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.

Discharged from PT

Josh was re-assessed for physical therapy back in June (1 year since we started).  He met his 6-month goals, but the bar was raised, so his age adjustment didn't move.  His physical therapist suggested we try going monthly to see if he'd progress at the same rate.  We did that and in October, he didn't do well.  She feared she made the wrong recommendation and wanted us to re-asses him after his 4th birthday. 

At some point in November, Josh started climbing stairs with alternating legs and no rail. His climbing at the park improved greatly and when we worked on hopping on one foot, he finally can get his right leg slightly off the ground.

We went the day after Thanksgiving.  She scored his results and he was discharged from PT because he tested in age range!!!!  Happy Thanksgiving!

Here is her discharge report:

"Josh scored an overall gross motor score of  -0.87 standard deviations (or z score) from the norm on the Peabody Developmental Motor Scales 2 test.  This score indicated overall gross motor skills within average ranges (-1.0 to 1.0 standard deviations).  He improved his standard score in the locomotion subtest by 2 improving from a 5 to a 7 in this section.  Typically 8-12 standard scores in each subtest area are considered within normal ranges within that subtest.  He also improved his object manipulation (ball skills) and stationary (body control/balance) by 1 each.  These improvements and an overall range from gross motor with within average rangees, indicates strong improvement by Josh in his gross motor skills.  Therefore, PT is no longer indicated for Josh at this time and discharge was discussed with his family.  It is recommended that he continue to have exposure to gross motor activity through community based activities such as playgrounds with siblings and friends....  Peabody 2 scores Josh's chronological age at 48 months."

48 months!!!  I hated seeing his ball skills and locomotion at 18 months for the longest time.  I'm very excited.  Way to go, Josh!  Way to go, Emma and Kate for all their play skills that helped push him along!

We were at a play ground recently and Josh was having trouble climbing up some platforms around a pole.  I helped him a few times, then he got it on his own.  When I was helping him, a little boy around 5-6 years old was asking Emma about Josh.  He asked how old he was, then questioned why he needed my help to climb since was able to that when he was younger than Josh.  Emma said that Josh just needs extra help sometimes just like her little sister does.  He said okay.  I loved that the little boy was comfortable asking questions, how Emma answered so perfectly with no hesitation, and that the little boy continued to embrace Josh and play with him and Emma.

We recently started classes at a special needs gym.  Josh is with 2 other little boys and enjoying it a lot.  I think it will be the perfect transition from PT to help maintain his gross motor skills and help rebuild his core muscles and coordination more.  In addition, it's a great opportunity to work on social skills, too.
For those in the Dallas area, check it out:
http://www.sensationalmovement.com/

Happy 4th Birthday, Josh!

We celebrated Josh's 4th birthday before Thanksgiving.  He had a great birthday.  We had my parents, brother and grandmother over in addition to Danny's parents the evening before his birthday.  Josh had his usual "pancakes" for dinner with an extra side of meat and an extra banana to eat.  I made him a diet-compliant cake from baked butternut squash, honey, cinnamon and a duck egg.  I baked it and made frosting from a mashed banana.  He was SO excited to have a cake with a number 4 candle on it!!!

As we sang "Happy Birthday" to him (or hacky birkday, as he says it), he looked around at each person singing, beaming.  He soaked it all in and was very clear to answer that he was 4 when we asked.

He loved opening presents and was amazing checking out each gift and saying, "thank you" to the giver.  He geniunely enjoyed the day.  When he was done opening presents, he said, "Happy Birthday all done!"

One of my highlights of his birthday was the morning of.  He goes to the neighborhood elementary school for group speech therapy two mornings a week.  His speech teacher coordinated with Emma's teacher to bring him to Emma's class and have her class sing to him.  She said he was ear-to-ear smiles and when they finished he said a big, "THANK YOU!"  She also said he kept saying hello to Emma, but Emma, who follows all the rules, didn't think she was allowed to talk, so she only waved back at him.  He persisted saying hi to her until he got one back.  This story brought me such joy because he loved it and felt so special on his birthday.  It was also heartwarming for Emma to come home and tell us about it and the joy she felt, too.

