Fall Reflections and Moving Forward

I really need to make a better effort to collect my thoughts and blog more often. It seems as a family we are moving more a more toward typicalism (yes, I just made that word up). 

Hayden is loving martial arts and is currently a purple belt. Every fall Hayden seems to regress a bit. He has started to verbally stimm again at times. I think its related to allergens and a histamine issue that I have largely been unsuccessful at treating. I also feel that his viral load is high and I am recently started to actively treat it. We are still very much involved and helping Hayden heal 100%. I look forward to the weather staying cool so Hayden can get back on track. 

Ruby is also loving martial arts, after school clubs, ballet, tap, and jazz. She is one busy girl and loves all that she does. She had a hard transition to first grade, but seems to back to loving school again.

Brandon is quickly building his real-estate portfolio, wrote his fist book, and working his booty off. That man works day and night.

Then there is me. I have been floundering with what to do with myself ever since the kids returned to school full time 3 years ago. This past fall I went back down to part time employment. I workout five days a week. I must say its my mental health. I love pushing myself and seeing what my body is capable of. The strength I have gained physically has really shocked me. This time last year I struggled with doing one push up. Today I did 50 :)

Ok, back to the floundering....... I have struggled these past three years to really figure out who I am post autism and what I want out of life. I feel like a completely different person. While in the trenches of autism land I didn't have time to think about myself or take care of myself. I devoted every waking moment to my children. Most people may think that I am overacting about my devotion. In reality most people have no clue what went on. There were many days that I didn't shower, eat, or sleep. I was focused on keeping Hayden safe (which was a 24/7 job as he didn't sleep), preparing all his food from scratch, running, training, managing, and working in his 40-60 hour a week home based therapy program, parenting my infant and autistic toddler, managing and delivering Hayden's supplement schedule, and working my job 24 hours a week outside the home. Looking back I am uncertain how I not only survived what I did, but truly lived in the moment. I have PTSD from it and still have exhaustion. It's not bad by any means but certain things put me on edge.

Ok, back to the floundering yet again.........We have all changed greatly from our experience with autism. It's forced Brandon to look completely outside the box to secure a future for our family. Ruby is loving and accepting of all people. She does not shy away from people with different abilities. Instead she becomes their friend and loves them. Hayden is just awesome in every way imaginable. He has the biggest heart. He has no idea how many people's lives he has touched and made view things from a different perspective. Then there is me.

The last three years I have not actively pursued who I am or who I want to be. I really felt like it would just come to me. Well, it was there all this time I just was not ready to see it or admit it. My biggest joy in life is being a Mom and housewife. I don't find satisfaction in working outside the home anymore. My joy is at home. If someone would have told me this 13 years ago I would have laughed in their face. I wanted nothing to do with being a stay at home Mom. In fact being a Mom was not on the radar. I was super career oriented, type A personality, selfish, control freak. My head still spins thinking about how much my journey into parenthood of an severely autistic child has completely changed me.

Hayden has taught me to stop and smell the roses. Its ok to not constantly be in motion. Its ok to sit and reflect and its completely ok to be yourself. I am such a happier, stronger, healthier, person because of that little boy.

I am ready to move forward. I am no longer going to flap around like a fish unsure of what direction to go. I'm READY!!! Man is this freeing. My heart and soul is being with my family. I'm finally at peace with this. I'm also ready to do something many people have encourage me to do. I'm ready to write my book about our journey in, through, and around autism. More importantly my journey into finding myself, loving myself, and living life the way I want in order to help my son. 

GAH.....now to start!! I know I am going to need a hardcore editor as my grammar, punctuation, spelling, and whatever format I was taught in college to use (can't think of the name) is completely off key. Do I write it microsoft word?? What's the best way to back it up (I'm technology challenged).

That's it! Expect my book to be quirky, witty, and a little cheesy mixed with some hardcore deep digging emotions.

