It's the Holiday Season (video updated)

We celebrated Emma's 7th birthday!  I look at her and she is so much her own person now, definitely all the baby is gone (sniffle, sniffle).  I really enjoy her company and think she is an amazing big sister.  She really does love Josh and Kate and is a tremendous help to me.  I call her a little therapist for how well she works with Josh and she takes pride in that, helping him to use his words or learn new physical therapy moves.  There are times when she can calm him down from a meltdown and I've exhausted my patience.  Last week she told me, "Mommy, it really helps if you don't scream back at him."  Emma is inquisitive and loves to read.  She's really into the Magic Tree House series of books right now and is on a mission to collect all 42 of them.  She's got a good sense of humor and a laugh with no volume control!  Emma is her own person and confident in her decisions.  I admire that.  Before Thanksgiving break, her class had a Thanksgiving party planned and they were going to dress up like pilgrims and Indians.  When I picked her up that afternoon, I pulled around the corner of the pick-up line to see a little girl confidently wearing her paper apron and bonnet.  Before I could tell it was her, I knew that was my daughter.  I asked in the car if she wanted to take it off since I got to see her in it.  She said no and proceeded to wear it to pick up the dog from the groomer and for quite some time when we got home.  I would have been too self-conscious as a child to do something different than everyone else, but Emma knows what she likes and is happy to strut her stuff.  Same goes for the socks or headband that have nothing to do with her outfit, but she likes to wear.  I hope she is always so confident in what she believes in.

I like where we are at now and have long forgotten her two's, the meltdowns in that time were truly terrible well into her three's.  The testing, struggle for independence and experimentation with backtalk have subsided.  I attribute some to age, but a lot to the circumstances of this year.  Between the birth of Kate and our running around everywhere with Josh, we have all been forced to work for the common good of the family more than our own priorities.  I think it's been good for all of us.  So, we're on to the age of 7...

Getting into the holiday spirit has been slow going, but we made it through.  Our college friends lost their newborn baby right before Thanksgiving.  She was 9 days old and did not survive surgery for her spina bifida.  We went to the funeral the weekend after Thanksgiving.  It was one of the hardest things I've ever done.  I cannot imagine losing a child, but our friends handled everything with such amazing faith, strength and grace.  Sometimes, we need perspective like this to realize we don't have it so bad.

Emma nagged us to get the tree up the following week.  We got it up on a weeknight and set out the ornaments.  The next evening, she helped teach Josh how to put ornaments on the tree.  It was pretty sweet to watch.  When I looked at the tree afterward, the majority were laying on the tree rather than hanging, and there was only one ornament casualty.  I usually love Christmas, but had a hard time getting in the spirit this year.  I mailed cards a few days before Christmas and for the first time ever, had to finish shopping on Christmas Eve as a rare Texas snowfall was coming through.  Hopefully, I'll be on top of life better next year to be able to enjoy it more.

Danny's childhood friends were in town for Christmas and we were able to visit them.  Josh really takes to some people and he took to our friend, Dave, immediately.  The entire evening, I kept hearing, "Come on, Dave!  Sit down, Daddy."  Josh wanted to play with Dave.  Period.  It's hard to turn down because Josh's calls come with a huge smile and great eye contact.  Who can resist?  Dave was great with him and I think they both slept well that night after playing ball for hours.

Christmas was good.  Emma woke up a little after 7:00 and came in our room.  We sent her to wake up Josh since he'd be less likely to scream at her.  She brought him out and he picked up on the idea of opening presents very quickly.  For each gift, he requested with, "Open it." and enjoyed seeing what was inside.  Since we had a rare snowfall, the kids went out and played in it and had a ball.  We went to my parents' house that evening and Josh couldn't wait to open presents.  I had him and Emma bring the presents out into the family room.  He quickly ran back and forth between the rooms because that's what he knew he needed to do in order to open them up.  On his way back with an armful of presents, my mom got in his way and gave a commanding, "MOVE GRANDMA!"  We got quite a laugh!

Josh gave us a Christmas present.  We were waiting to eat dinner and I told him to wait for us to bless it.  Usually, when we pray at dinner time, Josh does the sign of the cross (waves his hand up and down, palm out like a priest) and folds his hands as we say the prayer, then does his cross-wave at the end.  Sometimes, he'll say "Father, Spirit, Amen" (rather than Father, Son, Holy Spirit, Amen).  Well, for Christmas, he wasn't up for waiting for everyone to sit down, so he started the prayer and said it himself.  We all cheered for him so he proceeded to say the blessing three more times and my brother got a video of one.  Most of it is unintelligible to most, but we all knew what he was doing.  It was the best gift I got for Christmas.

When we got home that evening and got the kids ready for bed, Emma said it wasn't her bedtime yet.  We were puzzled because the kitchen clock said 8:30.  She said that her bedroom clock said 7:30.  We figured Josh reset it when he played with it.  Emma got a little irritated and said, "That's why I had to wait so long to wake up this morning!"  Ha! Ha!  We just thought we were lucky she slept in.  Thanks, Josh, and we'll have to remember that for next year.

Kate has really been coming to life. Here words so far are mama, dada, Emma, ball, hi, and bye. She is pulling up on everything, likes to walk holding our hands, and is working on letting go when standing up. I'm betting she'll be our earliest walker. Emma walked just after she turned 1 and Josh walked at 15 months. Kate is still easy-going, but I see her get a kick out of making Josh scream. She'll crawl to him when he is playing with a toy. Josh will scream, get up and move a few feet away. Kate follows him and the process repeats until Josh gets tired of it and abandons the toy. At that point, Kate wants nothing to do with the toy. This sibling rivalry will be interesting, as we experienced little of it with four years between Emma and Josh.

On Christmas Eve, I was sent the link to the blog of a mom who is very active in the Texas autism community. She has a beautiful blog entry for Christmas. If you have the time, I really encourage you to read it. Many of her writings have inspired me and many others. We have our challenges and I realize that sharing Christmas with Josh was really a blessing that many families dealing with autism would give anything for. Autism is a spectrum. Children with, have such a range of abilities. Parents have such a range in attitudes and emotions in dealing with it. I only know how to cope with our situation, but I share in the emotions of other parents I have met. Michelle's blog really touched us and beautifully depicts how through suffering, we learn to truly love. 

Merry Christmas and Happy Holidays!  My New Year entry to come in 2010!

Happy Birthday, Josh!

The day has finally arrived! Josh is three! For how much we've been through this year, I have had to take a step back several times and remind myself how young he is. He is still a baby. Since Emma was a baby, we have attended several birthday parties for her and her friends. I always thought a birthday party at The Little Gym was the perfect place for a three-year-old party, and pictured that was where we'd celebrate Josh's third birthday. Well, the Little Gym by us is closed now and my vision of a perfect birthday party for Josh was different than I had planned. However, my expectations were far exceeded. The months preceding Josh's birthday, I kind of dreaded him being three. I worried that the gaps between him and typical kids would be widened and more obvious. I worried that he wouldn't get the idea of a birthday party and I pictured him screaming when we sang Happy Birthday to him.

I worried a lot for nothing. Josh has progressed in so many ways and far exceeded my adjusted expectations for what he would likely accomplish by three. His party was at our house and we had my family and Danny's family over. After church, we stopped at the store and got balloons for him and told him we were having his birthday party. He said "party cake" and "tummy hurt." When we've gone to other birthday parties, I've given him his treats and told him that the birthday cake would make his tummy hurt. So, I explained that I would make him a special cake that wouldn't hurt his tummy. I bought the Thomas the Train decorating kit from the grocery store bakery and made his special cake. I had visions of it looking perfect, but the frosting barely held together and I had to forgo the double layer cake for a goopy single layer cake. It didn't matter. Josh was thrilled for his day. He loved his Thomas cake and squealed with delight as we sang to him. He opened his presents and was happy to play with is new toys.

Josh's birthday was perfect. He's worked so hard this year and I am so proud of every single accomplishment he's made. This year, he started to say "Mommy" again to now starting to initiate and engage in simple conversations. We've gone through so much together to accomplish these things and each are like little miracle gifts as our expectations changed. This year might not have been what I had envisioned it to be, but I now take greater joy in the things I previously took for granted or assumed would be. Seeing Josh so happy brought us much joy. We have grown in so many different ways thanks to Josh. He's a blessing to our family and we look forward to what the next year will bring for him and our family.

