Saturday, October 30, 2010

The never ending challenge of parenting

Lately I have felt that I have not been doing enough for my kids in the development of their character and spiritual life. I asked my daughter some questions about Bible stories the other day and I was actually shocked at how little she knew. Not just stories from the Bible, but I really started thinking about other areas that all four of my kids could use a little polishing.

I have been doing a lot of self examination work in a few different on line programs and it seems that one of the biggest areas that I have been studying is "selfishness." Selfishness according to everything I am learning is the leading cause (and mainly root cause) of all conflicts....whether marital discord, conflict at work, or conflict in the family. My husband used to suggest that I could work on my own selfishness and I brushed him off for years. Mainly I used the "I was an only child so I just seem a little more selfish than I really am" excuse.

After much reflection though I realize that I had plenty of areas that fall within selfishness to work on. As I have been reflecting on this, I can clearly see areas that my kids need work. I pulled a book off the shelf called "The Book of Virtues" and started working with the kids and reading stories from this book daily. We actually started with the chapter called "Responsibility" and I can already see some major improvements.

Parenting is a tough job....but it is one of the best ever. On days that I have had the normal frustration from "refereeing" while my kids "played" with each other; I have often wished for them to get along better, share better, and all those other things on the laundry list of what we would like to see in our children's behavior. I have found that by being consistent and tough at times that I am seeing much better results.

A little self actualization really went along way too. I see that as I make changes that it is easier to shape my kid's behavior too. There are an amazing wealth of resources on the internet too for shaping stronger families and working on teaching specific virtues to kids like compassion, honesty, patience and a host of other qualities.

If your wanting to make some changes in your family, start with prayer, then find some resources for self improvement and also family building. Not only should you see great results with your children; I bet you will start to feel much more positive about life too! I know I sure have.

Friday, October 8, 2010

October has arrived!

Patrick has learned to ride his bike!!! It is still with his training wheels but he has learned the concept of "pushing" the petals. We were all very excited over this new accomplishment.
This perfect fall weather has been heaven sent for the kids to play outside. I bought them this heavy duty bounce castle off of Ebay. I decided that I would get my money's worth real quick just in the next few birthdays. They love it!
This is for all the home schoolers, parents of special needs kids, and just anyone dealing with a typically developing child as well. I think I am going through one of those times with setting limits with the kids where you start thinking "Is it just me or I wonder if all parents go through this?" It seems like manners, back talk, and "first time told" as Ms. Joni calls it have all kind of swirled together into a little funnel cloud. HA.
I am just trying the basic strategy of first time told and complete follow through. My daughter who is 8 sometimes likes to think she is 28. She loves to interrupt while I am on the phone or interject comments into adult conversation. Her Grammy and I have both decided this week that enough is enough. We commented today that we think she is doing a "little bit" better but we have a ways to go.
We are really hoping to be in our new house soon. That will help us so much with routine and setting limits with each child. I think the one thing the kids and I are looking forward to most is decorating for Halloween. We found a great yard sale with a whole treasure cache of super cool Halloween figures. Needless to say we have big plans. Little Bob is having a birthday party next weekend so we are hoping to be decorated and ready to go for his big day. We still have a lot to do so please keep us in your prayers.
Moms....some "me" time is a must. I think that it is important to carve out this time for yourself. Not just physical time for a work out or fun time for lunch with the girls but I am deciding that spiritual "me" time might be one of the most important things that we need to make time for. I really neglected this part of my life for the last few years; not to say I didn't make it into church most Sundays at a dead run and then rush home but I mean "real" quality spiritual time.
I am in the middle of a great book on this topic. More later!

Wednesday, September 22, 2010

September Progress

Hi everyone,

All of the kids are just having a great time and doing so well together. School has started and gotten into full swing. Patrick is doing great in second grade.

This picture was taken a few years ago. It is still one of my very favorite ones. They have grown up so much since then.

Patrick has been doing great. We noticed that he still is very verbal from his stem cell treatment that he had in June. Packy cracked me up a few weeks ago. He has been singing all of his old favorite songs from when he was little and it is so cute!! We are looking at going to Panama again soon for a booster of stem cells for Patrick. We are currently thinking about mid-October.

We haven't set anything in stone yet. The kids and I are moving into our new house on October 11 so we will have to see how all of that is going. Although we are praying for a smooth transition. Patrick has a new bunk bed that he and Bob will be sharing and they just love it. Since he likes trains again, I got him decorations and bedding with trains, so far he seems to think it is all pretty cool.

His Dr, Scott Smith, has just moved from Florida to a new practice in New Jersey. I just spoke with him a few days ago and he seems encouraged by the results from Patrick's stem cells as well.
Second grade is going really well. Patrick is still doing great with his spelling, writing and language. Math is still good; maybe a few of the same small speed bumps on introducing some new concepts the way this current book shows things but Joni is always able to work out any speed bumps that we come across. The best thing that has happened lately involves his reading. Patrick has never liked the Abeka Curriculum readers that I have always ordered. Joni switched him into a different age appropriate book and now he is reading without tears. :) Which of course we all like!
I am just so thrilled to see Packy so happy!

Saturday, August 14, 2010

Update on Patrick's Progress

Patrick is still doing really well after his procedure with the stem cells in June. He just finished a round of Septra for some bacterial issues and Diflucan for yeast in his stomach. These are issues that he has battled with for years and when they both flare up it is tough on him. The round of both meds has helped him considerably though.

He is doing great art work and is very dialed into his school work too. Patrick and his brother Robert have both started Second grade together. Patrick is in the grade level that he should be in and so far all is going really well.

Joni and I took him on an outing yesterday with his two brothers and two other girls. Patrick did great! He swam with the kids and had a big time. At dinner, the first restaurant we went to was so busy that we had to leave and go to a second choice. Although really hungry, Patrick handled this little "speed bump" great. He got a little upset momentarily when we went back outside to get into the car but he quickly understood that we were going right down the road to another place.

I would still say at this point that the stem cells have been worthwhile treatment. I have a follow up in about a week or so with the Dr's at the clinic and at that time we will discuss if he needs a second booster of the stem cells. I am guessing that we will do this.

As far as life in general, this summer just sped by. I got back from Las Vegas and the last 4 weeks have sped by. We all started school last Monday at our home school. The week was good and by Friday I think we were getting settled into a new routine. Robert and Joe both started Upward Football today and both are very excited over that. Rosemary started gymnastics with both of her cousins this past week too. All the kids seem to be really excited over their new activities and routines.

I will keep everyone posted on Patrick's progress and any new updates!

Wednesday, July 28, 2010

Update on Patrick's Progress

Hi everyone! I know the big question has been what type of progress are we still seeing in Patrick. Well I was gone for a week to Las Vegas and when I got home there was a ton of his artwork saved for me to look at.

He has been drawing and coloring all kinds of things....a lot of trains and house/barn scenes. He is very detailed with them and is so cute when he explains them too. I have to say that he is still doing very good. I have a consult with his Dr tomorrow so I will be able to discuss a few items with him.

Patrick is still stimmy and has been eating paper, shaving cream etc. It appears that the bacteria in his gut is off balance again but I guess we will see. :) I will give a very detailed update after the phone consult tomorrow.

I am having people from all over contact me regarding the stem cell treatment. I hope that our journey will benefit others who are starting on their own. Patrick is doing fantastic!

Hard to believe that school is starting soon. Patrick will be going into the Second Grade right as scheduled. We are very proud of him!

Thursday, July 15, 2010

Patrick is doing great and Life is good

Hi everyone!

