Since my last post, it seems that things are really turning around concering Tucker's ABA prospects.
When we are thrown a curveball, we always deal with it; however, it is still hard. So that curveball of not being able to start ABA right on schedule, and the fear of not being able to start at all was tough. I want to share this story because it is just one example of the many instances like this since Tucker was born.
By Wednesday morning, I was very concerned about the therapy situation. The ABA consultant had advertised via her usual places to find therapists, and no one had responded. She was surprised by it, and assured me it would be okay; I was not so sure.
I spoke with my mom on Wednesday morning, and I just felt overwhelmed by the idea of advertising for therapists, interviewing them, hiring them, training them, and then wondering if they would work out. I want results now! Haha, typical Leigh fashion.
She basically told me that I should feel overwhelmed, that anyone would, that no one person could handle everything I had just described to her. She then said that I was never meant to handle any of this alone, that God was right there waiting for me to hand it over to Him. She asked if I had prayed about this particular problem, the problem of finding therapists. I said "well of course not, it's just finding therapists, why would God care about that?......" then I stopped and realized I was doing what I always do. Agonizing over a problem, wondering why I couldn't solve it immediately on my own, when really I needed to pray about it.
No matter how well I advertised, how great of an ad I put out, how much I "talked up" Tucker or how badly we all feel that he needs this therapy, I am not in control of this at all. I needed to ask for God's guidance; maybe the ABA therapy just wasn't going to work out this summer, maybe it was....but I had to give it up and let it be out of my hands.
Well that was on Wednesday....on Tuesday, I had accompanied by summer students to two seminars about publishing scientific papers. The content really had nothing to do with my job, but I attended to make sure that my students showed up and paid attention ;) The speakers were very engaging, and one speaker talked about how social media has changed our lives in so many ways, and she talked about how using that can help scientists communicate to the public and also help them keep up with the latest research. She showed a timeline of social media, and it was crazy to see how recently facebook, twitter, etc. became widespread and how quickly it has transformed everything we do. She explained how we all trust people in our "social network" and that reading things on facebook means much more to us than reading something in the newspaper because we trust the source.
So on Wednesday, the seminars were over and I was back in my office wondering about ABA therapy amidst my busy day. I took a moment and really prayed about the situation, asking that God would reveal his will to me....whether that matched up with my will or not.
A short while later, I decided to post about our search for ABA therapists on facebook.....if social media transformed science, it could help me find a therapist, right?? ;) I got 4 messages in my inbox within two hours, and by Wednesday evening, I had 6 resume's emailed to me. And they were good resume's....way better than what I was expecting to apply. That same day, Amy (the consultant) emailed me a resume' she had received, which looked fantastic, and then another student contacted Amy about wanting to work with a child in the Ascension area. Amy is going to look through the resume's, get people to come over and meet Tucker, and then get started the week after next (we are going to the beach this week). So I am just floored by that response.
We have been crazy busy (when are we not??) and so Chris and I have really been slacking on our home ABA with him during the evenings. Amy came in for two hours Friday afternoon to work with Tucker, and I was pretty scared about what she would find with his behavior. I was getting my hair and nails done for my best friend's wedding (I got to be the Matron of Honor, how cool is that??!!) so mom and Mrs. Mia had Tucker all day. Mom was there for the ABA therapy, and Amy was super impressed. We have been counting 10-15 "mands" or requests from him per hour, which is horrible. Amy counted 92 mands in a 90 minute period, which averages about 60 per hour....the goal is 100 per hour, and we are at the very beginning. I said "well there is proof that the problem is us!" haha, because he certainly doesn't mand 60 times per hour with us.
So I am very happy about that, and once again, we were shown that ABA is really what he needs to be working on right now; so we feel so blessed that we will be able to make that happen sooner rather than later.
