Wow, it has been a long time since I have updated this blog. It has just been a crazy few months around here. Some good news, Abigail seems to be progressing with her speech just as a typical child should, saying dank du, ball, shhh (for shoe), no no, mommy, dada, woo (for Luke), where mommy go?, bye bye, hi (and saying it to anyone and everyone, miss social bug she is), beah (for her bear), go, dog, tee (for teeth), oh I could go on and on. It is very reassuring!
She is walking and following Luke everywhere. Every time we ask Luke if he needs to go potty, she walks right in the bathroom, even before Luke sometimes. So cute. She even tries to push the stool up to the potty and stand like brother. How do we even begin to explain to a 17 month old that girls just don’t do it that way!
Last night we went to the park down the street after dinner. Traditionally, daddy takes Luke on a walk there while I finish cleaning Abigail’s mess up from dinner, then the two of us drive over. Abigail did not want any of that. She saw them leave and ran to the table, grabbed her shoes off of it, sat down and tried to put her shoes on, fussing the entire time. She wanted to go now! I will tell you what, Abigail is one little spit fire and we love it!
On to Luke, he is plugging along with all his therapy. He gets about 14 hours of ABA a week, 45 minutes of speech a week and occupational therapy 1 hr per week. But, it is all play to him, he has fun, he loves the one-on-one time he gets. One of his ABA therapists works for a private school system and is on hiatus during the school year and will be back in the summer-Miss Johanne. Thankfully we were able to pick up Miss Kelsey, another therapist, who starts this week.
We did move Luke’s OT services to Children’s Therapy Center. He was at Kosair Children’s Hospital, but this new place has a lot more services and space. We took Luke there last week for the first time and he loved it! They kept him active, which is very important when working with him! He is an active kid to say the least!
He is making great progress, communicating in 4-6 word sentences, says hi to people and friends, has almost mastered undressing himself, he draws circles, squares and crosses (the later two we had no idea he knew how to do until is OT evaluation last week!). He knows his age, his last name, and his birthday now! He surprises us every day with the things he can do!
Insurance company battles continue on. Lost our battle for reimbursement for speech therapy, all appeals exhausted there. UPS said that it wasn’t medically necessary. So, what is speech therapy for then? Luke is speech delayed, he needs speech therapy, bottom line. This stuff just irritates me.
There is still a sliver of hope for ABA and OT (although if they said no to speech, things do not look good for OT). We have 30 days before we hear of decisions on that from UPS. Luke started ABA therapy in June and we are still in the final appeals stage with UPS/Aetna to cover that. We probably have another month to wait on that. So in total 5 months between the submission of claims and actually getting a decision.
This is really taking a toll on finances. Family has helped, but there is only so much they can do. We are spending around 2 grand a month out of pocket. So some back pay from UPS/Aetna would really be nice.
In the end there is hope, it is called living in Indiana and getting a private insurance policy. Indiana is one of the very few states in the entire country that have mandates that insurance companies must pay for treatments related to autism. UPS/Aetna falls under the one exception which gives self-insured companies an option whether or not they want to cover it. Hence the battles we are facing now. But a private policy must pay for it, if you live in Indiana. So, mom and dad, no, we will not be moving to Kentucky anytime soon. Although the law in KY has similar mandates, they have a $500 cap per month. Indiana has no cap!
I think that is all for now, thanks for reading!
Monday, September 28, 2009
Tuesday, June 30, 2009
Just plain exhausted.
Update on Luke:
Been a little slow on updating things! Luke is now responding not only to the question "What is your name?" but now "How old are you?" on a consistent basis. How wonderful!
He started occupational therapy this week and did really well! We also hired a third ABA therapist who started with Luke last week, Miss Heidi. Things are going well so far!
Onto other things. . .
Being a working mom of a special needs child is just completely exhausting. I could literally fall asleep at my desk right now. I don't do coffee, Coke is my main source of caffeine. Not working to well. I wish I could take a lunch and take a nap, but I spent two hours with ds this morning running him to ST, so that pretty much cuts out my lunch break. No time to take off from work as I have to save what little I have left for ds appointments.
We have just begun our first round of appeals with the insurance company regarding our ST claims. I have spent hours with them on the phone, because not only are they giving us fits about ST, but now they claim they never received the three other ABA claims I sent by fax on three different occasions, which I have a confirmation messages from all of them. Bunch of bologna in my opinion. So, I had to resend those and got a phone call back saying that they did get them. Watch, I will call them in a few days and they will say they didn't get them. Dealing with them is exhausting in itself.