"This is my dearly loved Son, with whom I am well pleased." Matthew 3:17

October? What October?

I've had multiple people mention the last week that 9/25 was my last blog entry. Whoops! This blog break was brought to you by a weekend of rest at my parents' house, Danny travelling, Josh not sleeping at night anymore, several assessment appointments with the school district, and the flu running through the entire family! I still haven't gotten ahead on cooking and laundry since we all had the flu, but we're getting back on track again. At least we all weathered it well and are recovered.

I started off the month with a relaxing weekend with my parents. Danny took a Friday off of work. Kate and I headed to my parents' house on Thursday night and stayed there until late afternoon on Saturday. It was nice to have some time to relax, take a nap, and my parents took good care of me with good company and wonderful food. Much needed break!

Emma is doing well in first grade! Her reading has really taken off and impressed us. She's not just getting through the words now, but she reads as if she's telling a story and gets what is going on. She is wonderful with Josh. In August, we did a training session at Josh's ABA therapy center that included Emma so she could learn what to say to him and how to help teach him to take turns and to respect things that are hers. She is a great role model to Josh on how to play and to use his imagination. She's constantly modelling new words to him and includes him in her imaginary play so well. Last night, she built a "tent" between the couches with a blanket. She had Josh going in the tent with her and they went to sleep. He loves Emma so much and I couldn't ask for a better big sister. She's such a great help to me, just by being a helpful big sister, willing to help with Josh or Kate very often.

Kate has started to crawl! At first, she would make a scoot or two to get to a toy, but once it clicked, she's all over the place on a mission. She and Josh have had their first "fights" over toys. She'll take a toy from Josh, he'll scream and take it back, and she'll scream. What an attentive baby - her eyes are following everything that is going on and she is very intent on being involved. I am so thankful for Kate being such a good baby. I've been taking her to Josh's therapies and several assessments with the school district this month and I never have concerns about taking her with me. I call her my portable baby. =)

Josh is continuing to progress. I am getting compliments from all of his therapists. I filled out a follow up form for Thoughtful House this week and here are the areas I highlighted as progress:

• Increased expressive and receptive language
• Improvement in behavior problems and head-banging
• Improved eye-contact
• Improved sensory issues. We can drive over speed bumps without screaming or even a mention of it in the car! We can drive next to a semi. Sounds that used to send him overboard into head-banging bother him much less.
• Expressing needs better and physically coming to get us occasionally when he needs something
• Reduction in visual stimming (running next to a wall or surface and watching out of side of his eyes, or watching fans and objects that spin for prolonged periods of time)
• Playing with more toys appropriately
• Improvement with obsessions with fans, turning them on/off and things that spin. Also, improvements with needing to carry objects with him frequently and obsessing about what toy he goes to bed with.
• He has started to sing songs again and allowed us to finish reading an entire book to him.

We have attempted getting out more and facing situations we would have avoided in the past. We went to the big pumpkin patch that we have gone to since Emma was almost 2. It's very crowded and we didn't think Josh would handle it well at all. We were wrong and he had a great time, including going on a tractor hay ride where he sat with Emma with no issues with the sound of the tractor. He also went on a bounce house slide with Emma three times! Josh has never cared for bounce houses at all and we were floored he did it, especially in a crowded place. We couldn't exactly get his attention for pictures, but hey, I can't have it all, can I?

Because we started speech services through the state ECI program (Early Childhood Intervention) when Josh was 19 months old, they fed us to the school district for evaluation and to qualify for services when Josh turned three. So, this past month, Josh and I have had several meetings and evaluations with the school district. I did an intake form assessment with a diagnostician, the autism evaluation team performed the ADOS autism diagnostic test at the school, the autism evaluation team observed Josh at our house with a few friends over, the physical and occupational therapists evaluated Josh at the school, and the special education teacher spent some time with Josh to create goals for him. I also had a meeting with the autism evaluation team to go over their detailed report on Josh. They diagnosed him with PDD-NOS (Pervasive Development Disorder - Not Otherwise Specified) on the autism spectrum, which was the same diagnosis we received from the developmental pediatrician. They were very thorough and I was impressed with their observations of Josh as well as the details of their assessment. They really praised the path we were on and how much Josh has accomplished with early intervention. It was nice to hear such encouraging words and their positive outlook for Josh's future. I also met with an in-home trainer from the district and took a tour of the school they were recommending Josh attend PPCD class (Preschool Program for Children with Disabilities). We had our ARD meeting, where we agree on district services to be offered to Josh. Prior to going to the ARD, I learned of some insurance changes that will be in effect in January. The Mental Health Parity Act requires that insurance coverage for behavior health have comparable limits to that of medical health. ABA therapy is considered psychiatric therapy (I'll save my thoughts on that for some post that I'll probably never have time to write). Our insurance plan covers 30 behavior health visits/year, 60/year for treatments received more than once a week because they are considered "intensive." Anyway, I have confirmed with our insurance carrier as well as our benefits administrator at my husband's work that we will have NO limits next year!!! We have been planning to pay for the majority of next year and trying to figure out how, so this is a HUGE relief. ABA is the most expensive treatment. However, in conjunction with his medical treatments helping him feel better and able to learn, ABA has changed our lives. Anyway, all of that is to say that we are opting to keep Josh in the ABA center 5 days/week next year and will work with the school district for speech services. He starts speech two mornings a week after Thanksgiving. I am planning on continuing with his private speech therapist once a week until we see how the district therapist goes. As in all therapies, it depends mostly on how your child clicks with the therapist.

To end on another high note, Halloween was great! I didn't know how to best handle it. I can't break traditions Emma loves - she has already sacrificed a lot (diet changes alone are enough!!!). We tried getting Josh to pick out a costume, but he was more interested in the Halloween snow globes on display. So, I bought him a Superman costume and we tried to get him to wear it for Emma's school carnival. We put it on, he looked down at it and said, "off." I took it back and didn't know if he understood what we were talking about with Halloween. It's one of the communication challenges. Sometimes, we wonder if we're even close to being on the same page, and other times he floors me with his very clear understanding of what is happening around him. I thought the candy would be torture for Josh. We really have to watch sugar with him since it feeds yeast issues he has in his digestive system. Initially, we planned on having him help pass out candy and if it became too much for him, we'd put it on the porch and be done for the night. The more I thought about it, there was no way Emma's friends were going to come over and leave the house dressed up without him having issues. There is always a way to include him and my plan was for him to go on a wagon ride and bring his favorite snacks for the ride. So, an hour before her friends came over, I asked if he wanted to be Greg from the Wiggles (we had the shirt from when Emma insisted on being Greg when she was 3). Josh went straight to his room and worked as hard has he could to get his clothes off and find the Greg shirt. He rode in the wagon and a few houses in, got up to trick-or-treat. I took a breath preparing for the tantrum to eat the candy, but he put it in his pumpkin bucket and proceeded to pull the wagon himself. For a few blocks, he just pulled the wagon as if he were on a mission to make the wheels spin as fast as he could. Out of the blue, he dropped the handle, picked up his bucket and went up to a house. I prompted him what to say and after his "thank you" he marched back to the wagon, placed his bucket in it and pulled it until he reached the next house that looked right to him. When we got home, I have him one of his diet compliant cookies and all the candy disappeared to an Emma-disclosed location. I really enjoyed that night. I will look back on it often to remind myself not to underestimate what Josh understands and to motivate myself to give Josh more opportunities to surprise us. Even though Josh didn't "get" Halloween the same way other kids did, he had a good time and he felt a part of what all the other kids were doing. He was so proud and deliberate on his mission. I was proud, too.

Major milestones

Quick post to share exciting accomplishments from this week! Josh's language has been reaching a new level. He has started to tell us words about his day! He went to his therapy on Monday. In the evening, he said to me, "New friend. Eric." When we returned to therapy Wednesday morning, I asked his therapist if a new friend named Eric started this week and she confirmed it.

He had his speech therapy yesterday and she commented on how much he was talking. She said his other therapists stopped them in the hallway because they couldn't believe how much he was talking! She said he did so many new things in therapy yesterday that she couldn't write them all down. The rest of the day was horrible with raging fits and head banging like I haven't seen in months, but I'll let go of that with today's accomplishments.

