Hayden's Son Rise Therapy Room

I have had a few questions about the type of therapy program we are doing and what the room looks like. So here is the answers :)

We are running a full time Son-Rise Therapy Program in our home for Hayden.  He is currently getting about 30 hours a week of therapy and my goal is to get it up to about 60 hours a week of therapy.

So what is the Son-Rise Program?  Well in my own words it is a loving and respectful play therapy that Hayden loves :)  I must say that we LOVE it too!!  I truly enjoy getting down on the ground with Hayden and just spending time with him with no distractions.  It is honestly a nice break from a very over stimulating world.  There are no electronics, no other people.  It is just Hayden and I doing what he enjoys.

The main focus in Hayden's Son-Rise program is improving and building on communication and eye contact.  We do this through joining him, motivation, excitement, energy, and enthusiasm.  Tonight in therapy room Hayden and I had a great session.  He usually has me draw the Thomas the Tank Engine characters on his dry erase board.  When we started doing this 5 weeks ago he would just say, "Harold" when he wanted me to draw him.  Tonight he said, "Draw Harold Helicopter Mommy."  I then said, "You want me to draw Harold the Helicopter."  Hayden replied, "YES."  Hayden never said the word "yes" until about a month ago.  It seemed that "yes" had no value to him.  He now uses it frequently and correctly.   Normally I just go ahead and draw the face, number, details, and get the correct colored marker myself.  Well not tonight, a light bulb went off!   I decided to ask Hayden to hand me the color marker that Harold is.  Much to my surprise he did and told me the color.  I then congratulated him and made a big, huge deal of it:)  I then went on to draw Harold the Helicopter. I decided to ask Hayden to draw his face.  He grabbed my hand and we drew it together.  We then went on to draw a few other characters.  He drew the face himself on several of them, gave me the right color of markers, and told me what numbers they were.  It was beautiful!!!  I think we spent 20 minutes on this activity.  Hayden stayed right with me and was fully engaged and chatted back and forth with me.  Through out the whole activity I praised him and told him how smart he was, thanked him for his eye contact, and told him how much I enjoyed spending time with him and drawing Thomas the Tank Engine Characters with him.  I need to work on my drawing skills, but you can see the faces that Hayden drew and he even drew a couple wheels on James.

Hayden transitioned from drawing on the dry erase board to drawing on himself.  I thought this was a good opportunity to join him.

At first Hayden was in his own world coloring himself.  He then noticed that I was coloring my hands.  He had the biggest grin on his face.  During this time I am telling Hayden how much I enjoy coloring myself with him (which I do....it is truly relaxing) and making funny noises while doing so.  Hayden then looks at me in eyes.  This is a green light!!!  I then expand on the idea of coloring myself.  A little background.....Hayden loves my flabby, nasty, jiggly belly (which it's his fault it is like this).  He likes to blow raspberries on it and jiggle it.  With out hesitation I lifted my shirt and started to draw a big circle on my belly and asked Hayden to draw the eyes, ears, nose, and mouth.  He was so EXCITED to do this that he could hardly contain himself.  We then made my belly jiggle and I would make the smily face talk.  He then lifted his shirt and said, "face my belly."  I drew a smily face on his belly.  Great fun I must say.  He was losing interest so I chased him around the room with my jiggly, smily face belly.  Oh, how we both laughed and laughed and laughed.

Here is what Hayden's Therapy Room looks like.  It use to be an old crapy, leaky sunroom.  Not anymore!!


This is a picture of the french doors that we had a one way view mirror put in.  On the inside it is a mirror. Hayden LOVES his mirrors!!

All of toys and games are put up high on a shelf on purpose.  This way he has to ask to get what he wants.....very motivating!!

The windows have a frosted glass film on them.  They let light in, but you can't see out.  This aids in providing a distraction free environment.

Here is the slide that we do creative things with.  Hayden likes to jump off the top or jump to me from the top.  I like it when we roll several marbles down it and they hit the metal door stop and make a pinging noise!!

This is what the french doors look like on the inside of the house.  I can see in, but he can't see me :)  Observation is great because we can provide feedback on therapy.

