Great Weekend

We had a great weekend! On Saturday, two neighborhood kids came over to play with Haiden. It was so good seeing him interact appropriately and knowing how to handle certain situations on his own. They played for almost two hours and would of played longer but we had to get ready for his soccer game. At his game he scored 4 goals and congradulated his teammates when they scored. He was also invited to a birthday party! He said some neat things as well. I've listed them below:
Looking up at the sky he said, "Where's God?" I explained he couldn't see him but he was up in heaven. He said, "When I die, will I go to heaven?" I told him, "Of course you will." He then said, "Well, I'm scared that I will fall." I said, "Oh you don't have to be scared, God will keep you safe." He then asked, "Will you go with me?" I replied, "Of course I will baby, of course I will." Now I need to find a book on how to explain all this to your children.
He played Putt Putt with his dad today. When he got home he said, "Guess what? I got a hole in one!" "I also got 5 birdies!" He was so proud of himself.
When he got home today from golfing he said, "Can I play with Ella?" This has been something we have seen a lot more lately. He use to rarely want anything to do with her.
We got all the baby gear down today and when Haiden got home he said to Ella, "This was yours when you were a baby." He then showed her how she played with it.
After he goes to bed I always check on him about 15 minutes later. It gives him a little piece of mind before he fall asleep knowing that mommy will be back up soon. (Usually he is asleep within 5 minutes.) Tonight when I went to check on him he said, "I really need to tell Daddy something." So I went back downstairs and told Brian that Haiden really need to talk to him. When Brian went upstairs Haiden said, "Daddy, guess what, I got 5 birdies today!" Brian told Haiden how proud of him he was and then asked him if he remembered to go potty before he went to bed. Haiden said he forgot so he went to the bathroom. While in the bathroom Haiden threw his arms up in the air and sighed. He said, "Daddy, I forgot to poop today."

Josh and Haiden

Great Time

Our friend, Stacie Haak, graduated from vet school this spring. Yeah Stacie! Josh and Emily Thomas had a grad party for Stacie at their house. Josh has played football for the Colts the past several years and Haiden really looks up to him. One of Haiden's "quirks" is that he has an insane memory. This past fall he memorized the entire Colts lineup. He also remembered that Josh had been to our house before and has been wanting Josh to come over for the past 8 months. When we told him we were going to Josh's house this weekend, he was elated. So of course, Josh being the great guy he is played football with Haiden and gave him a football signed by the Colts. (I think Brian was just as excited as Haiden.) We cannot thank Emily and Josh enough for going out of their way for Haiden. He will never forget it.

A Better Lifestyle

Haiden asked me, "After all the yucky stuff is out of my belly, can I stop taking this medicine?" He was talking about his antifungal. I'm happy to say that yes, after we heal his gut, he will no longer have to take antifungals and his diet will not be as restricted." Eventually he will be able to eat eggs, rice, potatoes, corn, milk, and whole grains again. It is hard to say when that time will be. It could be next year or it could be in three years. We will always eat organic meats, fruits, and vegetables. I will never expose my kids to artifical sugars, especially aspartame, again. If you research all the risk, you will realize how harmful artifical sugars are. I will also continue to limit sugar intake altogether. (It will probably be the hardest for me since I love anything with sugar in it.)
Haiden and Ella continue to amaze us everyday. We are so blessed and look forward to welcoming Baby McKinney into the world.

Graduation Day

Haiden had his preschool graduation today and yes, I cried. I was so proud of how far he has come and to see him up on stage and say, "When I grow up, I want to be an astronaut." I was so overwhelmed with joy. On the days when the biomedical treatment seems too much to handle I remind myself of why I'm doing it. Today was a perfect reminder.

Cutie Pies

Haiden thought he looked so cool.

Princess Ella

ATEC Score

ATEC stands for Autism Treatment Evaluation Checklist. Before we started the biomedical treatment Haiden scored a 61. (The higher the score, the more "impaired".) A week ago Haiden scored a 24! I think his results speak for themself.

