Roller coaster week (or so)

I know, I know, I'm so overdue on my posting, but better late than never. I know I have more than a week to cover and a lot has happened. Last weekend, Kate was baptized! In short, we survived Mass. We normally go to 9:00 for a reason and knew going at 11:00 would push it, but it's not like we got to choose. Anyway, Josh walked into church with his normal, "church, quiet, pray" sequence. Then, he spotted two pews with our family and friends and he went into PARTY mode! Mass started with us at the back of the church. Kate was crying and we had forgotten her pacifier. Josh was climbing all over Danny and the situation was just stressful. Thankfully, Danny's dad walked over and took Josh for us and Kate went back to sleep. Poor baby got messed with all this Baptism stuff every time she fell asleep. Anyway, we survived and looked forward to returning to the back row at the earlier Mass the next week. Our priest does a beautiful job with Baptisms and I felt true joy as he presented her to the community in her beautiful gown and bonnet. Some of Danny's good friends from high school, Dave and Katherine, were in town from Chicago with their 2 kids. Their families live here still and always include us in get-togethers when they are in town. Honestly, I was SO nervous about how Josh would behave at the first dinner at Katherine's parents' house. Most of the time, Josh is sweet, loving and has a great personality. I feared he'd spend the time there screaming, whining, or worst of all, an out-of-control tantrum. When people don't see your kids often, you want them to see the best in them and I fear Josh being misunderstood for what he is. I feared for nothing. He was wonderful and we had a great time then, and again at Dave's parents' house the following weekend. Their families are always so welcoming and treat us like family. I had a very enjoyable time. I think that sometimes God gives me strategically placed "bad" days with Josh to reawaken me to the issues we do have and to give me the fight to help him get better. Every time I've had an appointment with his doctor, we seem to have days like this. After several good days, last week was extremely difficult Wednesday-Friday. I am so thankful that my parents happened to be over on Wednesday to just take care of Kate so I could deal with Josh's tantrums. I can handle the delays and difficulties Josh has, but nothing could be more upsetting than him intentionally hurting himself. The majority of the time, it happens out of the blue and often when I am agreeing with him! The next thing I know, he's on the floor and starts to slam his head on the floor or wall. I don't have words to describe what these fits are like. On Thursday evening, I was just devastated. I think Danny knew when he walked in the door on Thursday that I was to the end. Emma proceeded to tell him that Josh had been banging his head and that she could hear Mommy cry from her room. We had been about a week without dairy and Danny mentioned that it's like Josh is going through detox. My dad has been my master researcher. He sent me the following article which explains how dairy and gluten have an opiate effect, and Josh probably was going through withdrawal. Here's an excerpt explaining this far better than I ever could: "As mentioned earlier, autistic children have abnormal gastrointestinal systems. The reasons for this are varied but include abnormal mucosal barriers from dysfunctional intestinal metallothionein, depleted sulfate which prevents normal healing of the mucosal layer, chronic inflammation from persistent viral infections and autoimmune reactions, injury to the mucosa from abnormal bowel flora and abnormal pancreatic digestive function. This leads to incomplete breakdown of proteins resulting in partially undigested chains of amino acids called peptides, which are usually several amino acids in length. These peptides, which would normally be broken down further or passed through the stool, are absorbed through the damaged and overlyporous mucosal lining. It has been shown that the peptides that most often are at fault are from casein (milk) and gluten (wheat, barley, oats, rye). These children have diminished functioning of an enzyme called DDPIV that is responsible for breaking down these particular peptides. The peptides are absorbed through the intestinal tract into the blood stream and from there are carried to the various body tissues including the brain. These peptides have basically the same structure of a group of hormones called opiates. There are opiate receptors throughout the body but a particularly high concentration exists in the brain. When activated they cause euphoria and decreased pain response. These are the same receptors that bind opioid-like drugs including morphine and heroin. It is hypothesized that the gluten and casein proteins are binding to these receptors and effectively causing an opioid intoxication. That may be why these autistic children seem to crave foods rich in gluten and casein. They frequently will have severe tantrums when these foods are first eliminated or become unavailable. They are potentially going through an opiate withdrawal that often results in and is relieved by binging on these foods. All they know is that eating these foods seem to make them feel much better, which in turn causes them to limit their diet