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Tuesday, November 29, 2011

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 :).

Wednesday, November 23, 2011

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.


Thursday, November 10, 2011

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.

Tuesday, November 8, 2011

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!!