Happy 5th Birthday, Josh!

Well, I've given up on blogging.  There have simply not been enough hours in my day.  My husband has been travelling about 75% of the time since April.  Keeping up with three kids and a house has done me in!  :)

But today is Josh's birthday and we are due for an update!  He is so excited to be 5!  He loves calendars and we keep a large one at home to help him know when things will happen.  He is elated the first day of a new month and I get him out of bed by telling him we get to turn the calendar.  November 17th has taken a long time to get here for Josh and today, we celebrate him!

Josh has continued to make tremendous progress.  We tried a new speech-based preschool with a lot of visual cues during the summer, 2 days per week and he continued his ABA therapy 3 days per week.  The speech preschool has been amazing for Josh!  I never imagined that he would flourish with the use of pictures because he was verbal.  However, I am wrong.  His conversation and language skills have taken off.  His first week there, he was able to tell me what he did at school and that was a first!  So, what we planned to be a summer thing turned out to be great and we have continued that into the fall and started his individual speech therapy there as well.  They have been amazing at helping Josh to regulate his emotions and use tools to handle things he does not like and changes in his routine.  They have taught him so much on taking turns, playing games, singing songs and are laying an awesome groundwork for navigating social complexities.

Startng in September, we enrolled Josh in a regular preschool at a local church the other 3 days per week.  With the help of his speech therapist, we had a local speech college student be his aide.  He has done wonderfully and we have phased the aide out.  I have volunteered at some of the school functions and leave in tears of joy.  The other parents don't know Josh's past.  I love that when I meet other parents they tell me that they hear about Josh all the time and love him.  HE HAS FRIENDS!!!!  My heart is so warmed that he has been welcomed with love by his teachers, made friends and the other parents know him in a positive way.  God sent us amazing teachers that were just made to love and teach him.  I feared so much with him re-entering the "typical" world, mostly the idea of him being rejected.  My heart would have been broken.  Thankfully, due to the grace of God, countless people He placed in our lives, and Joshua's hard work, I know we are going to be okay.  There is still a road ahead of us, but it's a lot less scary than we were told and imagined three years ago.

We've made changes with Josh's primary medical doctor as well as with his diet.  With Danny travelling so much, I had to just give up on our modified SCD diet.  I couldn't peel, boil, puree and whatever other crazy stuff I did for 1 1/2 years any more!  I first got Josh eating all his foods without pureeing them, then some fresh fruits, more fruits and veggies, then re-introduced grains.  Being able to have some packaged foods is heavenly!  We are still very vegetable and fruit intensive, but being able to have a bowl of puffed millet or rice for breakfast with berries and milk is just a joy.  It's the small things... :)

On the medical side, the biggest gain we have had came after his doctor tested his cortisol levels.  Cortisol is the hormone your body makes when you are under stress. It is your fight-or-flight hormone and gives moms the super power to lift a car off of their child, or one to fight off an attacker.  I described Josh as being chemically off.  He had odd sleep patterns, including passing out on the kitchen floor and we could not wake him.  His meltdowns were so intense and very upsetting, but when he was done, it was like he had a chemical release and was reset again.  Based on our descriptions, we tested Josh's cortisol levels by collecting his saliva 4 times in a day.  It came back 10 times the normal level!!!  We started some homeopathic remedies to help calm his adrenal system and support stress.  Wow!   This has been the biggest leap since chelation!  Josh is a much calmer child.  It has been months since we have had 30-minute meltdowns, headbanging, door slamming, wall kicking, etc.  Those were the most upsetting to me.  I couldn't calm my own child and couldn't keep him from hurting himself.  He also rarely slept through the night.  Since starting this remedy in September, Josh is sleeping much better.  Usually when he wakes now, it is because he can't get his blanket back on.  We have the Teach Me clock that turns green when it's okay to wake up and most nights, he is in his bed until it turns green, then he comes to my bed to cuddle with me.  Sleep depravation has been the hardest thing for me to handle, so I am thankful Josh is sleeping better.  Now, we are dealing with Kate liking to wake up at night, but I know that is just a matter of time and should be relatively short.  :)