We have recently found a special-needs gym in the area, started by an occupational therapist.  We have enrolled Josh for weekly classes to help build his core muscles and give him some social opportunities.  We had a birthday part there the following weekend and invited some of Josh's friends from behavioral therapy school, as well as a few family friends.  They had a great time!  We didn't do cake or presents, just a fun play date with his friends.  Our challenge was that Josh viewed it as another birthday party and since we had one at home during the week, he assumed that another party meant he was another year older.  It took us about 4 days to convince him that he is still 4 and not 5.

Six months ago, I dreaded Josh turning 4.  It seemed that each time we took a few steps forward, the bar kept getting raised and even though he was meeting his therapy goals, the goals kept moving on him.  I didn't want a day to think about all he had not accomplished.  But his birthday was a happy day.  Josh has progressed so much and I feel hopeful for his future.  My dad is always wonderful at helping me keep perspective.  He reminded me that my hopes were that by the time Josh was 4 he would be potty-trained and that he could have a basic conversation.  He accomplished both by far!

Happy Birthday, sweet Josh!

My budding photographer

Josh loves my camera. In fact, I can't call it my own anymore. Like many autistic kids, he can figure out any gadget with minimal assistance and in remarkable time. He loves to take pictures, although we are working on him turning the camera around. Every time I download pictures off my camera, I get a good chuckle.  Here is a SMALL sampling of his best work...

And, let's not forget video mode.  Emma and I laughed a long time at this one...

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.

Potty humor

I've been working on my update on Josh's progress.  Danny has been working a ton, so my computer time has been more severely limited than normal.  So, until I finish, I'll share our potty training humor...

Josh graduated himself to Pull-ups about a month ago.  He came home from therapy in some one else's pull-up, decorated in Toy Story characters.  Specifically, Buzz Lightyear and Woody.  Josh LOVED this pull-up and kept it dry all evening, through the night, and the next morning.  He was devastated when he went #2 on it and we had to throw it away.  I told him that if we got ready for school quickly, we could buy some on the way.  We did and he held one in his hand the whole way there.  I told his therapist that no work would be done until he had is new pull-up on.  He's slowly progressing, but we're progressing.  I'm very optimistic that we'll get him into underwear by the time he's 4.

So, I would like to think that most parents are a little over the top, like I am, when it comes to potty training.  Especially, with communication delays, I over-emphasize the state of his diaper.  We started by talking with him about just that.  "You went pee in your diaper.  It is DIRTY."  "J, that's a big poopy in your diaper.  It is DIRTY."  I caught my parents giggling when I changed Josh's diaper and said, "Josh, you have a BIG pee-pee in your diaper."  They replied,  "Yep, Dad would be proud!"

So, now I catch myself giggling every time I try to talk to him about his diaper.  The purpose of the characters on the diaper is so the kid will be upset if they go to the bathroom on the character.  "Josh, did you get your Woody wet?"  "Josh, Woody is so sad..."  No one at Huggies thought of this?!?  LOL.

Josh's story

One of the nutritionists we have worked with is working on a book.  She asked me to write my testimonial of what we've been through with Josh for her to include.  I went over the word limit and leave that to the editor to fix.  This was a challenge, to sum up where we've come from on this journey, to look backward and remember how he was before things got bad, to remember the darkest days.  I also find much joy in how far we've come.  We were not functional a year ago and now, we have so much to be thankful for!  So, I figured I should get blog credit for writing this all out.  Here is what I submitted for her book, in addition to all his lab work (which I will post here in the future as well).

