ABA

Tucker was diagnosed with autism at age 2, but at the time his medical needs were so overwhelming that the autism wasn't really our main priority. His neurologist told us to put him in 20-40 hours of ABA therapy per week (ABA being the gold standard in behavioral therapy for kids with autism). Looking back now, the idea of putting Tucker into 20-40 hours of anything is hilarious, but at the time it was very stressful. As parents we wanted to give Tucker every chance to talk and interact normally with other children, and we were terrified that without the behavioral therapy he wouldn't do that. For any other two year old, starting therapy might have made sense. Tucker was of course far from typical; he had spent the first 8 1/2 months of his life in intensive care, and had 12 hours a day of home nursing. He had OT, Speech, and PT, as well as Special Instruction at home, which was the maximum we could get because the therapists in our area had no more availability. We couldn't take Tucker to center-based therapy yet because we were scared he would get sick from being on the same equipment as all of the other kids. When I called around for ABA therapists to come to our home, I was told Tucker would be placed on a months long waiting list and we would need to put down several thousand dollars to get started. Several of Tucker's therapists convinced me that we were doing all we could for Tucker at that age, and that he was not ready for intense therapy. The poor kid tired out after 45 minutes of therapy. So we took some of the pressure off of ourselves. Our home therapists eventually agreed that Tucker's immune system was strong enough for center-based therapy, and Tucker began sensory therapy with Mrs. Terri. He loved that, and still does-the swinging, big movement, jumping, climbing...it all really helps. So that summer, when Tucker turned 3, I called the center-based ABA group in the area. After a two-hour long evaluation, they told me that Tucker was no where near ready for ABA. He still had the trach, he was unable to sign or even point at pictures to communicate his needs, and they felt it would be a lot of money and time that we'd spend before he could really benefit. So we signed Tucker up for a one-hour speech therapy group at that center, twice a week to get him ready for preschool. For the first 3 weeks (meaning the first 6 sessions) Tucker screamed the whole time! For the last 5 weeks, he was very happy to go to school, as I called it, although he didn't really participate with the kids or listen at all. For three-year-old preschool Tucker did very well with behavioral therapy. His teacher was in graduate school to get her BCBA certification (meaning her behavior certification to perform "real" ABA, as I call it, so that insurance companies will cover the services), and worked very hard with Tucker. Tucker got his trach out in November of 2009, and started talking around January of 2010. We still didn't introduce ABA at that point, mainly due to finances, but we were reassured by many that Tucker had plenty of therapies going and we weren't doing a disservice to our child. It is sometimes hard for me to see Tucker's progress from the beginning of this school year to now; I often focus on how far he has to go, not on how far he has come. I am his mom, after all, and I am always looking ahead. But he has really made some amazing progress this year, and as he gets better developmentally and cognitively, problem behaviors and quirks have come out and become more obvious....the obsessiveness, the escalators, swings, rubbing legs, rubbing people's hair, refusal or inability to use the potty, etc. The outbursts he has are actually a good sign developmentally, as he is showing us his emotions instead of holding it all in or "checking out" like he used to. But we need the tools to help Tucker with his emotions, and he needs the tools as well; it seems like the more he progresses, the more anxious and frustrated he gets. So while Tucker's health is at a good status (thank God!), we are looking into starting ABA therapy. I asked a few people that I really trust for advice on where to go. This type of therapy is a big investment of time and resources, and I'm not going with just anyone. So I got the name of a therapist from several people. I looked up the website and realized it was someone I had looked into years ago, but then we decided to wait. By some stroke of luck, she is taking clients right now. I emailed her, and we had a phone conference last Thursday night. We discussed ABA in general, her theories and practices in particular, and Tucker's history and our concerns about him. She seemed really impressed! It's not often that Tucker impresses a therapist on the first try, haha:) She was trying to gauge where he is at, her first question was "Does he request things he wants?" I started laughing, "no he doesn't request, he demands!" She asked if we removed the item from the room, would he still request it? Yes, of course! She discussed how she could help Tucker increase his verbal and social skills. So for example, now if Chris leaves, Tucker stands by the window and cries "Daddy home, Daddy home, Daddy home" until Chris comes back down the driveway. The goal would be for him to one day ask me "When is Daddy coming home?" I tell him the time, or give him an idea of when he'll be home, and Tucker would be able to handle that. Or for example, we go to a family function. Instead of Tucker running through the house looking for lamps to turn on and off, he learns to go to his grandparents and say "hello"; even better than that, he wants to go see them more than the lamps....this one might take some work! There is way more to it, but it's things like this that would make our lives better and Tucker's life not so full of anxiety and frustration. The speech progress he has made in the past 18 months makes her very hopeful that he can speak even better with ABA. She was very happy with the previous therapists we've had, and that Tucker looks forward to therapy at home and at centers, asking for his therapists and teachers by name. She said that is the experience they want him to have with ABA, it is supposed to be fun for him. We are getting our ducks in a row for now, I have called the insurance company, and I now have to get some letters from his doctors saying that he needs the therapy. We hope to get Tucker's evaluation done by the end of April, and to start roughly 9 hours a week of ABA when summer starts. Tucker will start out with fewer hours at first, getting the therapists and Tucker both used to the program. We are hoping that this next step helps Tucker to develop better communication, social, and coping skills, as well as giving us all more insight into how to parent Tucker and interact with him. Wish us luck!!