We are functional as a family again.  We can go to church without being mortified (aside from Kate being a typical two-year-old, but we'll get through that).  We went on vacation this summer and we all enjoyed it!  Josh participates in our family activites.  He was Buzz Lightyear for Halloween and fully participated in a carnival at Kate's school as well as trick-or-treating.  We can talk about Thanksgiving and Christmas and concepts he never used to "get."  He says the sweetest prayers, including asking God for his tummy to not hurt anymore.  We celebrated his birthday with friends last weekend and successfully opened presents and got through the entire party (including it ending) without any behavioral issues.  We are so blessed!  I have met so many amazing families in the autism community.  Not all have the same outcome we have had, so I take absolutely nothing for granted.  Josh has made us better people.  Our priorites are different than they used to be.  We are thankful for so many things that we took for granted before as parents, that are now little miracles.

I hope to be able to blog more often.  I enjoy it and love sharing about my kids, but it will still have be secondary to caring for my kids and keeping my sanity. :)

Here's a short clip of Josh and Kate having "smoovies" as Kate says it.  They are precious!

Thank you all for your prayers and support!
Happy Birthday to Josh!

Conversations with Josh

Josh likes to practice his conversations while going to the bathroom. He is very chatty, asks me questions (over and over and over again) and wants me to ask him back so he can answer too.  Here's his latest:

Photo and video editing at www.OneTrueMedia.com

 
I knew this "asking for" conversation had to come from somewhere, so I went through the latest Caillou episodes he's been watching on the iPod.  We have a match!

Taking a turn onto a new path

We are taking a turn on our path. Josh has had leg rashes for YEARS! It's different than eczema. It starts under the skin, sometimes making some large circular patches that are raised, sometimes like hives, sometimes raised and red. It is most bothersome to him at night and at its worst, he seems to just itch from head to toe. It makes me very sad to see him miserable, especially when it gets to be for hours in the middle of the night.

I have been chasing the cause of this. The first thought is always allergies and when we figured out all his food allergies a few years ago, the eczema issues he had cleared up. Most medical professionals we work with say it is an immune response. I have logged everything in his life trying to find the cause, tried allergy medications, pants and lotion when he goes outside, nightly baths, we keep his food on a rotation schedule with strict monitoring of new food introductions. One of the people we work with for him suggested we take the dog out of the house for a month, clean it top to bottom and see if that was the culprit. The skin on his face is beautifully smooth, he doesn't have itchy eyes, sneezing, or a clear runny nose. No improvement on several months of Zyrtec last year.

All that to say, I am convinced that his skin issues occur when his gut is out of balance: yeast or dysbiotic bacteria. Yeast in his digestive system was the first big battle we fought and when we changed his diet protocol January of last year, he cleared up after several weeks and started sleeping through the night. In June of last year, it came back along with the night waking. Let me repeat, he has NOT slept all night since last June!!! His stool labs have been showing dysbiotic bacteria. We have treated with targeted antibiotics, he clears up, gets in a MUCH better mood, less OCD, his skin clears and sleep improves. Once we're off the medications, it all comes back again and seems worse than before. We had tried some of the natural remedies with the antibiotics and continued afterward, like caprylic acid and grapefruit seed extract but they were not strong enough.

I decided this isn't working. There has to be another way to treat bacteria. I think probiotics are one key. With the SCD diet protocol we were using, he was limited to two probiotics (l. acidophilis and s. boulardi and he didn't tolerate the s. boulardi), so we gave him l. acidophilis for 8 weeks on and 8 weeks off. His labs showed NO presence of it in his gut, so all we have him was just being beaten by the bad. I talked with his nutritionist and she agreed for us to move him off of this diet protocol from a probiotic perspective. We have started a broad-spectrum probiotic to help re-build the good bacteria in his gut. Second, I have read a lot about Culturelle, which is a high-potency lactobacillus GG that targets clostridia. I added that in as well. I ran out of it last week and went two days without - definite difference almost immediately!!!

Third, I took Josh to the local naturopath. He is the first person I have worked with for Josh who looked at his legs and said this was likely a gut imbalance! He have us homeopathic remedies to target bacteria, viruses and parasites in his digestive tract in addition to a remedy to help repair his liver which is weak. After we get these issues under control, we'll work on some other systems in his body that are weak. The naturopath also went through all the supplements we give Josh and didn't see issues with any of them, as most are vitamins and minerals to help with his deficiencies.