Patrick just keeps on doing better each day. He is still ready to go back on "vacation" though. He asks me about going back to Panama daily. :) I have been speaking to three families who are heading to Panama in August; two are going for autism treatment.
This first pic shows him outside riding his scooter. They had fun that day and to our surprise we took Joey's training wheels off and he started riding like a pro on his little bike! You can see how proud he is by that big smile.

I am getting ready to head off for the Mrs. United States pageant in a few days. The kids are excited. They like "helping" me pack. HA. My platform as always is Autism Awareness...I got some neat things to take including new pins and notepads with a great autism logo on them.

When I return, Rosemary will then compete at the Preteen Kentucky National American Miss where her platform is also autism.

When I started out doing pageants in 2006, autism was a tough platform because I had to explain so much to almost everyone that asked about it. Now, in 2010, with 1 in 91 children now being diagnosed with autism, I find more people with questions about it but pretty much everyone is familiar with it. I judged a teen pageant a few weeks ago and I think out of about 14 girls there were two with autism as a platform. It certainly speaks as to what an "epidemic" it has became.

I have had so many emails and calls from people with questions about the Panama Clinic. Their website is Go ahead and look them up and then I am working on typing up some facts sheets about our experience and just details on navigating Panama. We are so glad we went.

I will update everyone when I return next week on how Patrick is progressing. Have a wonderful week!

Saturday, July 10, 2010

Friday....Seeing More Improvement

What a great day here. Patrick is doing extremely well. Here is a pic of him playing with his brothers today. I brought in their large bin of train toys and tracks. Patrick and Bobby set up the entire living room in tracks and houses. They played for hours.

Patrick is wearing the yellow shirt with Bob and Joe in the back ground. His behavior therapist said today that she can see significant gains in his attention span and comprehension. She took him to lunch at Olive Garden. One of my friends sent me a message tonight saying she saw him at Olive Garden and that he was so well behaved.

He literally played with trains until bedtime. He also had a new babysitter tonight and she said that he was perfect and he talked quite a bit.

I took Bobby and Joe to PIR to watch their dad race tonight. We arrived just in time to see him win his heat race. They were extremely excited by that. I have a great picture of them sitting on the new can see the new autism ribbons we had made for both cars and the car trailer.
They look great...very visible. No racing for me this week....I want to keep myself in once piece before Mrs. United States next week. Although I promised Joe and Bobby that I would race the very weekend that I get home.

Above you can see Joey showing off his "big grin." He had a great time at the races. I am not sure what we are up to for tomorrow but Patrick's first week back home from Panama has been great! Stay tuned......

Wednesday, July 7, 2010

Home Again

It has taken me a few days to update everyone on Patrick's trip back home. He actually did not want to leave Panama. He even told me last night that he wants to go back and he pointed his hand where his IV was to say "little sticks okay." Obviously he enjoyed it so much there that he thinks it was worth the "little stick" from the IV. I thought that was cute.

He is still talking a lot. He was up this morning playing with his toys and pretend talking with them. He is still really "stimmy" when he gets excited. He has gotten in to a little bit of everything since arriving home on Sunday. Last night he got out some green paint and proceeded to paint one of his toy trains green to match the real train he rode in Panama.

Packy was thrilled last night to see scenes shot in Panama on a really old Herbie the Love Bug movie. He saw the canal, the ships and got really excited to see the Canal Railway train in the background.

It could take up to a month before we see more results from his treatment. I have several friends whose children have had this treatment and the majority seem to feel that their children saw the most improvements in the one to two month range. The couple children that made early gains seemed to see them with bowel issues and sleep issues. Luckily, for Patrick, he overcame his bowel issues several years ago and we don't have the sleep problems either.

So far, so good. He is doing great. I will try to get a copy of the WPSD-Channel 6 interview to post on here. I didn't get to see the interview because we were in Panama at the time but everyone tells me it is really informative as to autism and the stem cell treatment overall.

I will get some trip pictures posted soon. The kids got in my suitcase and used the camera the night before I left. So lo and behold, I had no camera when I arrived! We bought a disposable one and I need to get the pics transferred to disc so I can upload. I posted a pic above that I took a few hours ago. He was sitting at his computer watching "Brainy Baby Spanish" on You Tube. I noticed that as the picture showed the action and the Spanish word, a voice over would say the word in Spanish as well. As I watched him, the screen showed "Gracias" and Patrick said "Thank You." He also was saying the English version of the colors that were being shown. I have not worked with him on Spanish, last week would have been his first intro to it. I will keep everyone posted. Thanks for all your prayers and emails!

Friday, July 2, 2010

Panama City, Panama Day 6 Last Treatment

Today went great here. We went to the clinic earlier today. We met another family today who are here from the states. The majority of people we have met seem to be here for MS or for a viral or autoimmune type illness.

The little girl from Los Angeles had an allergic reaction to the adhesive on the medical tape from where her IV was inserted. Her hand was red and swollen. It looked very itchy. Her parents said she was feeling much better today but her hand still looked bad.

Patrick has had NO TYPE of negative reaction at all. Today for his final infusion it took about the same amount of time. I also got all of his lab copies from Dr Rodriguez. They ran labs on him when they drew the initial blood. He also gave me the certificate from the lab with the exact amounts of what exactly Patrick received. He received over 5 million cells of the ones to target his brain/oxygen flow and then over 2 million of the type to target his immune system. He received an additional 5 million cells that are not trained to seek a specify site but are looking for weak areas where they can "go to work." I have the exact numbers and exact cell type names, I will post tomorrow. I have already packed it all in a suitcase tonight.

We are noticing even more talking. If he isn't talking to us, then he is talking to himself while playing or singing. He is also drawing pictures that are much more detailed and also telling us about them in greater detail. We took him to the Gamboa Rain Forest today. We took a boat ride down the canal and he saw some monkeys and a crocodile. I asked him about the trip and he told me that he "took a jungle cruise" and that he saw "the rain forest" and "two monkeys and a toucan." I thought this was interesting because I had never used the words "jungle cruise" so he thought that up himself and he told me it was like "Disneyworld." I think they do have a ride there called Jungle Cruise or something like that so maybe that is what he is referring to.

He doesn't want to come home tomorrow. He has asked us to go back to the train station all day today. He loved the train ride and he has a big time every day in the swimming pool.

Some families come back for booster infusions within about six months. We spoke with Dr Rodriguez today and he said that we will touch base on progress and it is too soon to know if we will want to come back or not.

It has been nice to see the other patients and get to know their stories. It seems that for MS this is working really well. We also talked to a few people who has their diabetes and asthma almost cured too. Stem Cell Institute has taken great care of us too. They gave us a cell phone where we could contact their staff or the Dr's at any time. Luckily we never needed to call them for any type of emergency or problem. It was nice too that they picked us up at the air port and they drive us back and forth from all appointments too. That has made things very easy.

Of course for all the diseases we know that stem cells will "cure;" there are no promises for autism. Each child with autism is so different that I think it is hard to know if every child will have the same response. We do know several families who have children that have improved greatly with this treatment.

One week ago I did an ATEC test from the Autism Research Institute to get a baseline score for Patrick before the treatment. On a scale of 0 to 100, Patrick scored a 37. On this test the lower the score the less severe the symptoms of autism are. The test is sectioned into areas of communication, social behavior, cognition and health issues. Today I did the test again (answering all the same questions) and his score was a 23. His dad and I are not "eternal optimists" so I think we are both being exceptionally "cautiously optimistic" about the whole procedure. I was trying to be as cautious as possible when answering the questions so I feel that the 23 is pretty solid.