Tonight was the first time Josh let me read an entire story to him!!! We "read" books every night, but usually Josh has complete control of the book and will point to a few pictures and sometimes name them. We were excited to get to that point. I often try to read to him (honestly, a little discouraged to try some days), but have never gotten past reading more than one page. We got through all of "How animal mommies love their babies" tonight.

After reading and saying prayers, we talked in bed. He said "soccer ball" and I told him that Emma has another soccer game tomorrow. He said, "Nana, Uppa." referring to Danny's parents going to her last game. I told him that Nana will be there and that Grandma and Grandpa were coming too. I said that tomorrow is Uncle Chris' birthday and he would come over to celebrate tomorrow as well. Josh said, "Cake. Candles. Hot. Sing."

I am just on cloud nine!!! So often Josh's speech seems so memorized and often jumbled. For example, I thought I taught him to answer what his name was and how old he is, but he often doesn't distinguish the two questions apart. He'll repeat phrases he knows, but they don't always match the situation. But this new speech where he is telling us about what he did, what his experiences are and what he likes, is so exciting.

I have often wondered what his third birthday will be like, if he would understand or care about the celebration, or get excited about opening presents. I have renewed hope that there is still more to come. And, we'll just have to wait and see what his 3rd birthday will be like.

Our long awaited visit to Thoughtful House

Last week, we made our long awaited trip to Austin to go to Thoughtful House. We saw Lucas Ramirez for two hours, then had an hour follow up with the nutritionist. We had been anticipating this visit for such a long time. My parents travelled down with us so they could help watch the girls while we had our appointments with Josh. We could not have done it without them and we feel blessed to have their support!

A few weeks ago, we had sent off a stool sample for analyis and got the results back a few days before our appointment. It showed a high level of bad bacteria as well as strep in his digestive system. The lab also tested for which antibiotics and natural remedies the strains of bacteria were sensitive and resistant to.

During our visit with Lucas, we went through Josh's medical history, all lab work as well as our current assessment of his behaviors. I had completed these assessments back in July as well when we started processing paperwork to go to Thoughtful House. It was nice to see how in just two months there were areas I had previously categorized Josh as moderate-to-severe that I now categorize as slight-to-moderate.

Our action plan is to treat the bacterial and strep infections in Josh's system, adjust his supplements we had started with the nutritionist here in Dallas, and follow up in a few months. One of the things that I loved about Lucas was that he offered us tips on handling behavioral issues with Josh. Since he has a son with autism, he had been through self-injury and severe tantrums. Josh threw a huge fit in his office and he was great in giving us suggestions on handling it, as we were emotionally attached to the situation, and he wasn't. I have often wondered how to tell the difference when Josh was hitting his head into the wall or floor because he was in pain vs. to get attention from me.

He was great to talk to and also corrected me in saying sorry to Josh when he didn't want the snack I had for him. He pointed out that I didn't do anything wrong and by apologizing to Josh, I was implying to him that I did something wrong. We ask him to say sorry for hitting his sister (doing something wrong), so when I say sorry, he'll take it that I did something wrong. Seems obvious, but following in generations of apologizers in my mother's family (sorry,mom!), "sorry" is a word that flows out of my mouth all too frequently. This makes perfect sense because Josh is extremely literal. In the car, I had to hit my brakes suddenly and the motion made Josh scream. I said, "Sorry, Josh." Quite often, when I hit the brakes suddenly, he'll scream, then say, "Sorry, Josh." That was what I taught him. So, it was good that things like this were pointed out to me. It makes sense.

As we started all our assessments and treatments earlier this year, I expressed a feeling that we were somewhere in the middle of the typical world and the autism world. Many ASD kids are far worse off than Josh. Often, in ABA therapy, I'm told by other parents how lucky we are that Josh is verbal. There is this feeling of guilt being around other parents who covet the simple words coming from Josh's mouth. My parents got to see that on our visit. While they were in the waiting room with the girls, they saw many kids coming and going and visited with some of the families. They had tears in their eyes as they told me about some of the kids they met with much more severe symptoms and understood what I meant.

I'm in a different place now emotionally. I think I've gone through my phases of grief, or at least the initial round. August was my month to be angry and depressed, but September has been my month of acceptance. I feel like we are coming around to seeing more of what Josh can do rather than what he cannot. We are learning to be patient and compassionate rather than selfish (never-ending work to do here). We are seeing the blessings that have come from this. While we are doing everything we reasonably can for Josh, I accept that there is no "cure" and he may never be typical. However, he has overcome so much already and I am choosing to move forward without an outside benchmark of his success. He has a great sense of humor, an incredible memory, a smile to die for, and is working so hard to do the right thing. At two, I think he's worked hard to overcome so much.

I have been reading Ten Things Every Child with Autism Wishes You Knew. It is written so well and really helps to bring out compassion for Josh rather than frustration. I really think this book has helped me come around more on focusing my efforts on just loving, supporting, and accepting Josh. I begin each day with a prayer for patience, strength and love. One day at a time.

So disappointed in NBC

I'm so disappointed in the Dateline special, and am almost sorry I asked friends and family to watch it. Over the last several months, we have been surprised that there seems to be a lack of media interest in autism treatments. Our ears perked up on a July morning when we heard a blurb on the Today show talking about a study on the link between GI issues and autism. We ran to the TV to hear Dr. Nancy Snyderman follow up saying there is no link and parents should stop wasting time and money with special diets and dietary supplements that do not work and will not help their children. My jaw dropped. Diet changes alone had been helping Josh dramatically. So, we looked up the study ourselves and read it. The commentary along with the study didn't close the door on the link and said the study showed there is more to study.

Here is a link to the interview where Dr. Snyderman puts her personal spin on the study it doesn't appear she read:
http://today.msnbc.msn.com/id/26184891/vp/32168581#32168581

Here is a link to details on the study performed:
http://www.webmd.com/brain/autism/news/20090727/gi-problems-and-autism-no-link-found

We were so excited to learn that Dr. Wakefield and Thoughtful House were going to be featured in a major media outlet after being so disheartened with the coverage in July. However, when I saw the 10 minute clip on Friday's Today show, it appeared they were going to turn the story into a debate about whether or not vaccines cause autism. So, rather than a light-hearted update on my family in today's blog entry, I feel the need to tackle my view on how the media is handling autism and the vaccine debate.

As a parent, I want to see the hope in treatments for autism and the show barely touched on the actual treatments for autism that Thoughtful House and other DAN (Defeat Autism Now!) doctors perform. They made it seem that parents were following Dr. Wakefield because he had a sympathetic ear on what caused their child's autism. I took offense to that. Yes, parents want to understand what happened to their child, but more importantly, we want every opportunity to TREAT our children. Parents are not stupid people! Mainstream medicine and the media tell parents that autism is a psychiatric disorder, for which there is no treatment. That is not the case as parents of autistic children and these doctors are taking the time to learn and explore treatment options that follow biomedical practices. If Thoughtful House has patients from 48 states and 48 countries, it is because they are helping autistic children! Why on earth would there be this large of a following for treatments not covered by insurance if there were not results? I might have been stupid enough to blindly listen to past pediatricians who vaccinated my child with 5 vaccines at the same time he prescribed prednisone, albuterol, polmicort and antibiotics, but those days are over for me and my family. I am choosing to be educated about our health and make my own decisions rather than blindly trusting what a medical association says is "safe."