to these specific foods. Unfortunately, chronic opioid toxicity affects learning, social interaction and motor/sensory neurological function. Most autistic children have also shown to have an abnormal immune system response to gluten, casein and soy." http://www.puterakembara.org/rm/Dr_Jepson.pdf The article from Dr. Jepson is very long, but our pediatrician is right in line with his methodology and findings. So, if you're interested in the types of treatment we're doing for Josh and some of the science behind it, this is an excellent article. Anyway, after a few horrible days, Josh's mood slowly got better and we were able to enjoy the Memorial Day weekend. Emma and I went to our pizza cooking class on Saturday morning. I was worried at first when she seemed like she could not be less interested, but once we got to actually making the pizzas, she loved it. She even says she's interested in a cooking class camp one day this summer. Danny and I had an appointment with Josh's pediatrician last Thursday morning to answer any questions we had and to discuss our treatment plan for Josh. She had allergy testing results from blood work we did the week before. Basically, he's reacting to everything since his body is in immunity chaos. We've always known he had a severe peanut allergy, but this test also showed he has moderate allergies to wheat, egg, corn, dog dander, and every tree, mold and grass in the area. In addition, he has a high allergy response to soy and sesame. My first thought was, "What on earth are we going to feed him?" But our pediatrician said he'll grow out of some of the moderates as we get his body functioning properly. Obviously, we can't remove every exposure, but we're doing as much as we can. In the meantime, we're regularly giving him allergy medication to keep him comfortable. His skin looks horrible and if we miss a dose, the poor guy itches constantly. We got our custom vitamin and amino acid supplements at that appointment and went through that regimen. We'll gradually work him up to a full dose and go back for a re-evaluation in 3 months and get our refill at that time. In 6 months, we'll re-do the nutritional makeup lab work again. Also, as part of our treatment plan, she told us to decide where to do therapy (speech, occupational and physical) and she'd do the referral for us. We left with peace of mind and still loving the heck out of this doctor, but as the hours went on that day, I had a million more questions and uncertainties. I prioritized our weekend to first make a plan of action for food. Being hungry is a tantrum trigger for Josh, so it is extremely important to have many foods on hand and ready for when he's hungry. We're basically making everything from scratch for him and our target diet for him is proteins, veggies, then fruits. He can have grains, but too much will just feed yeast so we have to be careful there. My second task was to come up with a treatment plan for Josh's therapies. I thought the dr. said that we needed to go to a treatment center specific for autism to oversee all his treatments and overall health, but Danny understood her to say that we could go to a center like that if we felt his treatment was beyond her. I was torn for days trying to figure out how we'd pay for one of these treatment centers and how to work through the insurance company maze. After much research (thank you, Dad!!!) and thought, I know we're on the right path with our dr. in treating Josh from a biomedical perspective. The other piece of treatment is his therapies. The pediatrician said he needs several days a week of speech, physical and occupational therapy. I talked with the insurance company last Friday about coverage and researched centers that would handle all therapies. All were private, and with us having HMO coverage, we'd have to petition to go out of network and have to handle all reimbursements ourselves. I have felt so consumed by this and felt such a strong need to get this rolling, but the pieces weren't coming together. I started my morning today with prayers that we'd find the right path for Josh. I started calling therapy places and asking questions about navigating insurance coverage. One of the places asked me if I had looked into Our Children's House at Baylor. I had heard of them through another parent, but hadn't made the connection before. I called and they are partnered with our insurance, were so helpful with my questions and have a great program. I contacted the pediatrician's office and the referral is in the works. We should have his initial assessment for therapies scheduled this week!!! Answered prayer, Praise God! Today was a great day! I feel at peace finally that we are on the right path for Josh's treatment plan AND the ball is rolling on it. Josh was in a great mood today, I got some laundry done, dinner was cooked and Danny was able to walk into the house after work to a calm house. I have a sense of peace that I've been waiting for. Now, I can go back to reading and learning more of what I can feed Josh and how I can help his developmental progress at home. To close out on another happy note, here's a picture of Kate's adorable smile. She's so sweet and patient. She waits for her attention, and when she gets it, she loves to coo and talk to us. She's such a blessing and is doing her best to start sleeping longer stretches for Mommy.