We leave in the morning for Kentucky. I will keep everyone posted on his progress.

Thursday, July 1, 2010

Panama City, Panama Day 5 Treatment Update

Patrick received his third stem cell injection today. This one was even quicker for him than previous days. We have been VERY impressed with the skill of the Dr's inserting the IV into his arm. They get it in quick, and always on the first try. No digging or probing for the vein either. Which is a huge relief for Patrick!

He has been used to having his vein missed in the past with multiple attempts or a lot of probing around. This has been going so well for him. Tomorrow is his last stem cell infusion before we fly home on Saturday.

We are both noticing increased speech. In fact, Patrick is talking pretty much non-stop. He is also singing kids songs pretty much non stop too. He was so excited on the train ride! He just loved it. It was really neat. We had the driver take us to the city of Colon' on the Caribbean side of the country. We rode the train along the entire Panama Canal. This went through a lot of rain forest and we also saw boats locking through the Mira Flores locks. The ships going past our hotel are huge!!!

Patrick is still very "stimmy" but he is also very excited by all we are doing here too. Between swimming, the train and the playground at the hotel he is having a great time. I think he has decided the few minutes at the Dr office is worth the rest of his trip! Luckily we have a TGI Fridays here at the hotel; we have eaten every meal but one here. Of course, Patrick thinks it is great because he eats "grilled chicken and fries." However, Pat and I have decided that we will probably never eat at one again after this week. HA.

The little girl that is receiving stem cells this week that is also staying at our same hotel got sick yesterday. Her dad said they had a long night. One of the occasional side effects we read about is flu like type symptoms. Patrick has been A-OK. In fact, his appetite has been great and his energy level has been high. We will run new labs when we get home to compare with a set we had taken two days before we left.

We have an earlier appointment tomorrow then Luis, our driver, is going to take us up to the Gamboa Rain forest and the Red Frog area (each about an hour from the city). We really like it here....if our other kids and our dogs were here I think we would stay longer. Until tomorrow......

Panama Day 5 "Interesting Observations"

We have a big day planned after Patrick's treatment this afternoon. I am going on a tour of the Stem Cell Research lab this morning. I had a quick minute to type a few observations about the country and Panama City.

We are staying on the outskirts of the city near the Canal. It is beautiful here. The weather is pretty much the same year round....80's day time, 70's night time. What a climate! The trees and flowers are beautiful..vibrant green, colorful flowers. The animals native to the country are boa's, pit vipers, pumas, jaguars, toucans, iguanas, armadillos, to just name a few. We are across the river from a dense rain forest and there are crocodiles in the river. Interesting huh?

Other than the traffic in the heart of the city, everything here is laid back. Spanish is the primary language but there are a lot of pockets of small languages from islanders in some of the small regions. There is a large American presence here with people who have moved here for climate, retirement or to work in the very stimulant economy.

When I told people we were coming to a hospital and clinic in Panama they acted like I was going to a third world country without running water. Ha. :) Well my husband and I have both been shocked at the construction going on. We both commented that we have not seen construction of this magnitude going on in the US for years. I bet there are at least 20+ high rise buildings going up at once. The city skyline is amazing....think Miami etc. Several local Panamanians we have met have compared Panama City with Miami.

There are very poor sections....same as our cities but we probably plan more to "hide" these areas whereas here they are right next to exclusive condominiums or shopping areas. UNESCO came in and made the old city a protected area and now there is major re-hab and projects going on to restore these mansions and churches. We were in a church yesterday that was built in the 1600's and the altar was solid gold from floor to ceiling. The story is when the Spanish took over back then the villagers painted the gold black so it wouldn't be carted off back to Spain.

The old city reminds me of New Orleans...balconies, lattice work, beautiful wrought iron. Today we are taking the train that runs the length of the Panama Canal. We have a driver taking us to Colon' (we are told this is a dangerous "Caribbean side city") and then we will board the train for the hour ride back to the Pacific side.

One thing we did not expect is the vast amount of luxury cars and luxury goods shops. One of the main malls the "Multi Centro" has as many (if not more) luxury shops then you would see on Worth Avenue or Rodeo Drive. This is just one mall too. We walked in and I was shocked to see Chanel, Jimmy Choo, LV, D & G, Salvatore Feragammo, Tiffany, Armani, and this it just to name a few. What really surprised us though was how BUSY the mall was and that people were "shopping." I would say 95% were Panamanians and money appeared to be flowing freely. The designer Carolina Herrera had just made a stop in her shop to deliver her "newest handbag" personally. I found all this interesting to view as an outsider so to speak.

The hotels seem to be springing up, a new Hilton is under construction right down the road and the casino business seems to be thriving as well. We noticed that police presence seems to be increased right now too. The President of Taiwan and (I think Spain) are both here visiting Panama's President.

Very stimulated economy, very modern city. I will post more on the stem cells tonight.

Wednesday, June 30, 2010

Panama City, Panama Day 4

Today has been great. Patrick received his second stem cell infusion today. He did great. It went even more smoothly than yesterday if that was possible. We have met a lot of other people who are down here receiving treatments. We met a lady with MS who has been here for two weeks but is going through a month long therapy. She is already doing better.

We met a man who is in his 60's that has MS. He is doing a lot better. He said that he is now able to change his clothing without being held by another person. He has been here for a week. We met a retired police man from New York who has brought his thirty year old son. His son has a rare type of viral infection (I had not ever heard of it) but they knew three others from the support group they attend that had the treatment. One recovered significantly and the other two not as much.

We have met two other children with autism that are here this week. Patrick is doing great. I am not sure when to start expecting results. Friends whose son has done great said it takes about a month but another family saw results in a week or two. I think it varies per person.

I have to say that Patrick is talking A LOT. He got in our bed last night and was singing his "Sunday school songs." One thing I did notice this morning is that he was making up a story about two of the animals in his book. He told me the "friends" a dog and frog were going on a trip together. This was interesting because he typically is not real imaginative about making up stories. In fact, this would be a first.

He has enjoyed swimming all day. Tomorrow we are taking a train ride to Colon' down the Panama Canal after he sees the doctor. I will keep everyone posted.

Tuesday, June 29, 2010

Panama City Panama, Day 3

Patrick received his first stem cell infusion at 2pm today. He did just great and the whole infusion probably took less than ten minutes. He will get three more this week. Patrick sat in his dad's lap and was a real trooper while the nurse gave him the "stick."

I promised him that after he was finished that we would go the mall. We ended up at the one by Punta Pacifica Hospital (which was very nice). He rode a train that takes kids all around the mall and he picked out two books.

He is doing great tonight. We did not expect any side effects to begin with so he is basically just swimming and playing right now like he has been since we arrived. We are staying at the Canal Country Inn and Suites. Another great part of this hotel is that a TGI Fridays is connected to it. Packy has been eating his favorite meal of grilled chicken and fries there two times daily. Ha.

He will have his second IV tomorrow at 2 PM. I will keep everyone posted.

Monday, June 28, 2010

Panama City, Panama Day 2

We started out our morning early. The Stem Cell Institute sent a driver for us at 7:45 AM (they are on the same time as we are at home). After meeting Melisa and Vivienne at the clinic and reviewing all of Patrick's paperwork; we then sat down with Dr. Jorge Paz Rodriguez. He is very nice.

Scott Smith met him last month in Miami where the Dr was speaking. I have only heard good things about him and so far he has impressed us as well. Completely down to earth, etc. We did a review of Patrick's medical chart before we went over to the Punta Pacifica Hospital where Patrick had to have his blood drawn.