As for my thoughts on the topic of vaccines, I think they are a piece of the puzzle, but not the sole cause. Josh had health problems almost since birth, and in our autism puzzle that was his predisposition. Once I figured out his food allergies by doing elimination diets while nursing him (eliminating all common allergens from my diet and testing his reaction by eating them), I got his wheezing and allergy issues under control. It was his second year when the ear infections started to kick in, along with more eczema, runny noses, viruses, herpes simplex and so much more. I have obtained copies of is medical records since birth and taken a look back and he had a rough second year and took more antibiotics than I had recalled. I think his turning point was around 18 months old. Our new pediatrician put him on a slower vaccine schedule and her policy was to give measles, mumps and rubella individually rather than all together since she had seen the MMR vaccine change kids in her practice. She also did not give more than two vaccines at one time. So, at 18 months, Josh received just the measles and IPV vaccines. About 6 weeks later, the viruses kicked in, followed by the herpes simplex virus and it went downhill from there. His speech and awareness regressed, head banging ensued. We called ECI for an evaluation when he was 21 months old and it's gone on from there. His speech, imitation, response to his name were gone. Over the months to follow, there was some regression and some progress and our concerns grew from there. He continued to get ear infections and we continued to give him antibiotics. He spent his 2nd birthday watching the helicopter blades spin on a ride at Chuck-E-Cheese for 45 minutes. I didn't think it was odd, I thought it made him happy. His obsession with fans and things that spinned grew exponentially. At his 2-year checkup, we had enough behavior concerns that his pediatrician talked more seriously with me about vaccines and we opted to not do any at that checkup. Christmas was an all-time low. He was on antibiotics and went absolutely crazy! He was either crying or banging his head for days. I stopped the medication and he improved, but the head banging and severe tantrums continued for months. We expressed our concerns to our pediatrician and she encouraged us to perform metabolic tests on Josh, as she had seen digestive and malabsorption issues cause behavioral issues in kids. We performed that lab in March, 2 weeks after Kate was born and several weeks before we read and suspected autism. So, we are truly blessed our pediatrician was more conservative on vaccines, gave alternatives to antibiotics when we started having issues with his behavior, and that she was familiar with biomedical and nutritional testing. We were already on the path for treatment before we knew of autism.

I like how our pediatrician puts it best. Everyone is born with a garbage can to collect the toxins they are exposed to. Some have large garbage cans and some have small ones. Our job is to make sure we account for those kids with the small garbage cans. Basically, when there are more toxins than a body can handle, they get stuck in the digestive system and can leak into the bloodstream and the brain. So, do I think vaccines cause autism? No, not in a healthy child with a healthy immune system. I do, however, believe that the medical community owes it to parents to research these theories further. With 1 in 150 children being diagnosed with autism and 1 in 94 boys, we owe it to our future generations to figure out why these numbers are so high. Something is going on, and rather than shutting the door on researchers who are trying to figure out why, doctors should be lining up to figure out what these doctors are doing to reverse the autism diagnosis in so many children! As an adult, you are told not to get a flu shot when you are sick. However, pediatricians continue to prescribe antiobitics and administer vaccines for children in the same visit. I can't tell you how many times Emma was diagnosed with an ear infection and prescribed antibiotics in the same visit she was administered four vaccines.

We need to be smarter people. We don't care about what we eat, what we clean with, or the chemicals on our carpet until they affect us. We trust that when a doctor says we need a medication or vaccine and that it is safe, that is true. They are smarter than we are, right? No. There are so many things that I wish I knew before having children, but I'm looking forward, not backward. But I do want others to think about their health and that of their children and know that you don't have to do everything a doctor tells you. Read about vaccines!!!! Read how they work to get your body to build antibodies to a given disease. Read about the diseases they are made to prevent and consider an alternative schedule. YOU get to choose the vaccination schedule for your child, not a doctor. If your child has an infection, a virus or their immune system is obviously busy fighting something, your can wait to vaccinate until the next appointment! I am hearing of more pediatricians doing this, most often after they have had a child close to them diagnosed with autism. Do our children need 36 vaccines by the age of three, more than any other country? Is chicken pox life threatening enough to warrant the vaccine ingredients to be injected in your 1-year-old? Read the ingredients on the vaccines.

I am SO thankful for the parents and doctors who have gone before us and pieced together the underlying health issues and how it can link to autism! I cannot imagine we would have made a fraction of the progress we have to date if there were not already proven paths for us to jump on. So, as I am disappointed in the reporting of NBC on this topic, it hasn't changed a thing except my skepticism of their objectivity. I cannot wait to make our first visit to Thoughtful House in just under two weeks! And, I look forward to the day when the news about biomedical autism treatments gets the front page treatment it deserves!

Here are links to responses to the Dateline episode from Thoughtful House and Dr. Wakefield:
http://www.thoughtfulhouse.org/newsletters/2009-08a.pdf
http://www.thoughtfulhouse.org/newsletters/2009-08b.pdf

Enough on this tangent. I felt like I needed to address this after being prematurely excited about the Dateline episode.

Coming up, Emma coverage! She started first grade and is such a big girl!

Thoughtful House to be on NBC Dateline this Sunday

Very exciting news, I hope! Thoughtful House, the autism treatment center we have started to work with for Josh and will be visiting in a few weeks, will be featured on NBC this coming weekend. This is a HUGE deal as the "alternative" and biomedical approaches to treating autism are rarely portrayed in a positive light in the media, mostly due to these approaches placing some blame on vaccines, I believe. So, for those of you who are interested, set your DVR and hope that this invaluable information can be presented in a fair manner so that autism treatment and prevention can be taken to the next level. With 1 in 150 kids and 1 and 95 boys being diagnosed with autism, we need to pay attention and get to the bottom of this epidemic.

Here are the times:
- 10 minute segment on Today show this Friday, 8/28
- 10 minute segment on NBC Nightly News on Saturday or Sunday, 8/29 or 8/30
- 60 minute Dateline special on Sunday, 8/30

Here is a link to a letter from Thoughtful House with their thoughts on this opportunity:
http://www.thoughtfulhouse.org/newsletters/2009-08.pdf

Didn't realize how long it has been

Wow, I didn't realize how many weeks I let go by without an update. I am not sure where August has gone. I finally spent a few weeks to deal with a lot of my feelings and grief that I hadn't dealt with yet. I put aside things around the house, which I am still paying for (and I am SO sorry if I am delinquent on a thank you note to you!) and took time for myself. I think I spent the first several months in action mode after we knew Josh's diagnosis and I needed to deal with all my feelings I brushed aside during that time. I've had my angry, sad, and just plain tired days. I needed that time, and I'm sure these times will come and go, but I'm getting back into being a bit more productive again.

We have been seeing marked improvements in Josh, as have his therapists. Josh's speech is improving in clarity and he's picking up more and more phrases. He is doing a great job with puzzles now as well as picking up the idea of matching, sorting and grouping. I have also been able to get some parent training while Josh is in his ABA therapy. It has been helpful and I've gotten some great pointers on dealing with behaviors that are difficult for our family. We have already seen improvements with sharing toys, playing with Emma, reducing biting (a sensory issue, stim rather than behavioral so my tactics weren't helping), and getting to bed without 20 trips around the house guessing which ball he says he wants to sleep with (his pronunciation for baseball, basketball, soccer ball, and bouncy ball are almost indistinguishable).

Josh had an issue with ingrown toenails on both of his big toes. We did all we could to treat them without antibiotics, but were unsuccessful. He ended up having to take a round of antibiotics, accompanied by an anti-fungal since he'd likely have his yeast overgrowth issue come back in his digestive system. He finished them, then broke out in hives all over his body. It took me awhile, and with input from our local nutritionist, figured out he did not tolerate the sulfate-based antibiotics well. Anyway, his toes have cleared up for now, and hopefully we have dodged the need for surgery to correct his wide nails until he gets older and won't need sedation.

He recently had his 1-year evaluation with ECI (Early Childhood Intervention). It was 1 year ago when we first had him evaluated because we were concerned about his speech delays and head banging. Then, ECI said his speech delay was about 3 months behind. We thought it to be more by most standards, but it was three months by state standards. Now, his speech is about a year behind, but his cognitive language is only a few months behind. It's greatly helped because he knows his colors, shapes and letters.

Josh has an amazing memory (as does Emma) and attention to details. It was so easy to teach him his letters and he's pointing out letters and shapes everywhere we go. He points out the "triangle" every time we see a yield sign in the car. I remember when Emma was two, I was amazed by her memory and sense of where we were at. She would point out where different places were located as we drove through town. She knew EVERYONE's names. Josh has started to do the same. When we drive down the main road out of our neighborhood, he points to our friends' neighborhood, says, "That way. Jennifer and Nate." He points toward their street. As we drive by the road that we used to take to daycare he says the name of our former daycare. Yesterday, when I took him to his ABA therapy, a car pulled up next to us and Josh started saying, "Hi Jake!" I talked with his mom. Jake isn't the child who goes to Josh's therapy center, but a sibling! I was amazed. It just gives me more confidence that he knows so much that is going on, even though we struggle with communication and socialization skills. If we can keep progressing like this, I know we'll be more and more amazed by all that he has inside of him. I know he's a smart and loving boy and I hope he recovers fully someday so that everyone can instantly see what we see.