Is it time to move on??

I can't believe that it is the end of October already!!  Time is seriously flying by.  Hayden's therapy room is finished and he is getting about 30 weeks of therapy a week.  We still need more volunteers!!!  We need volunteers to work with Hayden or watch Ruby so we can work with Hayden.  If you know anyone send them our way.

Hayden had a check up at his specialist in Carmel this week.  Hayden weighs 32 lbs and is 39 inches tall. Overall he had a good check up.  We are fading out some of his supplements(thank goodness).  Hayden will start seeing the doctor every 3 months instead of every 5 weeks.  He got his lab results back and his gut remains a yeasty mess.  GRRR!!!!  We have been working so hard for the past two years to get rid of the yeast and it just won't let go of my little man.

The whole yeast thing has me.  I am thinking about and researching different options to do and try.  I am leaning towards a diet change.  We are already gluten, almond and dairy free, limit soy, limit sugar, no artificial colors, and an all organic diet.  The two different diets that I am looking at is the SCD (specific carbohydrate diet and the GAPS diet.  These diets eliminate food that feed yeast.  The problem is that they are a challenge to do.  I once thought that it was going to be impossible to get Hayden off dairy, but we did and he helped him so much.  I am leaning towards the SCD diet because it does not involve going to the butcher and getting bones from animal cut in half to make stock with and eating fermented vegetables is not a requirement of the SCD.  However the GAPS diet is amazing for gut healing.  I wish someone could just tell me what to do!!!

I am also considering taking Hayden to a different specialist for a second opinion.  I kind of feel like our Dr in Carmel has gotten Hayden as far as she can.  She is wonderful and I have a ton of respect for her, after all she gave me my son back :)  There is just something telling me that it is time to move on.  This is not going to be an easy decision.  The one doctor that I am considering seeing has an office in Texas and one in New York $$$$$$!!!

I do know this though.....when I switch Hayden's diet I am going on that diet with him.  NO more cheating for me!!!  If it is good for him it is good for me and I need to be 100% supportive and not cheat behind his back.

I think I have also figured out Hayden's strange bouts of SUPER-DE-DUPER hyperactivity no-sleeping cycles.  Back in May after Brandon and I went the Autism One we switched how we were doing Hayden's hyperbaric oxygen therapy treatments.  We started using a protocol that you do 1.5 hours a day for 30 days and then take 30 days off from hbot.  We also started Hayden's heavy metal detox (chelation) at this time.  I thought his nightmare of a behavior was from detox and left it at that.  Well he have been off chelation for almost 2 months now.  Hayden had a round of his freakish hyperactivity no-sleeping period earlier this month.  Well this month is a non-hbot month.  I started thinking about why, what are we doing differently, did he eat something he was not suppose to??

Ta-Dah.....light bulb went off in my mind....it's the hbot!!  Sure enough two sessions in the hbot, Hayden was sleeping better and the freakish hyperactivity was going away.  Huge sigh of relief.  So we are now going to do one hour of hbot every other day.

I wish I would have video taped his freakish hyperactivity.   I mean constant movement with several movements in one and a hot stimming mess.  It was HORRIBLE!!!  He would be up at 3am and ready to play and not take no for an answer.  It is amazing that Brandon and I survived this behavior.  Just thinking about it makes me want to hide in a corner and rock back and forth.

We have a teacher from the Son-Rise program coming the first week of December to working with Hayden, answer our questions, and give us some feedback.  I am very excited about this.  Brandon and I have also decided that I am going back to the Son-Rise program in April for another weeks worth of training.  I can't wait to go back.  It is such an amazing place.  I wish we could just pack up and move there so I could become a certified Son-Rise teacher and help more families.  Maybe one day!!

Hayden has been making some great strides with the Son-Rise program.  He is communicating so much more.  He is actually telling me  his emotions.  I ask him what is wrong and he tells me that he is sad or angry.  He has even told me he is happy :)  In the past week we were snuggling and he sang the whole entire song that I made up for him as a baby.  WoW...that sure brought out the water works!!  Even Brandon had a tear in his eye.  His eye contact is also greatly improving.

