OK, OK, OK. . . I am officially the worst blogger in history. I know it has been literally forever since I last updated. But, not for lack of anything going on in our lives. In fact, we've had some MAJOR life changes. . . which is the main reason I have neglected this blog for so long. Plus, I must admit. . . I am just tired these days and frankly, haven't felt much like blogging. But, I am getting back in the swing of things and feeling more energized.
So. . . where to begin?? For starters, we have moved to Charlotte, NC. Yep. In the space of about 6 weeks, we put our house in Tampa up for rent on Craig's list, rented it out to a great family, made a trip to Charlotte to sign Charlie up for school and find our own home to rent, packed and made the big move back to North Carolina. Did I mention we packed and moved ourselves entirely?? (With some help from family and friends packing.) No small task considering the unbelievable amount of CRAP we have. I have no idea how a family of 4 can have so much stuff! And how we fit it in our Tampa home is mind boggling. Our new home is almost twice the size and we filled it up with our stuff.
So, why the big move?? We did a lot of soul searching and research since Charlie was diagnosed with autism. It's not that we were unhappy with his therapies and therapists in Tampa, I just felt like we could do MORE. I wanted him in a school environment where he could be around other kids. I know he doesn't exactly "play" with the other children, but I also know he is aware of their existence and does observe what they do. I think the best way for him to learn socialization skills is to be around other children. I also wanted to keep him in ABA. I just did not like the idea of sending him to the public school program and then doing ABA on top of that. It just seemed like too much, and just never FELT right to me. While I did like Sydney's School in Tampa, it really was only a preschool which left us with no real options for post-kindergarten.
So, while researching I came across Garr Christian Academy in Charlotte. Just this year, Garr merged with another Christian school in the area and is now called Charlotte United Christian Academy (CUCA). CUCA is a general education school, ages pre-school through 12th grade. It's a very small, very tight knit Christian school. I think total population, not including pre-school, runs about 150 students. Of that 150, approximately 30 of the children are on the autism spectrum somewhere. CUCA implemented an ABA program approximately 6 years ago. Charlie is now the youngest ABA student there (although many of the current ABA students started at about the same age as Charlie). Charlie's class has 5 students and 4 teachers and is headed by a BCaBA. Everyone there seems very dedicated and professional. They adhere to the Verbal Behavior approach of ABA and do lots of natural environment training, teaching the kids to play and work on language and social skills. They have different levels there with kids across the entire spectrum. The early learners are usually in an ABA classroom all or most of the day. Gradually, they work on inclusion and introducing the student into the general ed classroom. So, eventually, Charlie will spend some time in the pre-school classroom with an inclusion specialist (or "shadow") to help him as much as necesssary and to teach him the rules of the classroom. The ultimate goal is to have the child included as much as possible. Some of the older ABA kids are in the general ed class all day, with no special supports, others are in the general ed classroom for most of the day and are pulled for special services, still others spend more time in an ABA classroom. It is all based on the needs and skills of the student.
Charlie seems to really love it there. From day #1, he has had a big smile when we drop him off and pick him up. (Not like his previous pre-school experience where he cried almost every day we dropped him off.) Admittedly, he is a little exhausted by the end of the day since it's a longer day than he is used to, and Adam and I miss him terribly since we are not used to being away from him for the better part of the day. (He goes M-F from 8:30-3:00.) But, I feel that this is the right place for him now, and I think we made the right choice. Who knows where Charlie will be in a year or two, but CUCA has the potential to be a long term placement if we choose to keep him there. The most important thing is to have him in an environment where he is happy and can thrive. I could go on and on about the adorable kids in his class, but I'll save that for another time.
Addison and I had the privilege of attending Charlie's first ever field trip to Hunter Farm for pumpkin picking and a picnic. What a fabulous day to spend time with my children, Charlie's teachers, and his wonderful and sweet classmates. It was a great day! On another note entirely -- the pumpkin patches here put the ones in Florida to shame. I have been in heaven with all of these wonderful Fall festivals, pumpkin patches, hay mazes, etc.
Addison has adjusted beautifully to the move. I was worried that she would miss our neighborhood terribly. While I am sure we could go back tomorrow and she and Charlie would carry on as if nothing changed, she has really treated this like a new adventure. I have really enjoyed having a little more one on one time with her now that Charlie is in school all day. I get to do the things with her that I did with Charlie before she was born -- toddler time at the library, playground, long walks in the park, lunch at the mall. . . and even a random Starbucks visit here and there. We love our girl time.
Adam and I are also very happy to be back in North Carolina and be closer to our families. I just love that we get to have a real Fall this year since there is no such season in Tampa. I just love that crisp feeling in the air and the beautiful leaves. But, I will readily admit. . . I miss Tampa more than I thought I would. Really, I miss our neighborhood and Westchase the most. This is a great house, but it doesn't have that "home" feel like our house in Westchase did. I miss our wonderful neighbors and being able to walk everywhere like I did in Westchase. We also miss our pool terribly. This is what I miss the most for Charlie. He had turned in to quite a little fish and could swim the length of the pool. I hate that we don't have a pool in our backyard anymore. There is a community pool, but it is only open during th summer. I hope to join the Y so we can get an indoor pool for Charlie to swim in this Winter.