My son, Joshua, is 3 ½ years old. He has been diagnosed with PDD-NOS and is on the autism spectrum. I had a normal pregnancy with no complications besides a sinus infection. Josh was induced at 39 weeks, born a healthy 7 lbs., 15 oz. and handsome with his dark hair and dark eyes! He hit all his milestones the first year, but most on the late side. We struggled with food allergies, wheezing, eczema and sleep apnea during his first year. I was able to control the severity by altering my diet while nursing him and after he was 7 months, he was doing pretty well. During his second year, he started to have ear infections and viruses. Around 18 months, he started to lose his language, eye contact and responsiveness. His frustration level was growing and head-banging, self-injury and severe tantrums ensued. His digestion became irregular and he became chronically constipated. We assumed his self-injury was due to frustrations in language delay and called ECI for a speech assessment. We started speech services at 21 months. A few months later, Josh had another round of ear infections and while on the antibiotics, he went crazy. He cried almost non-stop for days and hit his head severely into the floor and walls. It was terribly upsetting and my pediatrician and I agreed we needed to stop the antibiotics immediately. As the next few months went by, the differences between Josh and his peers at daycare grew. Sensory issues started to develop. Several times a day, Josh would scream, cover his eyes with his hands and run to the corner of the room. We could not drive over speed bumps or railroad tracks without screaming and I avoided driving by loud vehicles as much as I could for him. Josh woke several times a night and seemed to be in pain. Our concerns continued to mount.


At 27 months old, Josh and his big sister welcomed their baby sister to the family. At her 1 week doctor appointment, we spoke with our pediatrician about Josh’s head banging getting worse as well as his lack of sleep. She encouraged us to do metabolic testing, as she had seen many kids with behavioral and sensory issues improve with custom vitamin blends. We performed the lab work and waited weeks for the results. Before they were back, Autism Week received a lot of coverage on television. My husband did some additional reading and shared his concerns that we needed to have Josh evaluated for autism. I made an appointment with our pediatrician and prepared a list of concerns to discuss with her:

• Head banging
• Severe tantrums
• Unexplained breakdowns
• Closing his eyes to shut out what is happening around him
• Fascination with things that spin: fans, clocks, helicopters, wheels
• Attachment to blanket and balls
• Resistant to change: food, TV shows, books, riding in a new car
• Toe walking
• Picky eating: never eats rice, pasta, eggs and phases of eliminating meat or dairy
• Speech delay
• Sensitive to loud noises
• W-sitting

Our lab work was available when we went in to address developmental issues with our pediatrician. It showed many abnormalities in his metabolic cycles as well as severe nutrient deficiencies. To this day, I am thankful that our pediatrician put us on the biomedical route for addressing developmental issues in our son rather than pushing us to a diagnosis and working from that angle. We ordered our custom vitamin blend for Josh and researched all we could so we could jump into a plan of action to help him. We started by removing casein from his diet. Josh turned into a monster. My husband described his behaviors as similar to an addict going through detoxification. It was a very rough 10 days, but we turned a corner. Josh began to sleep a little bit better and his head banging was starting to reduce in frequency. It was still frequent, but any improvement was a huge win for us. We followed up next by removing gluten. It wasn’t as marked of a difference as removing casein, but as months went by, we continued to see behavioral improvements. We started occupational, speech and physical therapies every week and ended up enrolling Josh in an ABA therapy program.

A year has passed since we started making dietary changes. We have been so blessed to work with some of the best nutritionists and doctors for our son. They have helped us to get a full evaluation of Josh’s internal health. My 7-year-old can tell me her throat hurts or that she has a headache, but watching my son suffer and not be able to tell me anything about how he feels or where it hurts has been extremely frustrating. We have spent many nights up with him, feeling hopeless as he is visibly uncomfortable, itchy and sometimes in pain. Yeast and bacterial overgrowth in his digestive system have been our biggest battle. We were able to initially control them through medications, but the yeast, in particular, continued to return. With the advice of our DAN doctor, we started Josh on the Specific Carbohydrate Diet 5 months ago to control yeast overgrowth. We work closely with our nutritionist to incrementally add easily digested foods one at a time to watch for food sensitivities and allergies. We had a rough start, but the results have been amazing. After 1 ½ years of abnormal bowel movements, we finally have regular and formed stools! Josh sleeps through the night about 75% of the time and head-banging is a rare occurrence. He has progressed exponentially in his behavior, social, speech, gross motor and fine motor skills. As a family, we are functional again. We can go to the grocery store together. We can go to the museum or a park. He initiates conversations with us and wants to communicate and socialize. Currently, he is developmentally equivalent to a 2 to 2 ½ year old in most areas, and we are so grateful for those strides. We still have a long road ahead of us, but we see great things in store for our son.

