Anyone Curious About George?

Waunita Hot Springs Pool, CO

It has been over a year since I have updated George's Blog. Time sure does fly!  A lot has happened in George's world as you will see below.

Highlights:

• 2 "worst" nightmare scenarios with George, thankfully they turned out well.
• Moving...ah...need I say more.  Still organizing!
• Huge progress with George and eating!
• New health information, 2 new changes and results!
• Progress working with our therapy center, Enrichment Alternatives in Springfield
• A generous donation from Bear Paw Creek for Autism Awareness month! 
• Our FIRST family vacation with all the kids to Colorado, June 2017! Waunita Hot Springs Ranch
• Approval of our first waiver for George which will allow me to self-direct his services and pay my helpers more!  Should be up and running by the end of July. Partnership of Hope
• Better connections with potty training, thanks to alarm system and chiropractic care.          DryBuddy alarm system
• George continues to grow in his interactive play and is currently working with 6 different individuals throughout the month.  I'm using all my training from Natural Play Therapy!

In November of 2016 we moved back across the highway to our new home that my husband rebuilt after our original home burned down in December of 2014.  We still have things to finish up, but we are there and it is a much safer environment for George.

Two days before our move, two of my worst nightmares occurred: George escaped from the house, was found 'playing' in a ditch by the highway and CPS greeted me the next morning.  Thankfully, George was not hurt and I guess CPS could tell I was a 'fit mother' and never opened a case.  I was not home and that made it even harder getting a call while on my way home!

I am continuing to look for fence grants.  I have been denied 5 times by one organization in which that is their specialty but they just don't have enough funds to help everyone.  I was denied through another organization as well, but I will keep at it.  A fence that he cannot climb and we can see through is over $5,000.

George gained a self help skill!  He went from high anxiety and flinging any food put before him to self-spoon feeding, beginning to chew and looking for more food on the table!  He only has smoothies now when I am in a hurry or traveling and it reduces my stress to do so!  I still do some blending because I can get a huge variety of food in him that way but he is spoon feeding himself everything, and enjoying it!

I attribute George's feeding progress to 3 things:  More helpers to help with consistency including feeding therapy every week from our Speech therapist, chelation therapy and chiropractic care.  We have done 40 rounds of chelation therapy.  This is removing heavy metals slowly and safely from his body and brain.  It takes 100-300 rounds to free most children of their autism symptoms.  A round is typically 3 days and nights (dose every 3 hours round the clock), then you take a 4 day break.  So 52 rounds would be 1 year.  We had to take a break when we moved but I am gearing up to start again.  This is the only way to chelate that I would recommend.  It is called Andrew Cutler Chelation.  There is lots of information on the web and some very helpful private Facebook groups.  This is a pretty good link if anyone wants more information. Cutler Success Stories.  I highly recommend the book Fight Autism and Win.  It lays out very simply how to chelate safely.  I am chelating myself as well.

It was while chelating that George started to be more comfortable with being spoon fed and seeing food in front of him.  It was not until we started chiropractic care that his brain was finally able to help his body make the connections and do the motor planning involved to actually spoon feed himself.

I had done some chiropractic with George in the past using different practitioners.  Then in January of 2017 I was forced to seek care myself due to my right hand going numb and shooting electrical charges up my arm. My regular chiropractor was closed and I had to get in ASAP so one of my wonderful caregivers referred me to Dr. Isaac Murphy in Carthage, MO.

As he was helping me I decided to have him check George out.  I kinda noticed his spine was looking odd to me but it wasn't until my occupational therapist mentioned his spine that I thought I must have seen something.  After evaluating him he wanted me to get some X-rays.  Come to find out George has scoliosis which explained a lot.

This is his before X-Ray as if we are looking through him from the front.  You can see how his spine is curved to his left side. He has always favored his left side.  The spine grows to the stronger side is what I remember Dr. Murphy saying in layman's terms.  All the black fuzzy stuff is gas.  Both radiologist and Dr. Murphy commented on how much gas build up he had in his belly.  Poor guy.  So his spine has affected his digestion, food absorption and all kinds of brain connections.

I really wasn't expecting to see a lot of other changes in him with chiropractic care after everything else I had tried.  However, he is already showing improvements.  He gets adjusted twice a week and he hops right up on the table.  That was another big change, no more videos/music and coaxing to get him to lay still.  He gets adjusted like a big boy and you can tell that he knows it is helping him.

You can visually tell his spine is straighter and it was after George started chiropractic care with Dr. Murphy, that he began to feed himself.  He is also relating better with people, more curious and beginning to follow one step directions such as "come here", "wash hands" etc... I said beginning, so not every time, but this is huge in our world for me to say lets wash hands and he comes to the sink to do it!  Super celebration!  We have had better connections with potty training as well.  He will go most times when we put him on the potty and he actually pulled his OT (occupational therapist) to the toilet last week and went!!!!!  Wow, looking forward to more of that.

 Dr. Murphy has been amazing working with me to help get to the root of George's issues.  He takes time and really explains anything you want to know.  He also consults with other colleagues about George, particularly one out in California that does chiropractic neurology that works with kiddos like George all day.  He has sure been a blessing!  If you are in the area,  I highly recommend him.  Click the link above and it will take you to his Facebook page, he has a webpage as well. You may even see a picture of George there.

I have been blessed to have found Kari Done and Enrichment Alternatives in Springfield for our Occupational Therapy and Speech. We go once a week and work on our 'homework' throughout the week since we live 45 minutes away.  All of the people we have worked with there have been excellent.  They are there to help the whole family as we adjust to life with our special kiddos and help us to learn about other resources that may be helpful to us.  George happily trots in the door when we arrive.

George picking his activity for Occupational Therapy

One of my goals for this summer is getting George an outdoor play-set to work on his gross motor muscles.  My friend, Janet Stephens, from Bear Paw Creek donated a percent of her April profits for Autism Awareness month to George's Trust Fund.  So we are half way to our goal.  There is more information under the Fundraiser button with a picture of the play-set.  A big thank you to Janet for thinking of us and supporting us!