Since I am with Charlie every day, it is really hard for me to assess his progress at times. As usual, it seems like we take two steps forward, then one step back. I know the adjustment to a new home and a new school may have delayed things, although, I am so impressed how well Charlie did with it. He is very go with the flow. We are lucky not to have an ASD child who is stuck on routine, or we would have been in a world of hurt. My mom was in town last week and thinks she sees improvement in Charlie. She thinks he is more "aware" of what is going on and not as "spacey." I would agree with that over all. Don't get me wrong, he is happy to go off in another room and stim to his little heart's content, or run up and down the hall all day, but the second you tell him to stop or come, he's there. I think his verbalizations have increased, although not significantly. He continues to have days where he says words spontaneously, and other days where almost everything is gibberish. I have noticed, however, that the gibberish is taking on more of a decipherable (is that even a word?) nature. If you listen close, many times you can tell that he is trying to say the beginning of certain words or is repeating what you just said. You also have to listen close as he likes to whisper words at times. This is not uncommon with autistic children. It is easy to miss though so you have to always pay attention. I've noticed on numerous occasions that I will be standing in the kitchen preparing a snack, and Charlie will walk up and see what I'm doing, then very lightly say "carrot" or "raisin" when he sees what is on the counter. I also think he has made some efforts to tell us he has to go "poop," but again, this is hard to tell because you can't always tell what he is saying and sometimes he says it so softly you can't be sure you even heard it (especially with a loud 2 year old talking in your other ear).
One thing I have noticed is that Charlie seems to enjoy interacting more than he did before. He seeks it out more, coming up to you and hugging you or putting his arms around you and looking at you and smiling. I know his gibberish is not gibberish to him -- he is really having a conversation with you and knows exactly what he is saying. He'll look right at you and speak some gibberish and then give you a big smile. Man, that smile is the most beautiful smile on the planet and just melts my heart every time I see it. The teachers and therapists at Charlie's school believe it is a motor problem. I tend to agree as I have been saying that Charlie actually reminds me of my dad in a lot of ways. My dad has now had 2 strokes and, unfortunately, his speech has declined significantly as a result. He still talks, but his words are very slurry and he is hard to understand. He knows exactly what he is saying, but it often comes out as gobbeldy-gook (or gibberish) and you have to ask him to repeat himself and really strain yourself to understand at times. My dad says he knows what he is saying and can see the words in his head, but has a hard time getting them out. I know it frustrates my dad when we don't understand him -- imagine how it feels for Charlie when he wants something to eat or drink and can't get the words out. I do think, his little brain knows what it wants to say, there is just a problem getting it out sometimes. What is super frustrating, though, is that the next day he'll turn around and say the word crystal clear. Ugh. . . Oh well, no one said this autism thing was easy.
On a biomedical note, Charlie continues on a whole slew of supplements. His last appointment with the DAN doctor was in early September. We ran another OAT test. Charlie's yeast levels came way down, but his clositridia markers almost doubled. Yikes. So, we changed his probiotic to a strain that includes lactobacillus acidopholus and Sacc B. He also takes an herbal blend of oregano, turmeric, cumin and thyme. It stinks to me, but he drinks it down bless his heart. We also doubled his Co-Q-10 and Riboflavin. We just did another OAT test last week to see how the clostridia levels are and should have the results in a couple of weeks.
We decided to challenge the GFCF diet since Adam was never convinced of any change as a result of the diet. I was starting to wonder about it too after Charlie had a couple of infractions that seemed to have no effect on him. So, after consulting with our DAN, we decided to challenge each food group, one at a time. First, we reintroduced dairy. Hallelujah! No issues with that. Charlie ate his first piece of cheese in 6 months and absolutely loved it. The school did not notice any behavioral issues either. So, we decided to reintroduce gluten. We didn't have the success we did with dairy. Charlie got very agitated, became almost rough in his sensory seeking behaviors (head butting Adam, smushing you until it was almost painful), pinched, was removed from circle time at school for pushing and pinching, and bit someone at school. And that does not even touch the funk that the poor child left behind in his diaper after eating the gluten. That, and that alone, is reason enough for me to keep the kid off gluten, at least as long as he's in pull-ups. I'll spare you the gory details, but suffice it to say, the military could use this stuff to force Bin Laden out of his hiding place in Afghanistan it smelled so atrocious. I also suspect that the DAN will recommend the Low Oxalate diet for Charlie based on his prevous OAT tests. I just hope to get the little guy's tummy straight so he can have regular, solid BMs.
A few weeks after moving up to Carolina, we participated in Autism Speaks' Walk Now for Autism. Shortly upon making the decision to move we signed up to partipate in the walk, which was held at Lowe's Motor Speedway in Concord, NC. It was quite an experience seeing so many people there on walk day. It really hits home how many families are struggling with autism every day and just how widespread it is. New research numbers from the American Academy of Pediatrics show that 1 in 91 children are diagnosed with an ASD, 1 in 58 boys are diagnosed. That, simply, is unbelievable. This number is way too high, and we just can't sit around and hope something will change. We decided to be proactive and help raise money to find a cause, a cure and to support families that live with autism every day. We are so grateful to have such generous family and friends. Their support in our journey and our efforts to raise money for this cause mean more to us than words can ever express. We are still collecting donations, but as of the current date, our team has raised over $6,500 for autism research and advocacy. We are so very blessed to have such wonderful people in our lives.
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