The hospital is very nice, it is an affiliate of John Hopkins University. It is very typical to what you expect from any hospital you walk into back home. Patrick did have to do a general anesthesia so they could draw all the blood for the lab. This was probably ten tubes; then they went ahead and left the iv catheter in his hand. Upon waking, he was not a happy camper with his entire hand and fingers taped up.

Dr. Rodriguez himself went ahead and untaped Patricks hand and removed the catheter back over at his office. He said that since Patrick has experience with sitting for IV's that we will just do that each day. He said that the actual stem cell injection will only take about 5 to 10 minutes. This also allows Patrick to swim without any problems with getting the catheter area wet. He is actually swimming right now as I sit by the pool and type this.

Today is a typical Panamanian weather day: hot, sunny and humid. My type of climate. HA. We met two other families that are here with their small children with autism and also an older man from the states that is here for a procedure as well.

I found it interesting that I filled out and signed the same type paperwork as you would in the states before going through any type of procedure. Basically as far as health care goes I have been unable to see any difference in practices other than most of the nurses are not bi-lingual.

Tomorrow Patrick will have his first stem cell transfusion. Our appointment is at 2 PM. Basically the worst part of it for him is over with the large blood draw that occurred today.
So far so good!

Sunday, June 27, 2010

Panama City, Panama Day 1

We arrived late last night to some warm and humid weather, much like at home. Patrick started out his morning swimming but the rain settled in after lunch and has stayed all evening. We have our first appointment in the morning at the hospital here and with the stem cell clinic. They will examine Pack at the clinic then we will go to the hospital to have his blood drawn and the IV port inserted. He will receive the stem cells for the four days following.

He is happy to be here. He loved the plane ride and he likes hotels. He is living it up really good tonight, but I keep explaining that we do a see a Dr in the morning. So far, so good.

Sunday, June 20, 2010

Action Packed weekend

Hi everyone! What a great weekend here. I have some great pics to share. I had a great time judging the McCracken County Fair pageant with sisters Jessica and Chelsie Harrison. Those two beautiful gals have been competing (and winning) pageants all over since they were both tiny.

We had a great time talking to the candidates for queen. What a beautiful and talented group of young ladies.

My daughter Rosemary spent Saturday morning over at the Dixieland Dolls and Darlings pageant. She was excited to win Grand Supreme.

I had to miss watching her since our FEAT (Families for Effective Autism Treatment) group hosted a national author and speaker, Dr. Stephen Shore. What a wonderful person! Dr. Shore was diagnosed with autism as a toddler and at the age of 4, it was suggested his mother put him in an institution. He is now married, and a professor at Adelphi University in New York.

The turn out was great and the story ended up on the front page of the Paducah Sun newspaper today. I think we were able to get a positive message out and help educate others in our area who needed more information on autism and aspbergers syndrome.

Busy week coming up. We leave for Central America on Saturday morning.

Friday, June 18, 2010

Stephen Shore, Beauty Queens and Toy Story 3

Hi everyone!

WOW what a weekend. I had the pleasure of picking up Dr. Stephen Shore at the airport today. Our FEAT (Families for Effective Autism Treatment) group is hosting him as a guest speaker tomorrow. He was interviewed by the newspaper tonight. Tomorrow he will be speaking at the Easter Seals West Kentucky Child Development Center in Paducah. He is a very nice man. Very impressive. At the age of 4, it was suggested to his mother that she put him in an institution. Now, he has a Ph.D in Special Education and he helps other children who are on the autism spectrum. We are excited to have him here.

Speaking of kids, I know that all four of mine are anxiously awaiting Toy Story 3. The boys are all so excited to see it this weekend!!!!
Rosemary is excited because she is competing in the DixieLand Dolls and Darlings Pageant in the morning. After the Stephen Shore program I will hurry over to the Ritz Hotel to catch the end of her pageant.

It is a busy crown and banner day because after the pageant (the first one) then Rose and I are off to the McCracken County Fair pageant. I am judging again this year and Rose will be assisting Suzy by greeting people and handing out programs. Rose is excited to wear her Regional NES crown and banner (I think she likes it because it is so big). :) I love judging this pageant. There is always such a nice group of girls and that makes it a lot of fun.

I had to re-post this pic of Marshall County Fair judging. We had a great time. Joni (the lady on the left) and I both traveled over together. We had dinner and enjoyed a nice was a big pageant....they had the Little Miss group and then went all the way up to the Miss.
I can't wait to update tomorrow night with pics of all events. I get to show off that beautiful Mrs. KY US sure gets a lot of comments. Everyone thinks it is beautiful...and I love it too because it is so comfortable. :) Stay tuned!

Wednesday, June 16, 2010

Panama Trip Update

Hi everyone, I have had a lot of emails about our upcoming trip to Panama for Patrick's stem cells. We fly out one week from this Saturday. We will be in Panama for one week, flying home the next Saturday. Patrick is very excited!!! He keeps handing me the Panama vacation guide book and telling me that "Patrick wants to go to Panama."

I had to include a pic from our recent trip to Holiday World. It took me three tries to get a pic where they were all looking, by the third try Bob had quit smiling at me. This was right before we headed down to the water park side section of the park to cool off so I also think they were getting fairly warm in the little train.

Patrick's Dr is sending me a kit to get some new labs done before we leave so we can have some comparisons that are current for when we get back from Panama. I am also completing an autism behavior assessment on line so we can re-do it about one month when we get back home. It will be interesting to compare the results! Thank you for your prayers for our safe trip and a successful procedure for Packy.

Tuesday, June 15, 2010

My favorite time of the year!

"Pageant" and "Racing" season is upon us. I think this is one of my favorite times of the year. June is a busy month for my family. My husband has a couple of races scheduled and he is twisting my arm to get behind the wheel of the #13 car! Which of course I am definitely up for!

Rosemary and I have been making some fun appearances together. She is Midwest NES Little Miss and she LOVES wearing her own crown and joining me. We had a ball at the Indiana Railway Museum. Our entire family got to take an old fashioned train ride with a couple hundred fourth graders! WOW. :) Despite the heat we had a ball at the Superman Festival last weekend. The boys wore their own super hero costumes until the heat was too much. Of course we got to meet Superman....again. This year they decided to be Bat Girl, baby Spiderman, Spider Boy, and Batman. Of course, dad and mom pulled out our Superman and Supergirl costumes for the occasion.

Our family had a great time promoting Autism Awareness at Holiday World. Above is a pic of Pat and I in our autism T's on the kiddy train. Luckily, I have started teaching Rose how to use the camera.....we have way too many pics of dad with the kids or mom with the kids. We decided it was time to get more of mom and dad having fun too!

We have our Panama trip coming up at the end of the month. This weekend will be a busy one too. I have Stephen Shore and the FEAT group on Saturday morning and then I get to be a judge at the McCracken County Fair pageant. This is one of my favorite pageants to judge. We always have so much fun here. I received so many positive comments about my appearance list that I keep on the All American blog that I decided to go ahead and post it on here as well. I have more planned for July and I will keep you posted.
Have a wonderful day!

Wednesday, May 19, 2010

Thursday Update

We are confirmed now into Panama City, Panama on June 25. Patrick has his stem cell treatment during the week and we fly home on Saturday, July 3. Keep Pack in your prayers!

Wet weather has postponed the majority of Pat's racing season this year. He has raced one time this year. He is gearing up for racing this weekend. I was thinking about getting the ole' #13 car out but I am helping Joni with wedding prep on Friday evening. Wes and Nidia are getting married at our house on Saturday. The hopeful couple is praying for sunshine! :)

I just finished updating and re-vamping my other blog, the one I use for pageants. I have posted the information for that blog to the left of my postings. I am working on adding some autism related reading lists and a business reading list as well.