Another Week

We have had another busy week. Tucker has been doing a lot, so I need to post some new pictures. Last Friday Chris got a "new to us" four wheeler. He has been wanting/needing one for years, so now that I work full-time, he was able to buy a great used one from our friends. He has already taken Tucker for many rides on it, and Tucker already know how to put the key in, start it, and turn it off....we are in trouble! Last Sunday our cousins Morgan and Grace came into town, so we took the four wheeler to mom's so they could all ride. Each kid got turns with Chris, and Morgan and Grace got a turn to drive as well. Tucker had a real fit when it wasn't his turn! But he got over it, and then he was very happy when it was his turn again. Lately Tucker is scared to death of barking. He has really never been afraid of much, and he really always liked big dogs. He never cared for little dogs, like poodles or yorkies. Sarah has a poodle, Eli, who has been around longer than Tucker. He used to guard Tucker, and lay by him when he was little. Well now Tucker is deathly afraid of his high-pitched barks, he cries when he sees him:( Eli lives at mom's, so this is not good. The other night, Eli barked because a car was coming down the driveway, and Tucker ran into Sarah's closet and refused to come out! So the new rule is that when Tucker's inside, Eli goes outside, and vice versa. Now when we walk in the house, Tucker points at Eli and says "outside!" Poor dog, he gets kicked out of his own house. Tucker has always loved our big dog, Buck. Well now he is scared of him, too. At night, every once in a while Buck will bark (he is an outside dog). Chris and I hope that Tucker's asleep and can't hear him, but usually, we'll hear the bark, then a few seconds later, hear stomp-stomp-stomp, as Tucker runs from his room to ours! He is so scared, poor kid, even when the dog has stopped barking. Last Saturday was Jackie's bridal shower. She and Justin are getting married in May; the shower turned out really nice, and many guests showed up. Chris really helped me, he helped me to mix the punch, and he drove with me to the shower to put up the metal bridal arch. Then he left before too many women showed up, haha. On Tuesday mom, Chris, and Mrs. Terri (Tucker's feeding therapist) drove to New Orleans to see the feeding GI doctor. He really didn't have any new advice, and all the tricks he offered to Mrs. Terri were things she had been using for years. Tucker is just a very, very, very hard case.......even with the best therapists and doctors in our area, he just can't/won't eat. :( I think I've blogged enough about how I feel about that......not sure that I was really surprised that the doctor couldn't help too much. Tucker is still on the neurontin for the GI pain with eating, the doctor said it may take a very long time for Tucker to realize that eating no longer hurts. On Wednesday Tucker's class went to the strawberry patch. Chris and Andrew went with them, and they rode with Lauren. The kids had a blast. But as Chris said, "wow, what a day" lol! Any parent who has been on a field trip knows that they WEAR you out! I have been on 4 or 5 field trips with Tucker so far, and last year the strawberry patch was a little too much for me, so Chris went instead. Tucker really enjoyed the petting zoo, the playground, the new big red trampoline, and of course the long bus ride.....the berry picking?? Not so much! Chris had to have a "heart to heart" with him, telling him that he was going to pick berries and he better like it. Last night we got to baby-sit our niece Kinley for the first time. It was really great:) She has such a personality! She loves to talk and be sat exactly upright so that she doesn't miss anything. She is only two months old, so she really doesn't have the muscle control to do that, and she gets very angry if she's not upright. She didn't want to eat last night, because she'd rather talk. It was really adorable, luckily Alexis said it was normal and okay. Now, Tucker on the other hand......his Only Child Syndrome came out in full force. He wanted Kinley's seat, her bottle, and he wanted her OUT of his mommy's arms. I didn't think it would be a big deal, as Tucker pretty much ignores me when Chris is around....well, I learned the fix for that-hold Kinley! While I held her, he couldn't get close enough to me. He was really very good, he "helped" me to give her a bottle, he was very interested in changing her diaper, and he let me sing her the school bus song (which she likes as much as Tucker does, haha). But when she cried, he pointed at her and said "don't cry baby", and when she squealed (which she did because she