Three Months Into the Son-Rise Program!!

I can't believe that we are already three months into Hayden's Son-Rise Program!!  Hayden is averaging about 40 hours a week of therapy.  I would like to work up to 60+ hours a week.  We really need help in on the weekends all day, afternoons or evenings during the week if anyone would like to help out.  You could watch Ruby so Brandon or I could work with Hayden.  If you can commit to at least four hours a week we would love to train you to work with Hayden.

The last 10 days have been kind of rough because of Hayden going through yeast die off.  Through all his hyperness and stimming we are still seeing some great results!!  The biggest would be Hayden's overall happiness.  My little man smiles and laughs all the time now.  I love seeing all of his facial expressions after only seeing blank ones for so long.

Hayden's speech is also blossoming.  He is talking in two word phrases consistently.  We are pushing him hard to get three word phrases and I would say he uses them 80% of the time.  He tells me if he is happy, sad, and mad.  He tells me he loves me.  The best though is that he calls me Mom all the time!!!!  I love hearing "Mommy," truly music to my ears :)  He is also calling everyone else by name.

Hayden's eye contact has also greatly improved.  We are continuing to work on improving his eye contact.  I can actually request eye contact from him and he gives it to me.  I love when our eyes connect. Every time he looks me in the eyes it is a huge celebration!!!

Hayden has also started drawing pictures of things besides shapes!!!  This is HUGE :)  He is drawing faces and animals.

I think the biggest change is that Hayden is so much more connected to us.  He is frequently in the same room with us (he use to always be off doing his own thing, in his own world).  He loves to snuggle, hug, and kiss.  He enjoys playing with his sister in a typical 4 year old way.  When one of us is away he asks for us.  This is my favorite part of the Son-Rise Program!!  When I am in the therapy room with Hayden I get to just enjoy him.  I don't worry about anything else.  I just get down on the floor and spend time with him.  I have always felt a strong connection to Hayden.  I knew in my heart that he was connected to me even though he couldn't express it.  Now I see it and feel the connection every single day :)

As Hayden grows and develops it blows my mind how much he reminds me of his Dad.  I use to always think that Hayden favored me.  We recently watched our wedding video which has pictures of us growing up in it.  Hayden looks just like his Daddy.  He may have my big, dark brown eyes but the rest is all Daddy.  Hayden also has Daddy's mannerisms as well.  I LOVE it!!  Brandon is a great man and I completely okay with Hayden taking after his dad with a little tweaking ;)


Hayden and Kit drawing faces :)

Hayden eating celery!!  HUGE for him :)  Don't mind naked Ruby she is toilet training.

The first smiley face that Hayden ever drew while working with Aunt Terri!!

Our Motto!!

 Below the Christmas tree in purple Hayden drew a penguin while working with Carleen!!

We played with the photo booth option on my computer tonight :)

 The kids as chipmunks!

 Bug eyes

Yeast, Yeast, Go AWAY and NEVER Come Back!!

As many of you know Hayden is a hot, yeasty mess on the inside.  He have been working hard to get rid of the yeast for the past two years.  It has gotten better.  It has gotten worse.  It has drove me crazy, Hayden crazy, and caused many hours of lack of sleep.  I am DONE with the yeast!!

I decided to go with a new treatment plan to rid Hayden's little body of yeast.  We are using the Candida Wellness Center out of Utah's treatment protocol.  We heard the founder speak at Autism One and have talked with several parents that have used this type of yeast treatment on their children.  There is a 95% success rate of curing yeast infections using this protocol.  Here is a link to the website http://www.thecandidayeastanswer.com.  We are using diet, bionic silver, and hard hitting probiotics to kill off Hayden's yeast.

I think it's working.  Hayden is some what of a hot mess.  He is stimming more, a little more withdrawn, not sleeping the best, and is getting agitated easier.  These are all signs of a yeast die off.  We are six days into the new yeast protocol.  We were told to expect 7-10 days of worsening symptoms.

Tonight Hayden pooped in the bathtub and put a whole roll of toilet paper in the bathtub.  He was also drinking the water.......YUCK!!!  I must say all my Son-Rise happiness went out the flipping window at this point.  Out of the tub and straight to the shower went my little Hayden.  YUCK....I mean YUCK!!  If any of you have cleaned toilet paper out of the bath tub you know this is not an easy process and then add poop on top of it.........AAAAAHHHHHHH!!  I could tell that Hayden has eaten raspberries by all the seeds left in the tub.  YUCK!!

I know this is only temporary and keep reminding myself that sometimes to move ahead you have to move backward first.  We got this!!  I will say that I am seeing an improvement in  Hayden's eye contact and speech.

At 3am last night Hayden came into our room and said, "Mommy my pants are wet."  I must say in all of my Son-Rise glory at 3am we celebrated :)  I celebrated that he told me he wet his pants and I am pretty sure that he was looking me in the eyes while saying it.  So I got up danced and cheered, helped him get cleaned up, got Hayden a snack, and we cuddled on the couch.

