A lot has changed!

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!

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.

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!

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.

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!

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!

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 little stressed

I tell you what, right now a good coke and cookies are great therapy for all this stress we are enduring on trying to find Luke an ABA therapist. Apparently they are few and far between.

To tell you the truth, Jonathon, my husband, was so beyond stressed yesterday, I have never quite seem him this way before. He was so down on himself and he went to bed at like 8:30 pm last night. Never does that. He seemed to be in better spirits today though.

I have called or emailed almost every person I can think of or have found through internet research, in trying to find a therapist. I found this excellent in-house preschool program, where all they do is ABA and they are all certified. The problem is, it is in Indy. May be a last resort for us, because that just creates a whole other set of obstacles for us to even get Luke up there.

Did have a glimmer of hope today, when I spoke with a lady who is a developmental therapist in Kentucky. It was only an act of God that we got her name. It started when I had run back over to Luke and Abigail's preschool mid-morning, as I had to bring them a pack of baby wipes, which I had forgot to give them earlier at drop off. Thank goodness, they are like a 2 minute drive from my office. Well, in the parking lot of their daycare, as I was leaving, I saw a lady with a therapy bag and a autism sticker on the back of her car. She was talking on the phone, so I didn't bother her. But, I did call the daycare and had them find out who she was. They got her card for me and I called her. It turns out she knows of two places here LOCAL, that provide ABA therapy.

Again, only this could have been an act of God.

I called the one place and left a message, and she is calling me back with the other places number. I am praying that this works out.

And well, the bills are starting to come in to, and well, we are hoping that medicaid gets back to us very soon, as I am not for sure how we are going to afford this on a regular basis. Thank goodness there are no income guidelines for medicaid for children with disabilities. I don't even know what we would do without that.

I think that is all for now, thank goodness I have also gotten back into running, so those cookies ad cokes don't stick on me!

A little blurb and a poem to share

Okay, so I feel like I am constantly on the phone with therapists, special needs preschool people, nurses, inurance companies, etcetera, trying to get something going for Luke. I feel like things aren't moving fast enough and precious time is just inching away.

The ABA therapist, more like the coordinator of his therapy, says that we should start out slow with Luke, maybe 2 hrs a day with an ABA therapist, that we can contract on our own, and she (the coordinator) would monitor Luke's progress.

So, that is what we are trying to do now-locate an ABA therapist to work with Luke.

I did a little research on the special needs preschools in the county next to ours. It turns out that they have 3 different preschool programs in their county (a little more money flowing into the county, and more populated, I presume). One of them is only for autistic children. Now, that seems perfect, but it depends on what level of the spectrum the others are on. Luke is high functioning and his doctor wants him with typical children as well. So, some thought and prayer must go into that. This would mean we would have to up and sell our home and move to that county, preferably before next school year.

Well, that little blurb ended up being a big blurb, sorry. I did want to share a short story that a kind friend of mine shared with me a while back:


"Welcome to Holland"
By Emily Perl Kingsley

I am often asked to describe the experience of raising a child
with a disability - to try to help people who have not shared that unique
experience to understand it, to imagine how it would feel. It's like this…..
When you're going to have a baby, it's like planning a fabulous vacation
trip-to Italy. You buy a bunch of guidebooks and make your wonderful
vacation plans. The Michelangelo David. The gondolas in Venice. You may
learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your
bags and off you go. Several hours later, the plane lands. The flight attendant
comes in and says, "Welcome to Holland".
"Holland?!?!" you say. "What do you mean, Holland? I signed up for
Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They landed in Holland and
there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting,
filthy place, full of pestilence, famine, and disease. It's just a different place.
So you must go out and buy new guidebooks. And you must learn a
whole new language. And you will meet a whole new group of people you
would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy.
But after you've been there for a while and you catch your breath, you look
around, and you begin to notice that Holland has windmills. Holland has
tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're
all bragging about what a wonderful time they had there. And for the rest of
your life, you will say, "Yes, that's where I was supposed to go. That's what
I had planned."
And the pain of that will never, ever, ever go away, because the loss of
that dream is a very significant loss.
But if you spend your life morning the fact that you didn't get to Italy, you
may never be free to enjoy the very special, the very lovely things... about
Holland.