That's it for tonight. I have to go move an Elf. Peace and Love friends :)

I made a decision :)

Hello everyone :) It has been a while since I have updated my blog. I am happy to report that Hayden and Ruby had a great school year and that school is out for the summer.  WoooHOOO.....my favorite time of the year. I seriously love having my kids home and all the adventures summer takes us on.

The last month or so I have found myself pretty much exhausted from all the running here and there that we do.  I also found out that our tuition was going up at school. It really made me re-evaluate sending the kids to school at all. I miss my kids and felt like we were really missing out on downtime at home. I also did not like the idea of having to work more. I already work 40+ hours a week and I manage to be a full time stay at home Mom in the process. The idea of working less, spending more time with the kids, going on adventures, and hiring a part time nanny to assist in their education seemed amazing. I never, never, never, and I mean NEVER thought I would be the homeschool type Mom. It really blows my mind how much my entire life and self has changed since I have had children.

I had been talking to the kids about homeschooling. They really shocked me with their responses. Ruby was ready to quit school that moment and never return. Hayden sobbed and said he would miss Oak Farm, and all his friends. This was the complete opposite of what I thought they would say.

I had my mind pretty much set that we would be embarking on a homeschool adventure in the fall. Then I went on a class field trip with Hayden's old class. When we got to the playground and Hayden's friends seen him they ran towards one another. There was literally a line, lined up waiting to give Hayden a hug. I shed tears and did my best to refrain from full on sobbing. Hayden was so happy to see his old friends and his old friends were so happy to see him.  We had a great time on the field trip.

On the last day of school I got to be at school all day with Hayden to participate in messy wars. I cried so many different times that day. I even had to excuse myself to the bathroom to sob at one point. His entire school must think I am an over emotional wack job. Sometimes I really get overwhelmed with all the things that Hayden is doing, achieving, and a part of. Our goals for Hayden have never been educational based. We have always made goals for him that were social / emotional based.

One of the first things we did on messy wars day was to make a book to have friends sign. Hayden made his and asked several friends to sign his book. He also had many friends ask him to sign their books. The next thing we did was make vessels for raw eggs to go into to be dropped from the top of the silo. Hayden asked me for a glove. I thought he was talking about a winter glove and told him I didn't have one. He then went to his teacher to ask for a glove and she knew just what he wanted......a rubber glove.  Hayden then asked for me to blow up the rubber gloves and attached them to his vessel.  Man is he smart! Several other children then wanted gloves to put on their vessels. Hayden's egg did not break! He was so excited and proud of himself.

Throughout the morning Hayden would chat with or read books with his friends leaving me in the dust. I joyfully and tearfully observed while I interacted with the other children. Hayden stayed in his classroom for lunch so I could go have lunch with Ruby and her class. Hayden was more than happy for me to leave. He was so excited to have lunch with his classmates.

After lunch it was time for messy wars!!! What an amazing event this was and right up Hayden's alley. He loved messy baseball.  The home plate was a kiddie pool of water. 1st base was a tarp with cooked spaghetti, 2nd base was shaving cream, and 3rd base was jello.  Hayden was hitting the balls as hard as the other boys and sliding in to the bases with ease. Oh, how he was completely covered in goo and having the time of his life.  Many times I observed Hayden chatting and laughing with the other kids. He did the egg toss, slip in slide, obstacle course, water balloon pass.  It was absolutely amazing!!!

Seeing Hayden be a strong, independent, happy child in a community that he is so very much loved completely melts my heart. There are so many students and teachers at Oak Farm that see Hayden for who he is and completely love and accept him.  There is no judgments about his differences or a focus on what he can't do. There is only all these wonderful people that love him and are completely cheering him on and doing everything possible to give him the tools he needs to be sucessful.