I will wrap up this blog with what will probably be the highlight of our year, our first family vacation with all our boys, 15, 13 and 9. The last vacation we took our older boys were 3 1/2 and 13 months old.

We went with my brother in law, sister in law and my niece to Colorado.  I finally felt George and I could handle it and he did very well.  He was a great little traveler.  He peed on many different toilets and fed himself in different locations, thanks to ITunes.  Yeah, I know everything we are doing is helping George to be the best he can be.  Seeing him smile, learn new skills and enjoy himself just fills me with joy!  He is such a huge blessing to me.

Waunita Hot Springs Ranch, CO - George riding Danny. June 2017

How's George?

My last blog post was 2 years ago!  I can't believe how fast time flies.  I have not written anything since my last post about our Natural Play Therapy classes.  So, what have we been doing?  Playing of course!

  October 2014    

After our classes ended I started to incorporate some different activities that I could enjoy with all my boys. We purchased a YMCA family membership and travel once or twice a week (45 minutes away) to go swimming in an amazing pool.  George loves to swim and go down the big slides.  He also gets great physical therapy climbing the 34 steps up to the slides and pulling himself up on the Lilly pads in the pool.  Likewise, my big boys have fun with all the pool features which include a climbing wall in the deep end.  After our pool time, George goes to a Kid Zone area with other little ones.  The workers have been great with him.  This gives me time to play with my big boys.   We rock climb, play pool, ping pong or exercise together on some of the equipment.  

We also added trips to the Silver Dollar City family amusement park in Branson.  We used the boys' Christmas money from family to get some season passes.  This was great fun and we will be doing it again this year.  There is something for all the boys.  George loves movement so all the rides in the little kids section are a hit with him.  He is also happy hanging out in his big stroller while his brothers ride the big rides and once again I get some exercise.  It is a very hilly park, especially when you are pushing 40+ pounds.

Currently we have 2 days a month we travel about an hour for our speech and occupational therapy.  We incorporate some time together here as well.  Lately, we have been going to Skyzone for an hour of jumping on all the trampolines.  Then we eat lunch and go to therapies.  Both boys help as needed with therapy time to keep George engaged and interested, plus George wants them to play with him at this time too.  That is nice to see.  We know this because he grabs their arms to join him.  The last couple of times he didn't need his brothers and actually tried some new activities and it was with a new therapist.

As far as goals, we are still plugging along.  Communication has been a big goal for years and while we would love to "hear" his voice, it just isn't happening right now.  That doesn't mean he is not communicating with us. With Natural Play Therapy (NPT)  I have learned to be at peace with where he is at and I truly am. While we still model some sign language, George's brain really struggles to make his body do what he wants.  We are addressing that issue with some detox protocols and primitive reflex integration therapy.   I will discuss that in another blog in the near future since that is a big part of our lives as well.

This year our speech therapist helped us to obtain a NovaChat communication device for George.  He is learning to tell us his wants and needs with it.  Like everything it is a slow process but he is understanding more and more every week.

George is choosing what he wants to do in the playroom.

I have noticed recently that George seems to be following directions a bit easier.  He has done a couple of simple tasks at our requests that he has not done before.  He is also learning to play games on an IPAD whereas before he would want us to do everything and he would just watch.  We are working on matching objects on the IPAD now and it is going well so far.  It is definitely motivating for him and he is using his fine motor skills.  He loves anything with music, so the apps with music are a big hit.

We are going in to our fourth year of using the Natural Play Therapy approach and I truly consider it our foundation.  I can pull other therapies in as needed and make them NPT friendly.  The way it has strengthened my relationship with George and his relationships with his NPT team is priceless.  When team members come over he gladly leaves whatever he is doing and takes their hands to go upstairs to his playroom.  I had a neighbor come over one time when a team member was leaving and George looked at her and figured she was there to play with him.  He took her hand and took her up to his playroom.  It was adorable!

We don't really have any 'behavior' issues with George.  I do believe if we were trying to force goals on him that he was not ready for or if we were placing too much emphasis on what we thought he 'should' be doing then we could possibly have some behavior issues.  I don't consider him not staying with me in public a 'behavior' issue.  I believe he is doing the best he can and he, for whatever reason, does not respond to his name and come to us.  I don't believe it is defiance though.  Thankfully, I have seen some small improvement in him as far as staying with me and not darting everywhere.

We have other large goals that George has not met such as potty training and working on touching and eating food. We are still putting him on the potty daily.  It is hit or miss if he goes and there is no connection with him needing to go. I work on spoon feeding him off and on instead of his smoothies.  I am not doing this as consistently as I would like.  As a mom, home schooling 3 boys,  I can only tackle one major issue like this at a time.  To work on all of them everyday is totally overwhelming, so I am giving myself permission not to do it all right now.  I do believe we are still working on these areas with our detox protocols and reflex therapy.

We will be moving, hopefully, towards the end of summer.  I am looking forward to getting settled and making some new play areas for George.  I am hoping to create lots of areas for climbing, movement and play.

I finished my NPT classes in 2014 and am very comfortable in using what I have learned.  I still want to have an NPT outreach once we are settled in our new place.  There are many more Natural Play Therapy classes available now and it is good to know there is support out there when I need it.  My biggest hurdle is finding people in our rural area, but I am confident we will get there.  I just need to get more creative and I will when the time is right.

George is currently getting 18 hours of scheduled 'play' a week.  I have 13 more hours I am looking to fill right now.  We can pay people now, which is really nice.  We are always open to volunteers coming if students want to build their volunteer hours, even if it is just once a month.  It is so helpful for George to interact with different people.

We are so blessed to have our 2 amazing Team Members, Rachel Bates and Rebekah Alger, working with George every week.  They both have such a playful spirit and give him much love and support.

George showing Rebekah what music he wants to listen to as they play.

Rachel and George coloring for a couple of minutes which is HUGE!
George used to run the other way when we took out the
coloring books and crayons.

Thank you for reading and for your interest in George's progress.  Please leave comments below with any questions you may have or anything you would like to add.