Take Care,

Courtney

My name is Luke

Sweet music to my ears was the utterance our Luke said to us last night.

It began when I tried a new theory last night, to get him to do something that I asked. I really wasn't expecting much, but it was worth a try.

We were sitting in his bed, as we were preparing for bed time, and he has his barn, two tractors and his truck sitting there. He was playing with them rather joyfully. I decided to pick up his truck. He tried to reach for it out of my hand, but I asked him a question first before I would give it back to him. I asked, "What is your name?" And Luke says, "My name is Luke."

The response "Luke" would have been satisfactory to me, as he has never answered that question before. But, for him to come back with a full sentence, wow, it was sweet music to our ears!

How many ways do I have to tell you mommy?

Oh, so cute of Luke last night. . . I had just put Abigail to sleep and Jonathon and I then took Luke to his room to do his bedtime routine. We read a few books to him and it was lights out. Typically, Jonathon and I alternate laying with him until he goes to sleep. I know this isn't the most healthy thing to do, but many autistic children have a difficult time winding down at night, and this seems to work for us, for now.

So anyway, it was my turn to lay with Luke. But Jonathon stayed just for a little bit and we talked to him. Luke then proceeds to take his hand and try to push me and he says, "go downstairs." So, we thought he was trying to get out of going to bed by telling us he wanted to go downstairs. So, we told him not right now, it is bed time.

He then proceeds to try to push me again and he says, "go to door." Okay, the door was cracked a little, and Luke is very particular about making sure all doors are shut. So we shut the door.

Jonathon then proceeded to say goodnight to him and said that we was going to leave. He said "no, no daddy." So Jonathon stayed a little longer.

I finally got another nudge from Luke and he says to me "get up please." All this time he was wanting me to leave, and daddy to stay! Go downstairs, go to door, all meant that he wanted me to leave. For a split second my feelings were hurt, but then realized, he has never before asked me or anyone to "get up please."

I was excited and happy to hear him say that. No feelings hurt, my baby Luke!

And on a side note, Abigail had her 1 yr checkup yesterday with her and Luke's new pediatrician. This was our first visit to her, and I absolutely loved her. She mainly sees patients with special needs because, she herself, has a 22 year old daughter with high functioning autism. Her practice routinely screens all children at 18 mo and 24 mo for autism. Oh, if we had only known about her sooner! I cannot wait to take Luke to see her at the end of the month for his 3 yr checkup!

Interesting Article and a bit of news to share

I read this article that came out today, very interesting study about Autism:

http://www.cnn.com/2009/HEALTH/05/04/autism.brain.amygdala/index.html


We also got our ABA evaluation report back and she reccomends 35-40 hours a week of this therapy. It is primarily done by the parents and caregivers. A lot of it is incorporated in play and in day to day activities and his special needs preschool also counts as "therapy", but this was quite overhwhelming to hear from two parents who both work full time and trying to raise another child as well. Lots of praying and thought for now.

So what are we doing now.

Luke became eligible for the state preschool program for special needs children. So, we started them there 2 days a week starting in mid-April. He receives speech therapy there. He was eligible for 4 days a week, but being that the school year was ending at the end of May, we needed to maintain his enrollment at his other preschool for the summer time. So, he still attends his regular preschool 3 days a week.

We were unsure how Luke would do at the state program, so this was our "test run" and we plan on re-evaluating at the beggining of the next school year.

We also have Luke seeing a private speech therapist once a week. And we plan on starting Applied Behavioral Analysis (ABA) therapy this June. This is the only effective behavior therapy for autistic children. And by the way, insurance will not cover any of this, and we will be paying out of pocket for every penny. Please be praying and encouraging law makers to make it mandatory to cover this.