As I mentioned, my best friend Jessica got married Friday. I forgot my camera at work :( So I don't have a single picture. We have known eachother since we were both 1 year old, and we have the cutest picture of us hugging at that age. (on a side note: Our families are pretty interwoven; her younger brother Michael is 12, and at the reception his friend asked him if he's ready to be an uncle. He said "well I am, I'm Tucker's uncle." His friend looked at him like he was crazy! He explained that we are all like sisters to him, so he is kind of an uncle already.) Jessica met a great guy a few years ago, and they fell in love and got married last night. We had a sleepover Thursday night, then hair and nails on Friday, then of course the wedding and reception. It was all beautiful, and seeing Jessica and Mitch become husband and wife was truly a sign to all who know them, that God has great plans for those who follow Him. I could go on and on about them, but I'll spare you all that;)
We leave for the beach this evening, my grandparents and uncle reserved a 3 bedroom condo and the 3 of us are tagging along. Tucker really loves my Uncle John ("Unca Zhon") so I am hoping Tucker does not bother him the whole time! I am also hoping that we spend more time at the beach and/or pool than the hotel, as we got the suitcases out yesterday and Tucker was SO excited to be going to a hotel again......the beach, not so much! We already bought a few supplies, one of them being a huge box of chips to go with sandwiches for the week. Tucker has been carrying it around like a suitcase, he doesn't want to forget to pack it! I have told him over and over that he is sharing those chips, because everyone will want some, so we'll see how that goes.
Amidst all of the wedding celebration and good news this week, I read that another family is going through a very difficult time. After watching their little girl fight corageously for almost 5 years, Eithene's parents have made the very difficult decision to enter Eithene into hospice. I don't know all of the specifics of this, but I have followed her mom's blog for a long time, and she has offered me hope and strength many times. Eithene has several complex conditions, and her parents have made tough decisions for her all of her life, while continuing to make her life as good and normal as possible while she spent most of it inside the hospital. You can read about her here. Eithene Please pray for this family as they so lovingly give their little girl a rest from her lifelong battles.
Monday, June 13, 2011
Sunday, June 5, 2011
So Frustrated
I am pretty aggravated right now....we have been planning to have Tucker in ABA 10-20 hours per week this summer, to work on lots of things, like waiting, listening, and talking.
It took us a few months to find a consultant that we like, and then it took about 5 weeks for her to do the evaulation. She did that in three phases, one at school, one with Mrs. Joy at therapy, and one at home with Chris, Tucker, and me. She is the consultant, but the people coming in for the day to day work at home are therapists that follow Amy's directions and take lots of data. Amy had two therapists lined up to work with Tucker, they were already well-trained, so they could start as soon as Tucker was out of school for the summer. We were so excited, and thought it was too good to be true....well it turns out that it was.
About two weeks ago, we found out that one of the therapists didn't want to work here. She never met us, Amy thinks she just didn't have the availability. These therapists are in high demand, and they make good money, so they can really choose when they want to work and with whom. So we thought about it, and decided that having one therapist would be good enough, and we would just work with Tucker at night and on weekends. Well, last week, we got an email, out of the blue, that the other therapist had no availability.... (we have already discussed training family members and hiring them, the data shows that it doesn't work nearly as well...the therapists really need to be all-business and it doesn't work out well when the child already knows them as aunts or friends)
So here we are, two weeks into summer, with no one to work with Tucker. It may not seem like a big deal, but Tucker has been in many therapies and we are all on board that ABA is our best hope for him to reach his full potential. It was always out of reach because of the cost, but now we are able to afford some services, and Tucker is about to be on my new LSU health insurance which will cover ABA. I always thought that once we had the funds for ABA, it would be so easy to start a program. Now I am realizing that we will have to hire brand-new therapists, put them through 6-8 weeks of training with Amy, and then hope that they are good at their jobs and stay on for at least a year....and by then school will be starting, and after school Tucker is really too tired for any ABA therapy....
Facing such hurdles to starting an ABA program due to availability issues just stinks! We had the same issue with finding reliable childcare for the summer. There is one local camp that accepts special needs kids, but we'd have to provide an all-day aide for Tucker as well as paying for the camp. Plus he needs to be 6 years old for that camp, so maybe next year. We just want somewhere that is structured, that has therapy, activities, and other kids, but is also safe for Tucker. Well that literally does not exist in the BR area. Not that it exists anywhere else, as I have never lived anywhere else.