Natural Play Therapy Class Review

Rachel and I have completed our series of 14 Natural Play Therapy (NPT) interactive web classes this week.  A huge thank you to everyone who helped make this possible for us!  We had a great experience and learned so much that we are applying as we work with George. Rachel is using what she has learned from NPT with the clients she works with in the community.   I will share a bit about what I specifically learned and post my last video I made for class.

This is a picture of my classmates.  Julie Sando is the top middle and her co-teacher is Kristen Lee Langelier.
Kristen is in the second row first picture.

We had a great mix of volunteers, parents with children on the spectrum and former certified NPT child coaches.  Our group represented three different countries, Australia, Canada and 3 time zones in the USA.   Technology at its best.

I learned valuable information from all of my classmates, from their stories, experiences, perspectives and the videos they shared.  I fell in love with their amazing children and thoroughly enjoyed watching them work with and learn from their children.  Not only did I learn about working with people in a respectful, non-judgmental way, but I learned so much about taking care of myself and relationships in general.

We also watched some videos from our NPT instructors working with children.  The videos helped me a great deal and were amazing to watch how they gently integrated their goals for the children into their play in such a fun, respectful and non-judgmental way.  Our children on the spectrum are so sensitive and pick up so much of our thoughts and feelings without us even speaking. All the more reason to be coming from a place of respect, love and acceptance for where they are at and who they are at this point in time and celebrating all their accomplishments no matter how small they may seem.

Speaking of celebrating, I have been celebrating since yesterday the fact that George is now putting the bubble wand to his mouth, sometimes in his mouth.  It sounds so trivial but it is a step along the way to our goal for him to blow a bubble off the wand on his own.  He had such an aversion to doing this for years then yesterday while I was blowing bubbles for him, I set the container down and he pulled the wand out and instead of giving it to me he pulled it right to his mouth and kept doing it, taking turns with me.  Today he did the same.  Yeah!  Small steps reaching towards our goal.

During the time span we were taking our classes, I had some exciting play sessions with 4 children other than George.  I would have loved to do more but it was not realistic right now.  Maybe in the future I will be able to work with other children and parents.  What I can do now is share our story and how NPT is helping us to connect with George and realize our goals for him.

I will look forward to taking more NPT classes in the future as the time is right.  I am so impressed with all the people I meet involved in NPT.  Their love for people on the spectrum and their positive attitude is contagious.  It sure beats having people tell you how worried they are about your child and that no one in the area we live could help him.  I know someone who can....ME and my amazing helpers at Team George including his brothers and Dad.

Below is my video I submitted in my last NPT class.   I had several goals I was working on in this segment, at the same time I was watching George to gauge if he was connected and if I could request more interaction from him.  One of the goals I was working towards was for George to touch a food item, pasta, on the palms of his hands.  The idea is for him to get used to touching all different foods beginning with dry and moving to different textures like crumbly, wet, foods he could mash on his own etc...  The goal is for at some point for him to start bringing the food to his mouth on his own with no pressure.  So the pasta was the beginning and he did awesome even using both his hands.

Another goal I was working on was having him follow my directions.  There was a natural opportunity to teach him to shake and he happily followed my lead and let me show him.  I also went into the activity hoping to allow each of us to get what we wanted, his current joy of pouring and watching the movement and my desire for him to happily touch a food item and follow instructions.

Take a look and see what you think.  I believe we had a good balance.

It felt amazing to share this interaction with him.  He was engaged and interested in what we were doing.  He also added a twist to the activity by letting me know he wanted his feet in the tub.  When he was done, there was no pressure and we went right on to the next activity and had some more fun together.

Please leave a comment below sharing your thoughts on the video and/or blog, ask a question or share an experience of you working with your child.  I would love to hear from you.

Mommy & George in the Playroom!

I am so thankful to have two young ladies helping me with cleaning two times a week.  This is freeing me up to play more with George.  One of the young ladies is also volunteering to play with George 2 hours a week. Awesome! So glad to have Rebekah playing with George.  I am excited to watch them build a relationship!

I took a couple of clips from my last play session with George.  George and I spent 1 1/2 hours together in this session.  Below are two clips that I especially liked.

In the first video I played with clapping.  George will not clap on his own to songs but likes it when we do. We are working on him participating more.  It is as if his brain struggles to tell his body what to do.  In this clip I wait and give him plenty of time to respond and 'help' me to clap.  I play with him to anticipate me being silly too, which he really likes as you can hear from his precious giggle.

Some of you may notice the same music cd as in my Moments in the Playroom video.  George looks through our cd case and picks what he wants.  He picks this one on purpose and is really into in right now. That is another new thing he has started to do.  Yeah, love to see his progress!

I just love to hear George giggle in that video!

This second video is an example of something we do in the playroom called recharging and deepening.  We do this when George is less connected and doing solitary play.  Sometimes we join him and explore what he is doing and do some parallel play, but other times we do what feels right to us, which may mean giving ourselves a break like he does.  

I had been putting a wooden train track together for quite awhile as he was turned away rocking back and forth on the mattress.  I created even more space between us by turning my back to him.  When the video begins you can see him start to spectate and check out what I was doing.  

I didn't put any pressure on George to come interact with me.  Also, very important, inside my mind I wasn't expecting him to come join me.  I was going to have fun playing whether he joined me or not and be happy with my decision.  With this mindset I don't feel guilty if he doesn't come interact with me, feeling like I am not accomplishing anything with him.  Him watching me and practicing in spectator play is an accomplishment, however if he remained rocking in solitary play that would also be an accomplishment.  He is being treated like a person in any real relationship.  Sometimes I want to be alone and other times I want to interact with people. This is huge as a parent to be able to ENJOY just being with my child and not feel like I have to MAKE something happen and teach him something amazing when I am with him and feel like a failure if it doesn't happen.

So take a look at how my recharging time went.

                                    

I had a great time and look forward to more time in the playroom with George!

Please leave any comments, questions or share your experience while playing with your child/children!  I would love to hear from you.

Watch Us Play!

I have put together a video of short clips from George's amazing team members playing with him.  Before you watch it, I wanted to give you some background on the stages of play.  Then watch the video and see if you can pick out some of these stages.  I had a lot of fun doing this.

