Well, well, well. Where do we start on explaining our journey? If you know anything about our family, you know that our oldest daughter, Paisley, has autism. Many of you have walked through this long, challenging, and tiring journey with us, and for that....words cannot express our heartfelt gratitude toward you. We are truly blessed by your support. However, for those of you just getting acquainted with our family, I'll try to share our story without being too verbose or completely boring you to death. So, here it is:
On March 19, 2007, Paisley Rene' Hart was born. She entered the world and we were all amazed. She was absolutely beautiful!! The first few days out of the hospital were a little crazy, as we were first time parents and didn't have a clue what we were doing. We brought Paisley home and didn't sleep for the next 3 nights terrified that something would happen and she'd quit breathing. Most parents probably feel this way. We had lost twin boys due to pre-term labor the year before, so we were especially sensitive to every little sound and movement Pais made.
As time went on, Paisley proved to be a very laid back baby. She was always very sweet and ready to eat! The first odd thing I noticed about her was that she didn't really smile or coo all that much. She also never wanted to be put down or sleep by herself. People would say she was spoiled and to "just let her cry it out", but thank GOD I didn't listen to that in hindsight. As time went on, little things that Paisley was developmentally behind in (like not holding her bottle herself, not tracking movement, etc), began to bother me more and more, and I felt like I could no longer ignore it, or rationalize it away (like saying "oh, she's just a born 'diva', or she's gonna be a leader and not a follower!"). However, up to this point, I really didn't want to admit anything was wrong with MY child. Afterall, I knew she was brilliant, so who cares if she was a little different?
When Paisley was about 18 months old, we decided to take a trip to visit my good friend and her kiddos. One was about 4 or so, and the other just a few months younger than Pais. While there, Sarah and I chatted on and on. I shared my concerns that Pais was a little behind, but she tried to reassure me that Paisley was fine, and that John was probably doing more because of his sibling (even though I also sensed a hint of concern in her voice). However, on that same trip, I watched the kids play, and I started getting a very weird feeling, because not only was Paisley not making any attempt to communicate, but she also did not imitate anything the boys did. I remember thinking to myself, "no, she can't be autistic....she just can't....she's WAY too loving and affectionate!" A few months after that, we went to church, and were called out AGAIN because Paisley would not calm down after being left (to the point she'd get sick about it), and we came home feeling upset and defeated...AGAIN (which had become a fairly normal result of going to church for us). This was the major turning point about putting our foot down and getting some real help. We'd gotten some intervention by now with ECI and speech therapy, but we needed more as we were seeing no results.
Fast-forward through lots of tears shed, lots of cruel, harsh comments about our parenting skills, lots of different doctors with lots of different opinions, a confirmed diagnosis of autism via genetic, neurological, and neuropsychological testing, and a PET scan we traveled all the way to Detroit, MI for, and here we are today! It has been a ROUGH few years. We have gone upside down and back to figure out how to help Paisley, and we've pretty much had to do it on our own because we live in a rural area where health professionals are severely lacking in this area of expertise.
Currently, each week Paisley goes to Dallas Mon-Wed for ABA therapy. Michael and I take turns going with her, and whoever's week it is to go, we stay in an apartment close to the school. You can imagine all the strains (financially, emotionally, socially, etc) it puts on our family, but it is SO worth it since we're seeing such great results. Thur and Fri she goes to PPCD half a day and Pre-K half a day in Mt.Vernon schools where she receives speech and OT services during the school hours. To date, Paisley has made huge strides in her social skills and interaction, has learned how to request for some things that she needs, and is a genius on the iPad. :) She is still very limited in her language and communication, but is making slow progress. She is a loving and affectionate little girl, loves to play with her sister, likes anything that comes in sets of 5, and enjoys working with anything that is technical or computerized. She still has major sensory issues and transitional issues that we are trying to deal with daily, but we're down to very few meltdowns. We keep a very structured routine, because Paisley does best (and Claire, too), when she knows exactly what to expect.
Although we are seeing promising results, no one case of autism is the same. We have seen children that are faring tremendously better than Pais with fewer interventions, and we see children that are in 40+ hrs a week of therapy and see fewer results than we are experiencing. However, all of us that are affected by the spectrum have an unspoken bond. We all know that we're not alone. Each of us feel each other's pain, we all know the emotional struggles, the days we want to stay in denial, the days that we don't want to get out of bed and face the autism again, the financial pressures, the guilt of feeling as if we're not doing enough, the truth of knowing we have an amazing kid that needs to be "unlocked" but few others see that potential, and the judgmental and harsh stares and comments that outsiders make at grocery stores, etc, because they don't know the situation. So, this is why we are walking this year for Autism Speaks. Not just for Paisley, but for all the families we know that struggle on a daily basis. Some have it better, some have it worse, but it's all the same....the battle of autism. I also want to walk for the future. I want answers....for us, and for those to come. I am normally a private person, but wanted to share our story in the hope that it, too, can help make a difference. Thank you for reading!! :)
If you'd like to know more about Autism Speaks, you can click on the link below! If you'd like to join our walking team or donate, just type my name in the walker box, or type the name "Peeps for Pais" in the team box!!
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