Right now we are at an "okay" place with Tucker's summer, as he started 3 half-days per week of preschool today, and he was SO excited to go in today. His childcare aide comes in all day on Tuesdays and Thursdays, and drives him to feeding therapy and private swim lessons. He is doing GREAT with the swim lessons, he goes three days a week-Tues, Thurs, and Fri. Chris took him on Friday and took lots of videos, Tucker is really and truly swimming. Chris and I find that so amazing, as we thought the first two-week session would be a power struggle between him and the swim teacher! There was no telling what odd obsession Tucker could have developed at the pool, but he gets in and really swims. He can swim about 3 feet underwater, which is about 4 strokes maybe. My goal is for him to be able to keep afloat if he would accidentally fall into some water somewhere. Last summer he had no ability to sense danger, so he would try to walk into a pool at the deep end with no fear. Now he looks for the steps and likes to be able to touch the bottom of the pool, but we want to be safe and know that he can swim no matter what would happen. We are going back to the beach next week for a four-day vacation, and I hope this time we spend all of our days in the water :) Not in the hotel! ;)
All in all, we are finding that Tucker really needs all-day stimulation to keep him from getting bored, and we were hoping ABA would be that stimulation. Please pray that our situation all works out, because now that Tucker is 5 years old, we are even more insistent that we help him to be independent and give him the skills to deal with daily life. While it is so tempting to "take a break" from pushing Tucker, I want to look back years from now and know that we did everything we could to help Tucker. And we all believe that ABA is a big part of that.
It took us a few months to find a consultant that we like, and then it took about 5 weeks for her to do the evaulation. She did that in three phases, one at school, one with Mrs. Joy at therapy, and one at home with Chris, Tucker, and me. She is the consultant, but the people coming in for the day to day work at home are therapists that follow Amy's directions and take lots of data. Amy had two therapists lined up to work with Tucker, they were already well-trained, so they could start as soon as Tucker was out of school for the summer. We were so excited, and thought it was too good to be true....well it turns out that it was.
About two weeks ago, we found out that one of the therapists didn't want to work here. She never met us, Amy thinks she just didn't have the availability. These therapists are in high demand, and they make good money, so they can really choose when they want to work and with whom. So we thought about it, and decided that having one therapist would be good enough, and we would just work with Tucker at night and on weekends. Well, last week, we got an email, out of the blue, that the other therapist had no availability.... (we have already discussed training family members and hiring them, the data shows that it doesn't work nearly as well...the therapists really need to be all-business and it doesn't work out well when the child already knows them as aunts or friends)
So here we are, two weeks into summer, with no one to work with Tucker. It may not seem like a big deal, but Tucker has been in many therapies and we are all on board that ABA is our best hope for him to reach his full potential. It was always out of reach because of the cost, but now we are able to afford some services, and Tucker is about to be on my new LSU health insurance which will cover ABA. I always thought that once we had the funds for ABA, it would be so easy to start a program. Now I am realizing that we will have to hire brand-new therapists, put them through 6-8 weeks of training with Amy, and then hope that they are good at their jobs and stay on for at least a year....and by then school will be starting, and after school Tucker is really too tired for any ABA therapy....
Facing such hurdles to starting an ABA program due to availability issues just stinks! We had the same issue with finding reliable childcare for the summer. There is one local camp that accepts special needs kids, but we'd have to provide an all-day aide for Tucker as well as paying for the camp. Plus he needs to be 6 years old for that camp, so maybe next year. We just want somewhere that is structured, that has therapy, activities, and other kids, but is also safe for Tucker. Well that literally does not exist in the BR area. Not that it exists anywhere else, as I have never lived anywhere else.