In Natural Play Therapy (NPT) we have the opportunity to give George a chance to work through the 5 developmental stages of play that we all go through and they continue into our adult relationships.  The five stages are:

Solitary Play - This is present in infancy but we do this all our lives.  This is when people may be in the same room 'together' but are each absorbed in what they are doing.  Typically people with autism spend a lot of time in solitary play even though it may not look like 'play' to us.

Spectator Play - This stage typically emerges about 2-2.5 years of age and goes into adulthood.  This is observing others doing activities but not interacting.  In NPT we have ways to allow George to learn by being a spectator and not pressuring him to interact with us.  This is something that is missing in other therapies.

Parallel Play - This may start around 2.5 - 3 years old and go into adulthood.  This is when people may be doing the same or similar activity in the same area, maybe even copying some of their actions but not interacting with them.  We do a lot of parallel play with George in the playroom when he is less connected with us.  We take it as an opportunity to explore his world and take an interest in what he likes to do.  We are working to create a 50/50 relationship and taking an interest in what he likes is part of that.

Associative Play - This may begin around age 3-4 and go to adulthood.  This is playing a game or doing an activity the way it should be done with someone, talking or interacting with one another but not really working together to create something.  This stage allows George to start taking an interest in what we like and working towards that 50/50 relationship.

Cooperative Play - Around ages 4-5 and into adulthood you will see cooperative play.  This is playing cooperatively with others.  This play is organized and structured and you are communicating as you work towards a common goal.  This is when children learn to respect others' property, realize they need to ask permission to use their things and are more willing to share their things.

There is not one stage that we are aiming for in NPT.  They are ALL important and in a play session you will go in and out of many of these stages just as you would if you spent a long period of time with a friend. Adults do not spend all their time in parallel play.  We all need 'down' time and the freedom to go in and out of all of these stages.

Typical children also spend a lot of time in solitary and spectator play and may not exhibit lots of eye contact playing with their friends.  Sometimes parents of children on the spectrum may have been led to believe that their kids don't have ANYTHING in common with 'typically' developing children.  Not true.

Have fun watching these video clips and see if you can pick out the different stages of play!

I would love to read any comments you may have about the video or play stages.  Please post below and add to the discussion!

It's Official---George is Tooting Now

I have tried to get George to blow for several years now.  It is a skill that helps with speech.  I even ordered the whole 'blowing' speech kit with all sorts of blowing objects that are to be done in order of difficulty to refine this skill.  I lost interest in the kit when I could not get him to blow at all.

When we started Natural Play Therapy last year we just had fun modeling blowing by using bubbles, whistles, recorders and harmonicas.  Sometimes he would mouth the recorder but not blow.

Just about a month ago he began blowing.  I was hesitant to announce this because at first I thought it was a fluke and it may have been that he blew it accidentally at first.  I remember when my boys saw him do it in the living room and they got so excited.

Now he blows the recorder in the playroom with Rachel pretty regular now.  He blew on it with Caleb the other day and Caleb was surprised.  

The video below shows George blowing back and forth with me for the first time.  He was kind of having a fussy time when we were trying to video.  Nothing was really clicking.  Then I just sat in the corner to watch him play with Rachel and he joined me and we had a special moment of blowing!

Our next step will be to transfer this skill to blowing bubbles and other objects.  It will be fun to watch him make the connection that he can blow other objects and make things happen.

My next blog will feature video clips from all of George's wonderful team members!

Life Changing Opportunity

We are looking for individuals in search of a life changing opportunity.  This opportunity has the ability to transform all of your relationships, enrich your life and who knows what else it may lead to.

We are looking for volunteers to come and PLAY.  How great is that?  Leave your worries behind and escape for a couple of hours.  George is a very affectionate guy who gives amazing hugs.  His hugs are the best medicine for just about anything!  Come get yours weekly, monthly, whatever is best for you.  

What is so great about Natural Play Therapy is that George gets an opportunity to learn how fun and unique people are and the more variety the more opportunity he will have for learning.  Everyone plays differently and has different gifts to offer him!  More volunteers means a larger 'Team George' that can brainstorm ideas to best help him.  We will learn from each other as we use Natural Play Therapy guidelines. We will learn and practice 5 stages of play in the playroom that correspond to normal human development and they actually continue into adulthood.

Many therapies use rewards for a child to 'get through' the therapy with the therapist.  Once the child does the required task then they are rewarded with what motivates them which may be stimming on a toy in their own world or eating some candy etc....  In Natural Play Therapy 'WE' are George's reward.  We don't want him to have to 'perform' for us we want him to WANT to interact with us.  We reward him daily by giving him respect, building his trust and giving him space.  We actually are very careful with making requests of him until he is ready and motivated.

Think about your relationships.  Do you like to be manipulated?  Can you feel when people are manipulating you and trying to get you to do something you do not want to do?  Are you more motivated to do something for others when it is your idea and you really WANT to do it because of the relationship you have with that person?  I don't think anyone enjoys being manipulated and even people like George can sense when they are being manipulated.  I want George to learn to have real, healthy relationships based on trust and respect.

I often hear people talk about kids with special needs and about their stubbornness in a negative way.   I see it more as a positive because it means they want to take some control of their life.  In our playroom we can give George control, something that he has so little of in other areas of his life.

Come be a part of Team George and please share with others that you think would benefit from this opportunity.

I would love to write recommendations for students who volunteer who may be able to get some school credit or scholarships for this experience.

Please check out the FAQ's section of my blog for more information about what volunteering may look like.  We live about 20 minutes north of Mt. Vernon, Missouri.  Please email Yvonne Marshall at love4George2013@gmail.com or call 417-569-2147 if you have an interest in this volunteer opportunity.

Come watch George climb some more milestones!

What is up with George?

Wow, it has been 3 months since I have blogged.  REALLY?  Where did the time go?

Well Rachel, our amazing Team Leader, went out of state for 2 weeks in December.  Yikes! I learned that I will have a back up in the future.  Rachel interacts with George about 15 hours a week.  So, we reverted to pre-Natural Play Therapy (NPT) days without help and it was rough!