Money, Money, Money

The biomedical treatment can be expensive but I don't think you can put a price tag on your child's health. I do think parents need to be aware of what is considered reasonable in the biomedical community. The first DAN doctor we saw in Carmel overcharged and after two visits we had already spent $4000. Our DAN doctor now, Dr. Hulseman, files with our insurance so it is much cheaper. In the beginning is the most expensive because all of the necessary tests have to be run. Depending on what type of treatment you are seeking, depends on how much you will end up spending. Haiden supplements cost about $80 for a 3 month supply and his antifungal cost $30 for a one month supply, which isn't too bad. We only buy our meat from a local organic farm and our fruits and veggies are organic so we pay the extra price but it is well worth it. We spend a little more on GFCF foods at Whole Foods but have learned to make a lot of things from scratch. I also switched cleaners and use a more expensive "green" cleaner. The kids and I also use a more natural toothpaste. The kids have special soap, lotion, and sunscreen that I buy from Whole Foods. We also replaced our plastic Tupperware with glass and the kids have organic bedding. Our world is full of toxins and I have such a better peace of mind knowing that I'm not exposing my children to as many toxins. I use to laugh at the parent who was so health conscious and did the whole "all organic" thing. The more I've learned about these things the more organic/natural I've become. I know I can't protect my children from everything but I will protect them from the things I have control over.

In March 2009 Ella was dismissed from First Steps since she had met all of her goals and was now doing everything a little girl her age should be doing! Haiden continues to do incredibly well. He still has things he needs to work on but he is finally healthy. Now I am up to date on our families journey and look forward to telling you all the things I think parents or soon to be parents should know. I hope you continue to follow my blog!

Keeps Getting Better

Ella continued to make huge gains with speech, occupational, and cranio therapy. Haiden continued to make improvements in his overall health, speech, and social interactions. I was thrilled when in January I received a phone call from Dr. Hulseman's office saying they had a cancellation and Haiden could get in the next day. We went the next day and I knew I had finally found a doctor I could trust. She wanted us to continue the GFCF diet and move towards the Specific Carbohydrate Diet. She also wanted us to start Haiden on supplements (multivitamin, vitamin B, magnesium, vitamin C, cod liver oil, digestive enzymes, calcium, and Therabiotic) and an antifungal. After a few days on the antifungal Haiden started to get yeast infections on his skin under his arms, along his abdomen, and groin area. It was the weirdest thing but I knew it was a good sign that the yeast was being removed from his body. I started researching in depth the Specific Carbohydrate Diet and realized that this was going to be a process since we now had to remove sugar, starch, and carbs from his diet. We have taken it slowly by removing potatoes and reducing sugar immensely. (Once our baby boy is born our whole family is going to do the Specific Carb Diet. ) I felt so good about what we had started and felt like Haiden was in a very good place.

For more information on the Specific Carbohydrate Diet please visit http://www.breakingtheviciouscycle.info/ and http://www.pecanbread.com/

Cranio What?

So it took some convincing but I finally agreed with Ella's O.T. to try craniosacral therapy. Teresa Morrison, cranio therapist, came to our house for Ella's first treatment. It looked like she wasn't doing anything but putting her hands on Ella. She worked on her for an hour and said she would probably be very tired the rest of the evening. The next day Ella ate real food for the first time! Brian and I were absolutely amazed. No more gagging and throwing up food, yipee! Haiden also continued to make improvements in his speech, social skills, and overall health. I continued to research children who were recovered from autism and continued to be inspired. It was driving me crazy knowing that I really counldn't move on with Haiden's recovery until we saw Dr. Hulseman. I decided to call her office and ask if there was anything I could do to get in earlier. The receptionist told me I could be put on the cancellation list and when they had someone cancel, I would be called. I was thrilled and she put us on the list! It was also during this time that we found out we were pregnant with baby #3! About a month earlier I had stopped drinking sodas and started taking prenatal vitamins. Our family had already removed processed foods, foods with artifical sugars, flavors, and coloring. I knew at that moment I was going to make sure I did everything right with this pregnancy. I thought I was doing that with my other two but I didn't realize how many toxins I was exposing myself to at that time. I was going to live my life as toxic free as possible to ensure this baby had a good start. I finally felt confident as a mom because I was listening to my instinct!