On a good note Hayden's speech therapist stop to see us today.  It was sure great to see her.  I wish Hayden would have shown off for her a little bit more, but that is what life with autism is like.  You want in one hand and shit in the other.

I must say that I love Hayden more than I ever thought I ever could love someone.  He is a pretty amazing little boy that I thank God for every day :)  

Amazing Day!!!

We had our outreach today from Son-Rise.  A Son-Rise certified facilitator came and worked with Hayden and answered our questions.  AMAZING!!!!

Seven out of nine of Hayden's team was here to observe and ask questions.  One of the nine was not here because she was watching Ruby :)  Truly blessed I must say!!

I learned a lot today and has hugely reassured that we are on the right track!!  Hayden did amazing with the facilitator.  When she went in the room with him he shut the door and was ready to get to work.  This truly blew my mind!!

Hayden did really good with her and had a great time working with her.  The facilitator worked with him for four hours total and answered our questions for two hours total.

I got some great feed back on using the developmental model and setting goals for Hayden.  Hayden is actually achieving goals that I didn't think that he was and has become flexible.  Someone smack me.......Hayden is flexible.  That is flexible in a behavior way and not in a physical way.  He has dropped his rigidity and need for the down to the second schedule.  AMAZING!! I use to never dare get off of his schedule or there would be HELL to pay.  I mean hours, upon hours, of tantrums.  Not anymore my son is flexible!!

He transitions from one task to another with ease, he only has a fit for a little bit when things don't go his way.  I am going to say it again....hell I might even rent out a billboard that screams, "My son is flexible." I am so proud....can't you tell :)

The funny thing is it took someone else saying it for me to realize it.  I had not clue that Hayden has lost his rigidity and need for things to be done the same way every time.  I tend to think that I am seeing things in Hayden that are not really happening because I want him to get better.  Yep, not the case!!!

Today when we were going over the developmental model I kept a little on the quiet side because I wanted to see what everyone else thought.  They said what I was thinking the majority of the time.  Hayden is well on his way to recovery!!!

I can honestly say that I feel so good about what we are doing.  I LOVE the Son-Rise program.  It has helped Brandon and I love, accept, and enjoy Hayden just the way he is.  I think I have more fun working with Hayden than what he does!!!  I LOVE, LOVE, LOVE it :)

I am signed up and ready to go back to Son-Rise in April for more training and I am hoping to take the majority of Hayden's team with me :)  Be prepared team if you come with me I am making us all matching shirts!!!

Ups, downs, and back around!!

It always seems just as we get comfortable a curve ball is thrown at us.  That curve ball has a name......AUTISM.  Autism always keeps us guessing and pushing us to forage ahead.

This past week we celebrated Thanksgiving.  Our loving families decided to make all the food at Thanksgiving safe for Hayden to eat.  It was wonderful!!! In the past Brandon and I were so stressed at gatherings, watching Hayden like a hawk to make sure that he didn't eat something he was not suppose to.  Not this Thanksgiving.....he could eat everything that everyone else was eating.

Hayden has had a great couple of weeks.  It seems we are back on track after chelation (heavy metal detox), and adjusting to his new therapy program (Son-Rise).  It always seems just as we get comfortable with what we are doing Autism smacks me up side the head.

Friday was a great day.  We celebrated Thanksgiving with Brandon's family and had a great time.  We were both very proud of Hayden.  He played with his cousins and rarely snuck off and hid.  This is a HUGE change for him.  Normally he would want to be by himself in another room, stimming away.  He smiled, laughed, and seemed to be enjoying himself.  That is until we got home and bedtime rolled in.

Hayden was agitated and difficult to get to sleep.  I could just feel in my gut that we were in for a rough couple of days.  Hayden was up most of the night.  He was extremely agitated and stimming a lot.  I got a total of one and a half hours of sleep that night.  Then it was off to work for 12.5 hours for me.  I honestly think I got the good end of the deal.

Poor Brandon had to be home with him all weekend.  It kills me to be away from Hayden when he is like this.  When he has an "episode" there is lots of tantrums (that last for up to several hours), aggressive behavior, extremely agitated, and very poor sleeping.  Unfortunately I have to work. I have FMLA for these types of situations, but I can't use it or I will be removed from the weekend premium program I am a part of which is a lot of $$$$.  Yep, I could complain for a very long time about this......but I won't!!!

I get home from work and can tell that Brandon had a super rough day and that Hayden was a hot mess.  Bedtime was a nightmare again and was followed by poor sleeping.  We continue this pattern for the next two days.

Hayden seems to back to normal the past two days.  I would even dare to say that his language and eye contact are improved.  It always seems that we have to take a few steps back to move forward.

Every time Hayden regresses it is harder and harder on me.  I panic in my own way and go into an obsessive....."why is he acting like this mode."  I think about all the food he has ate in the last few days, think about what kind of stools he has had, and his daily routine.  I think this time it was a yeast die off or over stimulation from Thanksgiving.