Whenever clearing yeast or bacteria, we see bad before the good. 3 days into it, Josh started bedwetting which is exactly what happened when we changed his diet for yeast last year. It is UNBELIEVABLE how much can come out of him! We took him to the bathroom right before bed, he wet at midnight AND went a ton on the potty and wet again at 4 AM. Similar story for about three nights. His legs are starting to clear up and his itching is improving. Some obsessions are disappearing (changing shirts 10 times a day, changing the time on clocks, CDs), but his obsession with fans is still around and driving me nuts at times.

I am optimistic! This is worth a try and I am hoping this path leads helps us to leap to the next level with Josh. When I bargain with God, I tell him I can handle him being different and having challenges, but I cannot handle him being miserable and extremely angry. I link that to his gut and I pray we can figure this piece of the puzzle out for him.

Pre-school is here

Josh has officially started to transition out of full-time ABA therapy.  He has been attending his therapy center for 1 1/2 years now and was there 5 days per week for all of 2010.  He has made tremendous progress, becoming one of the most social children there!  It is a good and a bad thing.  His progress is great, but he was starting to turn more to adults because a lot of the children there were not responding to his requests.  So, he gravitated to the adults who responded to him.

We discussed a transition plan with his therapy team for him to attend a regular pre-school 2 days each week and remain in ABA the other three.  After a lot of back and forth, I decided to put Josh in the pre-school program in our school district.  Basically, the services you get depend on the district you are in and the elementary school you route to.  The one in our neighborhood does not have a pre-school program, so we go to a nearby school.  They have a pre-k program for typically-developing children who qualify and they include the special education pre-k kids in the same classroom.  This seemed a good fit - Josh would be working with teachers who want him in their class (I had such fear of us getting rejected in many pre-schools!), he would be included in a regular classroom, but have the special needs support he needs.

He started a few weeks ago and I was so nervous that first day!!!  The special ed teacher was out sick and I thought all the prep work I had done was out the window when we were greeted by a substitute teacher.  Of course, he did fine and has been excited to return there.  He has done well going back and forth between his ABA school and new pre-school.  Slowly, he's starting to tell me tidbits about his day.

I am hoping to find somewhere Josh can attend in the summer 3 days per week, so we can go down to 2 days of ABA, then plan for him to be in pre-school 5 days per week next school year.  Next school year will tell us a lot and help us to plan for whether he can be in a regular kindergarten class or not.

We are still battling something with Josh's gut.  During the fall, he had high levels of clostridia, a bacteria.  We did a few rounds of Flagyl with amazing results in his behavior, skin irritation and night itching.  Unfortunately, there is still something else going on.  He has not slept through the night consistently since last June.  Needless to say, we are tired.  Sometimes, he wakes up aggitated for hours at a time.  Other times, he is itching all over his body, like there is no tomorrow.  I have logged everything we do to see if it could be tied to a food, a supplement, anything, but nothing consistent.

We sent off another stool sample to the lab which just came back.  There are new bacteria we haven't dealt with before.  Clostridia is still there, but in a more normal range.  No signs of yeast, which was our main battle the first year of treating Josh.  I have an appointment with his doctor at Thoughtful House tomorrow.  Once I learn more and the plan of action, I'll post about the new bacteria.  I'm hoping knocking these bacteria out will bring back night-time peace and remove the major tantrums that come and go.  That will make me a much happier person.  :)

An empty room

I cleared Josh's room of all toys, his train table, books and lighter furniture.  His tantrums have been escalating to a new level.  It's like he is in a mood to have a fit and every attempt to avoid the trigger is a moot point, because he needs to let some monster out of him.  He physically goes crazy, throwing himself back to the ground, flailing around from side to side.  He kicks, throws toys or anything he can grab.  If I go to him, I get kicked, hit, scratched, bitten.  He has gotten to big for me to continue holding him through it without getting hurt.  He has had some of these level of tantrums at school as well.  In discussing with his lead therapist, we agree it's best to isolate him until he can calm himself down.  He calms down quicker and that avoids any of us providing any reinforcement for his behaviors.