We are also trying the medicaid route, still awaiting a decision of acceptance on that. Still have a few months before we hear anything on that. And what completely stinks is that we live in one state right accross the river/state line from Louisville, where all of our ds services are coming from. There is crap available in our state, and I have a feeling that medicaid will give us problems with paying for services in another state. Another battle we may have to face as well.
I wish medicaid/insurance would be a little easier on us parents of ASD, I mean just raising a child with ASD in itself is challenging, why make it that much more difficult for us.
I feel like I am stuck between a rock and a hard place and about to fall asleep there.
Been a little slow on updating things! Luke is now responding not only to the question "What is your name?" but now "How old are you?" on a consistent basis. How wonderful!
He started occupational therapy this week and did really well! We also hired a third ABA therapist who started with Luke last week, Miss Heidi. Things are going well so far!
Onto other things. . .
Being a working mom of a special needs child is just completely exhausting. I could literally fall asleep at my desk right now. I don't do coffee, Coke is my main source of caffeine. Not working to well. I wish I could take a lunch and take a nap, but I spent two hours with ds this morning running him to ST, so that pretty much cuts out my lunch break. No time to take off from work as I have to save what little I have left for ds appointments.
We have just begun our first round of appeals with the insurance company regarding our ST claims. I have spent hours with them on the phone, because not only are they giving us fits about ST, but now they claim they never received the three other ABA claims I sent by fax on three different occasions, which I have a confirmation messages from all of them. Bunch of bologna in my opinion. So, I had to resend those and got a phone call back saying that they did get them. Watch, I will call them in a few days and they will say they didn't get them. Dealing with them is exhausting in itself.
We are also trying the medicaid route, still awaiting a decision of acceptance on that. Still have a few months before we hear anything on that. And what completely stinks is that we live in one state right accross the river/state line from Louisville, where all of our ds services are coming from. There is crap available in our state, and I have a feeling that medicaid will give us problems with paying for services in another state. Another battle we may have to face as well.
I wish medicaid/insurance would be a little easier on us parents of ASD, I mean just raising a child with ASD in itself is challenging, why make it that much more difficult for us.
I feel like I am stuck between a rock and a hard place and about to fall asleep there.
Monday, June 15, 2009
Lunch Break
So, this is terrible, but I spend a lot of time running errands, coordinating therapy schedules, talking on the phone with insurance companies, etc, etc while on my lunch break. Sometimes it is hard to remember to eat, or that is I don't want to take out the time too. I really need to work on that. But, I do have some good news to report. Last Friday, I started to tickle Luke, just being playful and I asked him what his name was, and he said "Luke," I stopped and he said "again" and I asked him again what his name was before I would tickle him. The tickling was his reward/reinforcer for responding (alot of what ABA is about). And he said it again, and again and again. Praise God! We randomly asked him all weekend what his name was and he answered correctly. Such a relief to know he now responds to that question. That was a big thing for us!
Last night he also spontaneously told Jonathon that he loved him when he kissed him good night. No prompts, so no echolalia involved. Just a random, "I love you." It was sweet music.
Had a meeting this morning with Luke's program supervisor over his ABA program. His therapist were there too. It went well and the PS was very happy with his progress so far!
We may have landed yet another therapist to work with Luke. When you need up to 30-40 hours a week of therapy and the need for Luke to generalize his behaviors'responses to more than one person, it is almost impossible not to have at least 3 therapists working with an Autistic child at a time. Overwhelming to say the least in trying to coordinate a schedule that works around the other therapist, Luke's naps, or shall I say lack of naps, his OT and ST schedules and of coure Jonathon and I's work schedules. Thank goodness we have the help of family to pitch in. Just praying that God will work out the best schedule for him and us as a family!
I think that is all for now to report. Oh, I forgot I had food in the microwave. Need to run and eat!
Last night he also spontaneously told Jonathon that he loved him when he kissed him good night. No prompts, so no echolalia involved. Just a random, "I love you." It was sweet music.
Had a meeting this morning with Luke's program supervisor over his ABA program. His therapist were there too. It went well and the PS was very happy with his progress so far!
We may have landed yet another therapist to work with Luke. When you need up to 30-40 hours a week of therapy and the need for Luke to generalize his behaviors'responses to more than one person, it is almost impossible not to have at least 3 therapists working with an Autistic child at a time. Overwhelming to say the least in trying to coordinate a schedule that works around the other therapist, Luke's naps, or shall I say lack of naps, his OT and ST schedules and of coure Jonathon and I's work schedules. Thank goodness we have the help of family to pitch in. Just praying that God will work out the best schedule for him and us as a family!
I think that is all for now to report. Oh, I forgot I had food in the microwave. Need to run and eat!
Wednesday, June 3, 2009
Feeling guilty
So we are just about to finish Luke's first whole week of ABA therapy. Going well so far!