I had my first phone appointment with the Thoughtful House nutritionist. She was great and gave us some adjustments for his diet and has ordered lab work to check his metabolic levels. I'll be interested to get those results and see how they compare to the initial labs we had done in March. She also gave me some great suggestions for hiding more vegetables in foods for him. I've turned it into a game with Emma, since she's liked a lot of these new recipes as well. She's the taste tester to let me know if the food tastes good or not, then I have her guess the hidden vegetables.

So, now that I'm getting our house and life back under control again (relatively), my blog plan is to blog more often and write less each time. I let my ideas pile up, then figure I don't have enough time to write about them. Emma will also be back in school, so I can get updates done during nap time, I hope. I have tons of Emma stories to share about our summer home together, as well as updates on Kate as her little personality is showing more and more each day. Emma's off to first grade on Monday and is excited about going back to school. I am going to miss her. She is great company going to Josh's therapies and has been a real trooper going all around with us with relatively little complaining. She's given us themes for our weeks, created adventures and games for us to play, helped me with Josh's therapy exercises and provided some good laughs. So, I've loved having her around and I'm sure having her back in school will be easier in some ways and harder in others.

To end on a funny note, Josh's occupational therapist had to explain part of his therapy to me in case it was replicated at home. Josh was completing a farm puzzle, one that we have at home as well. She said he started making the animal sounds for the farm animals and she encouraged it. He got to the goat and stopped. I told her he probably stopped because I was never sure what a goat says when we did the puzzle at home. She didn't either, so she said she told him, "Goats are always eating. Chomp. Chomp. Chomp." Josh repeated back, "Hump. Hump. Hump." We got a good laugh.

Blessings,
Bonnie

Good progress and official diagnosis

I am SO overdue on a post. We can blame Kate for deciding she doesn't want to go down for the night until closer to 10:00. By the time dishes are done, I haven't really had the energy or inspiration to write. We can also blame the Bachelorette since I'm hooked watching it Monday nights. Enough excuses. Kate and Josh are both napping, so I'm going to get a go on an update.

We are off and running on all of Josh's therapies. He's been doing his ABA all day Tuesdays and Thursdays for about a month now. He is very happy there and I was able to observe him by camera last week. He is responding very well to the therapists and enjoys the individual attention he gets. Some of you have asked for more details on ABA and what he does there. ABA is behavioral therapy to teach him how to behave and is an individual program based on his development. His current program includes the following:

1. Receptive comprehension. Recognizing names of objects, following commands, etc.
2. Identical matching. Putting block puzzle pieces into their corresponding spots, matching cards, objects.
3. Manding. Teaching to make requests. They set up scenarios or take natural opportunities to get him to request what he wants.
4. Fill-ins. A phrase is started and he fills in the blank, such as "Ready, set, go." "I love you." "A cow says moo."
5. Play time. How to socialize with peers. When we were observing, the therapist set up a scenario where a peer had a toy Josh wanted and worked with him to request it.
6. Spontaneous imitation. Copying what someone else is doing. We have seen HUGE improvements here! Being able to copy and mimic someone else's words and behavior is a critical step in language development.
7. Instruction following.

Josh is also getting 30 minutes each of physical, speech, and occupational therapies. I get a lot of homework from these sessions and we work on incorporating exercises into games each day. Josh has improved immensely in walking up stairs and often wants to do it by himself, so we spot him.

We continue to see many improvements in other development! Josh is making eye contact with us when requesting to watch a show. He gets the remote, comes to one of us, looks in the eye and says, "Watch Barney, please." And, he's figured out that a smile makes us a little more likely to say yes. He has a long way to go on eye contact, but it's definitely improving. Another exciting moment was when we were at the doctor's office (not the HORRIBLE visit I mentioned on Facebook!). There was a toy car in the room. Josh pushed it around and made car sounds. Typically, he pushes cars back and forth to watch the wheels turn around, or picks them up to spin the wheels with his hands and watch them spin. So, this is a big step in "appropriate play" in our new world lingo.

He's been throwing out several longer phrases. He was playing with a toy vacuum recently. He wanted it on and said, "ON." I told him, "You can turn it on." He said, "I can turn it on" and proceeded to turn it on. Very exciting! The most exciting verbal expression from the last two weeks was last week. There was a small package at the bottom of the swim diaper box. It had a small blow up beach ball in it. I set it on the table while I got him dressed to swim. He pointed to the package and asked, "What's that?" He asked me two times! This is exciting because Josh initiated the conversation and asked me something. For all of the language Josh has been building, it is usually naming objects or requests for things he wants. So, for him to initiate conversation was extremely exciting!

I mentioned that Josh is starting to imitate a lot more. Emma hurt herself last week can came over to me crying. Josh was right behind her copying her every sound and move. Emma touched her head and cried. Josh touched his head and cried. Next thing I know, I am hugging one child on each leg, with echoing cries. I chuckled my way through that situation.

I have been reading about Texas laws on insurance coverage for autism treatments. For years, parents have been avoiding getting an autism diagnosis because it shut the door on insurance coverage. It was treated as a mental disability that was not treatable. Texas and several other states have passed laws in the last two years to require insurance companies to cover autism treatments including ABA therapy. Our insurance covers 30 visits/year without the diagnosis, but with a diagnosis will cover 60 visits/year and that can possibly be extended depending on how much is spent on our other therapies. One of the ladies at the ABA therapy center Josh is at, helped us work through insurance coverage and with his autism diagnosis, we are currently approved for 60 visits! I cannot begin to explain what a relief this is and I just know God is walking me through this journey we're on.

The last few months have been an absolute blur. We went from picking up on there being more going on with Josh than a speech delay, getting metabolic testing, to starting to read about autism, to realizing he had it, to figuring out what that meant for us and how we were going to deal with it. As a mom, there is such an emotional connection to your child, that when something isn't right with your child, you feel it too. We got this diagnosis from the pediatrician and were given a packet of resources and told that she'd write referrals if we needed them for the therapies we decided on. I was so lost. There were so many things to understand, so many decisions to make, all while grieving for what this means for Josh's future. I feel like a switch turned on inside of me. What mattered the day before didn't matter anymore. Nap time and after getting the kids to bed, I was online reading about autism, reading books from the library and just absorbing everything I could. I had a pit in my stomach and waking moments at night would flow countless autism words and treatments through my head. I prayed, but even that was a blur. At some point in this, God gave me peace. I hit a point of overwhelming peace and knew that Josh would be okay. I don't know what "okay" will look like, but I know we'll be fine. God took over at some point and as we've hit critical decision points, I get these overwhelming feelings that tell me what to do. I can only explain it as faith. I find this important to share, as you have all been so complimentary of our treatment path for Josh, but I have to share that it has been nothing I have done. I have felt lost quite a bit of the time and if it weren't for all the angels God has sent along the way, I would be a total mess. God sent me angels to help me research, listen to my theories about new symptoms and rashes, talk through treatment options, figure out how to fund treatments, give me words of love and encouragement, and also to treat me like I am still Bonnie.

Lastly, we got Josh's "official" diagnosis from a developmental pediatrician. We weren't going to bother with the label since we were just worried about getting Josh help, but with Texas laws, the label helps us get additional insurance coverage for Josh's therapies. The diagnosis for Josh is PDD-NOS which stands for Pervasive Development Disorder-Not Otherwise Specified and is on the autism spectrum. He scored a 10 on the assessment. The cut off for the autism spectrum is 7. 12 and over is considered classic autism. The doctor was extremely nice and took his time with us. From the emotional side, it wasn't a shock to us and based on my reading, I knew the diagnosis. He was very complimentary on the treatment paths we have chosen for Josh as well as how early we have been able to intervene. He also found merit in the theory that malabsorption and digestive issues can cause kids to end up on the autism spectrum. He said Josh was extremely analytical and smart and was very optimistic about his prognosis for recovering and progressing in his development. We will benchmark again in a year and he felt hopeful that "Josh will be a different child the next time I see him." He recommended some genetic testing to rule out some of the potential causes of autism and also so our kids will know if they are carriers for one of the genetic causes of autism. He also recommended some testing to further confirm malabsorption issues. I'll review all of that with Thoughtful House when we head there next month.