The dietary changes we made for Josh have helped our entire family. We are all healthier and have a higher importance on what we eat after seeing what an improvement the foods we eat can make on our bodies. My youngest child is now 15 months old. I was able to detect food intolerances very easily with her while nursing because of all we learned through Josh. By 2 months, I realized she did not tolerate milk either. Once I removed it from my diet, all signs of eczema and wheezing were gone. Of my three children, she is the only to make it through her first year without an ear infection or antibiotics and she’s still going strong. I saw improvements in my digestion and overall health by removing casein from my diet as well as being mostly gluten-free with my son. I lost 65 pounds without a lot of effort. My blood work this year came back better than ever in all areas.

Our priorities have been realigned. We enjoy a lot more of the simple things in life: watching our kids play together, hearing Josh sing a song for the first time, and hearing the coveted “I love you.” We have learned to find happiness and joy in each small milestone. We see parenting in a more selfless way and have such respect for all so many parents are going through to help their kids. Our children are blessings to us and the autism path we are on has changed our lives forever. We will do all we can for our son to reach his potential and are grateful to Faye for her guidance and encouragement along the way. She was quite a light for us at the beginning of our journey and we know she shares in our joy as our family continues to continue recovering Joshua’s health.

Happy Mother's Day

I can't let Mother's Day go by this year without posting.  My perspective on mothers has changed drastically in the last year and mostly, I've grown to further respect and love the mothers I am blessed to know and have in my life.  First off, my mom is amazing.  She's such a wonderful friend to me and there is no end to her generosity.  She always listens to me, is the first to offer a hand, and shares in every joy and pain that I feel.  I am so blessed to have her in my life and thank God for her every day.

I also think of my birth mother.  For those of you who don't know, I was adopted as an infant.  My parents got me on Good Friday, when I was 11 days old.  After having 3 children, I further respect the difficult and loving decision she made to give me up for adoption.  I do hope that I'll get to meet her some day and let her know myself how much I love her for the love she had for me at such a young age.

I have met many amazing moms in the past year.  The therapy center Josh gets his OT, PT and speech services special needs children.  It is hard sometimes to see the kids who come in there, each with a parent trying to get help for their child, the majority pushing smiles through the difficulties they are overcoming raising a child with special needs.  I am inspired by so many and am a better person for meeting many amazing moms in addition to those I have had by my side for years.

Lastly, and certainly not least, I have grown in love for our Blessed Mother, Mary. As a Catholic, we ask the saints in heaven to pray for us. We read about and celebrate the lives of numerous saints who faced challenges in life, just as we do, and they perservered in faith. Danny has told the kids that the difference between saints and sinners is that when saints fall down, they get back up again. My devotion to Mary has certainly changed in the past year. In praying the rosary, I've always reflected on the life of Jesus in the mysteries of the rosary, but in the last year, I grew to see the life of Jesus through the eyes of Mary. She of all people knows how it hurts to watch your son be hurt unjustly, suffer, and feel helpless. When Josh used to be awake in pain during the night, I know her prayers were with me to help me see compassion for his pain before frustration about my lack of sleep. Who better to pray for us than the mother of Jesus who is in heaven with Him. I look to her for strength through prayer and her loving example of what true motherly love should look like.

Today, I pray for the moms I have known and loved for years and the moms I have met and their stories have stayed with me:

• For the moms who make each evening and weekend special time, after working a full day.
• For the moms who lovingly gave up their children for adoption.
• For the moms raising four children, with a joyful smile, making it look easy.
• For the moms who have been down the autism path before me, who gave their time and effort to make our journey easier.
• For the mom whose 3-year-old son overcame cancer, but suffers from developmental delays due to complications during chemotherapy.  He is currently wheelchair bound.
• For the mom with 3-year-old twins, a boy and a girl.  The girl is working on crawling, eating and talking and wears glasses and a hearing aid.  I have never met a mom with such kindness and joy while enduring such difficulty.
• For the mom with 3-year-old twins who delivered prematurely and both have undergone multiple surgeries on their heart and brain.  The boy suffers from down's.
• For the mom of a 3-year-old boy with cerebral palsy.  He brings me joy each week he comes in for occupational therapy.  His mom was told he would never walk, and he walks in each week with a big smile and his mom always says, "God is good."
• For the mom of a sweet 3-year-old girl who is learning to use her new wheelchair.  They visit me and Kate each week on their way out of therapy.
• For the mom of a 9-year-old boy who takes him in for therapy each week.  She is so kind and compassionate as they visit together in the waiting room.
• For the mom worrying about who will care for her adult child after she passes away.
• For the moms who are always looking for fun adventures to spend quality time with their kids.
• For my college friends who lost their 4th child in her second surgery after birth.  She beautifully prepared herself and family to raise a child with spina bifida.  I could never imagine burying my child, but she and her husband showed strength in faith.
• For the many autism moms and children with special needsI have met, who are giving of themselves and their lives to help their child.
• For the moms I get out with for pedicures or dinners, and the love, support and laughter we share.
• For all moms who give all they can each day out of love for their children