wasn't sitting up high enough) he ran out of the room and hid in his closet! So we have a lot of progress to make, but all in all it was a very nice evening. Today we went to the March of Dimes Easter egg hunt, it's a new event they will have each year for the Family Teams to get a chance to meet, and a way to say thank you to the family teams. It was at a park in Baton Rouge, so of course Tucker loved swinging and the slides. When it was time to hunt eggs, it was a bit of a struggle to get him off of the swings. We told him "first hunt eggs, then swing." So he is the world's slowest egg hunter, just like last year! The other kids all took off running, and he acted like he was in no rush. He got about 6 plastic eggs, then he was done. Well 2 of those eggs ended up being prize eggs, so Tucker got two HUGE chocolate bunnies! Tucker was about ready to scream and go back to the swings when the MOD chairperson brought out 3 dozen dyed egss.....still in the cartons......eggs have been one of Tucker's big obsessions for about a year now.....and the real eggs are his favorite, not the plastic ones. They used the eggs for spoon races, where the kids had to cross the finish line with their egg still on the spoon. Well Tucker was very helpful at guarding the eggs, making sure everyone took ONLY one, because he wanted the rest for himself. He actually tried to do the race, but his egg kept falling off. After this, Tucker was very happy and well-behaved sitting with us and the other kids, as long as the eggs were in his viewpoint....honestly, Easter is Tucker's holiday! :) We headed over to the party store to get Molli a princess balloon, then we went over to Molli's birthday party. The men were putting together her gift, a new swingset, and the kids jumped on the trampoline while they waited. Tucker loves going to Molli's and he especially loves the trampoline. He is getting much better with talking, today he said "Mommy, get on the trampoline" I'm not sure that anyone else could understand him, but I could. He was also very good with taking turns and transitioning. When we told him it was time to get off of the swing, or time to get off of the trampoline, he listened very well. After that long morning, Chris and Tucker are asleep. Tucker is still in love with Black Bear. I don't even know where this toy came from, but it looks like a 50 cent Happy Meal Toy. Tucker loved it for awhile, then it disappeared. Well the other night my mom found it somewhere at her house, and it hasn't left Tucker's side since. It is small, and it has a little plastic hook on it, so Tucker keeps it hooked on his thumb and takes it EVERYWHERE! When it's out of his sight, he panics "black bear! black bear!" which sounds like "ba bayah". He took it all over the egg hunt, all over the playground, and all over Molli's house. Then today he let it stay on the slide because he needed both hands to swing. I was so impressed that he let it down for a minute. As for brown bear, Tucker's old comfort object, he has pretty much been kicked to the curb. I really feel kind of sorry for him:( But black bear is really more portable and less obvious....however, I have no way to replace black bear should something happen to him, while I know that Cabela's has a big stock of brown bears.....so that's a problem. We are in the process of setting up Tucker's summer plans, which is harder than you might think. We are always trying to balance between pushing him, letting him rest, and letting him just "be a kid" for the summer. Last year we overloaded him on the therapy, which wore him out, but he also made amazing progress last summer. He will likely go to the same preschool he attended last year, but next year he'll be too old, which is always in the back of my mind. We are also getting ready to start intense ABA therapy (probably 9 hours a week or so), but that will likely be pretty fun for him at home. We have always been told there's a "window" of time with kids with autism, like you have to shove as much therapy and make as much progress as you can before you lose that time. Well I think we've done that, but he's almost 5, so and we're not sure how that affects the proverbial window. The ABA therapist that I just interviewed was pretty amazed by Tucker's progress since he got the trach out, and she thinks with him being challenged at school all year, he will do great with the ABA this summer. Tucker thrives on routine and a strict schedule, and we are worried he will be very stressed and bored without the school routine this summer. So hopefully we will come up with a great plan for him that involves work and challenges, as well as some fun, relaxing, and of course naptime!