The Road Begins

After Haiden recovered from his meningitis and encephalitis, I found a new DAN doctor. Mary Lou Hulseman is a family physician who has a daughter she helped recover from autism. The only down side was I found her in August and are appointment was made for June 2009. Since her wait list is so long, she has monthly seminars to help parents get started. We removed gluten and egg from his diet. We had already removed caesin from his diet and this took us awhile to get comfortable with. It is amazing how quickly I became an expert at reading labels. So now he was Gluten/Caesin/Egg free. We had to provide all of his snacks and lunches for Goddard School and Developmental Preschool. I have to give Brian all the credit because he spent many nights cooking Haiden's lunches for the next day. (Since we've been doing this for so long now we have learned how to plan ahead better.) Whole Foods in Nora became my favorite grocery store. They have all kinds of wonderful GFCF foods. I also found a lot of resources and grocers on-line. We also took out processed foods, foods with artifical sugar, flavors, and coloring. I started making homemade chicken nuggets and fish sticks. Brian has become a pro at making GFCF pancakes that Haiden loves! It took about three months on the diet but Haiden's bowel issues continued to improve and he began to sleep better. He stopped complaining about his stomach hurting and his random fevers went away. I also started to notice Haiden's attention improve which seemed to help his speech. Before the diet, Haiden would get so distracted while telling me something that it could take a long time for him to get it out. The best improvement had to be his social interactions. He started to initate play on his own. I believe that Developmental Preschool also helped with these improvements. He has a wonderful teacher and great therapists. During this time, Ella was diagnosed with low muscle tone. This is why she had such poor gross motor skills and couldn't eat anything but purees. She also had several sensory issues that made the smallest tasks very difficult. Even though tubes were put in at 7 months of age, she continued to have ear infections and a constant runny nose. By this time I had stopped vaccinations and Ella continued to receive Physical and Occupational therapy. We were blessed to get Haiden's O.T, Tara Danielson, for Ella. In October Tara recommend we look into craniosacrial therapy. It sounded pretty crazy to me but I had no idea what a blessing it would become.

For more info on GFCF diet and Craniosacrial Therapy visit http://www.gfcfdiet.com/, http://www.autismweb.com/diet.htm, http://gfcf-diet.talkaboutcuringautism.org/, http://www.upledger.com/

Huge Scare

On our way back from Gatlinburg Haiden started to complain of a headache. I thought he was tired so I told him to try to sleep. For the next two days Haiden ran a fever and complained of a headache. I was able to get him into his pediatrician and she thought he had strep and ran a strep test, it came back negative, we were sent home and told to watch him. That evening things got worse and by 2 am Haiden was screaming in pain and running a fever of 104. I took him to the ER and they feared he had meningitis. They ran some blood work and then performed a spinal tap. He was so brave! The results came back positive and Haiden was admitted into the hospital and we were put into isolation. It ended up Haiden had meningitis and encephalitis. He started stuttering really bad and was almost impossible to understand. I thought, "No! Please do not let this happen to him." He had enough he had to deal with, he didn't need more. It took Haiden about two weeks to recover but I am very thankful that he did recover fully and without any permanent damage. Haiden's sickness was a huge scare and put his autism recovery on the back burner. As soon as he recovered from the meningitis and encephalitis, we got back on track with Haiden's biomedical treatment.

Needed to do more

I soon found out that you have to really do your homework when it comes to finding a doctor you can trust. We went ahead and removed Caesin from Haiden’s diet and his bowel issues started to improve. He continued to make gains in his speech but still lacked imagination and social interaction. During this time Ella wasn’t meeting her milestones so I contacted First Steps for an evaluation. She qualified for Physical and Occupational Therapy. I felt so scared because Ella was going down the same road Haiden had been down. I refused to let this happen! I was going to do everything and anything in my power to help both of my children. I stopped Ella’s vaccinations and started researching for a new biomedical DAN! doctor.

DAN!

January 2008 we went to a DAN! (Defeat Autism Now) doctor in Carmel. She had a series of tests ordered and we went back 3 weeks later to go over the results. The results showed us that Haiden had sensitivity to milk and eggs. He had inflammation in his gut along with an overgrowth of yeast and bad bacteria. He also had cholesterol in his stool and malabsorption. The DAN doctor recommended we put Haiden on the Gluten and Caesin free diet and give him 12 supplements each day. To say I felt overwhelmed is an understatement. Once again, something didn’t feel right about this doctor. I believed the test results were accurate but I didn’t think this doctor really cared about Haiden’s well being. Also, in one month we had already paid $4000!

GI test

In December 2007 Haiden’s GI specialist at Riley performed a procedure where a camera is used to look into Haiden’s intentines and colon. He still couldn’t figure out why Haiden continued to have bowel issues. The procedure showed that Haiden had little lymph nodes all over his intestines. The doctor said that was because he was allergic to something. He did some blood work but everything came back negative. He wanted to see us again in 6 months but we never made that appointment. Again, my instinct told me something wasn’t right. (A year later we found out that the lymph nodes were actually a virus caused by the MMR vaccine.)