He is also in the process of being potty trained. We have been taking him on a regular schedule about every hour. He has been wearing big boy pants every weekend the past month or so and has only had a few #1 accidents, so he is doing well! Today was the first day we sent him to preschool in big boy pants and had zero accidents until about 3:30 pm in the afternoon. He was even telling them when he needed to potty on several occasions. His last hour there he had two #2 accidents. Still haven't quite mastered the number 2 yet. But he is telling us that he has gone, so that is progress!
Apparently this is quite an accomplishment for a child with ASD (Autism Spectrum Disorder). His stage in the potty training process is actually pretty close to age appropriate for boys!
I was very pleased with how well he did today. Then I get his progress report mailed to us from his special needs preschool. He had a lot of lofty goals, many of which are goals to reach within one calender year. He only got to be part of the program for its last 6 weeks of regular school year, so I shouldn't expect him to have made all A's! But, still, seeing a list of all the goals and everything he has yet to do, really was depressing to me. It made me question whether or not we made the right decision to 1) only enroll him 2 days a week in the program when they reccomended 4, and 2) not enroll him in the 3 week summer school program, going on now.
Maybe I will feel different once the ABA stuff starts proving its worth, hopefully by the end of the summer, when we again have to make another decision about special needs preschool. I am praying that is the case. The ABA therapists and our consultant really feel confident that this is going to be a great thing for Luke. And they also think our decision to keep him at his mainstream preschool 3 days a week was also an excellent choice. So, I am trying to keep that in the back of my mind. But, it is just so hard, because every decision you make at this age, could dramatically affect his prognosis and success later in life. Why does this all have to be so stressful?
At this point, I just need to leave it up to God.
He is also in the process of being potty trained. We have been taking him on a regular schedule about every hour. He has been wearing big boy pants every weekend the past month or so and has only had a few #1 accidents, so he is doing well! Today was the first day we sent him to preschool in big boy pants and had zero accidents until about 3:30 pm in the afternoon. He was even telling them when he needed to potty on several occasions. His last hour there he had two #2 accidents. Still haven't quite mastered the number 2 yet. But he is telling us that he has gone, so that is progress!
Apparently this is quite an accomplishment for a child with ASD (Autism Spectrum Disorder). His stage in the potty training process is actually pretty close to age appropriate for boys!
I was very pleased with how well he did today. Then I get his progress report mailed to us from his special needs preschool. He had a lot of lofty goals, many of which are goals to reach within one calender year. He only got to be part of the program for its last 6 weeks of regular school year, so I shouldn't expect him to have made all A's! But, still, seeing a list of all the goals and everything he has yet to do, really was depressing to me. It made me question whether or not we made the right decision to 1) only enroll him 2 days a week in the program when they reccomended 4, and 2) not enroll him in the 3 week summer school program, going on now.
Maybe I will feel different once the ABA stuff starts proving its worth, hopefully by the end of the summer, when we again have to make another decision about special needs preschool. I am praying that is the case. The ABA therapists and our consultant really feel confident that this is going to be a great thing for Luke. And they also think our decision to keep him at his mainstream preschool 3 days a week was also an excellent choice. So, I am trying to keep that in the back of my mind. But, it is just so hard, because every decision you make at this age, could dramatically affect his prognosis and success later in life. Why does this all have to be so stressful?
At this point, I just need to leave it up to God.
Monday, June 1, 2009
Started ABA therapy. . .
So I have been doing about an hour a day of ABA therapy with Luke since last Friday. It isn't really that hard, but it is time consuming and requires lots of patience. He did start his first official day of therapy with one of his two therapist this past Saturday, Miss Johanne. Things went well with her, so we are very excited and pleased!
His other therapist, Miss Lacy started today and is doing therapy with him as I write. She will be going to his preschool to do his therapy! She will incorporate more of the social stuff, since he will be there with his friends.
We did make the difficult decision to not put Luke in the special ed preschool for their 3 week summer program starting this week. This is because he will be meeting with Ms. Johanne during that time. From the people I have spoken with in the ABA, Autism, and medical community, Luke's top two needs are to be exposed to "typical"children and ABA therapy. So UofL preschool and Ms. Johanne/Ms. Lacy became our priority.
We can already see progress since starting. Luke is a fast learner, so I am looking forward to seeing all the milestones he will be meeting!
So today is my birthday, just remembered that a few days ago. Turned 29 today for the 3rd time! We are going to my moms for dinner tonight to celebrate.
Abigail is doing great. She is saying lots of words now, wa wa for water, signing for milk, da for dog, uh oh, dada, and hi. She also just started giving kisses and blows her nose (she has been doing that for several months now, very odd!). She points when she wants something too! It is so reassuring to see her meet all her milestones at an age appropriate time. Not walking quite yet, but close! She is such a blessing to our family and especially to Luke!