We spent most of our time doing this:

So Thankful For...

When I get overwhelmed organizing George's therapies, home schooling and life, it is so easy to lose track of all that I am thankful for as I travel with George and our family through this journey to help him be the best he can be.  So I thought I would make a list to help me out that pertained just to George and his Natural Play Therapy.

I am so thankful for...

• Julie Sando and her Natural Play Therapy  (NPT) that is showing me a way to use many therapies to help George through our 'relationship' with him and NOT feeling like I have to force therapy on him or coerce him into therapy daily to "fix him" or "make" him fit in to our world
• Julie's web classes Rachel and I will be taking to learn more NPT strategies
• all our financial supporters making NPT possible for us to have one paid part-time NPT leader to take the pressure off of operating solely on volunteers
• a supportive case worker respecting our desire to do NPT, finding us some respite money and sharing the resources she has that may benefit George
• an opportunity to give others in the community valuable experience working with a child/family affected by Down syndrome/autism and learning a therapy that shows respect to the child/person and has the ability to enhance their own relationships
• support and prayers from friends and family
• Rachel working with George 15 hours a week
• Rachel desiring to understand Natural Play Therapy, not only to help George, but others she encounters in her life
• Rachel's love for George and her creativity in the playroom
• my amazing and generous volunteers that help in the playroom and in our home
• the times George will now for the first time, bring me his drink cup to let me know he wants more of his smoothie
• the time George showed me he had a preference by putting my hand on a cup he wanted his drink in, clearly not wanting the one I had filled for him  (Grateful for the communication,  I filled the one he wanted and he happily walked off drinking it.)
• George taking his supplements and nourishing foods (although pureed), so wonderfully
• the videos he now brings me, sometimes 10 seconds after I have changed one for him, letting me know he wants to watch it and him finally picking one over another when asked
• the 4 toys he will play by himself at times, when he does not have someone to play with him
• George bringing me the book with the proper cartridge to let me know he wants me to put it in his Baby Leap Pad (Wow!)
• seeing George look up at people now when they address him
• the precious looks on my older boys' faces when George really looks in their eyes for the first time, really seeing them
• my older boys helping me with George out in public, entertaining him, helping me strap him in carts, pushing him or carrying him on their backs, holding his hand 'tight' so he won't bolt away
• time in the playroom with George when we really 'connect', when we work through a frustrating time when I don't know what he wants and we solve the problem
• a travel brush, comb, or chewy stick that will bring George comfort in a different place
• his amazing hugs and the way he gently strokes my eye lid and hair
• putting George to bed at night and curling up with him as he melts into me quickly drifting off to sleep and sleeping ALL NIGHT
• meeting amazing parents affected by autism that are following the same dietary protocol we are for autism and seeing improvements daily from people all over the world
• hearing about 16 children/teens in my support group that lost their diagnosis (recovered from autism) since we began at the end of August
• meeting other parents doing Natural Play Therapy and sharing our experiences
• my husband's support and him spending time with George every Sunday morning, so I can go to church with my 2 older boys
• all the lessons I am learning while interacting with George and learning about relationships in general
• last but not least, God's mercy, grace and forgiveness for the many times I fall short and the strength that he gives me daily to never give up on George and our family  (Breaks and re-evaluations are okay, giving up is not an option for me!)

I have much to be thankful for!

Home Schooling, Volunteers, Donations, New Dietary Protocol, OH MY!

     As we transition to fall with home schooling swinging into high gear, it has been a balancing act with managing George's Natural Play Therapy.  Having Rachel in the playroom with George has freed up some time for me to help my older two boys with their school work and enjoy them instead of rushing through everything, because I am worried about what George is or isn't doing.  That has been a big stress relief for me.

     We were recently blessed with a new NPT volunteer!  Caleb is 14, home schooled and plays the guitar, which George loves.  Caleb is coming 2 times a month for an hour with his guitar in tow.  I am so excited for him to bring the music element into George's playroom.  Caleb had some great observations while working with George last week.  I am looking forward to seeing them both bond in their own way and I know I will learn a thing or two from Caleb as well.

     We have two other young ladies with a desire to work with George.  We will be working on getting them scheduled this month. It is so exciting to see young people reaching out to help.  George will learn that people are unique and exciting as each volunteer brings their own personality and interests into the playroom to share with George as he opens up to them and allows learning to take place.

     I have not been able to visit as many churches as I had hoped to over the summer, however the donations have still been trickling in and we are so grateful for that.  We are operating on faith that the money will be there and so far it has!

     My application to the Home School Legal Defense Association's Special Need's fund was received and I should hear something in about  4 weeks.  I asked for funds for a 4 day outreach with Julie Sando of Autistically Inclined and money for 3 hours of her training each month until July of 2014.  It will be an amazing learning opportunity for our NPT Team to be able to work with Julie for 4 days!  I am looking forward to that.  I am also hoping Julie will be able to do a talk for the community about autism when she is out here. I would love for other families affected by autism to be able to hear that there is hope, recovery is possible and there are things they can do to enrich their relationship with their child/children.  

     So far we have enough donations to operate through October.  We need a total of $960 to pay through till the end of November.  Then beginning in December,  we will need $716 a month to operate since respite care will renew and help compensate Rachel for some of her time.  All donations are going to Rachel and Julie.   If we get the grant, then that will help a bunch too.  We have put the play area outdoors on hold for now and we are adding some of our own money as we are able. 

     About a month ago I began a new dietary protocol for George.  It is pretty involved, however 98 children have been recovered from regressive autism in 2.5 years following it.  It is non-invasive and inexpensive, so we are giving it a try.  I will give more details in the future as I experiment with it some more.

     With all that we are doing, we are seeing improvements in George!  He looks at people a lot more.  When I am around people who have not seen him in awhile they really notice this.  He is getting much more particular about what he wants and it is fun to see him expressing this to us even if it is non-verbally right now.   I know when we can get him more hours in his playroom he will progress even more. 