The Ides of March

Tucker has learned the "magic word", please. Except he yells it! He says "open da door!" and if you say no, he says "open da door! peez!" He is not polite about it at all, but he is so darn cute that he still gets what he wants, almost every time. We don't tell him "say please" because he copies anything we say. We say "ask nicely" and then he says "nicey". So we reward him with whatever he asked for once he finally says please. He is so funny about so many things, tonight after work, I told him I was going to cook some chicken. So he held my hand, took me to the stove, and told me "turn it on." He meant the fan over the stove, it helps with the smoke when I cook;) Then I went to get a measuring cup for the cooking oil, and he pushed me back by the stove "mommy cook!" Chris came in laughing so hard, I swear the two of them are always a team against me. I haven't written in a while, so I'm not sure if I've already mentioned this. Tucker loves me to sing to him and rock, he always has. But his new song is "go to school" which is a song that I make up as I go along. It always starts with "Tucker likes to go to school, he likes to ride the school bus" and then it goes off into odd assortments of listing activities, Tucker's classmates, things Tucker does daily.....Chris gets great amusement from listening to my school bus songs. If I get off track and sing something un-school-like for long enough, Tucker puts me back on track by saying "go to school", "ride da bus", or "Miss Amy" (his teacher). Tucker is still doing really well with his speech, but he is still not responding to conversations. His bossiness now extends to 5 and 6 word sentences;) It's funny, because when he knocks on a door, we say "who is it?" he repeats "who is it" We are trying to get him to say "Tucker" and to answer "Tucker" when asked his own name, and to answer "4" when asked how old he is. Last year, we got him to answer "3 years old" right before he turned four, so maybe we should start on 5 right now. Chris and I celebrated our 6th wedding anniversary last Friday. I came home from work to grilled fish and stuffed crab, as well as a huge bouquet of flowers:) This was a surprise, and Tucker was at my mom's house. I had went on an overnight trip for work, so I missed Tucker too much, and I decided to go get him! So that surprise got cut short. The next night we went on our planned outing to a nice restaurant. The food was amazing, we had reservations, and people kept coming up to us "Happy Anniversary, Mr. and Mrs. Townsend." They brought us a cake with a candle, and we weren't sure what to wish for. It was really a great night:) Tucker spent the night at Sissy and Pops house with his cousin Brycen, and they had a lot of fun. She is so sweet with him, so I'm sure she did whatever he asked, which is of course his idea of fun:) On Sunday we went to Paw Paw Ed's; Maw Maw wasn't home, and Tucker went around looking for her. Tucker was so excited to see Molli and Addi, and we spent over an hour swinging outside listening to Addi's IPod. Hearing Molli sing some Justin Beiber songs just made my day! She turns 4 tomorrow, so crazy to think that she's that old. Tucker was so completely content and at peace swinging outside with his cousins, I wasn't sure I'd seen him that happy in a while. Then that evening, we went to see Chris's family at his parents' house. Andrew and Chris were throwing the football around outside, and Tucker ran in between them, not caring if they ever threw the ball to him. He ran circles around them, and followed the ball, then when they gave him his turn, he would slam it onto the ground and crack up. Then he would laugh his big belly laugh, he is so incredibly happy to play with his Daddy and uncles:) So I would say Tucker had a great weekend, and so did we. He saw the eye doctor a few weeks ago (Chris braved that appointment alone), and the doctor said he is the same as before-he has weak eyes, so the squinting and the nystagmus are just when he gets tired, nothing we can do about that. His vision is fine, so no glasses. He has a feeding clinic appointment next Tuesday, due to illnesses on Tucker's part and the doctor's side, that appointment has been delayed two months! So I am wondering what the doctor will think, as his feeding progress is good, but not great. Yesterday his teacher sent a note home that "Tucker was putting food in his nose." Well.....that's disgusting, but it's close to his mouth, right? ;) I hope he wasn't putting it in his nose and then licking it.....hopefully it was the other way around. He also has a neurology appointment coming up, which is "always" fun....maybe that's why I forgot to reschedule it and we haven't been in over a year. Parent/Teacher conference day is Friday, so Chris and I will meet with Mrs. Amy to discuss Tucker's progress. While he has made great progress this year, we never leave these meetings feeling good about ourselves. Maybe this will be different, but I am not holding out for that. Thanks for checking in on us.