I have been bringing him to his room more often to calm down, but this new level of tantruming has been disheartening to say the least.  His screaming and kicking the door and walls has escalated to throwing around anything he can grab.  So, I cleared out his room.  This has been the most emotional day I have had with him in a long time.  I always try to keep hopeful, but my heart broke as I remembered all the hopes and dreams I had for my son when I decorated his room.  Danny and I painted a blue sky with clouds and airplane wallies.  Our families contributed different airplanes to go around the room.  We filled his bookshelf and hoped to share many books with him. 

So, I packed up his trains and emptied the train table to go the attic.  I bought a doorknob with a lock for his closet door to keep him out of there.  I moved his bookshelf to Kate's room.  He's left with a bed, dresser and nightstand with no airplanes or pictures on top of them.  I pray these fits will end before the room goes down to only a matress.  This seemed so symbolic.  I feel like I can see all my dreams I have been ignoring go away with each thing I packed up.  As much as this hurts, I still have to have hope.  We'll see what happens next, what we can put back into his room to replace our old dreams with our new ones.

I quit blogging, quit Facebook, quit e-mailing, quit calling, quit attempting play groups with Kate the last 3-4 months.  I have not been in a good place emotionally, but do have a good counselor helping me put my life back together in a new way.  I can't begin to explain all that has been happening, but I am attempting to get our updates out again.  I know many friends and family don't feel comfortable asking about how things are going with Josh.  I know it's awkward and difficult to relate, but I appreciate all who have prayed for us, stood by us and supported us in the way you know how.  When you don't know what to say or how to help, please just say a little prayer that God will continue to give us the grace to serve Him through our marriage and in raising our children.

So, with this empty room, we decorated with love and hope for our son, I give it to God to help us keep hope alive, build new dreams and love in a way we never knew we could.

Update: lab work and chelation

We performed another round of blood lab work in June and had a follow up phone appointment with Thoughtful House.  In February, Josh's lab work showed his thyroid levels were off (hypothyroidism) and he was very vitamin D deficient.  We re-checked those as well as liver and kidney function again so we could decide to start chelation.  His thyroid levels are now in normal range, vitamin D is still low, but is at least at the bottom of the normal range now.  Normal levels of Vitamin D are 40-100.  In February, he was 33 and now is at 40.  We want him to be around 80.  His liver and kidney functions look good!  Whew.  I always worry about those from issues I read about kids with metabolic issues.  Anyway, our action plan is to keep his thyroid meds as they are.  They could use a little optimizing, but it can wait.  We did mega-doses of vitamin D for 2 weeks and are now at a high dose.  We'll re-check them again in a few months.

We got the green light to start chelation.  We did a challenge test in December where we took a sample of Josh's urine as the starting point.  He got 1 dose of DMSA, a chelating agent to pull toxic metals out of his body.  We collected his urine for the next 6 hours and sent both urine samples off to the lab.  They came back with relatively few metals in the pre-challenge test and very high levels in the post-challenge test.  For ASD parents (and anyone else interested), I have uploaded his lab results to share.  The difference in levels shows us that the DMSA helped his body to get the toxins out and that they are present in high levels in his body.  Now that Josh's immune system has settled from the diet change and the yeast in his digestive system was in better check, we decided it was a good time to proceed with chelation.

Our chelation schedule is 3 days on, 11 days off.  We have completed four rounds.  After the first round, I can't say we saw much difference.  The Tuesday after the first rond, he was very chatty all day.  In his ABA therapy, they keep track of all his requests and comments (to peers) as part of his daily data.  Normally, Josh as roughly 20 requests and 15 comments each day.  That Tuesday, he had over 50 of each!  After the second round, he has started speaking more complete sentences.  The other day, he said, "Look, Mom.  I found a waffle."  He's been good about commenting to us, but the little words are starting to fill in more often.  Before, it would have been more like, "Looka, Mom.  Find waffle."  He's starting to correct himself on using I/me.  Most often, he'll catch himself saying, "Help you." and switch it to "Help me."  He has made HUGE headway with potty training, even initiating.  I was worried we'd have to schedule train him for years.  All in all, he's a little more with it and some of the oddities in his behavior are reduced.