Thank you all for your prayers and support! On the tough days, there is no doubt that faith and prayers are carrying me through.

Yeast busters!

Since Josh's lab work came back, my dad researched everything that came back abnormal. It all seems to tie back to their being yeast in his gut. Amino acids he is low in are fungal fighters and the vitamin deficiencies play a role in it also. The other concerning area was his high level of mercury. I'm still reading about options for clearing out the mercury, but will defer to the pediatrician on her recommendations. I had checked out some books on autism from the library. I had to quit reading them, as they were more mainstream thought that there is no cure and you basically have the option of therapy treatments to help your child cope with this. I flipped through and went to the area covering head banging, which is our most upsetting issue with Josh. This book basically said that kids who hurt themselves need to be drugged. The thought of drugging him being our only option brought me to tears. I could never picture sedating Josh. As upsetting as his tantrums and hurting himself can be, I could never picture taking away some of his spirit by drugging him. I shut the book and returned it to the library. Thankfully, the book I was most interested in and had ordered online came in the mail. It's Jenny McCarthy's book, Healing and Preventing Autism. It does an outstanding job of describing in simple terms how doctors and parents have been successfully treating their children with autism. It explains how immunity issues, yeast overgrowth, vaccine timing and overall digestive health play a part in basically brain poisoning. It gives me much hope and a lot of resources as we continue. We are so fortunate to already be going to a pediatrician who is knowledgeable and optimistic in treating kids with autism. What a blessing that she was a step ahead of us! My dad has also been sending me several links to articles he has found. Here are a few to share:

• A video overview on parents explaining the onset and treatment of autism for their children as well as doctors who see treatment options beyond mainstream medicine saying autism cannot be treated. http://www.youtube.com/watch?v=tsjx0Lo05z4&feature=related
• Generation Rescue. This is the organization Jenny McCarthy and Jim Carrey work with as autism activists. http://www.generationrescue.org/

A lot of articles and books discussing poor functioning digestive systems and yeast overgrowth recommend a dairy and gluten free diet. They suggest removing dairy first, then work into removing the gluten. The idea is to quit feeding the yeast in the digestive system. Last week, we started to remove dairy from Josh's diet and are beginning to remove gluten items. He's been dairy free for several days now and just started week 3 on the antifungal medicine. We have definitely seen improvements! I think his overall demeanor is improving and we've had multiple days without head banging or over-the-top tantrums. He still has them, but he is improving. On Friday, Kate, Josh and I went to Costco with my parents to get food for Kate's Baptism party. Josh was sitting in the shopping cart. The checker took the loaf of bread he was holding to scan it. Old Josh would have melted down and started to throw his head back into the cart. Nope, not this time! Josh made a pouting face, shut his eyes and put his head down. NO FIT! Woo hoo! His language is also continuing to expand. He is naming several more objects, but today he used a few words I was really excited about. He walked up to us this morning, pinching his nose and said, "stinky" and laughed. He didn't have a dirty diaper, but just thought it was funny. Later today, he and Emma were playing with a big balloon together. Emma took it from him and he said, "SHARE!" I finally figured out why I was so excited to hear those words today. They aren't nouns!!! He wasn't just naming objects. He was describing something abstract, a smell, an action. Abstract ideas have been a challenge with Josh. We've always felt that when we described something that was going to happen, he didn't get it. And, he hasn't grown into story books yet. So, this was an exciting accomplishment. Who knows if it is related to the medicine and diet changes, or just his progression in speech development, but it's improvement and every step forward is something to be celebrated. Tomorrow will be another celebration for us. Kate is being baptized! Since Kate was born during Lent, we have had to wait until after Easter to get her baptized. There is quite a backlog of babies at our church. There will be six baptized at Mass tomorrow morning and six were this evening. Emma has been very concerned about Kate having "the sin she and Josh don't" (original sin from Adam and Eve which we believe is removed by the graces of Baptism), so she is looking forward to tomorrow as well. She had a dress in mind to wear and I wondered why she picked that one as she hardly chooses to wear it anymore. Emma told me tonight she picked this dress because it was what she was wearing the day Kate was born. What a memory, and what a sweet sister! Blessings to all! Bonnie