Cooper Knight

While Tucker has been his usual happy self lately, I have been carrying around a heavy heart. On Thursday night, Cooper Knight passed away at home, surrounded by his parents and three older siblings. His family knew he did not have a long time left on earth, Cooper has fought so hard in his four years. His parents exhausted every option to keep him healthy, including taking him across the country for an intestinal transplant. In the end, his mitochondrial disease was too severe for any of the treatments to help. Cooper's family had their Make A Wish trip a week after ours, and they had the best time. I have never met little Cooper, but I know he was Samuel's good buddy (same last name, but they aren't related by blood). So now Cooper and Samuel are together in heaven, eating lots of ice cream and having a blast. Please continue to pray for all families who have to say good-bye to their babies. While it hurts a parent's heart to watch their baby struggle in pain on earth, I can't imagine the pain of letting them go onto eternal peace while having to stay behind.

It's Been awhile

Things have been moving steadily along over here. This will be a quick summary of the last few weeks, probably a very long post. On Valentine's Day, I left for my first overnight work trip. I went to DC for a conference for federal grants. It did not relate directly to my job, but it was close enough, and someone else couldn't go at the last minute, so I boarded a plane on Feb 14th. I didn't expect how hard it was going to be to leave my family for 3 days. :( But it was! And I felt like I was cheating on Tucker by riding the Metro (DC subway which is full of escalators at every station), riding the moving walkways in the airports, and then riding a trolley around DC at night for the tour (I could picture his face riding in a trolley). I also visited a few malls (one was attached to my hotel, one was in a huge train station), which of course have escalators and one had a carousel. And everytime I said "hotel room" I could hear Tucker's voice "hotale". That kid LOVES hotel rooms! My hotel was right on the orange Metro line, and each time I heard the speaker say "Orange Line" I thought "Ojz" which is how Tucker says orange, his current favorite color! (It has now since changed back to purple, by the way). Tucker didn't seem to miss me until the third night, when he cried "mama" all evening. Of course on Thursday morning I woke up with him, and he did not seem at all happy to see me! The conference itself was pretty boring, but also informative. I am glad I went, but I don't see myself taking any of those trips for awhile. I will be in Ruston, LA next week, but that's for a shorter time. While I was away, Tucker missed a lot of school. I think on Tuesday he came home because of diarrhea. He was his active self all day with mom, then she kept him home the next day just in case. He seemed fine that day as well. So then Thursday, the school called, and mom went get him again. Tucker kept shoving his hand down his throat, and he was "off" so they sent him home. Mom took him grocery shopping to "buy some eggs" so I think by then he was just fine with missing school! Chris took him to the pediatrician that Friday, where he got a clean bill of health-no sore throat, ear infections, or tummy issues. That weekend, Chris went squirrel hunting and Tucker and I went over to visit Chris's family. Tucker has been really good with baby Kinley (at least I think, I'm not sure how kids usually act with babies), not hitting her or sitting on her....which is honestly what I expected him to do. Instead, he has reacted in a very typical way, by acting like a baby! It is really funny, yet frustrating, to watch, as he tries to climb into any seat or toy she has, and cover up with her blankets. He even put her bottle in his mouth, which is hilarious because he might have drank out of two bottles in his whole life...... So we have been coming up with ways that being 4 is way better than being a baby, like Tucker gets to ride 4 wheelers and go to school. I have just been really taken by surprise with this development, Tucker sees Kinley just once a week, but he has really noticed the change. I almost feel bad to visit with Kinley, like I should play with Tucker when we're visiting so he isn't jealous. But of course I want as much baby time as I can get, as my Tucker is getting bigger every day. I forgot how little newborns are. Last week Tucker had "poor" behavior a few times, which is the worst he can have. We have really been thrown with his Celexa medication. It is for anxiety, and he gets it everyday, starting when he was 2. Every month, like clockwork, we get to the last few doses of the bottle, and it's like Tucker is