Happy Mother's Day!

Mommy moment

I look in the mirror and scare myself sometimes.  I finally have realized I'm closer to not 21, than I am to 21.  Then, I add in the circles that have developed below my eyes, and the fine lines around them.  I don't know why, but Emma has found it important to tell me lately that I am closer to 40 than 20.  Sigh.

Anyway, our mornings are crazy!  I cook all the ingredients for Josh each night and have moved my showers to bedtime so I can at least say I am clean each day.  When we wake up, I turn on Barney for Josh and Kate while I puree Josh's foods for the day and put blobs of it into the frying pan to make his "pancakes."  Danny and I tag team getting everyone fed, packing snacks and lunches for the day, and getting everyone dressed.  More often than not, some one requires an extra diaper change.  Emma's school starts at 8:00 and Josh has to be at some therapy each day at 8:00, except Fridays.  When 7:25 hits, I hurry to brush my teeth and hair and throw on some clothes while Danny loads the kids in the car.  The goal is to be driving by 7:30 most days.  I've given up on makeup that isn't thrown on in the car when I'm in the drop off line at Josh's school.  I think I'd have to introduce myself as Bonnie's sister if I ever showed up to therapy in makeup.

Last week, Josh had an 1 1/2 hour appointment with the allergist.  I was throwing on my clothes in my usual fashion.  I recently bought a few new tops and saw a black one I didn't recognize.  I couldn't remember buying it, but proceeded to put it on rather than the old one I wear weekly.  It seemed a little big, but I knew I couldn't credit anymore weight loss since that's come to a hault.  I was a block from Emma's school, looking down at my shirt when it dawned on me - I was wearing my black top to my new pajama set!  No time to go home.  I sat in the allergist's office for almost two hours in my pajama top.

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?"

Happy Birthday, Kate!

I can't believe Kate has turned 1!  She has been such a blessing to our family on so many levels.  We named her Katelyn Grace for all the graces we have received since we learned she'd be joining our family.  Kate was planned by God, not us.  Several months before we found out I was pregnant, Danny received a promotion at work.  It came with a really good raise and I remember praying that God would help us to use the money how He wanted us to.  I looked into working part-time and that wasn't feasible.  We put an offer on another house.  That didn't work out.  So, God made it clear to us.  It was July 1, 2008 when I came home at lunch and took a pregnancy test and learned she was on the way.  We started saving up so I could quit working after she was born.  It was August, 2008 when we started working with ECI for Josh.  There was no doubt I needed to quit working by the time Kate was born.  She's my buddy on the run all the time.  She spends hours in the car with me, waits in therapy waiting rooms and loves to grocery shop.  She gives me reason to smile throughout the day when it's just the two of us and I'd be lonely without her.

Kate has a sweet demeanor about her, yet she's very insistent on exploring and pursuing what is on her mind.  She is an observer, then tries out what she watches without looking back.  Of the three kids, she is definitely the most verbal, which says a lot after Emma.  Kate says all of our names, is very quick to say no when I offer food she doesn't want, and loves to be in the middle of whatever Emma and Josh are doing.  She keeps my days interesting and when she is quiet for too long, I better find out what she's doing quickly!  (See below.)

Thank you, God, for our precious baby girl.  You are all good and we are thankful for the graces received through our sweet Katelyn Grace.  Amen.

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.