Speaking if yeast we are going to try a new approach to kill off Hayden's raging systemic yeast infection for good.  We have been battling if for two years now and I am DONE!!!  The medication (holistic) arrives in the mail tomorrow.  This is going to be rough on Hayden, but I know this is what needs to be done.

In order to kill and get rid of the yeast it has to be stirred up.  When we stir up the yeast in his body it will effect him even more.  So we are in for about 2-7 days of some nasty behavior from him.  Which means I should stock up on alcohol.

We also have a facilitator coming from the Son-Rise program Tuesday to work with us and Hayden.  I can't wait for that :).

Thankful for My family :)

This Thanksgiving I have a lot to be thankful for.  I have two children that are happy and thriving, a husband that I love and adore 90% of the time, and a large support system.

Notice I only said 90% of the time that I love and adore him.  The other 10% is generally when I have PMS and during that time I can not stand him.  Yes, I am a women and I am owning the fact that PMS makes me slightly (or a hole lot) crazy.  All jokes aside Brandon is my rock.  He is completely on board with helping Hayden.  Brandon centers me when I need centered, makes me laugh when I am ready to rip some one's face off, and loves me for who I am.  I miss him!!  It is hard working opposite shifts from one another.  It is what is best for our kids and I know that this is only temporary.  I am beyond grateful for the time we had together before we had children.  With out that time I know our marriage would fall apart with all the challenges we face.  Did you know that 90% of married couples with autistic children become divorced??  We are part of the 10% that will stay together :)  Yes, Brandon Hicks you are stuck with me for life!!

My sweet, easy going little girl has recently developed an attitude.  I SUCK at discipline!!  Yes, I Brandi Hicks SUCK at discipline.  I am beyond grateful that my little Ruby can tell me no and say, "Don't touch me," that I have a hard time correcting her.  I just want to celebrate that she can express herself.  I know this is wrong and I have been working on correcting her, re-directing her, and using time outs.  I will get better at discipline, I will get better at discipline, I will get better at discipline.

Ruby is my mini-me.  She acts like me, she talks like me, and looks like.  I love her more than I ever thought possible.  I have to say that I am having a lot of Mommy guilt lately towards her.  Hayden requires a lot of my time and I feel that Ruby gets the short end of the stick.  I know that Hayden needs me more, but I don't want Ruby to feel left out or that she is less important.  It is so hard on her to watch us in the play room with Hayden.  I am looking forward to this semester of teaching to come to an end.  I want to be able to take Ruby on a Mommy daughter date once a week.  I also want Brandon to take her on a date once a week too.

I tell Ruby that Hayden is sick and needs a lot of extra help right now.  I also tell her how blessed she is to be healthy and not need extra help.  I am hoping that going through all this Ruby will be a more compassionate, understanding person.  The other side of this is that she could become resentful and hateful towards Hayden and myself.

Hayden is truly thriving right now.  He is happier than he has ever been.  I love seeing him smile and laugh.  I can honestly say that I love working with him in the therapy room.  I love all the things that we do together.

Hayden's language, eye contact, and social skills are growing.  He is playing with friends, he is playing with Ruby, and he wants to know and be a part of what I am doing.  I have to make a confession.  I use to say that my children will NEVER sleep in our bed.  Hayden has been sleeping with us for the last month or so.  At bedtime I don't even try to get him to go to sleep in his room.  I LOVE, LOVE, LOVE that he wants to cuddle in bed with me, he holds my hand, and I sing to him until he falls asleep.  Tonight Hayden looked into my eyes and said, "Night Mommy." He then gave me a kiss and drifted off to sleep.  Melts my heart :)

Hayden has recently took an interest in swimming in the toilets again.  I thought we were over this phase!!      I wish I could figure out why he wants to swim in the toilet.  I was on the phone with a friend this week and I said, "I need to go...Hayden is swimming in the toilet again."  I never thought in a million years that I would say a sentence like that.  The sad thing is that this has become our "normal".  The sticker shock has worn off and my friends and family never seem phased by what they hear or see out of us.

I seriously think my life should be a sitcom.  I think we are a pretty funny group.  I honestly wouldn't trade my life for anything.  I have developed a love for autism.  I can't imagine how boring our lives would be with out it.

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.

Up, down, and all around!!!

The last 6 weeks have been really hard on me.  Hayden emotions have been all over the place.  I have been having some major fatigue.  Brandon has been very busy painting the outside of our house, finishing up Hayden's therapy room, and painting and putting new flooring in one of his apartments. Ruby has also recently developed a serous attitude.   Hayden's volunteers have not been coming as much as they had been.  All of these things add up to one stressed out and run down Brandi.

I am happy to report that I am feeling much better about everything!!  My fatigue is improving with no help or guidance from my doctor.  I decided to go completely gluten free and change up my vitamins a little bit.  I think it is helping or at least I am feeling better :)

Hayden's emotions have seemed to calmed back to his normal self.  I have decided to maintain what we are doing and work hard to get him more hours in the therapy room.  I think we just need to stick with what we are currently doing until January and then I am going to reevaluate switching up his diet and seeing a different doctor.