The bad part of chelation has been that it has aggravated Josh's yeast.  His doctor warned us about this.  I gave it two weeks before calling about it.  He put Josh on Nystatin to help battle the yeast.  It's helping, but he's not completely clear of it.  He's still waking up at night, which is the killer!  Kate is sleeping through the night most nights now, except when she is teething, so I'm guilty of just sleeping with Josh. I'm too tired and know I need to break that habit at some point.

We had tried giving Josh S. Boulardi to help with yeast and gut healing, but after two attempts of slowly giving him small quantities, we linked it to severe aggression.  He would go into complete meltdown, overload, head banging, unable to control his emotions.  It's hard to believe that so little of something like that could do so much to him.  I was really upset to say the least.  We have taken leaps forward this past year, and seeing behaviors like that take us back to over a year ago behavior-wise.  I remember telling God that we'd deal with whatever we needed to with Josh, but begged that He take away the head banging and aggression.  When Josh goes into those modes, I am sad and fearful.  He is 42" and 43lbs, a big kid.  What would life be like if he's like at at 6? 12? 20?  I pray every day that won't happen and I am thankful every day for the progress we have made.

So, that's the quick update from here.  We are heading to Austin soon for an in-person follow up with Thoughtful House.  We're extending our trip a few days to turn this into our summer vacation with the kids.  We're staying in a hotel with a full kitchen so I can store all of Josh's food and do any cooking I don't get done before we leave.  The kids think it's a treat to stay in a hotel, swim and go to a museum or two, so we'll enjoy them being young and appreciating us making a family vacation on the cheap this year.

Josh health and diet update

Thank you for your prayers for Josh! He is doing very well on the new diet now and we are going to continue moving forward with it. We had a rough start since he was not tolerating a lot of the introductory foods, but he’s now stabilized and digesting his diet of meat (restricted portions), pears, carrots, green beans, spinach, zucchini, butternut squash and avocado. We rotate out his meat so he does not have the same meat more often than every four days and in the coming weeks, we will get his fruits and veggies on a 3 day rotation. The rotation helps keep him from developing new allergies and intolerances since his immune system is prone to that. The meats I feed him are beef, chicken, turkey, lamb, pork and buffalo. Each day, I puree about a pound of meat with 7-8 cups of vegetables. I spoon the mixture onto a frying pan with a little oil and bake them into little “pancakes.” Josh will only eat them with a little browning, but he’s happy to have them each day. I serve them with boiled pears or pear sauce (home-made) and ½ an avocado. I also offer broth made from boiling the meat with vegetables. The broth is very healing to the gut. He is finally consuming some broth, but only because I put a little meat in the bottom for him to dig out and he ends up drinking a lot of the broth. It sounds like I am torturing him, but he is very happy with this new routine. I know he must feel better because he doesn’t ask for ANY of his old foods anymore. What three-year-old would be content to go to a birthday and kindly agree that they will not eat cake because it hurts their tummy? Well, it must hurt for him to agree. Anyway, it’s a lot of work to boil all these foods each day, but we’re finally getting into a groove and are happy with what we are seeing.


Josh is steadily progressing through his ABA programs. He is learning several adjectives like rough/smooth, hard/soft, big/little, hot/cold, etc.. He is learning his prepositions and continuing to work on classifying and grouping objects, utilizing them to learn WH questions. He has mastered “where” and ‘what” questions and is working on “why” questions. He struggles with the more abstract ideas like big and little and the “why” questions. He cannot understand that he is little next to Mommy, but big when he is next to Kate. He is frequently pointing at things and asking if they are big or little. I think it is interesting how his therapists teach “why” questions. Josh has been classifying objects into groups, identifying what things have in common, then working on negations, what doesn’t belong. They are now using those scenarios to ask why something doesn’t belong. For example, they will place out several cards of animals and a shirt. They will ask which does NOT belong and he will pick the shirt. Then, they ask why it doesn’t belong. He is supposed to say because it is not an animal. He is struggling with this and very frustrated that he can’t figure out what they want him to do, but he’s working hard and finally getting a few right.