Right now we are at an "okay" place with Tucker's summer, as he started 3 half-days per week of preschool today, and he was SO excited to go in today. His childcare aide comes in all day on Tuesdays and Thursdays, and drives him to feeding therapy and private swim lessons. He is doing GREAT with the swim lessons, he goes three days a week-Tues, Thurs, and Fri. Chris took him on Friday and took lots of videos, Tucker is really and truly swimming. Chris and I find that so amazing, as we thought the first two-week session would be a power struggle between him and the swim teacher! There was no telling what odd obsession Tucker could have developed at the pool, but he gets in and really swims. He can swim about 3 feet underwater, which is about 4 strokes maybe. My goal is for him to be able to keep afloat if he would accidentally fall into some water somewhere. Last summer he had no ability to sense danger, so he would try to walk into a pool at the deep end with no fear. Now he looks for the steps and likes to be able to touch the bottom of the pool, but we want to be safe and know that he can swim no matter what would happen. We are going back to the beach next week for a four-day vacation, and I hope this time we spend all of our days in the water :) Not in the hotel! ;)
All in all, we are finding that Tucker really needs all-day stimulation to keep him from getting bored, and we were hoping ABA would be that stimulation. Please pray that our situation all works out, because now that Tucker is 5 years old, we are even more insistent that we help him to be independent and give him the skills to deal with daily life. While it is so tempting to "take a break" from pushing Tucker, I want to look back years from now and know that we did everything we could to help Tucker. And we all believe that ABA is a big part of that.
Thursday, June 2, 2011
Summer Update
Tucker's birthday party went pretty well. He was super excited to go to Jump N Jive, and he was even more excited when he saw his friends there.
By about half an hour into the party, the Jive room was packed full of people. I meant to bring extra chairs, but we forgot. There are several benches along the wall, but he had a ton of adults, and not enough seating. Tucker jumped right into the inflatable Gladiator-type jumper, where one person is supposed to stand in the middle while other people knock you off of the pedestal with big foam mallets. Tucker loves craziness, so he had a blast with Gina, Dylan, and Tyler jumping all around. The kids all took turns going down the big inflatable slide, even Kinley! Chris has now introduced her to the pool and the inflatable slide, I think he is going to either be her very fun uncle, or the scary uncle, depending on her personality :)
For the price of the party, we got private use of the room for 1 hour and a half, then 30 minutes in the party room for cake and pizza. So after one hour, the party coaches blew up the inflatable party chair and tried to get Tucker to open his gifts. Tucker's party was firetruck themed, but I had told everyone not to get him any firetrucks.....he already has about 12! His friend Wes was mad at his mom Lauren when she got Tucker an aquadoodle instead of a firetruck, he said firetrucks are Tucker's favorite. Well, Tucker's friend Daniel really wanted to get Tucker a firetruck, so his mom let him ;) That was one of the first gifts Tucker opened, and that was it! He was ready to jump some more. I was fine with that, as we had 30 minutes left that we paid for to jump. So we let all the kids go back to jumping, and packed the gifts into the car.
When it was time to go to the party room, Tucker was pretty upset and it took us a while to convince him to sit with Chris in the big chair and lick the pizza. We had pizza and two sandwich trays, and after all of the jumping, all of the kids and adults were pretty hungry.
The party room was packed with all of our friends and family, and everyone was talking and eating. When it was time to sing Happy Birthday, the party coach turned the lights off. Tucker was in shock, I think, but when it was time to blow out his big "5" candle, he knew exactly what to do and blew it right out. I was so proud of him, as we worked all year on blowing whistles as part of OT.
My parents got Tucker a new tricycle (Chris rolled over the old one with his truck!), and it has a bar on the back that we can push and steer. Tucker rode out of the party on his bike, it was so cute.
Once we got home, Tucker was all about the presents! He got a lot of stuff, and he was so excited. He got a cowboy hat and Elmo Country song movie from Molli & Addi, and a Mickey and Yogi Bear movie and a bag of Cheetos from Sarah & Brad. He got a set of luggage from Justin & Jackie, which must sound crazy for a 5 year old, but he really needs it! We have several overnight trips planned for the summer, and he needs his own suitcases to put things in. He got a big water play table from the Christian family, which he will love once we put it together. Last night he was trying to pour water out of his cup into his bowl....not allowed inside....but perfectly acceptable at the water table. He of course still loves the firetruck, and Daniel & Julia also got him a bear shaped pillow with a sleeping bag attached. My parents actually got him another one, so he will have an extra. My mom also recorded herself reading a storybook to Tucker. It is a Hallmark book, I think, and it is of course about two bears. When Tucker opened it, I told him it was a Nana Bear and a Tucker Bear. So now he "reads" it by himself by turning the pages and pointing out Nana Bear and Tucker Bear on every page, it is so cute! My grandparents gave me money to pick out a gift for Tucker, and I chose a pair of training skates. Everyone told me that was crazy, that he was going to end up in the Emergency Room....well, he loves them! He called them trucks at first, now he asks for his skates. And yes, he falls a lot, but he falls a lot walking, too. We have found that he pays more attention to his balance when he is on the skates, so maybe they will help him with that.