Happy Mother's Day

Happy Mother's Day! Mine was nice. Danny took care of Emma and Josh so I could sleep in until 7:30. We went to church and after Josh went down for his nap, I was able to take a nap. Sleep was a beautiful gift!!! My gift from the family is a parent/child cooking class for me and Emma. We will be going to Central Market in a few weeks to make pizzas and calzones. They presented it to me with a picture Emma drew of the two of us at the class together. I am really looking forward to going! Also, at school, Emma painted a picture of me and wrote a fill in the blank note about why I am special. Whenever she does those, there are multiple references to my cooking, so apparently, that's the way to Emma's heart, just like her father. So, to celebrate Mother's Day, I'd like to share a few of my favorite mom moments to highlight my best parenting skills (HA!) and cute stories from the kids. Josh is so proud when he learns new words. We were at the park a few weeks ago when I was talking to a lady with some puppies. I told her that her dogs were cute. As we walked away, Josh said, "It cute." Since then, when I point out dogs to him he'll say, "Dog. Woof. It cute." Last week, we were taking Emma to school and I pointed out a dog walking with a family to school. Josh said, "Dog. Woof. It tute!" :) Emma is our designated poopy diaper detector. Whenever Josh has a dirty diaper, she's the first to pick up on the scent. If she's iffy, she'll stick her nose right in it to confirm. I felt shame about taking advantage of it for the first time a few weeks ago. Kate made "the face" in church, so I sent Emma in to confirm. She wasn't very discrete, as I'd hoped. She put her nose right into Kate's carrier, checked the diaper area and turned around with a huge nod yes and waved her hand in front of her nose. I avoided eye contact with the people behind us when I left to change her diaper. At school, Emma draws a picture each day and writes a sentence to go with it. They are supposed to sound out their words the best they can. She came home a few weeks ago with a picture of a horse. Written below the picture: "It's a hore." Kate has started to smile! It's the perfect timing for babies to start to smile. The getting up at night is more exhausting the longer it goes on, but a sweet smile from a baby makes all those thoughts go away! We've received so many graces and blessings since we learned we were pregnant with Kate. She was meant to be a part of this family and although we are having more chaotic than peaceful evenings right now, we wouldn't have it any other way. Family has been the greatest gift in life. I am blessed to have Danny and share the experience of raising kids together. We've definitely learned a lot about ourselves as the kids have brought out the best and worst of us both. I do believe that having kids has been faith-deepening as well since we can better see our areas to work on and are given daily opportunities to improve. I also feel I better understand God's love. We give our kids the tools to be their best, guide them as we can, but ultimately they make their own choices as we cheer them on from the sidelines. And, whenever they make mistakes, we are here to forgive them and love them again and again. To all my mom friends, I have really enjoyed sharing motherhood with you! It has meant so much to have your friendship, share our stories, feelings, fears and joys with one another. There is a whole world of judgement that we are exposed to after becoming mothers, but friendships that are genuine and supportive overcome the negative around us. Thank you all for being here for me. I hope you all had a wonderful Mother's Day! To my mom, I love you so much! You are so good to me and I'm truly blessed to be able to share motherhood with you. I always know you are on my side and would do ANYTHING for me or my family. You are a wonderful example of a generous, loving and very fun mom and grandma. I really love seeing my kids love you. That "Graaaaannndmaaaa" greeting you get is priceless! Happy Mother's Day!