At the beginning of the SCD diet change, we also ran a panel of blood work on Josh to check his IGE food allergies, liver function, mineral levels and the basic CBC testing. Our goal was to re-check nut allergies since they are a part of the later phases of SCD, and we wanted to check his liver function before we planned on doing chelation (protocol to remove toxic metals from his body). I already mentioned him being allergic to every nut you can name. We’ll continue to work with his nutritionist to create a custom diet plan. His liver checked out fine, but his thyroid levels were off and he has hypothyroidism, under-functioning thyroid. We started him on thyroid medication about 6 weeks ago and saw big gains with that as well. We decided to wait on chelating until late spring or early summer. The SCD protocol has rocked his body, but I think we rid his digestive system of a lot of bad yeast and bacteria. We have seen huge gains in language, cognition, gross and fine motor skills, social skills, AND with great excitement, I report that he sleeps through the night over 75% of the time now!!!! His bowel movements are consistently normal. That sounds gross, but it is such a relief since that is our biggest indication of how his stomach feels and to know he is properly digesting foods. It’s been a LONG time since we have seen normal diapers out of him.

Also, we actually have potty training news to discuss – a topic I didn’t imagine I would be writing about in a positive light. I attended a toilet training class for special needs the end of January. We had been trying to work with Josh on recognizing if his diaper was clean or dirty and going through the process of sitting on the potty. He used to only sit on the baby potty and I dreaded the day he actually peed on it because he was too big for there to be a chance of it going in! He was afraid of the big potty for a long time, but with the assistance of super big sister, Emma, we had him at least sitting on it. I took the training class on a Friday and by chance, the first time he actually peed on the potty was that weekend. He was so excited that he figured out what we wanted him to do! In the months since, we have moved all diaper changes to the bathroom and when we catch him going to the corner to do his business, we direct him to the bathroom. We had a roadblock when we were a few weeks into the diet changes, as it caused excessive urination. The volume was incredible and double diapering him didn’t prevent us from having to change the sheets at 3:00 AM. That has passed, for the most part, and we progressed to getting him to the potty before his usual corner times and eventually he started pooping on the potty too! We’re not close enough to go to underwear, but are very encouraged that we are progressing. He has even initiated going on his own twice in the last week. Woo hoo! I am praying we get him out of diapers before Kate is. :)

Thanks again for the prayers! We had an appointment with his nutritionist last week and at this point in time, we passed the hurdles that made us consider the elemental formula diet. Thank God! Next set of foods, here we come!

Picture of the week:  Josh wanted to wear Emma's soccer jersey.  I told him to ask her and she let him.  Emma asked me, "Mom, do you think Josh will be a tom girl?"

Prayer request, please

A quick post.  We have been doing the Specific Carbohydrate Diet protocol for Josh for 4 weeks now.  Basically, we are severely limiting his foods to starve out bacteria and yeast in his digestive system.  We have been adding one food at a time to a very small set of introductory foods.  It is not going well.  We are seeing improvements and the yeast seems to have died off.  However, Josh is developing allergies to almost everything he is ingesting.  We received our last food allergy test results this week and he is highly allergic to every nut in existence, wheat, corn, soy, eggs, sesame seed, and on and on.  Anyway, I had an appointment with his nutritionist yesterday afternoon.  Josh is currently eating broth, meat (chicken, turkey, pork, beef in rotation), boiled pears, green beans (he won't touch) and avocados.  We have taken out the duck and quail eggs because we think he's allergic to them, and we're not certain if bananas, apples and/or carrots are a problem so they are all out until we are 5 days free of duck and quail eggs.  Zucchini made him sick, so that's out too.  Then, we'll test apples, bananas and carrots one at a time before introducing new foods.  PLEASE pray this goes well and we can start building a diet for him.  This is our last effort.  If we can't build a basic diet for him, we'll have to go to an elemental protocol.  That basically means we'll put him on liquid formula to give his GI system a rest and try to get him back on solid foods months down the road.  I'm in tears at the idea because I don't think I have that left in me to do.  I've been going crazy enough with the introductory phase of SCD and boiling foods constantly.  We need to fight his development of new food allergies.  As his nutritionist explained to me, once he develops an IgE allergy to a food, it's basically for life.  I am not giving up hope yet, but prayer is definitely needed as that is our source of hope.

Our laptop crashed and I just got it up and running again.  I owe a post about Kate's 1st birthday and what a true blessing she has been to us!  And, I hope to get an evening in to just reply to a few weeks of e-mails.  Thank you all for your prayers and support!