I reflect back to the days when our goals were:

Hayden will point to a picture on his wall to tell us what he needs
Hayden will use a one word sentence to get a need met
Hayden will glance at us
Hayden will sleep for more than 2 hours at a time
Hayden will recognize danger (i.e. not throwing knives, leaving the house, or jumping in water)
Hayden will stop swimming in the toilet

I really don't think most people get just how bad Hayden's autism was. It seems like a life time ago that I was on edge 24/7 out of fear that my son was going to hurt himself. I didn't sleep, I didn't eat, and I didn't take showers for days kind of fear because it only took a second for him to disappear.

It seems like ages ago! Almost like a dream. Hayden has made me a better person! I really don't think there is one person that Hayden has worked with that doesn't see the world a bit differently. He made me see the world through a completely different set of eyes and I am so much more at peace because of it. I am only responsible for my own emotions :) I can choose to see the world however I want. I can choose happiness in any scenario. Does that mean I always feel that way??? Heck, no.....I am human and I get grumpy/ down right cranky. I accept that and move on.

So what did I decide???? Drum roll please.....................after seeing Hayden with his friends, his classmates, teachers, and hearing how much he is thriving at a end of the school year meeting Hayden and Ruby will both be attending Oak Farm next year :). We will continue to extend Hayden's school day as tolerated. I have found a couple Mom's to carpool with, and my parents have graciously offered to pay half of the tuition. I can't even tell you how much deeper I can breath after making this decision.

Hayden is official a green belt and is jumping off the diving board with out a lifejacket / floaties.
Now back to summer shenanigans :)

Much love to our huge support system! It really does take a town.

My heart hurt for them..............

My family and I had the pleasure of enjoying a little mini vacation the past 36 hours.  We had a great time.  We started our trip with a visit to the dentist for the kids to get their teeth cleaned.  We then went to the Indianapolis Zoo, spent the night at a hotel, and ended our trip with a visit to the Children's Museum.  It was a nice little break from our daily routines.

On our trip I seen a fair amount of autistic children and young adults.  It really makes my heart hurt to see individuals in prisoned by the clutches of autism which is really a neurological condition that effects the entire body.  It prevents individuals from expressing them self in a typical fashion.  Their bodies are so sick and riddled with illness and crapy immune systems.  It's not just "autism" and it makes me sick when people think autism is no big deal. I honestly understand that you really can not comprehend what life with autism is like until you have been there.  I do not know 100% what Hayden went through.  He has told me things while watching old videos of him that the reason he was acting a certain way was because his tummy hurt. That the air conditioner was too loud and it made his head hurt.  Or that the room would not stop spinning when he was perfectly still.  I know Hayden didn't feel well. I know that he was hypersensitive to stimulus.  I also trusted that the reason he did things had a purpose and was soothing to him.

What I often do not talk about is what it is like to have an autistic child.  I really feel like I have PTSD from the whole ordeal. It was hard, really, really, really hard.  I feared for my child's safety every second of the day.  When Hayden was at his worst I could not take an eye off of him as he would wonder off, jump in a large body of water (he couldn't swim), throw knifes, poop and pee everywhere and anywhere..........my water glass, the sink, the floor, the middle of the road, the front yard, in the car. He would run in the middle of the road with out noticing if a car was coming or not.  Hayden tantrum pretty much non-stop.  He was always naked.  He Often humped a pillow.  Hayden was super destructive and ruined our drywall, carpet, lamps, bathrooms (yes, we had to gut our master bathroom as he flooded it with every bath and black mold started to grow).  He flushed things in the toilet that caused us to have to remove the toilet to retrieve the items.  Hayden swam in the toilet on a daily basis.  He put anything and everything in his mouth.  I did everything I could do to protect him.  I got bladder infections from having to hold my pee out of fear of leaving him alone to go to the bathroom.  I did not sleep as he did not sleep.  I rarely ate and if I did it was at work or something I could shove in my mouth quickly.  I didn't leave Hayden with anyone besides his Dad and even then I was a nervous mess.  I have relaxed a bit, but it is still very hard for me to let go of my little man.

