Progress Update (this is VERY long 😬)
Johnny is just 18yrs old and besides being a teenager, has down syndrome.
John has always been extremely outgoing, engaging and very funny. He definitely understood adult humor!!!
Roughly about 1.5yrs ago we noticed that he had started to become more disengaged with family, friends and at school. His attention span decreased and he began to “self-talk” (moving his lips with a whispered voice or laughing as if talking to someone). He would do it here and there but slowly became more frequent until it was all he was doing. Honestly, it was terrifying. He would not talk to us and seemed to be in a trance. We would have to call his name several times before he would respond and then we would actually have to yell his name. He would come to for a second or two and go right back into what we called “lala-land”. We felt sick and afraid. We lost our funny guy!!!  I was researching the self-talk and saw that it was “normal” and even “health” for individuals with DS to self-talk. This did not sit well with me, as I have always been of the mind if it looks weird it is!!! Finally, by March 2019, I was so terrified I reached out to Alison Wimmer, a neurodevelopmentalist that I worked with when john was a baby and toddler (oh my word I cannot believe he is 18!!! Ugh time goes too fast!). She directed me to the Nemechek Protocol and I began it immediately. I was lucky enough to get him into our MD & she prescribed the Rifaximin and our insurance covered it! We did one 10 day round followed another 10 days round 6 wks after the first. We noticed some positive changes after a few months. John is 5’3” and weighed 198 lbs (at 12ys of age John had a 6 pack!). We noticed that he was looking slimmer and he was no longer obsessing over food and/or asking for seconds. He was actually turning food down. By August 2019 he lost roughly 25-30lbs. We are hoping he we continue to lose another 15-20 lbs. He has a lot more energy and participating in Special Olympic powerlifting.

In June, we began to work with Alison because John was still not himself and very spacey and had minimal attention.

Alison recommended the Safe Sound protocol (SSP) which is based on years of research by Dr. Stephen Porges, the Safe and Sound Protocol is a 5-day therapeutic listening program designed to help increase the social engagement system in children and adults while simultaneously calming the nervous system.

Here are my notes from that week:

On 9/9/19 we began the Safe Sound Protocol:
Johnny listened to the adult day1a & b without issue from 7:25 to 8:25 pm. Went to bed as usual at 9 pm.
He took about 10 minutes to actually wake & get him up the next morning and took longer than normal to get dressed. Sitting on the chair for 15 minutes before I realized he wasn’t getting dressed. He was grumpy with me (which is actually normal in the morning). However, he left to walk to the bus stop without issue. Home from school w/out issue. Had a social worker visit to go over after 18yr old programs. Needs prompts to answer simple questions... remains in lala land 😏
No noticeable changes.

9/10/19
He was coloring during the session. Later that evening he actually came to me and asked for sorbet, scooped it by himself, put back in the freezer & then placed the empty dish in the sink when he was finished without being asked (these are all things that John USE to do).
Went to bed at 9 pm without complaining, but it was Nick (stepdad)  that sent him to bed and he tends to listen to him without ever complaining.

9/11/19 morning. Woke up fairly easy. Gave him direction to get dressed before coming upstairs (clothes were laid out for him on his bed), but came up in PJs anyway (however in his defense I usually bring clothes upstairs and have him change in the family room, but am trying to get him to do on his own w/out reminders downstairs in his room). Redirected & he went down without complaining & changed for school fairly quickly. He did morning stuff with some complaints, but I reminded him of the talk we had about being more kind to me. He headed to the bus stop on time.

I received a call from Johnny’s teacher. I told her to keep me posted on any changes in behavior.
She just called to inform me that yesterday & today have been “rocky”. He is always willing to at least do his work & listens well. However, two different teachers have said he has been defiant yesterday & again today. When asked to gather his work or do something he flat out told them no. No violent behavior just “no”. She said he was easily redirected after talking to him.