Bonnie

Goals and emotions

When I don't blog or e-mail, I am either fighting to keep my head above water, or I'm depressed and don't want to write. For months, it's been both. I have always felt that I need to avoid sharing the difficult side of things. I am a positive person and I always hope for the best, but that just isn't always reality. 2009 was a long year. It felt like three years.

Autism is exhausting, lonely, expensive, alienating and disheartening at times. I have not had a full night of sleep in 1 1/2 years. I am not the same person I was a year ago. Autism consumes my life. I feel like a monster sometimes, trying to figure out what happened to my son and what I can do to fix it. Last week, I found a video of Josh at 15 months. Someone was playing guitar hero. Josh was watching it, clapping, dancing along and really interacting with us. My mom asked me if that video made me sad, and it actually made me happy. I have wondered if days like that ever existed, so it was nice to find that video and validate that things really were "normal" at some point. Now, we have many sleepless nights, with a miserable son, crying, screaming, itching uncontrollably and he can't tell us what is wrong. I spend time each day racking my brain to figure out what new food he ate, what chemical he came in contact with, or what changes might have occurred to bother him. He can't tell us his stomach hurts, or that he has a headache, or that the light is hurting his eyes. The best way I can explain it is like being a first-time parent figuring out your baby's first ear infection or tooth coming in. You just have a crying baby, not sleeping at night and you have to figure out why.

My friendships have changed. Some friends don't know how to approach the subject or are obviously uncomfortable discussing our situation. Some see just enough of the 90% of the time happy child who is such a charmer with his smile and non-stop soccer dribbling. They think I'm crazy. Some friends have the perfect balance of asking questions (I try to spare details) and empathy. Some friends I have just lost touch with in all the craziness. Some people we've never told. There are several families at church that we have chatted with after Mass for years, but don't know them well enough for us to discuss what we've been going through. I wonder what they think when they ask how old he is now, and then try to have a conversation with him when he just repeats every third word he hears. I have made many new friends as well. I have met many moms of autistic children and they have been so important in keeping me going. I don't have to tell them how much it hurts to watch my child suffer at night and head-bang during the day. One I met a few weeks ago is the reason I am writing all this. She mentioned how all these feelings are here, but we're stuck feeling like we have to put on a happy face and cover how hard it is to deal with, or worry about offending those around us by talking about it. All my friendships have their place and I'm thankful to be blessed with friends. I think I just also realize that I can't bottle up all my feelings and put the weight of our world on my shoulders. Struggling to deal with autism doesn't mean we don't love our kids or don't see the good in them. It just means we're human and any parent knows it hurts more to see your child suffer than to suffer yourself.

I have spent the last month figuring out what I hope for 2010 and what are reasonable goals for the year. Here's what I have:

1. Get counseling. I need help dealing with my feelings and taking care of myself so I can remain functional for my husband and kids. I've been talking about this for months, but haven't been able to make the call. Now it's a goal, so it can only be measured by doing it or not doing it.
2. Be realistic. Rome wasn't built in a day. Josh's body didn't shut down in a day either. We have a long journey ahead of us and I praise God for the amazing progress we have seen in Josh. If Josh progresses in his lab work and assessments, then we've progressed.
3. Take the next step in Josh's dietary interventions. We've been gluten, casien and soy free for 9 months now, with limited sugar intake. Yeast overgrowth in Josh's digestive tract has been a continual problem. His doctor suggested the SCD (specific carbohydrate diet) and we started that over the weekend with the guidance of his nutritionist. Ugh. That will be the next blog post.
4. Make time for myself. I actually feel a desire to exercise! I have so much frustration built up inside of me and need a way to deal with stress. I need to make time for exercising. I need to make time to blog, email and return a few phone calls.
5. Appreciate the small victories. You might not think this is measurable, but I keep a rating of Josh's behaviors and physical well-being each day. I added a section for victories and milestones to remind myself to find the good parts too.

Sad that it took a month to come up with 5 goals, but these will keep me busy for the year. I had a follow-up appointment with Thoughtful House the last week of January. Between our treatment plan from that appointment and the push to implement SCD for Josh, my rear has been officially kicked back into gear.

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

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!

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!

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.