His other therapist, Miss Lacy started today and is doing therapy with him as I write. She will be going to his preschool to do his therapy! She will incorporate more of the social stuff, since he will be there with his friends.
We did make the difficult decision to not put Luke in the special ed preschool for their 3 week summer program starting this week. This is because he will be meeting with Ms. Johanne during that time. From the people I have spoken with in the ABA, Autism, and medical community, Luke's top two needs are to be exposed to "typical"children and ABA therapy. So UofL preschool and Ms. Johanne/Ms. Lacy became our priority.
We can already see progress since starting. Luke is a fast learner, so I am looking forward to seeing all the milestones he will be meeting!
So today is my birthday, just remembered that a few days ago. Turned 29 today for the 3rd time! We are going to my moms for dinner tonight to celebrate.
Abigail is doing great. She is saying lots of words now, wa wa for water, signing for milk, da for dog, uh oh, dada, and hi. She also just started giving kisses and blows her nose (she has been doing that for several months now, very odd!). She points when she wants something too! It is so reassuring to see her meet all her milestones at an age appropriate time. Not walking quite yet, but close! She is such a blessing to our family and especially to Luke!
Tuesday, May 26, 2009
So Luke had his 3 yr check up today with his new doctor. It went well. Luke is physically healthy, thank goodness! Jonathon was able to come because he had the day off from work. So he drilled the doctor with lots of questions. It was good though!
I think both of us want to know so bad whether or not Luke will grow up and be able to function on his own. But, that is a million dollar question that can only be answered with time, unfortunately. I just see a lot of sadness, more worrying, I guess in Jonathon and I guess in me too. But, Jonathon has had this dream since his early twenties, that he would have a son that would go onto achieve many things, find a job and support a family, a son to work on the farm with, a son to work on tractors with, a son that will inherit the farm and hopefully produce his own line of Hisey's, to keep it in the family. But the current stats say chances of the later happening are not very good.
But we are a Christian family and believe in the power of prayer. Miracles do happen and we are hoping that Luke exceeds all of our and everyone's expectations!
Bottom line is that Luke is our son and we will take him as God has created him.
On a brighter note, we met with one of Luke's new therapists yesterday. We really liked her and are excited to get started with her next week!
I think both of us want to know so bad whether or not Luke will grow up and be able to function on his own. But, that is a million dollar question that can only be answered with time, unfortunately. I just see a lot of sadness, more worrying, I guess in Jonathon and I guess in me too. But, Jonathon has had this dream since his early twenties, that he would have a son that would go onto achieve many things, find a job and support a family, a son to work on the farm with, a son to work on tractors with, a son that will inherit the farm and hopefully produce his own line of Hisey's, to keep it in the family. But the current stats say chances of the later happening are not very good.
But we are a Christian family and believe in the power of prayer. Miracles do happen and we are hoping that Luke exceeds all of our and everyone's expectations!
Bottom line is that Luke is our son and we will take him as God has created him.
On a brighter note, we met with one of Luke's new therapists yesterday. We really liked her and are excited to get started with her next week!
Friday, May 22, 2009
What a difference a few days makes!
So, on Wednesday we received 2 emails from ABA therapists who had openings! Praise God! We should be able to cover the hours he needs for now with both of them! Prayers were answered!
Just a few things Luke told me last night . . On Thursday's he goes to his special needs preschool and his papa Hisey picks him up and takes him to his farm, where his Aunt Tutu and great-grandma live as well. So he told me the usual, "saw papa, tutu and grandma today." I followed it up with a question, "did tutu fix you food, what did you eat?" He said "ate cheeseburger and fried chicken today." Awesome! Then I asked him what he did at school, he really has never told me that except mentioning the teachers names that he saw. He said, "big red barn today," so I am going to ask his teachers if he read that book in class. This is a lot more detail about his day than he has ever told me before! What small little miracles!
Just a few things Luke told me last night . . On Thursday's he goes to his special needs preschool and his papa Hisey picks him up and takes him to his farm, where his Aunt Tutu and great-grandma live as well. So he told me the usual, "saw papa, tutu and grandma today." I followed it up with a question, "did tutu fix you food, what did you eat?" He said "ate cheeseburger and fried chicken today." Awesome! Then I asked him what he did at school, he really has never told me that except mentioning the teachers names that he saw. He said, "big red barn today," so I am going to ask his teachers if he read that book in class. This is a lot more detail about his day than he has ever told me before! What small little miracles!
Subscribe to:
Posts (Atom)
