saw me...I'm sure you would see it! :o) I don't think I have ever cleaned out my tear ducts like this before!!! I told Judd not to worry about crying because I'm doing enough for the both of us! Thank you so much for supporting us through all of this. People have come forward that not only wanted to donate their money but also their thoughts, prayers, and ideas. Thank you!
I'm sure everyone still wants to be kept up-to-date on where we are with getting ready for the dog and actually bringing the dog home. Don't worry - I will DEFINITELY keep everyone up to speed on what's happening.
So I thought that the support would probably taper off now that we have reached our goal. But it hasn't.... Judd called a gentleman that he had been in contact with that had wanted to donate the last thousand dollars towards our goal. Judd let him know that we were already there. But he still wants to donate his funds somewhere and we just have to let him know where it is needed.
But it doesn't stop there! Judd just called to let me know that a co-worker had informed him that there is an anonymous donor that would like to purchase our airline tickets when the time comes to go out to Ohio. What do I say to this other than thank you? I am truly speechless..... I have never in my life experienced such an outpouring of love from people, including strangers. Thank you to all of those who have made this dream a reality!!!
From the bottom of our hearts we thank each and everyone of you! I look forward to Family Home Evenings, when we can look back at this and tell our children about all the good in the world. I am constantly telling Bailey and Carsten about the wonderful people that are wanting to help us get the dog for Jacey. I hope that one day Jacey will understand the magnitude of all that has taken place so that she could receive her four-legged friend. You all have amazed us beyond our wildest dreams!
Amy
When I first started researching Autism Service Dogs, it was as if a huge load had been lifted from my shoulders. There was something out there to help Jacey. The path was clear - fund raise $13,000 for 4 Paws for Ability. Insurance has not been so clear. We sent in a predetermination letter that was denied for coverage of ABA (Applied Behavior Analysis), saying that it was unproven and experimental. I now have to send an appeal to insurance to fight against their decision, since ABA is one of the best and well known therapies to help children with Autism. Who knows how long that will take to get things cleared up and hopefully have services in place.
I was so giddy with excitement when I learned that Jacey had been approved through 4 Paws that I thought the skies were the limits. Once reality set in that we had to come up with THIRTEEN THOUSAND DOLLARS, my dream of having a service dog for Jacey began to collapse. The amount that we had to fund raise was SO MUCH! I held true to my determination of getting things started. I sent letters, emails, and called the media. I thought that maybe over the next year we might make a dent in the amount needed. I had no idea that I would be here today to tell you all that we are there! Between the auctions at Trapperman.com, family, friends, Judd's co-workers, and other donors, they've made the goal happen. It makes my eyes well up with tears just thinking about the intense amount of love and support that we have received in less than two weeks.
Trying to wrap my head around the idea that the service dog isn't a dream anymore is so difficult. I was not prepared to be done with fundraising SOOOO quickly. I joined the 4 Paws Yahoo Group in hopes to get ideas for fundraising and wanted lots of ideas so that I could plan out different events to help make the $13,000 goal. Yet here I am telling you all that we're done.
I guess what I'm trying to say is that I am simply amazed. There are no words to express my true feelings at this moment. However, if you saw me...I'm sure you would see it! :o) I don't think I have ever cleaned out my tear ducts like this before!!! I told Judd not to worry about crying because I'm doing enough for the both of us! Thank you so much for supporting us through all of this. People have come forward that not only wanted to donate their money but also their thoughts, prayers, and ideas. Thank you!
I'm sure everyone still wants to be kept up-to-date on where we are with getting ready for the dog and actually bringing the dog home. Don't worry - I will DEFINITELY keep everyone up to speed on what's happening.
So I thought that the support would probably taper off now that we have reached our goal. But it hasn't.... Judd called a gentleman that he had been in contact with that had wanted to donate the last thousand dollars towards our goal. Judd let him know that we were already there. But he still wants to donate his funds somewhere and we just have to let him know where it is needed.
But it doesn't stop there! Judd just called to let me know that a co-worker had informed him that there is an anonymous donor that would like to purchase our airline tickets when the time comes to go out to Ohio. What do I say to this other than thank you? I am truly speechless..... I have never in my life experienced such an outpouring of love from people, including strangers. Thank you to all of those who have made this dream a reality!!!
From the bottom of our hearts we thank each and everyone of you! I look forward to Family Home Evenings, when we can look back at this and tell our children about all the good in the world. I am constantly telling Bailey and Carsten about the wonderful people that are wanting to help us get the dog for Jacey. I hope that one day Jacey will understand the magnitude of all that has taken place so that she could receive her four-legged friend. You all have amazed us beyond our wildest dreams!
Amy
Subscribe to:
Posts (Atom)
