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.

Progress Update and Physical Therapy Assessment

As I write, we have just returned from Austin for the ordination to the priesthood of a college friend. It was a really neat experience to be a part of this special day for him and I know he will be a wonderful priest. We got there 30 minutes early to get the last two chairs in the foyer. It would have been neat to see everything from inside the church, but with three kids in tow, we were lucky to get the chairs we had. Danny left with Josh pretty early into it and I was floored that Emma was outstanding for three hours!!! I expected it to be two hours long, but I was so impressed she pulled through that I gave her $2 afterward. :) We saw many friends that we hadn't seen in years. It would have been nice to get to visit longer with everyone, but now that so many have young kids out of their normal routine, the talking was cut shorter than many of us would have liked. We experienced our first trip with the kids and handling Josh's food needs. For about 4 weeks, Josh has been milk free. For just over 2 weeks, he had been on his custom vitamins and supplements and we have removed gluten as well as the foods he came back allergic to in his allergy testing (wheat, corn, soy, sesame, egg, walnuts, peanuts). There's no food on the go with him so we were prepared with a cooler full of food for him to eat. For the most part, we didn't have any issues as he's becoming used to his new normal. Josh is such a trooper!!! In terms of progress, we have noticed several areas of improvement with the diet changes and supplements:

• Significant improvement in mood and drastic reduction in head banging. This is the biggest area of relief for us as you'd imagine. If we're all in better moods and not in physical danger, we can work together and make more progress in other areas.
• Improved speech and communication. He's constantly working on more nouns, speaking more clearly and we're starting to hear a few verbs and phrases. He's starting to say, "I want" instead of just the noun and pointing (which was huge to get to that point). I've really been working with him on saying what he's doing such as, "I kick ball" and "I do it." In a more normal 2-year-old way, he's verbalizing when he doesn't want something like "No, Emma!" and "No hands" when we want to hold his hand.
• Improved sleeping!!! Josh used to wake up at least once a night screaming. We'd often think he was in pain and after multiple wakings, pain reliever used to help him sleep. We always felt bad that he was in pain. Occasionally, we'll hear a cry during the night, but his night waking is pretty much stopped.

I have a ton of appointments set up for Josh. We kicked it off last Thursday with a physical therapy assessment. The therapist was great and we felt really comfortable there and with her assessment. We'll get the written report this week, but she pointed out some areas to work on. First, she observed that Josh has a vision problem. He is not focusing his right and left eyes at the same time and seems to have depth perception issues, which strongly contribute to his clumsiness. She also noticed that he doesn't seem to be able to use his peripheral vision, but is actually turning his head or moving his eyes to see things in the periphery. I made an appointment for him to see an ophthalmologist Monday afternoon to get that checked out. This is likely a culprit in his center of balance being off. Hopefully, we can get this corrected and he won't fall down or trip as much. As with so many other areas with him, it seems so obvious once some one points it out to us. We've noticed him missing things he has reached for several times since she pointed it out to us. She also observed him walking with his right foot turned in at the arch and encouraged us to get on top of addressing his W-sitting. I've confused some of you when I listed W-sitting as an area of concern. It's not a sign of autism, but can affect hip joint development in any child and can be a life-long problem if not corrected. We've been showing Josh how Emma sits criss-cross applesauce and have her on board with the nagging him as well. He's slowly starting it on his own and other times he gets pretty ticked at us bothering him about how he is sitting. The PT praised Josh's determination to try to do everything she asked. We see that at home a lot as he always wants to be able to do what Emma does. She gave us many exercises to incorporate into play to improve his coordination and build core muscles. It's been much easier than I expected to work these in. We have a little kid stool I pulled out for him to practice climbing on and off (to build leg muscles, balance and coordination). When he first went to climb up, he put his hands down on the stool to brace himself, then his feet, one at a time. He was very nervous about stepping off of it. I offered help as he built confidence. With the praise and cheering of Grandma and Grandpa, he was jumping off of it in no time. When we did the assessment with the PT, we realized that he has never jumped off of anything. We had just been proud he recently started jumping up and down. We'll continue our list of exercises to work on and he'll have PT once a week.

This week is jam packed, but I'm excited that we're getting beyond the coming to terms with our feelings and researching all we can, to actually getting some treatment going. I'll attempt to blog each night with updates. Here's the schedule:

• Monday: Morning meeting with nutritional counselor so we can feed him well with all the restrictions. Afternoon appointment with pediatric ophthalmologist
• Tuesday: Afternoon assessment and tour of an ABA therapy center. We're learning about this type of therapy and if it would be right for Josh. I'll try to describe it more after our visit Tuesday afternoon.
• Wednesday: Morning appointment for occupational therapy assessment. They'll assess his fine motor skills (PT assessed gross motor) as well as his sensory development. This is where we have the most concern for Josh as sounds and motion can be so upsetting to him. The PT we saw was also an OT and said it is great we are getting the OT assessment as well.
• Thursday: Morning appointment for speech therapy assessment. We have had Josh seeing an ECI (early childhood intervention) speech therapist for 9 months. Our pediatrician agreed with us that we needed more than their services were offering for Josh, which was two visits a month.
• Friday: we take a breath and have a fun day together!!!

I had also requested a neurological/psychological assessment at the same center so we can get our official diagnosis beyond our pediatrician saying he's on the autism spectrum. They do not have a test through the hospital that can be performed on kids under 3, so I am going to go the developmental pediatrician route. I wanted the neuro/psych assessment so our worries with damage due to head banging could also be looked at, but we'll have to go another route for now. We want to make sure we have the diagnosis in place to get the treatments we need and have some one to help us oversee where we need to help him in development. So, I have found which developmental pediatrician we want to see. I'll schedule that tomorrow. That's the last of the scheduling we have planned and hopefully, it will be just going to our therapy appointments from here.

I don't know if I'm happy or sad about this, but Emma is no longer a kindergartner!!! They had their end-of-year program on Friday and each kindergartner was awarded an accomplishment pin (they collect throughout elementary). I can't believe how much she has grown up in this last year, nor can I believe how much taller she is than most of her class! She's very excited about being home with us for the summer. She has already started a calendar for our week to have what we should be learning and eating each day. I give it two weeks before she's bored with me, although I really hope that is not the case. At this point, we really need to go to the grocery store and I have absolutely no idea what they will eat tomorrow, but we'll figure something out. Now that she's really starting to read more and I can figure out most of the words she's trying to write, she could be an outstanding helper for me in planning and preparing foods. She's very compassionate toward Josh, so I'd bet she'd be all over figuring out what we can make for him and what we need to buy. Tonight, she came back out after going to bed and said she was upset that Josh got to go to bed after her. I explained that Josh went to bed later because he was hungry, so hungry that he wanted to eat a can of green beans. I told her that if she wanted a plate of broccoli that she could stay up later also. She laughed and headed off to bed!

Speaking of bed, Kate has finally started to sleep longer stretches at night. Last night, she went 7 hours which is her current record!!! And, with that, I need my sleep too...

More updates to come with the exciting week we have ahead!

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.