I had to work on Saturday :( As I will have to several times this summer and fall, as this is the busy time for my job. On Sunday, we all went to eat Hibachi for Mrs. Mia's and Mr. Ricky's birthdays, which are right behind Tucker's. Since Tucker has been born, the other May and June birthdays have kind of fell on the back burner, so it was nice to celebrate. Anyways, it was a very nice lunch, Tucker behaved very well and licked all of his Fritos. I gave him the menu and asked him to look at the pictures to choose something, he looked at it and said "hamburger." Haha, not quite. He licked the Edamame, but was not impressed.
Tucker started a two-week session of swimming lessons this week. It is at the therapy pool, with a one-on-one special needs swimming instructor. He is doing very well, they mainly work on putting his whole face underwater. Chris is taking him today, so we'll see how that goes. Chris has been encouraging Tucker to put his face underwater in the bathtub, and he was SOOO proud when Tucker did it. Tucker also got a baseball tee and bat from my co-worker and her family at the party, so Chris is having fun trying to get Tucker to concentrate enough to hit the ball, not the tee!
So far the summer is way too hot. We have been in record highs this week, at 100 degrees before considering the heat index. So Tucker has been skating and playing baseball inside the house lately.
As far as therapy goes, Tucker had about a week off in between school and therapy, and he has been pretty bored. He starts three half-days preschool next week, and he will also starte OT feeding therapy twice a week. The ABA therapists we thought we had hired for the summer have fallen through, so we are now scraping by with the two or so hours of ABA at night that Chris and I try to implement after working all day :/ It is going much better that we thought, which gives us hope that once we find some therapists Tucker will make huge progress. The BCBA consultant who designs and runs Tucker's program will come over next Friday (while I will be getting ready for Jessica's wedding), and hopefully give us an update soon on finding therapists. The goal is to have 15-20 hours of ABA per week; right now we are at about zero!
Please pray that we get Tucker's ABA program up and running soon. We are working on waiting. Tucker went from waiting 3 seconds to now being able to wait for 30 seconds....we need to be up to 20 minutes before we can start potty training, so wish us luck.
By about half an hour into the party, the Jive room was packed full of people. I meant to bring extra chairs, but we forgot. There are several benches along the wall, but he had a ton of adults, and not enough seating. Tucker jumped right into the inflatable Gladiator-type jumper, where one person is supposed to stand in the middle while other people knock you off of the pedestal with big foam mallets. Tucker loves craziness, so he had a blast with Gina, Dylan, and Tyler jumping all around. The kids all took turns going down the big inflatable slide, even Kinley! Chris has now introduced her to the pool and the inflatable slide, I think he is going to either be her very fun uncle, or the scary uncle, depending on her personality :)
For the price of the party, we got private use of the room for 1 hour and a half, then 30 minutes in the party room for cake and pizza. So after one hour, the party coaches blew up the inflatable party chair and tried to get Tucker to open his gifts. Tucker's party was firetruck themed, but I had told everyone not to get him any firetrucks.....he already has about 12! His friend Wes was mad at his mom Lauren when she got Tucker an aquadoodle instead of a firetruck, he said firetrucks are Tucker's favorite. Well, Tucker's friend Daniel really wanted to get Tucker a firetruck, so his mom let him ;) That was one of the first gifts Tucker opened, and that was it! He was ready to jump some more. I was fine with that, as we had 30 minutes left that we paid for to jump. So we let all the kids go back to jumping, and packed the gifts into the car.