 I have been reminding myself daily of just how far we have come. I see improvements in him every day.  I also keep telling myself that Hayden's recovery is a marathon and not a sprint.  Friday night he sang Happy Birthday to my Mom (it was her birthday).  He has been adding more and more words to his sentences.  He is telling me when he is sad, by saying, "I am sad."  I am getting more hugs, kisses than you would believe.  Hayden has been wanting me to hold him.  When I hold him he is relaxed and I can tell that he is enjoying his cuddle time.  In the past you could feel how tense and un-comftorable he was.  Not anymore...he loves his cuddle time with Mommy :-)  His eye contact is really improving too.  Hayden has become such a happy little boy.  He smiles and sings songs pretty much all day long.

Ruby on the other hand is developing a serious attitude!!!  What happened to my easy going sweet little girl?  She only behave naughty for me....GRRR!!  She has been hitting me, kicking me, telling me NO and saying Don't Touch Me, and refuses to go near the potty.  Ugh, I have decided this is normal and she is testing me.  I have been trying very hard to stay consistent with her.  I think it is working.  She is such my child...she looks and acts just like me. SCARY!!  When Ruby becomes a teenager I am giving her to my Mom!!

I have to give a shout out to my husband, Brandon!!  He has been working diligently to get me some help with Hayden.  He put adds on Craigslist and Care.com.  He has been screening people on the phone and arranging times to meet with people.  We have interviewed two volunteers this week (one was a dud) and have two more interviews set for next week.  The one that was not a dud that we interviewed this week is AMAZING!!  We couldn't have asked for a more qualified person.  She starts on Monday and wants to work with Hayden 6 hours a week for a year!!!  I am super excited to have her on Hayden's team.  My goal is for Hayden to have 40-60 hours a week in his therapy room.  Right now we are down to about 30 and that is with me doing 20 hours myself.

It amazes me how God provides.  Today I sold my breast pump to a lady that shared with my that she has a son with cerebral palsy.  I started talking to her about Hayden and what we are doing with him.  I shared some information about hyperbaric oxygen therapy and how it could help her son.  I told her that we could trade services...she could work with Hayden and I will let her son use Hayden's hyperbaric oxygen therapy chamber.  She was ready to start scheduling time :)

Hayden's outreach from the Son-Rise Program is set for December 6th.  A teacher is coming to work with Hayden in his therapy room, answer our questions, and give us some feedback.  I can't hardly wait.  I want to make sure we are doing the program right.

The highlight of last week was the gymnastic class that I gave the kids.  Ruby and Hayden have been practicing all of their new moves.  It cracks me up to see them do "cartwheels".  They try so hard.  I did a front hand spring for the kids.....you should have seen their faces.  Yep, I know I am one cool Mommy!!

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.

Today I pretended to be "normal"

Well, any of you that know me knows that I am not "normal" ;)  I am just me...I laugh at things that are not funny, and say the most random things.  I eat strange foods and do strange things with my kids.

Today Ruby had her two year old well baby check up at the new pediatrician's office.  I was excited to see how much she has grown and to show off my amazing little girl.

We got up today and I was excited to dress up my little girl for our big day out together.  Ruby wore tights, denim skirt, panda shirt, a striped cardigan, and her brown boots.  I fixed her hair just so.  I must say she was looking super cute :)  I even fixed my hair and did my makeup.

Off we went.  On the way to the doctors office.  I thought of the questions that they were going to ask me about her development.  I smiled as I thought of the answers.  All of my answers pointed to a perfectly normal, healthy, thriving little girl.   What a gift my little Ruby is.  She truly amazes me every day.

We arrive at the doctors office and we walk in together.  Ruby stays right with me and is happy to have Mommy all to her self for her big girl check up.  We are chatting away about all the things she is seeing.  We sign in at the desk.  Ruby is calm and smiling.  She takes her coat off and throws it on the floor.  I ask her to pick her coat up and hand it to me and she does.   Ahhh......success, my child is doing what I asked of her and not trantruming on the floor.

We sit in the office and Ruby points to the pictures of animals on the wall.  I pick her up and we walk around look at all the animals.  Ruby is telling me what they are and making the sounds of what they make.  The secretary complements me on what a smart and well behaved little girl I have.  I stand a little taller.  A little boy drops his toy in the waiting room and Ruby picks it up and hands it to him.  Check, Ruby has compassion for others.

It is then our turn.  Ruby jumps up when she hears her name and heads towards the nurse.  She smiles at the nurse and says "hi".  The nurse weighs Ruby and measures how tall she is.  Ruby is 27lbs (50%) and 37 inches tall (75%).  The nurse asks me the developmental questions......which I am super eager to answer!!!