getting NO medication. He grinds his teeth, pulls his hair, hits, and has no interest in schoolwork. Then we start the new prescription, and it's amazing, he gets "excellent" behavior and is SO good. Both the pharmacist and neurologist say that's crazy and makes no sense....but all of us who see Tucker on a daily or weekly basis can track his mood based on what part of the med he is on.....so our new plan is to refill the med every 3 weeks, so we can avoid that last bad week altogether, even though we will be throwing out supposedly good medication. This week, Tucker hasn't missed any school. But his teacher called on Tuesday because Tucker laid on the ground for center time. He went to the book center and laid on the ground, then when the time came to change centers, he went to the kitchen center and laid on the ground. So Chris was home that day (long story) and he drove over to check him out. It was outside time at that point, and Tucker had of course perked up. He also had a BM right after Chris left, and the teacher said Tucker was visibly better after that. Last night the same thing happened....Tucker was "off", walking funny and just really sad. Then he had a big BM and once he was cleaned up, he ran around in the best mood. Over the weekend we enjoyed some good family time together. On Friday night Gina and Jene'e baby-sat Tucker so Chris and I could go out. We "go out" to a bar about once a year. My BIL Chris's band usually plays in Mississippi and Alabama along the Gulf coast, but his band was in town, so we all wanted to check it out. It was a lot of fun:) The best part was that Gina got up with Tucker at 7am:) But I got up at 8, so it wasn't really a sleep-in day. I went shopping for Jackie's shower (my future sister-in-law, she's marrying Justin on May 21st at the beach-we booked our condo last week). After that, I had some "me" time at the mall, again I felt like I was cheating on Tucker by going to the mall without taking him. On Saturday night, Chris, Tucker, and I attended a Young Adult Ministry bonfire at another couple's house. Our church has a Young Adult Ministry for people age 18-35, and it's mainly young parents. We have meetings, service events, and social events. I usually attend alone, but for this fun event, I knew it would be very kid-friendly (or as kid-friendly as fire can be, haha). The home had a big swingset with four swings, a big slide, a sandbox, and tons of ride-on toys. Tucker spent the majority of time on the swings, but he let the actual babies ride in the baby swing (which is a big deal) and he was amazing at waiting for his turn on toys, and then getting off of a toy when his turn was over. He was way too scared of the bonfire to roast a hotdog or a marshmallow, he pointed at it "fire, hot dog" and I told him "you are so smart! we use the fire to cook the hotdog." He was excited to see the other kids' hot dogs and watch them eat, but he wouldn't touch his. He was very upset when we left at 830, then after his bath he went right to bed. He was also very good at mass on Sunday (he calls it "beeg chuch"). I started taking Tucker to mass with me in October, and we always go straight to the cry room (there is no nursery or baby-sitting, but Tucker would really be too old for that anyway). We recently realized that if we keep this up, Tucker will never know that he is supposed to leave the cry room. He loves his routines, and if we keep that routine, it will just stay ingrained. So a few times, I took him into big church, and within minutes we were back in the cry room. He would scream out "Paw Paw House" which is his prize for being good during church. He also used to try to climb "up da stairs" (the altar) when we went up for Communion, luckily he has gotten better with that. So anyways, the last few times at church, there have been screaming babies in the cry room, and Tucker has been very upset by this. I told him that big kids sit in big church, and he could listen to the priest, not the babies, if he was a big kid and sat quietly at church. So this Sunday, we sat right up front with Sarah, Dylan, and Gina. There was a lot of wiggling, climbing, and whispered threats of no Paw Paw's House, but all in all, he did great! Plus I could actually hear the mass this time since there wasn't any crying. I am very glad that there is so much music during the mass. That is Tucker's favorite part, and what keeps him happy and quiet. Of course after mass we went to Maw Maw's and Paw Paw's. It was a very nice day, so he got to swing outside with Paw Paw, which made his day. Tucker has had good behavior this week, though not really any progress with the potty training. His teacher does not think he is quite ready, so maybe in a few months. Thanks for checking in on us.