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!