I know that Ruby is right on target and this makes me feel like I am doing something right.  That my child is "normal" so I get to be "normal"  Ruby is right on developmentally (which I already knew that, it just feels good for someone else to acknowledge that).

The nurse practitioner comes and does her assessment on Ruby.  Ruby opens her mouth and lets her look in, she turns her head to let her look in her ears, she sits still to have her heart and lungs listened to.  Ruby even asked to have her mouth looked at again.  At this point I don't believe what is going on!!!!   That's right people my child is well behaved and I am an awesome mom to a normal child.  I feel like I just won the lottery!!

The NP then asks some questions about Ruby's health history and vaccination history.  I proudly speak up and say that Ruby has only had the stomach flu and a cold.  She has NEVER been on antibiotics and has never had an ear infection.  I then take a breath to share that Ruby is NOT vaccinated.  I told her that I am going to re-evaluate my vaccination decision for Ruby when she turns three.

Her response was great!!  She asked me why I was going about Ruby's vaccinations this way and when I told her she listened.  She then told me she supported my decisions as a parents.  WOW!!!  Woot....woot...woot!!!!!  I think we have finally found the pediatrician's office that we are going to stick with.

The NP tells us that everything looks great and that Ruby does not need to be seen for another year.  I help Ruby get dressed and he head to the check out desk.  Ruby didn't want to leave.  She said, "I stay."

As we were checking out I seen a stack of brochures.  One of the stack of brochures was about what to do when your child is diagnosed with.  SMACK....there went my morning of pretending to be normal!!!

Seeing the brochures quickly brought back to my mind all of the things that I felt and feared when I first suspected that Hayden was autistic.  It also brought up the list of things that I was told he would never do and what to expect.  It reminded me of what trips to the pediatrician were like with Hayden.  I can't even put into words how it feels to have your child to be chronically ill and to have a disability.  It use to break my heart to take him to the doctor.  I didn't want to hear what he was not doing......I already knew it.  I didn't want to be the person that everyone started at because my child was on the floor screaming or doing odd things with his cars.

I just wanted to be normal and to have a normal, healthy child!!!

I am beyond great full that todays events made me realize that being normal doesn't matter,  it doesn't make me a good mom or a bad mom, it doesn't define who I am.  Those brochures were placed on that desk to seriously smack me in the face and say, "Hey...it is what it is."  Be true to yourself!!

Yes, I have a neuro-typical child and a non-neuro-typical child.  We do strange things.  We have a slide in our living room, a swing in our hallway, and trampoline in our kitchen.  I am a crazy person when it come to my children's health.  I know every ingredient in every bite of food that my child eats.  I am a warrior for my children and will never give up on them.

So I say screw NORMAL :)  I love my family and myself just they way we are and I don't want to pretend to be something or someone that I am not.

A team of 8!!!

What a week, what a week, what a week!!

 My husband has been at the Autism Treatment Center of America for the past 6 days learning all about the Son Rise program.  I am super happy that he went and can't wait to hear all about his time away.  The Autism Treatment Center is such an amazing place.  There is something so calming, peaceful, and healing there.  We don't have many opportunities to be surrounded by other parents that understand what we are going through.  At The Autism Treatment Center you are surrounded by people that understand and want to help their children.

I can't wait for Brandon to get home and starting working with Hayden.  I am excited to see the changes that have happened in Brandon while he was gone.  I must admit I am most excited for him to come home and take back his "jobs"  I do NOT like dealing with the trash, recycling, laundry, and checkbook.  I did his jobs and I must say I did them well, but I am DONE with them and they are all ready for him to take back!!!

This week we added two more volunteers.  We have a total of EIGHT volunteers, that is right EIGHT volunteers!!!!!  It is amazing you ask for help and people help you.  Why didn't I learn how to ask for help sooner.  With Brandon and myself we are a team of ten.  I need to come up with a name for Hayden's team.  I would love to hear some ideas for a team name!!

I am getting positive feedback from our volunteers.  Hayden's eye contact is improving quickly.  He is giving complete strangers eye contact and giving me eye contact about 80% of the time now.  His using language a lot more too.  He said to Ruby as she climbed the barstools this week to, "Be careful Ruby."  Hayden is also using more specific words.  Instead of saying "help please" he will say "open the door I want a snack" or "more" he says exactly what he wants more of.

I am also seeing him being more affectionate and interactive with others.  Hayden gets so excited when his volunteers come to play with him.  He loves being in his playroom with them.  As soon as they walk in the door he starts saying let's play.  I am getting hugs and kisses on a daily basis with out even asking for them.

I am excited for the future and in love with the present.  What a gift it is to watch your children grow and develop.  I seriously love being Hayden and Ruby's Mommy.  They bring so much joy to my life.

Pieces of Us: Today was a good day :)

Pieces of Us: Today was a good day :): I must say that this was over all a rough week for us. I was in a crapy mood and have felt so run down for the past week. Hayden has been ...