I am beyond proud of my little man and all of his hard work.  It is pretty amazing that we our on our way to recovery.  I read a snip it of his evaluation to public school system did when he turned three.  It said that Hayden severely autistic.  It is always good to remind myself of where we were and to think of where we are now.  Hayden is no where near the severe side of autism.

Heavy Metal Detox, Yeast, Allergies, and School

The last six weeks have been a roller coaster of events and emotions.

We started Hayden's heavy metal detoxification using dmsa.  Hayden takes dmsa four times a day for three days, then has 11 days off dmsa and we repeat the cycle.  We are doing four cycles then re-evaluating lab work of heavy metals and check his liver and kidney function.  We have completed three cycles so far.  One more cycle and then a break!

I am glad to be finally getting the heavy metals out of his body but boy has it been rough!!!  Hayden has been "off" for about six weeks now and it scares the crap out of.  He has NEVER shown regression for more than a day or so and we are now six weeks in.  I have been told repeatedly that regression is normal and to hang on because big changes are about to happen. 

So what kind of regression am I seeing in Hayden?  He is stimming again :(  We got to the point were Hayden didn't stim anymore.  We are seeing lots of hand flapping, spinning, and his shrieking is back.  He is laughing at inappropriate times / things.  It hurts to see him like this.  I know that there is something going on his little body that is effecting him neurologically causing him to stim and I want it GONE!!!

He was also not sleeping well for about 4.5 weeks.  Hayden was waking up 3-4 times a night and up for the day at 4-5am.  He also stopped napping. Hayden not sleeping totally worn me down and kicked my butt.  I am very happy to report that he is back to sleeping 10 hours at night and taking a one hour nap during the day.  Thank goodness.........I seriously thought I was going to loose my mind.

Hayden is also having more tantrums.  These are not your typical three year old tantrums!!  These are tantrums that can last for an hour.  Hayden loses all ability to be rational or "reached" during these tantrums.  I feel so helpless when he is like this.  It breaks my heart to see the rage in his eyes, the spitting, the kicking, the throwing of objects or himself. 

All of the negatives and regression we have seen some positive growth!!  Hayden's social skills are improving and he has a little girlfriend at school :)  They sit by one another, Hayden likes to play with her hair, they have even been spotted holding hands!!!  I can't even put into words how truly amazing this is.  There was a time when no one, I mean NO ONE could even interact with Hayden with out him having a complete and total melt down and now he has a "girlfriend".  Did I mention that she is the only girl in Hayden's class?  I got the chance to talk with her parents and they said that she talks about Hayden all the time!!  One of my biggest concerns is that other children will not accept Hayden and that they will treat him poorly.

It is also amazing to watch Hayden interact with my parents.  He gets so excited to see them :)  He is comfortable sitting in their laps, hugging them, and kissing them.  There was a time this was painful for Hayden and now he totally embraces it.

We have been enjoying the zoo!!  It is so much fun to see how excited Ruby and Hayden get over the animals and to hear them tell me what they are and make animals noises.  Hayden also enjoys being around other people at the zoo and running and playing with the children.  This is pretty exciting stuff for us......every day things that people take for granted!!

So why the change...........I am not 100% sure!  At first I thought it was because Hayden accidentally ate some gluten.  A week into the regression I figured that was not it.  Could it be the DMSA....maybe?  Could it be seasonal allergies that have triggered a histamine release in his body....maybe?  Could it be a yeast kick up in his body?

I think its the yeast!  His behaviors are typical of yeast "flare" up.  Hayden has a doctors appointment on Tuesday and we get some labs results so I should know more than.

I am just hanging on and trying hard to stay cool, calm, and collective during this rough patch.

I just want my little man back and I think that we are slowly but surely getting there!! 

We also made a decision on school next year.  Hayden and Ruby will be attending Peace Montessori in New Haven.  I am not looking forward to the drive (50 minutes one way) but it is the best place for Hayden at this time.  It is our hope that Hayden will be able to go back to Oak Farm in a year or two.