Kate is turning into Laura P. Laura P. is a little girl I used to babysit. Simply, when her mom was gone, she cried. When I babysat her, I would attempt to comfort her and walk her around as she cried for her mother. There was little I could do to make her happy. I had figured out at some point that turning on home videos of her parents settled her down. Well, Kate has been screaming for me when I have been getting out of the house. She cried for Danny for 45 minutes on Sunday when I went out with Emma. My mom watched her while Danny and I took Josh to the developmental pediatrician. She screamed for my mom. Both times, she stopped when I walked in the house. It makes me feel sad to be apart from her if that is what she does. I remember babysitting Laura P. and it was stressful. I don't want to put others through that. So, we'll keep working on it and hopefully this is just a phase. Kate is laughing quite a bit more. She has rolled over a couple of times and we're trying to convince her to do it more!

Emma has been continuing to work on learning the value of a dollar. She earns $3 per week for doing her chores. If she complains or doesn't do her jobs, we take money off of what she'll get for the week. I like the amount because she can't get a significant toy too frequently (a $10-$15 one). She has to save a few weeks and our hope is that she'll learn to save her money. Emma is not a natural saver. If she has money, it's burning a hole in her pocket and she'll find something that costs less than what she has. I regret the day she learned about the dollar section at Target. I grit my teeth and refrain from buying her any toys so that she'll learn to save and value what she buys. She has been dreaming about American Girl dolls for months. I explained to her that they are $95. If she can save half of the money, we will pay the rest. I figure that if she wants it bad enough to save that much, she'll understand the value by that point. We have also showed her the similar dolls at Target that are $22. After Easter, she had enough money to buy one of those and she did. She occasionally goes back to American Girl doll magazines and talks about saving up $45 (I rounded down for her) for one. Last week, she resolved to save. At $7 in her bank, she knew she had a way to go, but really wanted one. We went into Bath and Body Works together and she spotted a pink rubber duck. Yes, a pink rubber duck. She wanted it. I told her I was not going to spend $4 on a rubber duck that we didn't need. She said she could use her money. Really, Emma? Sigh. I feel defeated. "It's my money, Mommy," she told me. I sighed another breath of defeat, "Fine, Emma. It is your money and if you find value in a pink rubber duck, whatever." I can only hope that some day, she'll learn to value a dollar, or else appreciate being able to bathe in a rainbow of rubber duckies.

Over and out. No promises on my update schedule, but it can only get better, right?

4th and assessment results

So, I'm off to a slow start on my July blogging, but am getting back in the game.

We had a great 4th of July. The kids all wore their red, white and blue and Emma was able to thank a service man in Target who was in uniform. He was really nice to her and it was the perfect thing to do on the 4th. We did most of our celebrating on the 3rd, starting with a visit to my parents' house. We brought the blow up pool and the kids had a blast in their back yard. They cooked a great lunch for us. That evening, Danny's parents brought dinner over for us and we ate really well, again! Both of our families were great to us and gave me a nice break from cooking for the day. We watched fireworks from our front yard. I have always loved fireworks and have great memories of watching them growing up and hope to create some of those same memories with the kids as they get older. For now, we'll settle with Emma thinking it's awesome to see our neighborhood fireworks from the front yard.

I think Emma is starting to get a little bored with being home, but when I suggest some new things to do, she isn't interested. She's been acting out more than normal and I'm not sure if it is just part of her age and becoming more independent with her words and actions, or if she is using that for more attention now that Kate is here on top of our lives being turned upside down with all that we're doing for Josh. We'll figure it out and I pray it is just temporary. She is a sweet little girl and I don't want to spend my days punishing her more than praising her. She and Josh can be quite a comedic pair (see below). Last week, the kids wanted an umbrella stroller from the garage and were pushing it around the house. Josh went and got Emma's bike helmet and brought it to me to put it on. I put it on him and he went to sit on the stroller. I asked if he wanted me to push him and he replied, "No. Emma." He wanted Emma to push him. She was "busy" doing art, but he was all smiles waiting for her. I made her come see him and asked how she could resist playing with that smile?!? She obliged and they had a blast!

Kate had her 4 month checkup this morning. She's up to 17 lbs. 3 oz and 26" long. She was in the 30th percentile after birth and is finally in the upper 90s like her older sister and brother were. She's very healthy and looks good! Josh has been showing a lot of affection toward her lately and really wants to give her kisses. Thankfully, he is much more gentle with his touch than he used to be. I tried to capture a kissing moment while Kate was in my lap. So sweet!

On the treatment front, we are all set to see an autism specialist in Austin in September. We will be heading to Thoughtful House in mid-September. After visiting with our nutritionist last month, she expressed some concerns with the vitamin dosages from our pediatrician. It really woke me up! I believe we are on the right path to treating Josh, but I want an expert to oversee Josh's treatment. We are working with mega-doses of vitamins and that can be toxic if not fully understood. I have done quite a bit of reading from the doctors at Thoughtful House and think that's the right place for us to be. My gut says our nutritionist is top notch and I had her re-work Josh's vitamin prescription, but I need someone on the medical side as well. I started the process to get Josh seen at Thoughtful House, beginning with about 2 hours of online forms, a complete medical, nutritional, developmental description of Josh. Since then, I've had a call with one of their coordinators to review all that information and gather more details. I faxed them all assessment and lab work we've done and also did a phone developmental assessment with them. I'll have a phone appointment with their nutritionist in August, then an exam with a doctor in September. We're looking forward to it. Until then, I'm continuing to work with our nutritionist here.

We received a lot of assessment results this past week. I requested the written reports from Josh's occupational, physical and speech assessments to send to Thoughtful House. Wow. Eye opening. I was most surprised by the physical therapy assessment. I always thought he had the fewest delays in gross motor skills (he runs and climbs, right?). However, that assessment ranked Josh in the 3rd percentile for gross motor skills based on the PDMS-2 assessment. In age equivalent, his skills ranged from 11 to 21 months. I was shocked. She had verbally told us the areas he needed work, but this is a much bigger gap than I pictured in my mind. We've been doing his exercises and seen great improvement so far. We'll see what the PT sees at his appointment next week.

From his occupational therapy assessment, his fine motor skills were in the 12th percentile, age equivalent 22-28 months. His speech percentile is 13th, but is only considered a "mild impairment." I don't get that, but I guess that is because he is pretty functional especially with his receptive language (he's come SO far here in the last 6 months!). We had been waiting to get on the schedule for all three therapies and there has been a hold up getting insurance approval for speech. I'm following up on that, but went ahead and got PT and OT scheduled to start tomorrow. OT will be on Friday mornings and PT on Wednesday mornings.

Josh is still enjoying his ABA therapy on Tuesdays and Thursdays. We met with his therapy counselor this week to go over their assessment results (VB-MAPP assessment). It tests several categories of skills expected by 18 months, 19-30 months, and 31-48 months. A child is set to attend a "typical" pre-school after passing assessments in all categories in the 31-48 month range. Josh had 3 categories in the 18 month level with gaps, the majority of categories in the 19-30 month were lagging, and he had only a few skills met in the 31-48 month grouping. Based on these results, his development plan was created and we'll get feedback on his progress every therapy session.

Honestly, it's a little alarming to see these assessment results in writing. We've been having so many more good days with Josh and we see so much progress. We often revert back to talking ourselves out of there being a problem, he's just a little delayed. So, we need these reality checks to keep us motivated to seek and provide treatments for him.

Josh is improving SO much! His fits and tantrums are significantly reduced, he is constantly picking up new words, his eye contact is improving, his balance is better. We have much to be thankful for, including the thoughts, prayers and support of our friends and family!