Thursday, May 6, 2010

Moving right along

Hi all.

Well I have finally got the room booked and got the airline tickets all planned out for our stem cell trip. We ended up booking into the sister clinic in Panama City, Panama. We had initially planned on going to the Costa Rica clinic but decided to go to Panama. They are ran by the same doctors. We are leaving here on June 25th and we will be back on July 3.

I spoke with Patrick's Florida Dr., Scott Smith, today and he said that he had the pleasure of meeting the clinic director and several of the doctors at the University of Miami last week. He has three other kids that are going down in June from his practice.

I have had a lot of messages from friends and family who got so worried over the 60 Minutes special on stem cells. I think that the national stem cell clearinghouse said it best, "Out of all the quality stem cell clinics that operate in the world, 60 Minutes would dig around to find the worst charlatan that they possibly could." I thought this was a very fair statement.

I just finished reading a really good book written by the dad of a boy that received stem cells from the same clinic Patrick will be going to. You can find this book on Amazon, it is Out of the Darkness by Daniel Faiella.

For more information on the Stem Cell Institute check out their website at

Monday, April 19, 2010

Why Stem Cells?

I thought I would take a brief moment to talk about why I chose to go ahead with the stem cell treatment for Patrick right now. Stem Cells are one of those topics that in the U. S., our government has managed to keep the public guessing about. If not guessing, there is such a plethora of mis-information floating around out there that it is hard to adequately describe what we are doing to each and every person I speak with.

Every time I was pregnant with one of my children, I was given brochures on banking cord blood. My ob-gyn was the person who first told me about the importance of saving a child's cord blood because it is full of "stem cells." She gave me brochures from a couple different companies that explained "stem cells" and "master cells of the body" very simply and thoroughly. The brochures explained how I could save this precious cord blood in the event of my child being diagnosed with a disease or having some sort of exposure that caused irreversible harm, that I could probably use the stem cells to heal him.

By the time I had child #4 I saved his cord blood at one of the "cord blood banks."

That also started me thinking.....if this would work for a child who had his stem cells saved, perhaps Patrick could benefit from his younger brothers Joe's stem cells. This was in 2005 when I started trying to find the answer to this question.

I eventually stumbled on a great paper by a Dr in California. This Dr was a bit older and no longer practicing, . The paper was very obscure....not sure how I even found it. I would sit around just googling different variations of stem cells and topics related to children and autism. I printed out this entire 40 plus page paper and read it over and over. I eventually ended up putting it in one of my files and placing it on the back burner.

Right around the time I had Joey (my fourth) in 2005, I ended up having a conversation with the late Dr Rimland regarding stem cells and this wonderful paper I had found. In 2005, I was not even able to google this doctor or find the paper. Luckily, I had kept a copy. It must have been fate, but this man turned out to be a personal friend of Dr. Rimland's. I ended up speaking to him on the phone. By this time he was officially retired and not even researching any longer but he felt that the stem cells were still a really solid option.

I have touched base with him a few times over the years. I vacillated around back and forth about when the right time to actually do the stem cells for Patrick would be. Would it be when he was really acting out, his yeast issues in his gut were flared up and we were seeing a lot of stimminess? Or when he was acting much better, his yeast and bacteria were down, his overall general health in good shape? Would that indeed be the time?

In 2008 I had studied several clinics and in conjunction with one of our main autism specialists in Florida, had a couple of clinics that were highly recommended. I was extremely close to going ahead with the procedure then. I think at the time, Patrick was still heavily chelating, so I decided that we would get through all of that and then let things settle out. The thinking by everyone on the "team" was that we would see where the metals were after we finished the IV chelation. It was a hard decision at the time, but now I am very glad we waited.

At that time we were still looking at the Costa Rica clinic. It was funny, I remember that during the planning for our 2008 local FEAT walk that several of my friends were helping put together goody bags at the chairpersons house and she was running me down for thinking about taking Patrick to Costa Rica for medical work. Several of the other moms told me and mentioned her issues that she voiced regarding Costa Rica. I thought it was comical at the time. We had just returned from an extended visit to Central America; specifically Honduras, Belize, Costa Rica, and Guatemala.

I think that many Americans don't realize the extend of solid medical procedures that are being performed in other countries. Are there charlatans out there? Why, yes. Snake oil Salesmen? Emphatically yes! But there are good doctors and good procedures. By working with my doctors in the US I have been able to find good clinics with a medical director and doctors who have graduated from Harvard Medical School. All of the doctors have been educated in the US and most are from the US. The head of the clinic is speaking at a medical symposium in Miami next week.

The way I have always felt about Patrick's autism is that I want to help him live life to it's fullest potential. If I were a child I would want that from my parents. I know that my own parents would have not been forward thinking enough to have stepped out like this when they were raising me back in the 1970's and 80's. However, I don't even think of the stem cell treatments as anything "crazy" or "out there". I just think of them as an option in the medical portion of Patrick's therapy. I feel really fortunate to be able to do this for him.

I would urge any parents or person who is reading this and considering stem cells to do your own research. And do it well.

I am documenting Patrick's behavior and medical issues very carefully before, during, and after the procedure. Hopefully our information will help other parents make decisions. I plan on letting everyone know our results...the good, the bad, the non-existent. I am praying for the good. Please join me in doing that.

Wednesday, April 14, 2010

Healing Patrick's stomach issues

After speaking with one of Patrick's doctors, Scott Smith, last week; Patrick got a couple of new prescriptions to help with our ongoing battle with the yeast and bacteria in his stomach. We luckily have been doing Oat urine tests every month or so. This alone has helped us to monitor what has been going on inside him.

Bless his heart is all I can say. We started out battling some major bacteria. As Scott gave him a round of vancomycin, liquid septra, and diflucan it really helped to fight off the bacteria. His behavior was terrible before we treated the bacteria, and also during the die off. We did a follow up OAT which showed the bacteria was back in balance, also that his probiotics were now in balance. However, his yeast which should have been around 40 ended up being around 660. This is off the graph.

Scott prescribed him another round of septra along with keto for the yeast. This is working great because I think he had developed somewhat of a tolerance to the Diflucan. After about two days we could already see a difference.

We are trying to make sure that his stomach is balanced before we do the stem cell treatment. We are going to do another OAT test in about two weeks. Patrick has an IVIG treatment this Thursday with his Dr. in Nashville. This will be the last one he has before the stem cells on May 10.

The great news is that just from the new meds to fight the yeast he is acting SO MUCH BETTER. We had a great weekend. Patrick started using some really good, spontaneous language on Friday. It has been so wonderful. I am adding a few pics on here of him painting with his brothers and sister last night. He probably did the best job of all four of them and even made the less mess! It was so nice to see him being so typical and enjoying himself with his siblings.

I sent his supplement list and the short list of any meds he is on to the Stem Cell Clinic last night. Luckily he is able to keep taking everything in the weeks leading up to the trip. He is so excited , he keeps "reminding" me that we are "going on vacation" to "Costa Rica." He is very interested in the "airport," "beach," and "swimming pool."

Thank you all for the prayers!!!

Monday, April 12, 2010

Stem Cell Journey Update

Whew....we now have 11 people going on our Costa Rica trip. We have been down at the post office getting the kids passport information mailed off today. Several of the other adults going are also getting rush orders put on passports as well. It feels like we had a million little things to do today.