Came home from school & did the hour of listening without complaints. Happy mood & drawing while listening (Really sweet pictures). He continues to use both hands for writing. Draws equally as well with both hands. H was not too talkative after when asking about his day, BUT he didn’t tell me to stop talking & he seemed more focused by answering questions promptly & didn’t have to ask the same thing 2-3 times. He did not have his typical faraway look.
He went to horseback riding class without complaints. When he got out of the car he called out to his favorite volunteer by name (who was walking quickly by) to say hi. He actually said hi loud & clear. Then a classmate came walking to the arena. She said hi first, but he engaged with a smile & shook her hand. Again no spacey look. Participated in class, smiling & engaging, but need prompts to follow directions. Went to his brother's volleyball game after horseback riding (LONG day). He was not too interested in the game but addressed parents when they would talk to him. He was very excited to see one of his brother's pals; he got up with a big smile & did their typical “shake & bump” greeting they do every time they see each other. Then something interesting happened; One of the “volleyball Dads” that happens to share the same birthday as John came up to him (John has not seen him since last year) and said,” hey don’t you have a birthday coming up”? John just slightly smiled, but then got a huge smile and pointed at him and said “wait... “ I knew John remembered that they shared a birthday despite not saying it (the dad said “yep mine too” before John said it). 
Came home and had conversations with his stepdad. It was a prompted conversation, but he was engaged & actually responding 😬🙏🤞🏽

9/12/19: up, out of bed & dressed quickly & without any complaining. Said he slept well ( but that is what he always says)
Johnny’s principal called with John today & they were on speaker. He called after they had talked about kindness & respect for teachers and John cannot just tell them no and not do his work. Mr. C said that John told him that his teachers were bothering him. John spoke to Mr. C and me during this phone conversation. He did not say much, but was clear with his words & answering appropriately.
Came home from school and seems very happy. We are just about to listen to day 4. John told me he had to grab his charger first from his bedroom downstairs. The dogs were following him around begging him to play. Without being asked John brought two dog toys upstairs and placed them in the appropriate cabinets and said he would play later with the dogs. He then realized he forgot his phone charger in his downstairs in his room. He put his index finger up and said “Oh”, headed back to his room for his charger. He came back upstairs with his phone charging and began the SSP without complaints!!!

Email from John’s teacher: Things seemed to be slightly better this morning as far as his engagement which was good.  We saw less defiance today too. I believe you received a phone call from John and Mr. C today so I am hoping we see some improvement with that.  I did ask his teaches to keep me informed of his behavior in class so that I can share as much information with you as possible.  Below are some comments his Math teacher had about his performance in class so far this year. 

**Thus far, he seems to be very tired in class.  I don't know if it is refusal or just tired but he is not doing 1/2 the work he did last year.  He has put his head down and it takes several prompts to get him going.  So not much production at this point.**

I am hoping we can continue to provide you with as much information as we can. 

Have a great night!

Tanya Knutson
Special Education Teacher

9/12/19:
John came home from School & listened to day 4 a&b without complaints. Colored, made eye contact & smiled at me on & off during the session.
He went to powerlifting & he had a very hard work out. John needs help with squats because he will only bend his knees slightly and then wants to bend forward at the back. The coach said this is difficult for him but does very well with deadlifts. At the end, they had to drag a heavy wt/sled. Typically he would give up, but he didn’t quit and pulled it the required distance.
On the way home I told him he would have to take a shower as soon as he was done eating. He came home, ate, put his dish in the sink & showered without reminders!

9/13/19:
Day 5 a&b w/out issue.
I received a call from the school principal to privately discuss the conversation and his observations from the talk he had with Johnny. He stated that John was not actively participating in the conversation and needed prompts. Stated that it appeared that he was talking to himself/whispering his words, but states that he knows that John was listening because today when he got off the bus he questioned him about the conversation that they had and he answered loud, clear and correct. Later at lunch, John came up behind him (like he use to do), put his hand on his shoulders, gave them a squeeze and said Hi Mr. C. Apparently he has not done that in a very long time. He also joined his peers to play basketball without being asked to (he has been just sitting and watching for the past 2wks).

For the past couple of weeks I have not been as diligent at my notes as I was during his weeklong listening schedule, but here’s current status:

Continues to self-talk, BUT not as much and when he does it is not as intense (seriously, it was terrifying before; he looked possessed!)
Still need to shout his name to get his attention at times, but able to focus and respond quicker with answers.
Won’t engage in conversation unless talked to and still 1-3 word answers at best (we use to say he had diarrhea of the mouth… boy what I’d give to have that kid back!). But again, the changes are so positive!!! I am confident thing will continue to improve! 
He wants to go out and to more social events. He use to turn down everything just to sit and do nothing or just watch his you-tube videos.

So with all this said… I am seeing my boy come back 😍😍😍 it’s a pro, but I feel such relief ♥️♥️♥️ 
I would encourage you to reach out to discuss the SSP with Alison Wimmer, the progress that was made in 5 days is incredible! 

Looking forward to seeing what continues to come of it!!!

Thanks for your Time 😊
Rebecca — with Alison Wimmer.