Start of ABA Therapy

Hello! We've had a good week, starting with more smiles, giggling and talking from Kate. She really lights up when she has someone to talk to. She has to start early with the talking to have a chance to get a few words in between Emma's. I'm really enjoying my sweet little girl! Josh started his ABA therapy on Tuesday. I had explained to him that we were going to a "new school" and the names of his teachers. We got there too early and I didn't realize the doors wouldn't be open yet for us to go in, so we ended up standing outside the door for 15 minutes. Josh remembered playing there and wanted to go in, so there was no getting him back in the car and he wouldn't even go with me to practice climbing stairs. When we went in, the therapist took us to a big play room and started playing with him to get him comfortable before I left. He clearly could care less if I was there or not. After 10-15 minutes, I explained to him again that I was going to leave and pick him up in the afternoon. He gave me a hug and kiss goodbye and went back to playing with the toys. I got a call after lunch to let me know he was doing well and loving the attention there. When I picked him up in the afternoon, they carried him out to me asleep. He was pooped! Thursday was much of the same. He was happy to be there when I dropped him off and went straight to the therapist and didn't look back. He was in a great mood when I picked him up. There isn't too much to tell about what he's accomplished or how he is doing. This week, they completed a detailed assessment and worked on making Josh feel comfortable there. They'll meet with us to go over the development plan they put together for Josh based on the assessment. They'll also have a parent training for us to learn and follow the same teaching methodologies they use, as well as have monthly meetings with us to follow his development. On Thursday night, we were out in the front of our house and our neighbors were walking with their daughter, who is one month older than Josh. Josh ran right up to her, made eye contact, waved and said, "hi." I figure they were probably practicing that with him at ABA. I want to ask that because I haven't seen him deliberately do that to a child he hasn't known. He greets friends and family he knows, but it was neat to see him go out of his way like that! All in all, I feel really good about having Josh in the ABA therapy center. I think that it, in conjunction with healing his digestive system, will do wonders in catching him up. I did have a hard time seeing most kids there being far worse off than Josh is. Quite a few are not speaking at all and I could see the envy in the eyes of some of the parents with Josh speaking nouns galore when their children weren't talking at all. In some ways, I feel caught a bit between two worlds: 1. the "typical" world where it became really apparent earlier this year that Josh was getting farther and farther from the norm at daycare. I got "the looks" from other parents and shared concerns with his teachers. 2. the development disorder world where Josh is relatively highly functioning. I guess the sympathy I am feeling for the other families in the ABA center is similar to the sympathy the other parents were feeling toward Josh and our family at our daycare. I guess we're still absorbing the feelings of being in this new world. I am looking forward to their assessment findings, as I often find myself still talking myself out of there being an issue with his development. Danny and I did reflect this past week on more improvements with Josh. On the down side, we're having some milder head-banging again and he wakes up every single night for an hour some time between midnight and 2:00. He is itching like crazy. We usually have to give him Benadryl for relief and he gets back to sleep within an hour. On the up side, he is doing a great job of walking with us holding hands (mostly with Emma, but we'll take what we can get!), gross motor skills have improved greatly (balance, climbing, jumping), he's much more compliant with diaper changes and bath time, he is eager to communicate with us, and he is adding several more phrases to his vocabulary! This coming week, we only have his ABA on Tuesday because of the 4th. Our other therapy sessions haven't started since they are still getting pre-certification from our insurance for his speech therapy. Hopefully, we'll get that scheduled out this week. In other family news, poor Danny got in a car accident yesterday afternoon. Thankfully, he is okay and none of the kids were with him when it happened. He was driving in the right lane, about 40 mph. The two left lanes were stopped, but his lane was clear. A truck headed in the opposite direction was waved to turn left into a gas station by a stopped car in the left lane. He pulled right in front of Danny and Danny's car t-boned an F-150 truck. The truck flipped over. Danny and the other driver both walked away. Several people from the gas station ran over to help them out and a cop was there when it happened. Danny's hand has been hurting and that's been his biggest complaint so far. I'm sure that the emotional tie to his car will be more to deal with tomorrow when he starts to deal with the collision center. Everyone who knows Danny knows he loves this car. It's the first new car he's ever bought and it's just over a year old now. Hopefully, they can repair it to be just like new again. Here's a picture of the damage... :(

Have a great week! Have a great 4th if I don't make it back before then.

-Bonnie

A calmer week

This past week was wonderful! We had no appointments for Josh and his therapy sessions have not started yet. I called the ABA (Applied Behavioral Analysis) therapy center on Monday and got the ball rolling to enroll Josh on Tuesdays and Thursdays starting June 23rd. Once we got over the idea that Josh would fit in a school like this, we got excited. I went to the parent orientation on Thursday and have all the information to get him started. We bought him a backpack, sleeping bag (in case he can't survive the day without a nap) and lunch bag. I've been telling him about his new school and I really hope he understands and that eases the transition for him. We had also started epsom salt baths this past week to help draw the toxins out of his body. We saw a definite regression in his progress. He was wide awake itching in the middle of the night. Danny and I were up with him for about an hour each night. By Thursday, he was really grumpy, had pox-type bumps on his body, was flapping his arms again, toe-walking and tantruming. On Friday, we were at my parents' house for the day and spent some time outside to help him sweat. I think that must have made a huge difference in helping him get that crud out of his body. That night, he slept the entire night and was just amazing on Saturday! My gut says we got some of the toxins out of his body. I'm looking forward to future lab tests to see if there are improvements in his toxin levels. There has to be! We have also started the process of getting Josh in to see a DAN (Disable Autism Now) doctor in Austin. I am filling out all the entry forms and we should hear from them this week to get his appointment set up. The doctor we are going to see is Dr. Bryan Jepson. He has been a pioneer in treating autism and my gut says that's the way to go so we can have him oversee Josh's treatments. I think our pediatrician is on the right path, but she's new to treating autism biomedically and pediatrics is still her primary focus. I also feel uncomfortable that she and the nutritionist are not agreeing on some of his treatments. I would like to have someone who just treats autism oversee this. Since we are working with mega-doses of vitamins, I want someone who really knows what they are doing. I would never forgive myself if Josh were to receive the wrong dosages of vitamins. Emma is signed up for Vacation Bible School at our church, which starts tomorrow. She'll be there each morning this week and I'm really hoping she enjoys it. She can be such a home body, but definitely likes to be entertained. Crossing my fingers. I am still waiting to hear back from the scheduling department for the rest of Josh's therapies. Our schedule will be to have Josh in ABA therapy 9:00-4:00 Tuesdays and Thursdays. His remaining therapies will be scheduled on Mondays, Wednesdays and Fridays and I'm hoping they can group a few therapies so we'll have one day off to just enjoy and visit grandparents! He'll have physical therapy 30 minutes/week, one-on-one speech therapy 30 minutes/week, then a combined occupational and speech therapy session 30 minutes/week. If they can combine the PT and one-on-one ST to be back-to-back, we'll only have to go there twice a week. In terms of supplements, our regimen looks like this: Breakfast:

• Custom vitamin blend + cod liver oil mixed in sunflower butter (thanks to my mom for the suggestion of the sunflower butter since he has no idea what I put in it!)
• Herbal anti-histamine chewable
• Prescription anti-fungal (this is his last week on that)
• B-12 cream

Lunch:

• Digestive enzyme

Between meals:

• Custom amino acid blend

Dinner:

• Digestive enzyme
• Custom vitamin blend + flax seed oil in sunflower butter
• B-12 cream

Bedtime:

• Probiotic
• Herbal anti-histamine chewable
• Epsom salt bath 3-4 times/week

Today is Father's Day! Happy Father's Day to the few dads who read this. :) Poor Danny had to leave on a business trip this afternoon, but I told him he didn't have it too bad today. The kids were great in church today, he got to watch golf, get lunch from Cane's, then get away to himself and sleep through the night in a king size bed. Not a bad deal. His gift is a guilt-free day of weekend golf, a rare commodity these days. He'll be going with another friend in a few weeks once they return home from staying with a sick relative. Danny and I have been enduring a lot this year, but the great thing about Danny is that he loves our kids and always wants to be good to me and them. He is great emotional support for me as I have been flip-flopping constantly about what I think is best for us to do with Josh. He's taken off of work to go to assessments with me and he hasn't complained when my experiments in trying to make our new diet palatable don't go as well as I intended. I'm very blessed to share parenting, the fun and trying parts as well, with my best friend.