I have preliminarily looked at flights but plan to sit down with that a little later today. Same with the hotel. The Stem Cell clinic actually sent me a long list of hotels. If we choose one from the list they will provide transportation back and forth to the hospital. I am pretty sure that we will choose one from the list. Several have apartments or suites similar to Residence Inn.

We leave on Saturday, May 8 and then we depart back for home that following Saturday. Patrick starts his stem cell treatment on Monday, May 10. He will go every day for an infusion of stem cells (Monday thru Friday). He keeps asking me about "Costa Rica" and "vacation" so he is really excited!

My four year old has decided that he wants to go on a "zip line." :) Hmmm....we'll see. Patrick is most excited about the swimming pool.

As I get more of the little details out of the way, I will turn the blog more toward the medical side of things plus I will give updates daily when we are actually there.

Friday, April 9, 2010

Follow our Stem Cell Journey

Today we took the first step on our "stem cell" journey for Patrick. I have studied stem cells for two years and did my due diligence on finding a company that was legitimate and a good fit for our family.

Luckily, our Doctor, Scott Smith, of Melbourne Florida had introduced us to the Cell Medicine Institute. When we first looked at Cell Medicine they were operating solely out of Costa Rica; they are now operating in Panama City, Panama and San Jose, Costa Rica. Both clinics are identical so we chose the Cima Hospital in Costa Rica.

Scott has several children that are patients who have went to this clinic recently. These kids are seeing astounding results. I went ahead and booked the appointment today for May 10. We fly out for Costa Rica on May 8. I also got some exciting news tonight, my parents are going with us!

Hopefully, Ms. Joni our behavior therapist can go with us as well. As soon as I hear from her tonight, I am booking our flight. We are all excited about this journey and I feel like we truly made the first step by booking the date today.

More to follow very soon!

Sunday, April 4, 2010

Spring is in the air, and Patrick is on the move

Whew, spring came in with a roar! It is so nice to see these warm and sunny days. The kids have been enjoying being outside and of course they liked the Easter Bunny's gifts that he left here. You will notice at the left that the kids had a St Patricks party with Ms Joni. I think they were pinching her because she didnt have her green on.

Patrick made it out to explore the world while staying at his Gram's house in Mayfield. He wandered off the playground and into a house next door. However, the people happened to be out. He just let him self in and started to watch their TV. Meanwhile, the entire rescue squad, a helicopter, all police departments and over 80 volunteers were searching for him!

We were very lucky that our situation had such a good ending.

Now comes the big part. We need to get together and help each other. We have another child that plays with Patrick one day per week. He is so cute! His parents like the social interaction that is he getting. It is so refreshing to see them all together. I wish that we were able to offer schooling in small group settings that was private. We are so unfortunate in our state (Kentucky). I am blessed that I enjoy the homeschooling we do and of course that I have Joni to help with Patrick's schooling. There is such power in numbers! Our state needs to provide some alternatives for parents where schooling is concerned.

We have had a lot of fun on break days with horse back writing, Easter Egg hunting, and doing all kinds of crafts for Easter.

Overall we are making it one day at a time, luckily they are mostly good days too!

Sunday, March 14, 2010

Great Upcoming things for FEAT

Our local autism group, Families for Effective Autism Treatment of Western Kentucky has a few exciting events coming up. Our annual FEAT on the Street 5K will be held on Saturday April 17. We are co-hosting this event with Rehab Associates Foundation and GoSoccer. Come out and join us in the run! The proceeds from the run enable our group to do things for local families like bring in speakers and then the other half goes to GoSoccer. This organization provides a buddy for kids with disabilities who works with them on the soccer field. The kids have a great time. I posted a pic of Patrick with his behavior therapist, Joni on their way to a GoSoccer event. He loved it!

The other really exciting thing is that Stephen Shore, a national speaker, college professor and author...who also happens to be on the autism spectrum, is going to be speaking here on Sat June 16. Our FEAT group is hosting him and this event is open to the public. We are still working on the time and the place but we will have details out soon.

Stephen is the author of "Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome." It is a great book about his experiences on the spectrum as a child and as an adult. I would highly recommend it.

On the autism home front we are still working on some behaviors from the strep (we just did a blood test to confirm elevated levels) and Packy has been really stimmy. Thankfully he is much better by now. His Dr in Nashville has just had back surgery, but he will only be about one week delayed in getting his IVIG treatment. We wish his Doc the speediest of recoveries. I know that re-cooperating from back surgery is not a fun deal. I just had a family member go through it.

Overall though Patrick is doing great! He is like his brothers and sister...just impatiently awaiting spring!

Can you have a new kid by Friday? Yes, You can!

Hi all.
Last year, scratch that, make it two years ago, I went on vacation and while in the airport bought a book called "Have a New Kid by Friday." I read it, took some notes, came home with a new resolve, and two years later........I still had the same kids.

Don't get me wrong, they are good kids. The oldest three are awesome and Joey, the "Baby" who is now 4, is great too. However, like most kids...they know how to work the system. The system being my husband, our extended family, and myself.

One reason I bought the book is because I had read a few of Dr Leman's books before and found them entertaining but chock full of good parenting information. Well, a few weeks ago, I pulled the book back out as I was cleaning out some bookshelves.

I started reading a bit of it and I came to the realization that I needed to really follow through on some of this. One thing that Leman points out is that "powerful" kids are the ones that others might refer to as bossy, demanding, and fit throwers. He likes to remind you that if you have powerful children then you need to look to either your spouse or yourself to see where kids get these behaviors. Scary isn't it? When I start thinking about my kids "powerful" attributes and then start wondering if they get them from my husband or is kind of scary, and well, downright embarrassing.

Hmm...Do I really act that way?

Surely not! It must be from his side of the family. His family likes to think that the "powerful" behavior of our youngest comes from MY side, and I laughingly have to assure them that it must come from THEIR side. Now of course, the kids are all smart, so yes I will take credit for that. :)

One thing hit me though as I was reading Dr Lemans strategies. He likes to filter issues into one category of two: Mountain or Molehill. Many things such as choice of dress and other type issues he puts in the Molehill category. He thinks that parents should pick and choose battles wisely. Many items such as choice of dress are just not issues I have came across yet with my kids being as young as they are.

However one thing startled me. He states that powerful kids who throw fits and demand a lot of their parents would be put into the Mountain category. He said that effective parenting by age 2 should rid kids of this fit throwing, back talking, type of behavior. I looked down at Joey, age 4, who has just went swimming with his brothers and sister. As the other kids are saying "I loved it", "that was great," Joey crosses his arms, frowns and yells "I HATED IT." This is a typical scenario of anything we do....right down to celebrating his 4th birthday at Disney World. He "hated it" and wants to know why he didn't "get to go to Chuck E Cheese?"

Joey's complaining, back talking, just general grouchy, obstinate behavior has ruled our household for awhile. Did I happen to mention he is stubborn too?

Well he spent Thursday night with his Grammy, as Joey comes rolling in to our house on Friday morning, I have everything in the school room ready to go. Ms Joni (Patricks behavioral therapist who also teaches him) is already sitting down. Here comes Joe...."I hate school. I am not sitting by Packy and Ms Joni. I am moving back to Grammys. " By the time I walk in from the kitchen he is laying flat on his back with his feet in the air kicking Ms Joni's table.

In the olden days, you know like yesterday, we would have argued, cajoled, threatened, and generally wasted a large amount of our time and patience with this one little four year old. But today little did Joe know...I was armed with "Leman Power."

I smiled, walked in, said something to Joni that had nothing to do with Joe or his actions, scooped Joe up, WHILE NEVER ACKNOWLEDGING him or his fit verbally, walked to the front door, unlocked it, and sat him outside. I then shut, locked the door and walked back in. The screaming was tremendous but the only ones that paid attention to him were Melvin and Marvin, two of our dogs that were out on the porch.