Today was a good day :)

I must say that this was over all a rough week for us.  I was in a crapy mood and have felt so run down for the past week.  Hayden has been tantruming and I have not been my normal tolerant, patient self with him.  I feel like we have fed off of each others issues all week.

I must say that as I type this I am breathing deep and letting it all go.  Today is a new day after all and I am not perfect nor do I want to be :)  Some pretty amazing things happened for us this week too.

We had Hayden's first Son-Rise team meeting.  I can not even express how great full and excited for all the people that have stepped forward and are going to work with Hayden.  I feel that we are all on the same page and believe in Hayden's recovery.  I am thrilled to say that Hayden has 33 hours scheduled in the playroom next week!!!!  Yahoo, Yippie, Yahoo!!!!!!  Can you feel my excitement?  I think we are going to meet my goal of 8-12 hours of therapy a day for Hayden in the next six months.  Now to get some more volunteers!

I posted 15 volunteer wanted signs around town this week, placed an ad on the local cable station, in contact with Easter Seals, and the local newspaper is going to do an article on us.  I still need to contact the local colleges.

Hayden had a good check up at the Carmel Clinic.  Well his behavior there was horrible but the lab results were good.  His lead levels dropped from 9.1 to 5.9, and arsenic went from 33 down to 19.  He also grew another 2 inches :)  That is 4 inches in 10 weeks!! Hayden would not cooperate for a accurate weight. I am proud to say that we have finally outgrown 2T's and is wearing 4T's in a lot of things.

The majority of the week Hayden has slept 9-10 hours a night.  I LOVE, LOVE, LOVE this :)

Today was a nice ending to a crummy mood of a week.  Hayden woke up at 4:30 this morning.  For some odd reason I woke up in a good mood even though it was 4:30 am.  I got us around and we got in hbot.  Something truly amazing happened in Hayden's hyperbaric chamber today!!  We were laying there side by side reading a book together.  When I finished the book I hugged Hayden and he hugged me back :)  He squeezed me with all his might.  It was the most amazing hug a Mom can receive.  A calmness ran through me and I felt as though Hayden truly connected to me and was embracing my presence.

There was a time when Hayden would scream and tense up when I touched him.  We have slowly, but surely gotten to the point we are today.  I look forward to many more hugs from Hayden.

After we got out of hbot we made waffles together and waited for Daddy and Ruby to get up to have breakfast together.  We talked about going to the zoo and I congratulated Hayden many times for all the eye contact he was giving me.

As we pulled into the zoo parking lot I asked the kids where we were.  Hayden said,"At the zoo."  I then asked the kids what we were going to see and Hayden said, "Bill the Lion."  Yep, that was a full loop conversation and I almost wrecked the truck into some handicapped elderly people taking in the "conversation" I just had with Hayden.

We were at the zoo all day today and had a great time.  We pretend to swim like sharks, fly like bats, and hop like frogs.  I must say I got some pretty strange looks when I was hopping around and sticking my tongue out like a frog with the kids ;)  We rode the log ride, carousel, and train.  The kids were both so excited to ride the rides.  Hayden use to freak out at the thought of it.  Then came the bird area.....my least favorite.

I bird seriously flew at me and brushed my shoulder.  I am terrified of birds and I screamed, ran, and left my poor kids in the dust.  Once I calmed down and located my kids a bird flew over us and it pooped on the ground right in front of us.  Ruby then starts screaming it pooped 500 times while grabbing her crotch.     I think Hayden wanted to pretend like he didn't know us (I don't blame him).  We exited the bird area pretty quickly after that.

We came home had dinner and then I filled the bath tub with a ton of bubbles.  I decided that we would all take a bubble bath together.  I must say it was a lot of fun.  There were bubbles everywhere and I think the neighbors could hear us laughing and carrying on.

Before I knew it, it was bedtime and the kids both were happy to go to bed tonight.  I must say today was pretty amazing :)

My sweet Ruby.....when did she get so grown up?

 Hayden giving me great eye contact and ribbiting like a frog.

Ruby LOVES hippos, even ones that look like trashcans :)

 Ruby loved the boots

 Hayden was getting tired of waiting on Ruby trying on the boots.

Ruby was telling me where it's nose was.  I asked her where his belly was and she looked at where the belly is at and gave me a dirty look.

The Letter I wrote Hayden in class today

My Dear Sweet Hayden,

I want you to know what an amazing gift you are.  You bring so much joy and excitement to my life.  You have taught me more about myself and life in the four years you have been a part of me that I have learned in my entire life.

You have taught me patience.  You have taught me to celebrate and enjoy the little things that life has to offer.  YOu have taught me to accept myself for who I am and to love myself.

I embrace every moment that we have together good or bad.  I hold you tight and squeeze laughter out of you.  This has to be on of favorite things in life.  In that moment it is just us smiling, laughing, and enjoy the simple joy of being together.

You having autism has never and will never be viewed as a negative in my eyes.  You be you has transformed our lives and made us a happier, stronger family.

