This fall Ainsley started Kindergarten and Baylor switched pre-schools. Baylor has been on a 3 day half day school schedule with speech and occupational therapy 2 times a week for each, and added ABA therapy 3 days a week for two hours each day. Needless to say I do not have much going on outside of my children! Baylor has definitely made progress because of all her early intervention.One thing I do not mention much is your instinct. If you think something is wrong, get it checked. Everything caught early has a greater chance of healing.
New progress in her speech and social skills! I am happy to report that Baylor is trying harder to talk with us and today alone she had spontaneously spoken 5 times in 5 different circumstances. Poor thing, words have just been very hard for her to get out. Her ABA therapist tells us that she is cognitively over 3 she just shows more immaturity because of her lack of language. I was so excited to hear that! I know she is almost 3 but she seems 2 a good portion of the time because of her lack of communication. She brought me her snack and said, "I need help." She asked me in the car on the way to school, "What do you want to do?" when she normally asks that when she wants to watch a movie. She asked for "Help" when climbing out of the trampoline. Bay brought me her drink and said "Drink. More." When Stephen went to grill she said, "I want to go outside." She has been improving dealing with the rest of us people, too.
Baylor talked back with a friend of mine's son in their own language, she saw the chaos in the trampoline with mine and my neighbor's kids and joined in. She asked a little boy today "More" to blow bubbles for her and then she told him "Bye bye." She seeks Ainsley out by taking her things to get her to chase her. I just love watching her interact with the world! A year ago she had lost all her language, would not look at us when we called her name much less acknowledge anything going on around her.
Some people say, "So do you think it's really autism? She seems fine to me. Do you think she grew out of it?" I really do not believe you can just grow out of autism. You can heal out of it, but not grow out of it. If there was a child diagnosed on the ASD spectrum and was given no interventions but grew out of it, then they probably were never on the spectrum to begin with. I truly believe that the biomedical interventions that were brought before us have been healing our daughter. None of which could have been made possible without our Healer. He ultimately could have been touching her at the same time as what we were doing or just blessed our efforts. He gets all our glory, forever.
What we are doing right now. Well, we just finished Round 1 of chelating this past weekend. It is the process of mixing lemonade and DMSA every 3 hours round the clock starting Friday at 8:30 a.m. until 11:30 p.m. Sunday. You cannot miss a dose by more than a few minutes or you have to end your round. No pressure. Especially at 3:15 a.m.! This weekend looks the same and then the following weekend gets the chelator ALA. She needs a minimum of 100 rounds and could go up to 300. This will happen for at least 2 years. We are happy she takes her supplements well! This is hotly debated therapy that has tremendously helped kids on the spectrum. We are crazy excited about it. We totally expect to hit some bumps, but once we have it smoothed out it should be really good for her. God's peace has been on us for this therapy in particular. Please continue to pray for her in this area specifically. We need more prayer, too for ways to take care of her other therapies.
When Baylor turns 3 she ages out of Early Intervention. She then goes to the school that Ainsley goes to in their Early Childhood program. Where we are is the best in Middle Tennessee. We are zoned perfectly for the best equipped school for Baylor. It absolutely brings me to tears to think on how God has magnificently guided our home buying before we had kids to put us in our school zone, our specialty doctor before we realized Baylor was sick (he quit accepting new patients a few months after we started with him), and the time of life that makes gluten-free, dairy-free living so much easier, and the list goes on. The downside of turning 3.
In 32 states there is autism coverage. Our state is not one of them. Stephen's employer does not selectively cover autism because they do not have to by law. Most here do not because it is not required. This means no speech, no occupational, and no ABA therapy. No coverage. Seriously. As if the supplements that are hundreds of dollars every month and the diet not 4 times that of the typical household were not enough extra. ABA alone is over $1, 100.00 a month. Speech and OT would be $1,600.00 a month. Do any of you have a spare $2, 700.00 a month? No? Us either. We were beautifully blessed with a grant for ABA only that will cover a little of the next year but not as much as she needs. We are unbelievably grateful for the grant but need your prayer for coverage for Baylor. God will provide and we do believe she is and will be a living miracle and example of God's grace and power.
I suppose if I blogged more this would not be so long. We appreciate all of your support, your prayers, keeping in touch to check on us, your financial support and all your love for our family. We love you all and appreciate everything.
And of course, a special shout of thanks to all our friends and family who came to support or donated to Autism Speaks in honor of Baylor in the Walk Now for Autism Speaks 2012! Your show of support meant more than you will ever know.
Much love and so many blessings!
Team Baylor