I can't let today go by without a shout out to my dad. I have always been close to my parents, but the last few months, I have really leaned on them. My dad has always been the type of person to just do what needs to be done, no to-do about it. He listens so well when I share my thought process about Josh and how we should get him treatment, and finds how he can help without being asked. Almost daily, when I check e-mail, I have e-mails with links and information related to the latest Josh topic I have mentioned. He has saved me HOURS of research. Then, there are the little nice things that don't go unnoticed. Whenever I go over with the kids to visit, he greets us at the car and helps me bring in the bags of stuff that go with three kids. He makes the kids laugh with his silliness and they all show much love for him (even Kate loves to giggle for Grandpa!). I am very blessed to have a dad who still knows just what I need to feel better, even now that I'm married with three kids.

I'm so blessed to have these wonderful men in my life and I love them so much! I pray that with these great examples around, Josh will grow up to be a loving, patient, faithful man.

Assessments Gallore

So, I assumed I would be able to update throughout the week, but that didn't happen. Last week was a whirlwind. So, I'll start with a cute picture of Emma and Josh with Uncle Chris. Great picture!!! They love playing with him. Now, I'll just jump right in...

Monday we met with the nutritionist and eye doctor. Josh's eyes are developing fine and the eye doctor has no concerns. Good news there. The nutritionist was amazing. She was a wealth of information and has so much experience dealing with kids like Josh. I went in with no idea what to feed him and left with several ideas. She also went through all the supplements with me and told me when each should be given to him and how they should be given to him for maximum absorbency. Great information to know!

She was very optimistic about Josh and further explained the results of the nutritional testing we had done through our pediatrician (this nutritionist used to perform this testing for our pediatrician). Some of the things she noted are that Josh is not absorbing the animal fats that he's eating and that head-banging is usually linked to a vitamin E deficiency. She also looked at his poor legs, which are covered in sever eczema patches and scabs. She said that his foods on his allergy test that were rated on the lower end could be introduced next week one at a time. We'll definitely be trying eggs back first tomorrow. That's been a thorn in my side!!! I have many failed attempts at trying to make baked goods for Josh that just failed. Before we went to Austin last week, I stayed up Thursday night to make waffles to have for breakfast on our trip. I expected it to take me about 30 minutes. I spent 1 1/2 hours, mostly prying the waffles off of the waffle iron and they were not the best consistency. Previously, I had attempted blueberry pancakes that wouldn't burn! The middle stayed gooey, so we let them stay on the pan longer. Then it became a curiosity for me and Danny. After 20 minutes the stinking pancakes wouldn't burn. Sigh. Another batch for the trash. Apparently, many "allergy free" mixes are not friendly with egg substitutes and actually need the real thing. I had several types of alternative flours made by the same company that makes an egg replacer and most of their recipes on the box have an asterisk saying they don't work with the egg replacement and require real eggs. Unbelievable. Anyway, I digress. I finally found some options and you'll be glad to know Josh hasn't been starved to death. :)

Overall, the appointment with the nutritionist was the best of the week and she added some supplements to our regimen to help Josh rid his body of the mercury. We'll meet with her again next month to have her adjust his custom vitamin blend and to more aggressively work to get the mercury out of his system. To give context, Josh's issues are all related. The yeast in his digestive system and his body's lack of digestive health causes everything that enters his body to not be properly absorbed. So, a lot of toxins leak from the digestive system into the bloodstream, leading to neurological issues. High levels of mercury and high levels of digestive yeast are common traits of autism. You can't just clear out the yeast and have all be well. Until the mercury is out of his system, the yeast will continue to overtake his digestive system. We have been working on ridding his digestive system of the yeast, then next month we'll more aggressively go after helping his body to detox from mercury, then continue to help his digestive system balance out the levels of good bacteria and handle detoxifying itself.

Tuesday, we went to an ABA therapy center for an assessment and tour. It was a nice place and they work with kids individually to teach them social, play and communication skills. We went home and felt in turmoil a bit. Seeing kids that seemed worse off than Josh made us wonder if it was too extreme for him to spend two days a week there, or were we just wearing our blinders again? We often find ourselves talking us out of Josh having any developmental issues. I had read about this center at the beginning of all my research, but since then, they became in-network for our insurance. In Texas, a law was passed last year that requires insurance companies to provide treatments for autism spectrum disorders, including ABA therapy (previously autism was handled as an untreatable mental illness). So, now some of these centers are taking insurance which was not the case as recent as a few months ago. After back and forth, and some clear signs after prayer, we feel it is definitely worth a try. I'm now very excited about the prospect of him getting individualized treatment, their parent training program (so I can follow the same methodology at home), and am hopeful that this could be the treatment to help Josh turn the corner he's so close to right now.

While the lady who did Josh's assessment talked with us, the director started to work with him rather than just letting him play freely. They were working on taking turns (which I've tried at home) and Josh was not too pleased with her, but she didn't worry about whether or not he looked like he was having the time of his life. She worked so well with him and it gave us a taste of what things he would do there. We were impressed by the interactions between the therapists and kids during the tour. Once we got over our acceptance issues, we've become more excited about this opportunity. I will be getting the referral from our pediatrician tomorrow and schedule when we can start.

Wednesday and Thursday Josh had is occupational and speech therapy evaluations. Nothing too surprising came out of that except more realization of Josh having more motor skill weaknesses than I realized. We've been given many exercises to build his arm and leg strength, work on balance, as well as his fine motor skills. It's amazing all the things you notice once some one points them out to you. I feel I have to be much more careful with Josh when we leave our house now. On one outing last week, he took a spill on steps that I don't think he even saw. I get comfortable with what he can do at home and it is a little scary when we get out how quickly things can turn.

In terms of speech, she assessed him just below the "normal" bell curve. First of all, he's made HUGE progress in the last few months, and significant leaps since we've started his dietary and supplement changes. His eye contact is clearer and he has a strong desire to learn what to say for situations. I expressed my concern about his language not seeming conversational and natural, but memorized. He has an outstanding memory and attention to detail, but seems to lack the understanding of emotions. He knows when he sees a candle, fire or flame that he says the word "hot", but I don't think he understands what "hot" means. He bites, then says, "no bite," but he doesn't seem to understand that it hurts to bite. He can see a fan and will say if it is on or off and that it goes "round and round and round," but if we were to ask him if he saw a fan we wouldn't get a yes or no. For his speech therapy, they are going to do a combined occupational/speech therapy session and one individual speech therapy per week.

We ended our week on Friday night with a reception for our college friend who was ordained a priest the previous weekend. He said Mass at our friends' house and we had dinner afterward. Yesterday, we had a baby shower for my good friend, Jennifer. Our daughters were in daycare together since they were 1 and have literally grown up together. She is expecting a girl next month and we can't wait to meet her! I always enjoy baby showers and we had a good time!

Saturday evening, we had some friends over for dinner who hadn't met Kate yet. The husband went to high school with Danny and was in our wedding. They just moved to Dallas from Atlanta and we've enjoyed getting to know his wife more. During dinner, she asked more about Josh and it turns out she used to be an ABA therapist in college! We were able to ask her a few questions and some of our concerns were addressed. It was great to catch up with them and we'll enjoy having them back in Dallas.

This was an exhausting week, but a great one. It's nice to have things moving on treatments for Josh. Danny and I have had some wonderful talks and have been getting each other through the ups and downs of accepting the situation. Mostly, I feel a sense of peace that things will be fine. It has been so hard to go through the process of accepting this diagnosis and trying to figure out how we are supposed to treat it all at the same time. We have been faced with so many decisions to make without a checklist of what we are supposed to do next. I truly believe that God has just taken over for me the last few months. I have had really strong feelings on calls to make or places to go, and each has led me to the next step. People have said things to us that have filled puzzle pieces we needed, referred us to resources, shared information they knew and have lifted us up in prayer. Our college friend who was ordained a priest last weekend gave the most beautiful blessing to Josh Friday night. He didn't know many details of what we've been going through, but his carefully chosen words to bless Josh brought tears to our eyes and an overwhelming sense of peace. Particular words he said were straight from my recent prayers and God has really been showing me that he is in control and will take care of us.

The schedule for this coming week is currently a blank slate. Ahhh.