After about two minutes of the loudest screaming ever, and my reminders to Grammy and the other siblings that we IGNORE, IGNORE, IGNORE. All got quiet. Then Joey decided to pet the dogs and talk to them. He then after about five minutes, knocked very nicely, I went to the door and asked him if he was ready to be nice and come in. He waltzed through the door and said that he was "going to school" as if that had been his idea in the first place and I better get my act together and teach him. :)

So far so good. We have had a fairly pleasant weekend and he is acting better each day. I told my husband we just had to speak Joe's language. Obviously what we had been doing was like speaking Japanese to him for the first few years when all we had to do was realize he only understood "Lemanese." Thanks Dr Leman!

I will keep you posted on some of my other Joe strategies. I have a great one waiting for him!

Wednesday, January 27, 2010

Join us on our journey

Well, good news to report. I finally got everything straightened out with the medical card situation and now should be back on track for Packy's next IVIG appointment in a few weeks. We have even found a way to get the medical card to pay for the actual IVIG (not the treatment but the medication). At the tune of around $2,000 per month that is excellent!

I finally have decided to move forward on pursuing the stem cell treatment as well. We are hopeful that this will be done within the next 2-3 months. I started looking into stem cells about 2-3 years ago. I found an obscure paper (yes, on the internet for any of you skeptics out there.) Skeptics? Probably not. Let's face it most people reading this have a child that has been affected by autism....the only skeptics would be anyone benefiting from big pharma like a shareholder or vaccine patent holder or maybe a mainstream medical doctor. I digress, my apologies. :)

After finally tracking down the author of that paper, a doctor from California, who was a friend of the late Dr Rimland. We had a wonderful conversation one day about his hypothetical idea. At the time of the conversation three years ago it was more of a hypothetical but now it is a reality because stem cell treatments are being done in US affiliated facilities. Currently two that are very reputable are located in Panama and Germany. Fast forward three years, and children that go to the same doctor that my son sees are now receiving treatment in both countries.

We were initially looking into Costa Rica a few years ago but the US government leaned on Costa Rica and got them to pull the license on the clinic. That clinic moved to Panama. It actually seems to be the more advanced of the two clinics. The German clinic uses adult stem cells while the Panama clinic is now using cord blood stem cells from donors.

I am more interested in this method. The whole idea that got me thinking about stem cells actually came from the birth of my youngest son Joseph in 2005. I decided to bank his cord blood because it could be used for any of my children if they ever needed it due to health issues. At that time autism was not being treated with stem cells (that I know of) but it started to make a lot of sense.

If you follow my thinking then common sense tells you that Patrick was born without autism but for lack of a better term "came down with it" after his early vaccinations. He was hospitalized at ten days old after becoming ill with an "unspecified" viral infection. He had similar reactions after each set of vaccinations with the most common being extreme lethargy. He was in the ER at three months of age with rsv and then his good doctor at the time did us such a great favor by "catching up" vaccinations less than two weeks later.

Hopefully the stem cells will help to restore some of the immunities and systemic functioning that he was born with before his system was injured by the vaccines. I have read some really good first hand reports from other parents and also from adults who are being treated for a whole host of diseases.

I will definitely keep everyone posted as we make the decision and move forward. Please keep Patrick in your prayers.

Thursday, January 7, 2010

Where do they find these people?

Hello friends!
I have been quiet since early December. We had a busy month and then lo and behold on Dec 22 the whole household starting coming down with the flu (yes and it was the "vomiting kind.") I will be kind and spare everyone the projectile visuals.

This sickness gave my whole family a detour because a few of the kids had it for 2-3 days and then Mom and Dad also got it. Mine was short and awful; but by Day 2 I was weak but could make it around with rest breaks. My husband didn't have it near as violently but his stretched out for a longer duration....or maybe he is just smarter than me and knows you can fake it for two or three days to get a good rest. HA HA.

I have a story for all my autism family near and far that I have been at first too sick, and then too far behind in kids, work, household, etc to even take a time out on.

However, this story (like many of you have experienced before), this one is a real "doozy" as my late grandmother would have called it.

I try to see the positive and I try to not complain much. I think I do a "fair to good" job at this. My son has a medical card (medicaid) from our state. I have been grateful for the waiver that allowed him to obtain this card when he was about four years old. I recently switched my insurance to Humana (complete side note here) and I asked what type of benefits they included for autism. Their answer is they DO NOT cover autism. Oh well. So yes, I have been grateful to have the card.

Now, to really look at the card realistically, it does not cover a majority of what we do biomedically. I pay for all lab tests out of pocket other than just a standard blood test that is covered. It also would pay for vaccinations (which we do not do) and well child exams or physicals in the state of Kentucky. However, we don't do this either because both of our main doctors for Patrick are in Tennessee and Florida.

It does cover some therapies such as speech and OT. That is helpful, don't get me wrong. I have to cover his behavioral therapy out of my own pocket. Please understand I am not criticizing what we do receive, but merely just setting the scene here.

Well, come to find out, our state, like many other states, is WAY behind budget. That means everyone up in Frankfort needs to find places to start whacking on that budget. One thing that surprises me is that our government would start by scrutinizing the kids with disabilities who receive a medical card. But a few people I know who work in government have told me that the disability/medicaid cases are being reviewed rather stringently.

This is where the story gets good.

A lady from the medical review team at the state capitol called me to update his doctor problem there. She updated a few other facts. She then asked where he attended school. I told her that he is homeschooled and that primarily he is a taught by a behavior therapist that works with him every morning. I told her that he is in first grade, which is the grade level he should be in. She asked if I had gotten him any state testing lately such as an IQ test. I replied no. She said she would really like to get some testing done but the medical review team would have to look at it.

Now, he does have the tests in his file from First Steps (his last testing was when he aged out at 3). Since then he has several tests done yearly at minimum by speech therapists, OT's and a PT assessment that we were lucky he did not qualify for. These items are all done through the therapists that contract through the state. Our caseworker, who contracts through the state, visits us each month and had just performed her yearly assessment of his skills.

Now, I know that there is a good amount of fraud that goes on with medicaid and medicare. Believe me, I understand that and additionally, I am very much against overspending by the government.

But.... he is clearly a child with autism.

I have to say that ONLY someone who does not have a child with autism would EVEN CONSIDER that any parent would try to keep passing their child off as being afflicted by autism if they were not.

I would go on TV proclaiming our joy if Patrick was healthy to the point where he did not need his card. In fact, I would mail the medical card to the Governor along with a thank you card.

But that is not the case.

I receive a letter from the med review team directing me to a PhD in Murray that Patrick has to see before his medical can be approved for the year. The letter gave no specific information other than the address and directions.

As we pulled up at this really, really, old house I was in shock. Now, don't get me wrong, in Paducah we have a LOT of offices in homes. In fact two of my doctors are in remodeled homes and my dentist used to be. My home is no show place. But this was a ran- down house that looked on the verge of being abandoned. A good picture in your mind might be a really old, ragged, college rental that has seen better days.

I thought maybe, just maybe, they were remodeling. But when I stepped inside, I soon saw this was not the case. The inside was darker, mustier, and just plain worse than the outside. Some guy was at a hodge podge desk with papers strewn all over. I told him who we were and he didn't really say anything. Patrick was going to start exploring, so I asked if there was a place we could sit. Up front there was only a really old metal rolling office chair. Files, boxes and papers were stacked up all over the hall by the entry. We were directed to a converted type of sun porch room that was dirty. Very dirty. Now, this isn't coming from the queen of the clean, and everyone who knows me realizes that with four kids and all my dogs, our house is really "lived in." But this was NASTY.