Little Signs

From the first week of Ella's life she was sick. First it started off with jaudice she just couldn't kick. Next, at two weeks of age, she got RSV followed by her first ear infection at 3 weeks of age. Ella received the Hep B shot 24 hours after her birth and by 3 weeks old she was on her first antibiotic. Now my instinct was stronger than ever and I was listening. I had to fight with my pediatricain to do only one vaccine at a time. I got the whole guilt trip that she could get a deadly disease and die. Even being told these things, I went with what I thought I should do. Ella received her first 4 months of vaccines within a 6 month period and at 6 different times instead of 2 doctor visits. She continued to constantly be sick. By 3 months of age she was on an inebulizer for upper respitory issues, had 2 ear infections, a constant cough and runny nose, and a virus. Our doctor kept telling us this was all normal especially since she was born at the beginning of cold and flu season. My heart kept telling me this wasn't normal. It was also at this time that I decided to go with a biomedical approach in treating Haiden. We found a DAN! (Defeat Autism Now) doctor in Carmel and made an appointment for the first of the year.

After Dr. Hudson's visit, I finally started to listen to my motherly instinct. I decided that I didn't care what Haiden's label was, I was going to treat his symptoms. Dr. Hudson gave us some great strategies to use at home and Haiden continued to receive Speech and Occupational therapy. I continued to research on-line constantly. I soon found out that all the symptoms Haiden had and the labels Dr. Hudson gave him, fit the PDD-NOS label. So with this in mind, my research focused on treating Autism Spectrum Disorders. During my research I kept coming across moms who were curing their autistic children. It sounded great but I needed to learn more. I also started to learn about the dangers of too many vaccines at once. Fall of 2007 soon approached. Haiden started back in Developmental Preschool with a wonderful new teacher, Mrs. Krepps and our new addition, Ella Grace, came into this world. We didn't know it at the time but Ella would help Haiden begin his recovery.

Dr. Hudson Visit

In April 2007 Haiden went to see Dr. Bryan Hudson, neuropsychologist. After several hours of interviews, observations, and testing Dr. Hudson felt he knew exactly what was happening with Haiden. I'll never forget that visit. Dr. Hudson said he believed that PDD-NOS was a trash term. He said that diagnoses is being used when nothing else seems to fit. He went on to say that he didn't feel like Haiden had PDD-NOS. (I just started at him, stunned.) He believed Haiden had ADHD (Attention Deficit Hyperactive Disorder), Sensory Integration Disorder, and Apraxia. I thought ADHD? I can deal with that. I'm definitely a candidate for ADHD myself. Sensory Integration Disorder? Yeah, I knew that and we were on are way to helping Haiden use strategies to help himself. Apraxia? What in the world is that? He explained to me that Apraxia is when the brain knows what it wants to say but the mouth isn't able to make the correct movements to say the words. I could see that. But what about the echoing? Dr. Hudson explained that Haiden repeats things when he doesn't fully understand the question. What about the lack of socialization? He explained that Haiden doesn't always know how to talk to kids since he can't get all of his thoughts out, so he avoids them. I was feeling pretty good. Dr. Hudson seemed to have an explanation for some of Haiden's "autistic" behaviors. There were just a few things he couldn't explain like why couldn't Haiden transition from one activity to the next smoothly and why was Haiden sick all the time? Why did Haiden get random fevers with no other symptoms? Why did Haiden have wicked rashes that would come and go? Why couldn't Haiden sleep? Why did Haiden have dark circles under his eyes? Why did he seem so lost? I left Dr. Hudson's office with a new attitude. My son is not autistic, my son is not autistic, my son is not autistic. (Although he continued to display several autistic symptoms, and I went to yet another specialist who said, "Yes, Haiden is autistic.") But why did it matter? It didn't? Autistic or not I still loved and cared for Haiden the same. I was still determined to help him. I realized that it didn't matter what his diagnoses was. It mattered how we were going to treat his symptoms and that became my number 1 priority.