Ok, back to my real reason of this blog post.  While Ruby and I were waiting to ride the carousel a boy maybe 10 years old and his Mom were waiting behind us.  The little boy was clearly autistic.  I smiled at his Mom as Ruby started to chat with her (Ruby initiates conversations with everyone).  The little boy chimed in and asked if I had watched the Harry Potter movies.  I told him that we had not and that we listen to them on audio book.  He started telling me all about the movies and his favorite part.  All the while his Mom had her arms around him trying to keep him in place and keep his movements under control.  I really connected with this little boy and enjoyed hearing about the Harry Potter movies.  He also told me that he was going to ride on the red bench on the carousel.  It was time to get on the ride.  I smiled at him and thanked him for sharing his love of Harry Potter with me.  On the carousel I sat next to Ruby on the blue bench (as that is what she wanted to ride) shedding tears.  The reason I shed tears is because I know what it feels like to try and protect your kid from others hurtful looks and rude comments.  I shed tears because I know a little about what that Mom goes through on a daily basis.  Even though I have had a child with autism doesn't mean I know what every other parent of a child with autism goes through as every circumstance is so different.  I shed tears out of fear that Hayden would regress and that I would not be able to help him back out of it.  I closed my eyes for a minute while on the ride and sent that little boy and his Mom so much love and well thoughts.  I also thanked God for Hayden and helping us give him his life back.

Often times I want to say to parents of autistic children that are stimming in public that it is okay.  That their child is doing what they are doing to take care of themselves.  That it is the public that needs to change and love people for who they are and accept that we are all different.  We are all different...........not less!!

To the Mom on the carousel I very much wanted to give you a hug and tell you what an amazing Mom you are and what a wonderful son you have.  I didn't out of my own fear of rejection or hurting your feelings.

To all my friends facing autism know that I think of you often through out the day.  Know that I know how amazing your children are.  Know that you can make a difference.  Know that you are your child's best resource.  That's right YOU are your child's best resource.  Know that you are not alone!!

If you do not personally have a loved one living in your home with autism what you can do is help someone that does.  Go over and vacuum their carpets, mow their yard, make a meal, wash their car, etc.  All those things would make such a big difference.

xoxo,
Brandi

Update on the AMD IonCleanse Foot Baths :) :)

Brandon and I have both come to the conclusion that we are seeing some positive changes in Hayden since we started the AMD IonCleanse Foot Baths.  What we are seeing is maturing.  Hayden is almost eight and on most days he is more like a 5 year.  Which is absolutely perfect for him and us.  We are very happy about all the challenges that Hayden has overcome.  We are not striving for *perfection / normalcy*.  We are striving for happiness and health for our little man.  After all I am a far cry from *normal*.  So here is what we are seeing.......................

1) Hayden has started to back his booty up to us and fart. He thinks this is hysterical.  I think it is hysterical that he thinks it is hysterical.  I do, do my best to keep it together and educate him that farting on people is not okay.  Brandon and I both feel that this is something that typical 8 year old boys find humor in.

2) He is playing what Ruby wants to play.  She has taken a love for the TY beanie babies with big eyes and pretends they are her pets.  Hayden pretends play pets with her.  Sometimes he goes with her plots and others he adds his boy flare to the pretend play.  For example pets pooping and farting, driving in a car, pets playing video games, etc.  Ruby gets frustrated with Hayden about him not following her way of play and it's pretty comical to watch them argue back and forth about the pets.  They really act like an old married couple at times.

3) Hayden is commenting and sharing at a whole new level.  Last night Ruby wet the bed.  She woke up this morning and couldn't find her burpie (her burp cloth, aka love).  Hayden went to help her and picked up her wet panties on accident.  He said, "Ewwww.........Ruby you peed your pants and your panties are wet."  I had a good chuckle over this.

4) Hayden is buckling his own seatbelt! Woot.....Woot!!!

5) Hayden is open to and working on higher level scholastic work with out major support.

6) Hayden is really aware of road safety on walks and bike rides.  He is now telling me when cars are coming and to step into the grass.

7) Hayden is making his own breakfast and cleaning up on his own.