Reading the two month old evaluation of Luke by the developmental pediatrician, I sit in awe of how outdated it already is in regards to Luke's abilities. He has blossomed so much since then, even his teachers are amazed at his progress. The ABA therapist who evaluated him last week, commented to us that he is the most verbal and skilled child she has ever seen with an autism diagnosis. She definitely termed him as high functioning or even borderline.

What great news in such a small amount of time!

Things we are working on now are getting Luke to answer "yes/no" questions with the word Yes. He knows the word No, all to well, as many parents of "typical" children have probably experienced as well.

We are working on getting Luke to respond to the questions, "what is your name" and "how old are you." And telling us "I love you." These are things most parents often take for granted.

Last night Luke was so sweet. I was laying in bed with him and he just started to talk about his day. I didn't ask him or prompt him in anyway. He said, "Saw papa today, saw tutu today(his aunt), saw grandma today, saw Kristin today (his state preschool teacher)." I then asked him if he had a milk shake today, and he said, "with a straw, in the chair." What else did you do I asked, and he said "rode in car today."

I about cried, it was so sweet. For those with typical children, appreciate every conversation you have with your children.

Now, I must not forget my sweet Abigail. What a trooper, Luke's younger sister has been. She just had a birthday last weekend and she turned one! With so much focus on her brother Luke, we have had to make an extra effort to make sure she gets the attention and love and care she needs as well. She adores her brother. And, for now, she seems to be developing like a "typical" child.

I give God the greater glory in all of this. Everyday I still wonder, "why us." If I could give anything to make Autism go away, I would. But, there is a purpose to all of this, we will just have to wait and see what that is.

Wow, so this is my first time blogging, so please bare with me here as I learn how to do this. Let me just start by explaining why I have decided to do this. My son Luke, on March 8, 2009, was diagnosed with Autism. This was just a month shy of his 3rd birthday.

I want to keep a journal of sorts here, so we can look back someday and say, "wow, look how far he/we have come."

Luke was born on April 9, 2006. I had a perfectly healthy pregnancy and delivery. He was our ray of sunshine, after suffering two previous miscarriages. We were first time parents, so we spoiled him rotten, maybe a little too much. I am proud to say that I was able to breastfeed him for 12 months, with only one supplement bottle a formula a day from 6 mo-12 mo.

At around 6 months of age we noticed that Luke was not sitting up on his own like he probably should have at that age. He finally met that milestone at 7 months. But, by 9 months, he was not crawling like he should have, but the doctor told us he was just a big baby, and would be delayed. But, we sought out intervention anyway through our state Early Intervention program. He recieved physical therapy, and was able to finally crawl at 12 months and walk at 16 months.

At 16 months, we enrolled Luke at daycare/preschool for the first time. Thanks to daddy's work schedule and a dear friend of ours, we were able to keep him out of daycare until then. This is when we first starting seeing signs that something was not quite right.

He did not respond to his name and did not like playing with other children. He wanted to play with his cars all the time. He had a hard time following directions. He did not talk as much as the other children and his language skills were lagging somewhat. We had his hearing checked and he was fine. However, again, we were just told to wait and see and that he was just a little behind.

Luke had this particular behavior, that we thought was rather cute for a while, he loved to flap his arms when he got excited. But, as we got to thinking, combining this "cute" behavior with everything else we had observed, the word autism crossed our minds. But, how could such a happy, smiling, cuddly and loving child have autism. In my mind, I always pictured autistic children as being non-loving, no-personality children.

We put off getting him evaluated for a while, hoping things would magically get better. We changed his preschool over to my work preschool program, which was the best move we could have ever made. He has incredible teachers that Luke adores so much. But, his teachers started to make comments to us about his behavior and they were concerned. I watched Luke play at school through the observation window and noticed that Luke was different than the other children. So, we bit the bullet and got him evaluated.