The "A" word

Kate had her 2 month checkup today. She's up to 12 lbs, 8 oz and 23" long. All looks well with her. We got to discussing Josh when our pediatrician wanted to discuss vaccinations for Kate. She brought up that siblings of autistic children have risks since there are genetic links to autism and the possibility that her body wouldn't handle the vaccine properly. So, we decided we'd start with the DTaP vaccine when she's six months old and go from there with caution. It hit me. She said Kate has an "autistic sibling." I have known and have been reading like crazy, but to hear it so matter-of-fact kind of shocked me. I think we've been avoiding a label even as we've known this conclusion. I called Danny on the way home and he felt the same way. It's easier to think of it as a biochemical imbalance, but I think that's mostly due to our misconceptions about what autism is. I have always pictured kids with autism to have no eye contact, and have fewer social and emotional skills. Josh is very affectionate and ranks only borderline autistic on the social spectrum of autism. I fear most what the label would mean for him. I see Josh, my sweet and affectionate little boy. I just hope that others see that side of him. He's got a smile that melts your heart. He does know that and knows how to milk it a little too. Many of you ask about our feelings and emotions. I go through phases of denial, grief, sadness and optimism. We all desire our children to be "normal" and have life come easy to them, so it's hard to picture the challenges ahead of us. I fear how our family will be viewed. Will people who don't know us and see us on a bad day think he's a brat and that we're not disciplining him properly? People are so free to judge and throw out their two cents whether it is welcome or not. Every mom has a grocery store story when someone told them how to better handle their child. I remember leaving in tears when Emma was three and having a fit in line. The lady in front of me proceeded to mumble to herself how Emma needed a spanking. However, I refuse to be down about this for long, as there is so much more to be positive about. First, since we found out I was pregnant with Kate, God really opened our hearts and provided the financial means for us to consider me staying home after she was born. As we've discovered more about Josh's development, the decision for me to quit working became a no-brainer. Second, we are so blessed to have a pediatrician who is knowledgeable and has slowly pushed us in the right direction. Circumstances with Josh and sleep apnea led us to her two years ago. Third, we have amazing support from our family, friends and Josh's caregivers at his daycare. (We're going to try to keep him there two mornings a week.) It's nice to have friends and family who support us when we're struggling through his tantrums and head-banging rather than judging our parenting. I've received the nicest comments and support and it really helps get us through the tougher days. Kate's Godparents had us over for dinner Saturday night and we were on pins and needles, but Josh did great the majority of the night. We enjoyed our first dinner at some one's house as a family of five! I'm not quite up to venturing out with Kate and Josh on my own yet since at a given moment both of them could require me to physically hold them. I am hopeful that as we treat Josh, we'll work up confidence in going out without me fearing the worst. Until then, our adventures will be more confined while Danny is at work. I'm adjusting to not being at work. I honestly don't miss it much since I'm staying busy, sleep deprived and have been preoccupied with learning about autism. The days that are more chaotic and I'm obviously outnumbered by kids go by the quickest, but are the most stressful. The days when we're all happy and every one's schedules line up nicely, I start to watch the clock more and the days move more slowly. I'm working on figuring out the middle ground - the right balance of taking care of everyone and planning activities and play time that entertains us. It helps when Emma is here. This week, she's been home with me since her school district closed for the swine flu. She has been insisting that we keep her school schedule and that I teach her. Journal time, reading, math, recess, etc. It's been kind of fun. Josh likes to be anywhere Emma is, so I taught Emma the word "adapt" since we needed to adapt all her lessons to include Josh. When we worked on subtraction, I had her get her piggy bank. She and I counted out coins as Josh played putting all the coins back and dumping them out again. When we drew math stories on the white board, Josh helped color. We were making a math story by drawing out apples. I drew them red and Josh colored them green, so I told Emma our Red Delicious apples were magically turned into Braeburn apples thanks to Josh. She learned to adapt and we had some fun with it. Emma is an amazing big sister and she and Josh sure love each other. I didn't think kids 4 years apart could have such a bond. And, with Kate, she is so nurturing and sweet. I LOVE listening her talk baby talk to Kate to try to get her to smile. So, from here, we are meeting with the pediatrician in 2 weeks to follow up and bring all our questions to her. She mentioned today that she can refer us to private specialists for occupational therapy and sensory integration therapy. She agrees that we are reaching a level that might be beyond what the state ECI programs can handle. I am glad about that. We've been waiting over three weeks now for an occupational therapist to even call us and schedule an evaluation. I'm sure that's normal, but now that we're onto something, I want to do everything we can while he is still young. She also gave me a packet filled with autism resources. She said to take our time and read through it and we can discuss any of it at our next appointment. I unsuccessfully tried to get books from the library, but what they have is pretty outdated. So, I ordered a few key books from amazon.com today about dairy and gluten free diets and about treatment options. I'm looking forward to reading them, but I have plenty of websites and information from the doctor to keep me going. Thanks again for your prayers and support!