Unconditional Love

As I continued to research ways I could help Haiden, I continuously came across information about curing autism. Even though the logic behind it made sense, it seemed too good to be true. The one thing that I kept coming back to was the yeast build up in these children's guts which caused several different bowel issues. I asked Haiden's pediatric GI specialist at Riley about this and he said that was all a bunch of bull. Of course, I believed him, he was the doctor. Three years as a mom and I hadn't learned to trust my instinct.
This time was difficult emotionally. Okay, I was an emotional disaster. I was experiencing a ton of guilt for bringing a child into the world with so many difficulties. I was angry at God for allowing this type of thing to happen. I was sad because I felt like Haiden's course of life had been forever changed. I was disappointed with the medical community because no one seemed to have answers to his illnesses. I doubted my capabilities as a parent. I was so focused on helping Haiden that I neglected myself and Brian, though Brian never neglected me. He stayed by my side supporting me 100%. He showed me that no matter what we experience, he will love Haiden and I uncondintionally and always be here for us. My mom also continued to support me. (My mom is an amazing woman and I strive to be the mom she has been.) She was always there to lend an ear and calm me down when I was a wreck. She never doubted what I was doing and always encouraged me to do what I thought was best. My family has always been my rock and I am so grateful to be blessed with such wonderful people in my life.

In February 2007, Brian and found out we were pregnant with our daughter, Ella. We were elated but nervous. Haiden also transitioned from First Steps to Developmental Preschool through the Brownsburg school district. Through the schools testing, Haiden qualified as a child with an Autism Spectrum Disorder. He continued to receive 5 hours of speech and occuational therapy a week plus all the therapy we were doing at home. We were starting to notice improvements in his speech and sensory issues but he continued to have echolalia speech patterns. I could ask him to spell his name, say his abc's, and count to 20 with no problem. As soon as I asked him a question like "What did you do at preschool today?" Haiden would just repeat, "What did you do at preschool today?" or he would give me the same answer everyday, "I played with Jacob." even if he did not really play with Jacob. Haiden also started to tell me how to get to familiar places. From preschool to home he would say "turn left, turn right, turn right, turn left, turn right" until we made it home. I was able to contact Dr. Hudson, the neuropsychologist, and schedule an appointment. Although it would be another month before we could get in. April of 2007 would turn into a big ray of hope!

Just a Reminder

Haiden, two weeks ago, recovering from autism.

Haiden, at the age of 3, with Autism

The Search Begins

Right away I requested for Haiden to get more therapy time through First Steps and we got it. I also found a speech therapist through St. Vincent so Haiden could have even more therapy. I made a picture schedule to help Haiden deal with transitions. His O.T., Tara, made social stories with pictures of Haiden in the story to help with transitions, playing with different toys, and sharing. We had "therapy" time at home as well. Brian and I were constantly working with him to improve his areas he was struggling with. I became a Google queen, I researched and researched and researched. Through my research Haiden fit the profile of a child with PDD-NOS but I was still in denial. I guess I didn't want to believe it. During this time Haiden continued to amaze us with his incredible memory and musical talent. He also continued to be sick a lot, have severe bowel issues, random rashes, and yeast infections. Through the school I work for I became familiar with a neuropsychologist, Dr. Hudson, who was highly respected. As a part of my denial I decided to get a second opinion. I didn't want to believe this was Haiden's future.

November 27, 2006

On November 27, 2006 Brian and I took Haiden to Children's Resource Group in Indianapolis. (Most of the time leading up to his visit and the actual visit are a blur to me now. After reading his report again this evening, I now know why God has a way of helping us forget things. I forgot how sick Haiden actual was.) The psychologist, Dr. Steck, spent about 2 hours with us reviewing Haiden's history, questioning his current state, and playing with Haiden. At the end of our appointment, here was her summary (in the most optimistic way ever): "Haiden is a 2 year, 9 month old boy who was referred for psychological consultation by his mother due to concerns regarding the possibility of an autism spectrum disorder. At this time, Mrs. McKinney reported concerns regarding Haiden's language delays, sensory integration difficulities, and poor social skills with peers. (He rarely wanted to play with other kids his age.) In addition, Mrs. McKinney expressed concern about Haiden's lack of imagination, odd behaviors, and echolalic (repeating what someone else says) speech patterns. Based on Haiden's developmental history, parental report and observations during this consultation, it is felt that Haiden demonstrates symptoms of a Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS)." PDD-NOS? No, no, this wasn't happening. Even though I had prepared myself that Haiden could be on the Autism Spectrum, I wasn't ready to accept it. Why? Why did this have to happen to Haiden? What caused this? What now? Brian did everything he could to comfort and reassure me but I felt completely lost. I had no idea the roller coaster of emotions I was about to go through but I knew one thing...I had to fix this.