    
     Potty training is a goal I discussed with Julie during our last call.  I have had to put that on hold right now with everything else going on.  I need more time to prepare for this goal as I suspect it will consume lots of time.  I was very spoiled with my other two boys.  They were very easy to potty train.  But you never know like Julie says, maybe it will only take a week with George too.  I will have to think happy thoughts on that one!  Anything is possible!  :)  Prayers are welcomed as I prepare for a potty training boot camp in our near future!

     Whew!  So those are some of our updates.  Thank you all so much for your encouragement, support and prayers.  We couldn't do this without all the help!

      

Calling all Volunteers!

     I had my second training call with Julie last Wednesday, August 7th and it went very well.  I finally feel ready to begin asking for Natural Play volunteers!  I wanted Rachel and myself to do some experimenting with the Natural Play techniques first.

     Rachel and I recorded each other playing with George and we sent Julie about 30 minutes worth of videos before the call.  It was very helpful for Julie to see George in action and to discuss more effective ways that we can work with him in the playroom.

     Below is one of the video's we sent to Julie.  This one is an example of what Julie calls Recharging and Deepening.  Before this clip I was Bridging and Exploring by joining him in his repetitive marble game.  I did everything he did and observed and explored what I thought he might be getting out of it.  At the same time I was getting into what he was doing.  Like any healthy relationship, people take turns doing or discussing what the other person is interested in.

     So, I played marbles long enough and told George I was taking a break.  This models that I am taking care of myself as well.  So I went over to look at a new book I had just received for him.  As you watch notice how he started to watch me as I was focused on my book.  Then HE joined me.  Recharging and Deepening gives him a chance to initiate interaction with me and deepen our relationship.  This is a good thing!                                                

     You will also notice him throw one of the marble pieces.  He does this for visual stimulation or if he is frustrated or over excited.  It is always an over the shoulder throw.  He sees better using his peripheral vision and is weak in his central vision.  Therefore, he plays with this weakness and tries to compensate for it.  We will be working on ways to strengthen his central vision with some eye exercises.

      In the meantime we don't react or "punish" this throwing.  It is not a "behavioral" issue but him trying to take care of himself.  If we do react negatively, it actually gets worse.  I am choosing the path to accept him the way he is and trust that he is doing the best he can and will ask this attitude of my volunteers as well.  I have noticed when I do this he actually does these behaviors less.  I think he "feels" I am trying to help him.  I have also learned to have quick reflexes.  :)

      This has been so freeing for me.  Before I would look at his throwing, shaking, flapping or whatever and feel so bad because he looked so "autistic" doing it.  Then I would stress that while he was doing this behavior he was regressing every minute as I had been told by certain professionals.  I am not saying they are wrong in their experience, but I know for me it is not worth the stress it added to our family as we all scrambled to stop his behavior.  However, like I said earlier, George does these behaviors LESS when we are LESS stressed.  Less stress is a good thing!

     One of my action steps that came from my call with Julie was to make a notebook for our Team Members that are working directly with George.  Each team member will have a tab and they can write down their observations and experiences while working with George.  Rachel and I are learning how make our own individual goals for George and what the progression steps would look like to get him to the goal.  We will be helping volunteers to do this as well.  The notebook is great because we can jot stuff down as we think of it and it can be shared with the team so that we may all benefit.   

     Another action step was for me to set up a day and time to have a volunteer informational meeting at my home.  I have done that....ready or not.  :)  My meeting will be Friday August 23rd from 6:30-7:30 pm.  This meeting is for anyone that may be interested in working with George and being part of his Natural Play Therapy team.  No one has to commit at this meeting.  It is for information.  I want all my volunteers to be fully informed, so they can be sure it is a good fit for them.  I do believe the experience will be very educational and have the ability to transfer to many areas of a persons life.  Students will also benefit from  having the experience to put on their resume someday.  All ages are welcome, no experience is necessary.  Training will be ongoing.  We will learn little by little as we go following George's lead and Julie Sando's expertise.   

     If anyone knows someone who would be interested in coming to the informational meeting please email me and I will give you specific directions.  For a general idea, we live 20 minutes north of Mt. Vernon, right off of highway 39.    Email:  love4George2013@gmail.com

Playroom Update

It has been awhile since I posted.  We pretty much have George's indoor playroom done.  We went with a cheaper EVA foam floor for now in just the playroom.  It is working fine for our current needs.  We have the air-conditioning cord we need to re-route through the wall so George is not tempted to mess with the plug, which he does if there is something in it.

I opted for a less expensive security camera for the room and a nicer camera to use for the YouTube videos and my blog posts.  I figured out how to route the room camera to my computer and found some free software that allows us to watch real time what is going on in the playroom or we can record sessions.  This will be helpful for volunteers.  We can all learn by watching each other or watching ourselves interact with George.  The very first time I was testing it I recorded a clip of Rachel and George on the ball.  It sounded like George said blow.  They were playing with the bubbles on the ball.  Rachel didn't respond to it though.  When I showed her the clip, she was amazed.  She heard it on the video.  It inspired her to go back to the playroom and listen to every noise he made so she could respond with excitement.  Sometimes if we have it in our mind that a child does not "talk" then we don't hear things.  I remember reading about a similar instance with a parent and child working in their playroom.  It helped me to focus more on any sounds George makes and to expect him to communicate with us. 

We have put the outside area on the back burner and any donations we are getting are going to compensating Rachel, who is doing the bulk of the Natural Play Therapy with George right now, and compensating Julie for training.  About all we can do outside right now is a quick wagon ride.  Past that he will be getting into trouble and we won't really be "playing.". 

My phone consult with Julie went well, but left my head spinning.  I realized when I got off of our 3 hour call that I was sicker than I thought I was feeling.  Then I went up to the playroom and found George asleep on Rachel's lap, which meant he probably had a fever.  George doesn't nap!  Sure enough we were up all night.  We battled some sickness for a couple weeks and that always sets me back. 

Even though I was sick I still got a lot out of my call.  Julie gave Rachel and I a lot to think about and discuss.  We have thought of more questions as well.  I have downloaded some private YouTube videos for Julie to look at of us working with George and we will discuss them.  Hopefully she can give us ways to work more effectively with George.  That is my plan anyway.

