Happy 8th Birthday, Emma!

A slight delay in posting, like a month, but who is surprised?  Had some pictures to find from earlier birthdays, and that is a side effect of having 2 kids with birthdays in the middle of the holidays! 

It's hard to believe it has been 8 years since I became a mother!  I had no idea how much my life would change.  I thought I knew what the word "love" meant, then God entrusted me to care for one of His angels.  I remember looking into Emma's eyes for the first time and I knew she came straight from God.  He picked her to be our first-born, to be the one to challenge us, to be the best big sister for Josh and Kate, to inspire us to be better people. 

8 seems like such a big age!  Emma is her own person.  She has her own style, her own personality, her own desires, her own way of doing things.  I am so proud of her!  She is the best big sister I could ever ask for. She seeks to do good and stand up for what is right.  She is smart and has a great sense of humor.  She loves to read books, do art (especially painting), watch football with her daddy, wrestle with her brother and read to her sister.  I knew I loved her from the minute I knew she existed, but I didn't know how much I would love being her mom!

Happy Birthday, Emma!  We love you more than you'll ever know!
Now, a trip down memory lane...

My, how the years have flown by...

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.