I love you for you.  I accept you for you.  I never want to change you and make you someone you are not. I don't want a cookie cutter child.

I love the way you smile.  I love the way to skip and jump.  I love watching you swim and splash in delight.  I love the pictures that you paint me.  I always laugh and enjoy your randomness.  Even when you run into the middle of the street and take a poop.   Ahhh, how you have provided me with a great sense of humor.

I love what a good big brother you are to Ruby.  It is truly amazing to watch you interact with one another. You love Ruby with all your heart.  The two of you connect on an amazing level.  I see the light in your eye when you say her name with excitement in the mornings.  One of the first things you do in the morning  is run in her room, turn her lights on and shout, "Ruby" with delight.

You have touched so many peoples life.  You force as all to look outside the box and see the world with new eyes.  I have a new appreciation for you blowing raspberries on my belly and jiggling the jiggly skin on my stomach (by the way you made it that way).  I now view you playing with my stomach as a way to interact with you and be one with you.

I wish for you a life full of happiness and love.  That you continue to be the sweet, loving, happy little boy that you are.  There endless possibilities to all that you can achieve in this world.  I love you will all that I can love you with and more.

xoxo,
Mommy

We NEED Your Help!!!

We NEED Your Help!!!

Cha, Cha, Cha, Changes!!!!

I am currently in Massachusetts at the Autism Treatment Center of America.  I am receiving training on the Son-Rise program.  I have a lot of people as me what the Son-Rise program is.  Well the Son-Rise program was developed by two loving parents in the late 1970's to help their autistic son.  The therapy is loving and respectful to the child that has meaning and purpose that is NOT academically based.  The focus is on communication and social skills.  You join your child is his world and then run with it.  For instance Hayden likes to shake his cars by his ear and look at the car with his peripheral vision.  I then get a car and do the same motion to engage him. Then you work with him from there.  I don't have the energy to go into every detail at this moment :)

We are in the process of converting our sun room into a therapy room for Hayden.  The therapy room will be a non-distracting environment so it is easy for Hayden to want to focus on who is working with him.  It will have a mirror, therapy ball, trampoline, and a table in chairs.  There will be shelves high up on the walls that will contain work and snacks that Hayden is interested in.  The purpose of them being out of Hayden's reach is so that he has to communicate with us to get what he wants.

The plan is to be in the therapy room as much as possible.  I would like for Hayden to be in the therapy room for at least 8 hours a day and when possible 12 hours a day.  That means we are going to need help!!!  I already have some amazing people that have stepped up and offered to help with Hayden or watch Ruby so we can work with Hayden.  We need more volunteers!!!!  If yourself or know of someone that would be interested in working with Hayden or watching Ruby please let me know ASAP!!  Unfortunately we can not afford to pay anyone at this time.

The requirements are to have an open mind, be a positive person, and have energy.  You also can not have any cigarette smoke on you (Hayden is allergic).  I will teach you how to provide therapy to Hayden and you truly need to stick with what I teach you for it to work.  There will be an observation window into the therapy room so that I can observe and others can observe me to provide feedback.  You can volunteer for an hour a week or several hours a week.  This person can be 10 years of age to 100 years of age.  

If I am hopeful that we can start an 80 hour week therapy program for Hayden!!!  I am going to be taking Hayden out of school.....wow I said it.  I firmly believe that this is what needs to be done at this time.  We need to use every opportunity of the day to work with Hayden.  We can't do that when we are wasting 2 hours driving to school and 3 hours at school.

I am making a commitment to my son!!!  I know that recovery from autism is possible for him and I am not going to give up.  We CAN do this!!!!  

Happy 4th Birthday Hayden James :)

WoW!!!  Hayden's 3rd year of life flew by.  We had a lot of great times and some not so great times.  All in all it has been a pretty amazing year for Hayden.  Every year around Hayden's birthday I write him a letter to reflect back on the year and put it in his baby book.  So here it goes!!

July 13, 2011

Dear Hayden,

I can't believe that it is your fourth birthday already.  What an amazing year you have had with lots of big changes.  I look at you and feel incredibly blessed to have you as a son.  You bring our family so much joy.  You continue to motivate us to become better people.  You force us to think outside the box and look at the world in a totally different way.  You also out smart me almost every day :)  Your creativity is truly remarkable!!

You currently love Thomas The Train, Disney Cars, and Toy Story.  Your favorite thing to do is to swim in the pool at Grammie and PaPa's house, play outside, play with your cars and trains, and anything else that includes running, jumping, and flying through the air.  You enjoy singing songs and dancing in the kitchen with Mommy and Ruby. Your gross motor skills are unbelievable.

Right now you are learning to swim and ride your bike.  You can count to 30, say and recognize all the alphabets, know all shapes, and colors.  You are learning how to read sight words.  You are completely toilet day and night.

You continue to grow stronger and healthier each day.  You weigh 32 lbs and are 38 inches tall.  You continue to broaden your diet with the exception of vegetables.  You still only eat green beans.  This makes Ruby happy because she loves veggies and has no problem eating your portion!!  Your favorite food is cantaloupe.