I kind of freaked in my head when Julie asked me my goals for George.  I didn't know where to start.  I know we can't work on everything at once, but it is hard to for me to prioritize.  I just start thinking of everything and get overwhelmed.  Potty training is currently a big one for me as I read of parents with teens  in diapers and it is NOT comforting.  Not chewing food or self-feeding is stressful, but I have to admit I can get a lot of good nutrition into him in a smoothie or pureed dish.   However, I know those jaw muscles are also used to speak!  Currently, I think a biggie for us in the playroom is eye contact while playing together.  I know it is key for him so that he can learn from us.

George's favorite activity is definitely the marble run and it is what he usually asks for first by taking us to the shelves.  Julie challenged us to change up how he plays by adding our own ideas.  For example, I started hiding the marbles under some of the pieces, so he has to find them first before putting them on the marble run.  We are looking to see if he is resistant to doing what we want to do.  If you think of a relationship, typically you each take interest in what the other person likes and go back and forth.  If he resists our idea then we back off but keep coming back to our idea until he is more accepting.

One thing I have learned from the past 5+ years is that progress does not happen quickly with George.  I continually pray for patience and have to work on that area daily.  As a parent of typically developing boys as well, I realize how much we take for granted as our children develop. Things came so easy for my other boys and I never spent this much time playing with them because they took off and knew how to play and  learn on their own.

I find myself locking eyes with babies I see now in awe with how they are studying me.  They will lock eyes close up or clear across a room.  It just seems so simple, but it is so excruciatingly difficult for a child on the autism spectrum.  It is like they go out of their way to not look at you, but when they do look in your eyes it is a VERY special moment. 

As Rachel arrived today and began going up the stairs with George he stopped and rubbed cheeks with her.  He just started doing this to her and it is very sweet.  I am the one he shows the most affection to, so it was special to see him do that with her.  He knows when she arrives that it is his time to play. 

Working in the playroom with George is what you call some serious quality time with someone.  It is hard because I know for me I think, "Does this really matter to George that I am here with him?" The other frequent thought is "Am I doing this right?"  I have a feeling Rachel wonders the same things and I am guessing anyone who volunteers to work with George will have to work through those issues. 

I know in my heart that it all does matter.  It just comes back to that word again---patience!

Outdoor Fun

     It is that time of year when we all enjoy being outside more.  This picture of George was taken last summer.  He loves to play in the water.

     My friend Rachel spent time playing with George yesterday and we are quickly seeing the importance of having special non-distracting spaces to work with George.

     With Natural Play Therapy George's areas need to be "Yes" environments where he is in control.  Many kids with autism or special needs have very little control of their lives and hear "NO" all day.  George's special areas will be places where we won't have to say "NO."  He will take the lead and show us his world and as he is ready we will show him the way to our world.

     We now have a make shift indoor space.  There are some distractions like the air unit, cord and curtains.  We hopefully will remedy those soon.  Getting the mirrors up, shelving, and flooring will make a big difference.  We will use high shelves with toys in clear storage containers, so he will have to communicate with us when he wants something down.  The other day he took my hand to the bottom of his indoor ladder and pulled my hand up, showing me he wanted me to make them into money bars.  It was pretty cool!

     Outdoors is another story.  Yesterday, Rachel and I discussed the outdoor challenges as she spent time with him.  There are so many things for him to get into outside like chicken poop and of course he goes right for it.  He wants to get into the most dirtiest (chicken coop) and dangerous places like climbing all over the mowers, tractor and junk in the old garage.  He pulls us to these places and if there is a door like the chicken coop then he puts our hand on the latch waiting for us to open.  For him to communicate with us this way is a big step for him and we are seeing more of it daily.  To say no we are not going to go there or do that is tough, because he is actually telling us what he wants!

     Thanks to our donations, I will be having my first training call with Julie Sando this afternoon. Yeah!  One of my questions will be asking for ideas on what we can do until we have our outdoor play area ready.  I look forward to sharing what we learn as we implement new techniques into our playtime with George.

Putting it all Together

    People who know me well know that I do not text, tweet or use Facebook.  So putting together this blog has been such a new experience and those that visit may see it changing as I learn more.  I have avoided technology not because I am not capable, but by choice.  I knew for me it would be a temptation to get sucked into things that were easier and more fun than figuring out how to best help George, how to spend more time with my older boys and husband, how to keep up with the house and keep us all fed etc...All that being said I do email and frequent yahoo groups and research late at night all I can.  I have learned so much about how to best help George, thanks to technology.  There is a balance.   I am now motivated to use more technology to reach out and help George.  I do have some health reasons as to avoiding certain technologies too, however that is another story!  :) The bottom line here is if it helps George then it helps us all!

   The responses I have received so far from people about my blog have been basically amazement about all I have detailed.  To me it is not that amazing.  I have had LOTS of time to think and I feel like God has been preparing me for the last 5 1/2 years. Looking back just makes me smile because I can see his hand in it all.  He has put amazing people in my life to encourage me, pray for me and teach me things I needed to learn.  I am so thankful for them all.

   As you can imagine, George and I have spent lots of time together.  We have never spent a night apart in almost 6 years.  Even after heart surgery, I spent the night in a chair holding his hand in ICU every night till he could be unhooked from the many tubes and monitors and I could hold him.  Neil and I tag teamed so I could use the bathroom.

     I can't remember exactly when it began, but George didn't sleep well for the first 3 years, therefore I didn't either.  I think I averaged 3 hours most nights. I am amazed at the strength God gave me to endure.  During the night he would just cry (me too, most nights)  in pain, stomach I believe.  Bouncing him on an exercise ball was the only thing that seemed to sooth him and nursing.  It was exhausting for me.  I only woke Neil up if I absolutely had to, because he didn't need to be sleep deprived either, especially since he had to work all he could to pay the bills.