A week of appointments and promise

I'm on to the start of a new week. Last week, Danny was in Chicago for the week attending a week-long marketing course at the University of Chicago. It was a great opportunity for him and I truly appreciated all did to help out before he was gone. But I sure am glad to have him home! I am very thankful that my parents were ready and willing to help come over and stay with me to help out, as well as Danny's mom helping out one evening. I would have had quite a hard time without their help last week. Dinner and bedtime are the craziest time, when everyone needs Mommy at once! We had quite a bit going on with Josh last week. The first behavioral counselor who came out a few weeks ago did an initial autism questionnaire for Josh. I got her results that they recommended he get further evaluation based on the results. We were doing everything recommended already, so nothing big there since we were reading more and suspecting Josh is somewhere on the PDD (pervasive development disorder) or autism spectrum. Josh had his speech therapy appointment on Monday. That is the most I have seen him interact with her! He was definitely showing off and very playful and affectionate with her. He is using several 2-3 word phrases on his own and is extremely receptive to learning new words and phrases from us. Also, since her last visit, Josh has started verbalizing shapes and colors in addition to having a strong desire to count and recognize letters. I am excited about his attempts to talk and see improvement each day. I often wonder if he's known all these things for awhile and can now just let them out. Either way, we're encouraged and I love how he turns almost everything he sees into a counting game. On Wednesday, we had our appointment with Josh's pediatrician for a developmental assessment. I brought in my list of concern areas (from first post) and mentioned that ECI said we might need a referral to a developmental pediatrician or neurologist. Her take was that we know he's somewhere on the spectrum of autism/PDD/sensory integration and that spending time down that path would get us a diagnosis and a label for it. She has found that looking at it from a biomedical level, we'd have a shot at healing him from the inside rather than just getting a label and additional therapies. She had the results from the lab work she recommended earlier and went through them together. The lab work covered oxidative stress, organic acids, amino acids, essential fatty acids, and toxic and nutrient elements. Wow! There were several abnormalities. Most notable were a high yeast level in his digestive tract, vitamin B12 deficiency, as well as a high level of Mercury. She prescribed an anti fungal medicine that we started the next day and the following week we should get a custom multi-vitamin to start re-balancing his body. I can't explain to you how far off some of these were. The imbalances were so extreme, not just out of the normal range. I have a million more questions than we had time for and as we're reading and absorbing this all more, I am writing them down for another appointment. She said these imbalances are linked to his behavioral issues and she's seen success in treating kids much worse off than Josh. I asked her if he is in pain or uncomfortable since sometimes when he's crying in his sleep I've thought he seemed in pain. She said she thinks they are and mentioned a severely autistic child she was treating who screamed constantly and was definitely in pain. Recently, he said goodbye to her by name when he left her office. So, there is much promise in this path. Last appointment of the week was with the behavioral counselor on Friday. She observed Josh and reviewed my logs of Josh's sleep and behavior patterns. We talked through my concerns and she gave some great suggestions on how to handle is tantrums and encouraged our distinguishing between a sensory problem and a two-year-old fit. At the end of her evaluation of Josh, she found his emotional development to be normal and we do not need regular visits from her. She reiterated the need for him to see an occupational therapist to address sensory integration problems. Our request is still being processed by ECI and hopefully we'll be able to get that scheduled soon. If ECI is backed up, I'm planning to pursue seeing one via a referral from our pediatrician. The sensory development issues are really starting to become more pronounced. He is sensitive to things he never was before. For every bump in the road, he lets out a little cry. We explain every time that it's a bump and everyone in the car says, "BUMP." Hopefully, he'll start saying it too rather than crying. So many sounds are bothersome to him, even ones that we can barely hear. He can hear a garbage truck from blocks away, runs around the back yard crying when a neighbor turns on their weed whacker. He and I were watering plants together outside. I'd fill up a pitcher and he'd fill up his cup from the hose. He'd cry every time I turned on the water. I'd explain it and even have him say "Ready, set, go." He'd still cry regardless of how high or low the initial water pressure. These are just a few examples, but I do see this area getting gradually worse and want to focus treatment in this area next. By far, the biggest news of the week was the results of the lab work and the promise that goes with that. With my week being so hectic, I didn't get to do much research. Thanks to my dad, we have several resources now that tie to this line of treatment. I am extremely thankful for the path we're on. We're blessed to have a pediatrician seeking this type of testing and treatment and really think it was God's plan that we ended up in her office two years ago. Based on her encouragement of this testing, I think we're months ahead of where we would be otherwise. In my next post, I'll share some of the links from my dad, our feelings as we adjust and digest this all, and I'm sure Emma will provide some entertaining stories as well. She's mommy's helper this week since her school district is closed due to the swine flu.