8) Hayden is picking out his clothes and getting dressed on his own with out any kind of prompting.  He even puts his dirty clothes in his dirty clothes basket.

A Love for Learning

We have been experiencing some very exciting growth and development in our home lately.  It seems that Hayden and Ruby are both learning at lightning speeds this winter.  It has really blown my mind how quickly things has just "clicked" for them.

When we initially started Hayden in Montessori school at the age of three.  I learned something that has really stuck with me.  The Montessori way is creating life long learners.  Live long learning is one thing that I really want for my children.  I want them to have a thirst for knowledge and understand why they are doing what they are doing.  As a parent I want me kids to want to learn.

Hayden taught me very quickly that academics was on the back burner for him.  What we wanted for him was to develop social skills first.  This is a concept that while at a Son-Rise training I came to total peace with.  I came to the conclusion that what good would academics do for my son if he is unable to communicate.  I wanted him to have a love for people and feel comfortable in his own body.  We incorporated scholastics in Hayden's Son-Rise program, but they were never the focus.  We would count jumps while jumping, verbalize letters as writing words, count cars that went down the slide, and talk about colors.  We kept the scholastics light and natural.  We never forced Hayden and respected him when he asked us to stop counting.

I am grateful that I stuck with following Hayden's lead with scholastics.  He is open to learning to write, read, and do math now.  In fact he now seeks out those activities on his own.  I have worked hard at incorporating different activities to motivate Hayden to practice his reading, writing, and math.

Less than a year ago Hayden refused to hold a pencil.  He had absolutely no interest in writing.  I didn't force him.  I thought of ways to prepare him to be a successful writer.  We worked on eye hand coordination, fine motor skills, and I modeled how much I love writing and how helpful writing is.  Hayden now has confidence in his hand writing and is writing words of motivation like a pro. He loves to write  names of family members, words related to angry birds, and words related to mario.  He can write all letters and numbers in manuscript.  Hayden's school teaches cursive.  Hayden has chosen manuscript as his preferred writing method.  I am trilled :)

Hayden has always loved being read to.  He has recently started to underline words with his finger and pretend read.  Hayden knows several words, but it is hit or miss on demonstrating what he knows.  Hayden is an extremely visual learner and has some sound sensitivities.  He would not allow us to sound out letters until the last month or so.  Much to my surprise he knows all the sounds the letters make.  With in the last several weeks he has started to spell words.  It is crazy how easily he has picked this up.  Everything we have done with Hayden has been on his time schedule.  No matter what goal we set for him and how hard we worked to achieve that goal.  If Hayden was not ready to achieve that goal he didn't.  It has always been when we let go of our expectations of him Hayden not only meets that goal but exceeds it.

Ruby is always learning at a lighting pace.  My sweet little girl a year ago could not count to 10.  She had no desire and would become extremely frustrated if we even talked about numbers.  Ruby cakes can now count to 100, she can count to 100 by 5's, count to 100 by 10's, and even by starting at 1 and ending at 100 (not sure what to call this).  She can count to 20 in Spanish. Ruby is now adding 1,000th place numbers.  It really makes me giggle to think my little girl a year ago was so adamant that counting was not going to be part of her life.

Ruby is now writing sentences in cursive.  She is my little writer and fills up a writing journal on a monthly basis.  Ruby is well on her way to reading bob books.

This winter has been a huge area of growth for both my kids.  So exciting!!  I love that my little loves have a hunger for learning.  I feel that it is my job as a parent to fill that love, nurture it, and respect their pace of learning.  They are my guides.  I often simply observe them to see what kind of new learning activities they are ready for.  Hayden and Ruby are in charge of their learning.  I am happy to guide them, follow their lead, respect them, and find innovative ways to motivate them.

Hayden using his incline writing surface to do a hidden picture find.

Ruby is my little worker bee.  She loves learning.

Going over the check list she made for me.

Just doing some electrical work :)

My 5 year olds math work

A work I made for Hayden with a focus on reading and writing.  He mastered it  in 3 minutes.