Patrick is not feeling well after the ride down to Murray so he kind of sprawls out on a dirty couch. I take a seat. The fella from the front gives me something to fill out. It is a questionnaire that is behind a battered clear pouch. The handwritten directions say for me to fill out all the questions but don't write on the form. They gave me scrap paper that had printing on the back to use.

I was in shock that the state of Kentucky had sent me to something that resembled a crack house and now they couldn't even make me a copy of the paperwork to fill out. There was zero direction given on what to put other than answering the questions by indicating 1 or 2 etc for my choice. I tried to be logical and write our name on the top of the paper just so they wouldn't get it mixed up with anyone else's file.

Now, I don't think I've mentioned yet that this house smells of musty smoke and another type of really bad odor. For all the biomed parents out there whose kids deal with allergies, you can only imagine.

A few minutes later, a middle aged man wearing blue jeans with a dirty stain on the front of them walked into the waiting room. He didn't make eye contact with or address me. No introductions etc. Nothing. He asked for Patrick to come with him to his office. Patrick is still kind of lying down....he just turned 7. So I gather his coat and say "Packy, come on let's go follow him."

The man finally decides to address me by saying that I am not needed and I need to stay in the waiting room. Okay, so I literally have no clue specifically why we are here, no clue who this man is other than the paper that the state sent me with his name and this address, and now he tells me to stay in this room.

I decided to just stay seated. They were only going into a tiny room next to us (and these are house rooms so they are tiny and the hall is a small area). I thought this might be rather amusing to see how this PhD fella might be able to work with Patrick to get him to cooperate. I have a Masters of Education with a Special Education emphasis and an autism specialization. But I didn't plan on mentioning any of this to the "doctor."

Patrick walks out of the room. The "doctor" says (and I am quoting almost as verbatim as I can) "Patrick go ahead in there and have a seat. I have to get some things and will be with you in a minute." He says this as if Packy is 30. The good doc goes off into another room and good ole Packy walks right back to mom in the waiting room.

Try number #2. "Patrick come on back in here. I'm ready. You need to come with me." No response. I get Pack up and walk him to the doorway.

They go into the "office" and a few seconds Patrick comes back in. Repeat once more.

The good doc suggests that Patrick is not in the mood for anything today and we will have to reschedule. Well, mama here is thinking "reschedule, my ass." We had to drive an hour, I had to leave my other three with a sitter, and it disrupted our whole school day for something that is clearly jumping through a hoop.

I look at the doc and said "if I can come in with him, and just sit there, he will do what you want him to do." He doesn't say yes but he doesn't say no, so I take the silence as agreement. We go into the office which is a piled up room with mismatched furniture. The "desk" is a 20 year old card table with a dirty top and the vinyl peeling off of it. He has Patrick sitting in an old wicker lawn chair...the kind with the sloping back that a kid can't lean back in because they are so deep. I am in a similar old chair. The doc is trying to push the table up to keep Patrick in the chair but the chair is so deep that Patrick just lays back and can kind of "melt" out from under the table to escape.

The doc flips open a book and shows a picture of a cat. He says "Patrick what is missing from the cat?" Patrick said "cat". Doc repeated. Patrick said "cats yellow." At this point, I'm not sure what is missing so I guess that tells you where my own IQ might be.
I ask the doc if he is performing an IQ test. He responds yes. I told him Patrick has done a lot of tests and I name several. I also said he progressed through years of ABA but we had never done anything of a "what's missing" that I could remember.
He tried it again with another animal and Pack labeled the animal and then gave the color. I think he might have even said it had four legs. Yes, actually he did, that was what he did with the next two. He is trying to apply his own logic. This man is asking long, lengthy, strange questions. So I am going to say the animal, then state the color of the animal, hmmm, what else could this guy want....oh I know, maybe I am supposed to count their legs." He did all of this. What he didn't mention was the cat had some whiskers missing and the white tip was missing from the end of the foxes long tail.

The doc tries another approach. This one is classic.

"Patrick, what makes water boil?"

At this point, I can only wonder what school awarded this man a PhD?

I told the doc that Patrick would not know that information due to that type of phrasing. He can tell you the stove is hot and it is dangerous. He flipped a page and Patrick went to town counting. Whatever he was supposed to do on this page, he completed because it was counting objects. He also had to follow the direction and listen so he could know if he had to count the square or the brick etc. He then read him word problems in his lengthy sentences which he could not do, but I was able to use short words and tell him to add the numbers, which he can do. I am sure this does not count.

Patrick read some words. He gave him a pencil and asked him to write something stupid. I cant even remember what it was. So I said "write your name." Which he did, and very legibly too. He then wrote Barney and some names of characters from TV. He did a few more things they guy asked but I would have to interpret for him the lengthy "adult" speak to something short and direct that Pack could roll with.

Finally during reading, Patrick just had a melt down and was not going to cooperate with this guy anymore. He was asking him to read from a book laying flat on a table that was so tall it reached around Patrick's chin area since the wicker chair was so low. Pack just got frustrated at this point and was not going to make nice any longer. I told him I thought that was about it. He nodded and we got up, got our coats and headed to the door.

No goodbye, no discussion, etc. The guy at the desk said "good luck with your child" as I handed him the paper in the clear plastic and my responses on the scrap paper I was given. I thanked him. I almost thought he looked embarrassed. He should have been.

Now, can you imagine what this "doctor" is charging the state for an IQ test? This test was so inappropriate for Patrick. The doctors whole demeanor was indicative that he has not had much experience with children who are on the autism spectrum. It was ridiculous. A waste of our time, the "doctors" time too and the state/taxpayer money. This doctor was so unprofessional it was unbelievable. I don't think he had ever heard of HIPPA regulations much less health department, fire code, building regulations. It is hard to believe he passed any sort of inspection so he could be put on the state testing provider list. Let alone a licensing inspection to hold his license to practice.

I remember the frustration back in the day when Packy was little (maybe one or two) when to "play the game" we had to jump through a hoop or two with a pediatric well child exam at the state university or a time or two that I had to grit my teeth because the person we were dealing with just clearly didn't have a clue about autism. But goodness, this is 2010, I guess we have just been so fortunate that we haven't had to deal with anyone like this in so long. I know they are out there....but I had almost forgotten what it is like.

I'm still shaking my head in shock. I don't really even have a good closing, other than to say that I am still in shock. I am also glad that my husband was there because he describes the house in much harsher terms than I do so I know that I didn't dream it up. I know you all have experiences like this too, but I just had to share it.

It did give me a new resolve to help others. What if I happened to be a mom or dad that did not know better? What if this man would have said at question #2 "well he doesn't know what makes water boil. Hmmm. We cannot progress any further on the test. His IQ is 50 and the outlook is not good." What if I would have believed in this person, in testing, and in the power of the title PHD? Many people are programmed to accept and not question medical tests, psychological tests, prognosis, medical advice etc. What if all the pioneering biomed parents before us had accepted this?

If so, my son would still be the one year old little boy who everyone thought was deaf because he had zero reaction to sound. He would be sitting in the living room right now humming and either staring out the window with an emotionless stare or stimming on the light or the fan to the point he could not eat or move.

Thank you to all parents and children who braved this road before us and dealt with MANY people like this doctor and many who acted much worse. Thank You because it is because of you that I have my son back and he is the happy boy you see in my other posts riding his horse, loving his dog Angel, and saying "I love you mama" to me.