When it was time to go to the party room, Tucker was pretty upset and it took us a while to convince him to sit with Chris in the big chair and lick the pizza. We had pizza and two sandwich trays, and after all of the jumping, all of the kids and adults were pretty hungry.
The party room was packed with all of our friends and family, and everyone was talking and eating. When it was time to sing Happy Birthday, the party coach turned the lights off. Tucker was in shock, I think, but when it was time to blow out his big "5" candle, he knew exactly what to do and blew it right out. I was so proud of him, as we worked all year on blowing whistles as part of OT.
My parents got Tucker a new tricycle (Chris rolled over the old one with his truck!), and it has a bar on the back that we can push and steer. Tucker rode out of the party on his bike, it was so cute.
Once we got home, Tucker was all about the presents! He got a lot of stuff, and he was so excited. He got a cowboy hat and Elmo Country song movie from Molli & Addi, and a Mickey and Yogi Bear movie and a bag of Cheetos from Sarah & Brad. He got a set of luggage from Justin & Jackie, which must sound crazy for a 5 year old, but he really needs it! We have several overnight trips planned for the summer, and he needs his own suitcases to put things in. He got a big water play table from the Christian family, which he will love once we put it together. Last night he was trying to pour water out of his cup into his bowl....not allowed inside....but perfectly acceptable at the water table. He of course still loves the firetruck, and Daniel & Julia also got him a bear shaped pillow with a sleeping bag attached. My parents actually got him another one, so he will have an extra. My mom also recorded herself reading a storybook to Tucker. It is a Hallmark book, I think, and it is of course about two bears. When Tucker opened it, I told him it was a Nana Bear and a Tucker Bear. So now he "reads" it by himself by turning the pages and pointing out Nana Bear and Tucker Bear on every page, it is so cute! My grandparents gave me money to pick out a gift for Tucker, and I chose a pair of training skates. Everyone told me that was crazy, that he was going to end up in the Emergency Room....well, he loves them! He called them trucks at first, now he asks for his skates. And yes, he falls a lot, but he falls a lot walking, too. We have found that he pays more attention to his balance when he is on the skates, so maybe they will help him with that.
I had to work on Saturday :( As I will have to several times this summer and fall, as this is the busy time for my job. On Sunday, we all went to eat Hibachi for Mrs. Mia's and Mr. Ricky's birthdays, which are right behind Tucker's. Since Tucker has been born, the other May and June birthdays have kind of fell on the back burner, so it was nice to celebrate. Anyways, it was a very nice lunch, Tucker behaved very well and licked all of his Fritos. I gave him the menu and asked him to look at the pictures to choose something, he looked at it and said "hamburger." Haha, not quite. He licked the Edamame, but was not impressed.
Tucker started a two-week session of swimming lessons this week. It is at the therapy pool, with a one-on-one special needs swimming instructor. He is doing very well, they mainly work on putting his whole face underwater. Chris is taking him today, so we'll see how that goes. Chris has been encouraging Tucker to put his face underwater in the bathtub, and he was SOOO proud when Tucker did it. Tucker also got a baseball tee and bat from my co-worker and her family at the party, so Chris is having fun trying to get Tucker to concentrate enough to hit the ball, not the tee!
So far the summer is way too hot. We have been in record highs this week, at 100 degrees before considering the heat index. So Tucker has been skating and playing baseball inside the house lately.
As far as therapy goes, Tucker had about a week off in between school and therapy, and he has been pretty bored. He starts three half-days preschool next week, and he will also starte OT feeding therapy twice a week. The ABA therapists we thought we had hired for the summer have fallen through, so we are now scraping by with the two or so hours of ABA at night that Chris and I try to implement after working all day :/ It is going much better that we thought, which gives us hope that once we find some therapists Tucker will make huge progress. The BCBA consultant who designs and runs Tucker's program will come over next Friday (while I will be getting ready for Jessica's wedding), and hopefully give us an update soon on finding therapists. The goal is to have 15-20 hours of ABA per week; right now we are at about zero!
Please pray that we get Tucker's ABA program up and running soon. We are working on waiting. Tucker went from waiting 3 seconds to now being able to wait for 30 seconds....we need to be up to 20 minutes before we can start potty training, so wish us luck.
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