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.