This year you started going to a Montessori School and overall had a great year. It was pretty amazing how quickly you adjusted from being away from Daddy and I. 

Your vocabulary is now at a normal 4 year old level!!!  I am so proud of you :)  We still have a ways to go with how you socially use your words, but steady progress is being made every day.

 You use both right hand and left hand for all things you do:)  I think this is a sign that you are a genius!

Health wise is still a struggle.  You had to be hospitalized twice this spring for asthma and RSV.  Your gut is getting healthier and healthier.  We are currently working on getting the heavy metals out of your body.  This has been hard on all of us.  It makes you hyper, irritable, and you don't sleep well.  I am hopeful that we are getting close to the end of chelation!!!

You are doing an 1.5 hours of hyperbaric oxygen therapy daily for 30 days then off for 30 days.  You also continue to take 26 different supplements a day.  You are on a strict organic diet still.  You don't eat gluten ,dairy, pork, lemon, strawberry, almonds, food coloring, and mustard.  I think I have the hang of it and have found yummy replacement food.


You have become very close to Ruby.  The first thing you do in the morning is go check on Ruby.  You play well together as long as she does not get your cars.  You also fight over Jessie from Toy Story.  Daddy says that the two of you wrestle, but I have yet to witness it.  You like to read Ruby books and work on arts and craft projects together.  You are a great big brother and Ruby adores you.

You are truly an incredible person Hayden!!  I will always be your number one fan :)

XoXo,

Mommy

Hayden and Gaige at the zoo.  Gaige is one of your best buddies :)

Your first day of Montessori School August 2010

Making Pumpkin muffins with out underwear ;) November 2010

The sea lions are still your favorite animals at the zoo :)

Happy 4th Birthday Hayden James!!!!

Autism One and Beyond

WoW!!!  Autism One in Chicago was amazing.  Brandon and I had such a great time and learned a lot.  We met a lot of amazing parents, recovered kids, recovered adults, and parents that refuse to give up on their children.  I must say that there was so much inspiration and pure positive energy at the conference.  It was awesome to be surrounded by people that are walking the same path we are.  We will with out a doubt be going back.

I have to give a huge shout out to my parents and Aunt Sandie for making it possible!!!  They took on the challenge of caring for the kids while we were away for four whole days and nights.  I couldn't have asked for Hayden and Ruby to be in better hands.  I know fun was had by all.  When we picked up Hayden and Ruby my parents looked like they had been beaten and desperate need of a good nights sleep.  I can't say thank you enough.  A break was just what Brandon and I needed!!!

I found the therapy solution that I was looking for!!!  I will be traveling to Massachusetts the end of August for 5 days of intense training in the Son-Rise program (http://www.autismtreatmentcenter.org/).  The Son-Rise program is based on love and respect.  I will be the main person providing Hayden's therapy and will teach others how to work with him.  I am so excited......I know this is the answer to my prayers.  We can incorporate therapy into every part of our day. 

Therapy for Hayden has been frustrating since he aged out of First Steps at the age of three.  We finally found a speech therapist that we love, but occupational therapy has proved to be a real challenge.  People just don't get Hayden or listen to me.  I am pretty sure that I can be intimidating.  I try hard to be respectful when voicing my opinion or offering suggestions, but sometimes I feel like I am talking to a wall!!!!  I have done my research and I work very hard with my son, freaking LISTEN to me!!!  It is beyond frustrating when people fell the need to listen out all the special training they have received / done......NEWS FLASH....if you can't apply it then it don't mean shit!!!  Okay...that's my rant and I am done.  We have been through four occupational therapists now and only liked one.

We are also going to get a second opinion to make sure that we are doing everything we can for Hayden while he is still young and has the best chance at recovery.  One of the doctors that we are considering is in New York City and has two autistic children himself, and the other is GI specialist that has clinics in Florida and New York City.  We are leaning towards the GI specialist because we continue to struggle with Hayden's gut.

We are also going to follow a different protocol for Hayden's hyperbaric oxygen therapy treatments.  We are going to do 1.5 hours daily for 30 days and then take 30 days off.  We currently are doing an hour a day.

The next thing we are going to add to Hayden's treatment plan is modulated music.  Modulated music is music that is in varying frequencies and tones that he will listen to with headphones. I am not sure how and when this will all go done but this is something that we will do daily at home.

I have also realized how important it is to take time for myself!!!!!  It truly makes me a better Mom and I need to learn to ask for help and accept help :)

Hayden having autism has been a true gift from God!!! I know that may sound odd but man it has opened my eyes and showed my how to live and love life.  Hayden is a true inspiration and I am so lucky to be his Mom.

***As a side note I am selling all of Brandon's unnecessary body parts and organs to fund Hayden's autism treatments.  I also have no problem pimping him out for services.  Contact me if you are interested ;) ***