My little scientist

Hayden made sponge bob at lego club.

Spelling with ease

It's time for an update!!!

Having a snack of avocado chocolate pudding

Proud of his gingerbread house

Loving his smoothie

Playing Ned's Head with Mommy

Ready for school

Helping in the kitchen

Giving a friend a check up

Making hot chocolate

Frosting cookies

Made gumdrop trees

Lost his front top tooth

Hayden decorated the area beside where he sleeps :)

Ruby and her melting snowman

The days seem to be passing by quicker and quicker.  I am working more, Brandon is working more, and the kids are in more activities.  Trying to find the balance in daily life is challenging!!!  I don't like being so busy that there is no time to just be together at home and enjoy each other.  I also want my kids to be involved in activities.  What a great challenge to face :)

I am so in love with my babies.  They are learning and growing at a lightning pace.  It seems every day they are learning and doing something new. I feel like in a blink of an eye they will be driving and going on dates.

Hayden has settled into his new classroom well and is going 5, 1/2 days a week to school.  This seems to be a great fit for him.  I continue to work with him on handwriting and eye hand coordination exercise at home.  Hayden's favorite at school right now is gardening.  He loves to go outside with his gardening teacher and go sledding.  His school has a perfect sledding hill.

Hayden has the yellow sled and is walking back up the hill

Helping shovel at home

Hayden's handwriting is getting better and better.  He is getting the spacing of letters and the relation of  letters and lines.  He is also starting to sound out and spell simple words.  Hayden also knows how to spell several words by memory (I think he knows way more than he lets on to know).  We practice handwriting in several different ways to keep it light and fun.  I want Hayden to want to write.  I want him to understand the purpose of writing.  What we don't do is repetitive writing drills.  This week during one of his writing lessons I had Hayden draw a picture and then write a story about his picture.  I was not sure if he was ready for this length of task.  Much to my surprise he was up for it :)  He drew a picture of one of his favorite games, Flying Pigs.  It says, "I like to play flying pig game. I like to play with Mom."  He then signed his name.

Using an inclined writing surface has been beneficial for Hayden.  He knows how to write all his letters but  it seems there is a disconnect between his brain and vision.  Cranial Sacral Therapy is helping with the vision / brain connection.

Corn starch and water mixed together.  I put it in a jelly pan.  There is a lot of resistance when you write and draw in it.

The kids have both been asking if we can get a puppy or have a baby.  Daddy says no to both.  Who thinks Daddy should change his mind???

Hard Times

I generally only blog about the good times or exciting new things that Hayden and Ruby are doing.  I never want to discourage anyone or have people feel "sorry" for me.  The truth is I am feeling a bit discouraged myself right now.  Throughout Hayden's journey out of autism and healing there have been many ups and downs.  For the past 18 months we have pretty much only experience ups.  We might have an off day here or there but for the most part Hayden is doing well and gaining new skills.

Hayden started all day school 5 days a week almost 5 weeks ago.  This has hit him hard.  He is not doing well at school.  He is having outbursts, sensory seeking behaviors, not doing work, and being disrespectful to his teachers and peers.  I can't even put into words how hard it is for me to watch this behavior.  Hayden is autistic again and it is like a knife has been stabbed straight through my heart.  This is the third time in his life that I have watched my son regress and lose skills.  Each time is harder and more heartbreaking.

I am really not sure what to do.  I am working with his teachers on a new work plan for Hayden.  Starting next week Hayden is not going to go to school on Wednesdays and will stay home with me.  I also scheduled another round of hyperbaric oxygen therapy treatments the end of this month.  The only things that have changed for Hayden is school and we have updated paint and carpet in our home.

I am not seeing these behaviors at home like they are at school.  Hayden totally rocked his first martial arts class and was completely into it.

If you have an extra prayer, positive vibes, words of encouragement, or positive energy to send my little man and all the other children faced with autism I will take it.

Brandi