     I was trying many things to figure out what was going on.  Some nights it was illnesses. George had a bad respiratory cold before the hole in his heart could be repaired.  It was scary.  My mother in law and I stayed up all night with him, taking turns holding him upright so he could breathe

     Thankfully, George's digestive system is doing very well today.  He sleeps well all night, unless he has an illness which doesn't happen too often these days.  Many people with Down syndrome have issues going to the bathroom and have to be on medication all the time.  So even though they STINK, I love George's daily poops!  It is the little things in life to be grateful for---poop!!!! Yeah!

     As I began putting together this plan and I finally spoke with Julie Sando out in California on April 19th, I already knew what we needed to do.  Julie didn't have to tell me too much about what she did, because through my research, I already KNEW I wanted to work with her.  I freely told her our struggles and felt she could relate because she has seen so many families like ours.  We are not unique in our struggles.  She gave me suggestions on how to make my letter to my out of state family members and how to reach out for help.  It was so funny when she emailed me after the call and said she felt like we knew each other already. 

    It took me about 5 days to get everything written out and I was awake most of those nights with my mind swirling with thoughts.  As soon as I had the words down and I was still sleep deprived, I had to tell someone to keep me accountable.  I knew as soon as I slept well that I would come to my senses and chicken out, because while I knew what needed to happen, it was also terrifying.  Those negative thoughts that wanted to creep in like, "How can you ASK for money and peoples' time and energy?"

    I chose to listen to what I believe was God's voice.  I know in my heart that there are others that will be blessed by participating and it is not all about us.  Knowing that George will not get better doing what we are doing now, is also great motivation.  George needs PEOPLE, all different, one on one.  So I started sharing the vision with those close to me.  I am so thankful for the encouragement I received and it is their prayers and encouragement that keeps me going!

I will say of the LORD, He is my refuge and my fortress: my God; in him will I trust.  Psalms 91:2
   
 

Our Story

 I have been the wife of a wonderful man for 19 years and a Christian for 17 years.  We have been blessed with 3 beautiful boys, that I have the opportunity to home school.  Our youngest son, George, was born with Down syndrome and we could not imagine life without him.

 From the time we found out George had Down syndrome, I quickly went into research mode checking into all the health issues involved, therapies and strategies we could use to help him be his best.  I have tried many things to help him including medical intervention, early intervention therapies, natural therapies, diet interventions and early learning approaches.  Once I realized George was not being held back by Down syndrome issues so much as his autistic issues, then my focus had to change.  The list of behaviors that the world calls autism became the number one focus for me.  I know if I can help him with his autistic behaviors and sensory issues, then I can reach him and teach him.

My background is Elementary Education, but I am also a researcher and love to learn.  I have been fascinated with natural health since 1996.  I am always looking at ways to improve the quality of our lives and those around me.  I had been interested in the rise in autism way before George was born, but didn't imagine it would ever personally affect me.  I have my own theories as to why we have this epidemic and I believe there are numerous ways to treat it.  It is about finding the way that works for your child.  I have seen kids totally recover from it, not just manage it.  So I know it is POSSIBLE.  

My research led me to the Son-Rise program in Massachusetts, where they have a large Autism Treatment Center.  They have been working with families for decades now with great success.  Certain things about their program made them unreachable for our family at this time, such as having to fly out for a 5 day intensive training.

More research lead me to Julie Sando.  She is the director of a company in California called Autistically Inclined.  She is a Natural Play Therapy Family Coach.  She actually volunteered in a child's Son-Rise program for several years.  She wanted to be a graphic designer, but working with a special child changed her whole course of life.  She trained at Son-Rise in Massachusetts for nearly 7 years.  I was drawn to her approach for many reasons.  One reason was because she works with the whole family.  She helps all family members relate better with each other and with the special needs child.  Her program "fits" our family.  I experimented with some of the techniques with George and he responds beautifully.   I want him to have this experience all day with a variety of people, so he can learn that people are unique and more fun than being in his own world.  Really what is life without our relationships? 

What is having a child with autistic behaviors like?  All children are different, but here is an idea.  Many parents see a quick or sometimes a gradual regression.  This means at one point their child seemed perfectly typical, then all of a sudden they were gone, some even expressionless, losing any skills they may have had before like being potty trained or speaking.  Imagine caring for your child 24/7 and not knowing if they really even know who you are and wondering if you will ever hear the words mama or dada.  They don't respond to their name and they don't treat you much different than a stranger they may meet.  It is as if you are just someone who feeds them and takes care of them.  People wave and smile at them in public and they totally ignore them, not making eye contact at all or really even acknowledging them.  They don't know how to "play" with toys or anyone.  They can't speak so they may make frustrating noises all day and you don't know what they need.  It is hard to teach them sign language or anything because they don't look at you or know how to mimic you.

I have tried to teach George for over 2+ years to touch his head, noes, etc....He will look at me as if to say, "I know where my head is but I can't make myself respond to touch it!."  It is literally like he is trapped in his body.  I remember thinking this early on and the first time I heard a boy tell about his experience when he "was" autistic he said the exact same thing that he was trapped in his own body.  It is a heart breaking thing to witness.

When children don't get the help they need their behaviors may even become violent and they may get to a point where their parents can no longer care for them.  The CDC admitted this year that the current rate for autism is now 1 in 50!  This is a huge statistic and affecting so many families. 

Many people may not be aware of this epidemic, because most times these parents are pretty isolated in that for them to go places with their child it is very stressful for everyone.  People with autism receive much different sensory information than we do.

For George certain noises really upset him like laughing or crying.  It is as if it is painful for him.  He also gets over stimulated visually and will start shaking his head a lot when this happens.  He throws objects to stimulate his peripheral vision as well.  It is getting much harder to take him places the bigger he gets.  He runs off with no concept of fear. 

During the last 5 years many of my friends and family have wanted to help me/us.  Being able to verbalize the help we really needed and then being able to accept it, was a huge obstacle for me.  Now I realize that this whole project can be a blessing to so many others.  Not only can it give George a chance to be the best he can be, but it will help educate others on the possibilities for their children with autism.  Also, anyone who is able to volunteer locally will be enriched by the whole experience and come away with a valuable skill, learning how to connect with a person with autism, brain injury etc... and even being able to totally recover someone.  This will be huge in the world we live in today!