Update - November 2016

I took a break from blogging since school started but thought it was time to write an update. It feels like we are finally settling into a new routine with our jobs, Ashley's school and therapy schedule.

When Ashley started back at school for second grade it was a little rough and reports kept getting worse. I wish she was able to fully communicate with us about her day and her feelings. We saw a lot of regression in her behaviors once school started in her rock sitting, whining, potty accidents, frustration, sleeping issues plus aggression towards her teacher which was surprising. I do not want to go into all the details but when you start seeing these signs it is obvious Ashley is trying to communicate the best way she can... Thankfully we were able to get Ashley transferred back to her zoned Elementary school so she can take the bus and now she is back with her friend in SLE too!

I also started part time jobs as a tutor for our school district and as a private math tutor so having Ashley take the bus was very helpful with my jobs. Being an AVID tutor for middle school students is so much fun and I did not realize how much I miss being in the classroom since it has been over 7 years. Most of the 7th graders create their TRF Point of Confusion on math problems so it is fun seeing the students in their group guide them to find the answer. I love being there to coach them also on what kinds of questions to ask or step in when needed to help student. For me the most rewarding part of being a tutor is when you see the "light bulb" turn on and you see the confusion gone. :)

A week before Ashley started her new school mid-October we went to tour and Ashley knew exactly where to go since she was there in Kindergarten. :) We explored her new classroom and met with her new teacher and aides. Ashley seemed so comfortable and immediately started asking the teacher for help in opening a box of toys! Her lead teacher Grace also asked a lot of great questions about Ashley and got on her level to talk with her! It made me feel a lot better about Ashley's big transition seeing her so comfortable at school with her new teachers! On her first morning I kept telling her she was going to take the bus to school so she stood by the front door watching for it just like she did her kindergarten year. She said "bus" 3 times before it came!

Ashley could sit anywhere on the bus but she chooses to sit next to her friend!

Ashley's Team for 2016-2017

This is Ashley's team of Son-Rise volunteers, therapists, teachers and church Buddies . We are so thankful for ALL of them! They love, respect and believe in Ashley!


Ashley's Son-Rise volunteers who work hard in the Playroom to bring 3E's and creativity! Tracy is working full time now but still comes 1 afternoon a week to play with Ashley! Miranda and Chloe come on Sundays and Pam is our new member who comes 2 times a week! We are so grateful that they volunteer their time because they are making a huge impact on Ashley! I am also grateful to my parents who keep Noah overnight 1 time during week so that I can do sessions with Ashley!

Ashley's wonderful therapists who challenge Ashley (and us) to step outside our comfort zone and try new things! They help us address behaviors and strategies for everyone to follow! They also do a great job of encouraging all of us and motivating us to keep working hard! Ashley really enjoys all her therapists and has so much fun with each of them!

Ashley's teachers who work hard on having students be included in all events at school! Ashley is doing well at her new school and is learning the routine. Her teacher has commented several times "Ashley is so smart"! :) This picture below is the image on Ashley's visual schedule.

Ashley's Buddies (Alissa and Justine) at church who share the love of Christ with her each week! They stick by her side having so much fun while Jeremy and I get to attend worship and small group!

Sept 11th, 2016
We went to local elementary today and Ashley wanted follow Noah's lead. Normally Noah wants to do everything Ashley does but she watched so intently when Jeremy helped Noah across the monkey bars. She then came over and wanted her turn. I love seeing her learn from watching others! She did the monkey bars 4 times waiting her turn after Noah so good thing her daddy is strong! 

September 22nd 
This morning I got a wonderful opportunity to talk to Ashley's 2nd grade inclusion class! I was encouraged and motivated by some moms in Austin Special Needs to take this step! Apparently some of her peers have been asking questions but because of confidentiality teachers cannot answer. Ashley seems to be handling inclusion times better this year and even sits with her 2nd grade class entire time during lunch!!! It was sweet to see some of her peers talk about trying to play chase with her at recess and they had lots of questions! Renee gave me a great idea of having a student volunteer tell me their name without talking or writing so the students were able see how frustrating it could be for Ashley to communicate! Thanks ladies 

When we transtioned to her zoned school, her new teacher Grace even read a book to her 2nd grade class about autism and I was able to share Ashley's introduction sheet too that is pictured above!

Tuesday, October 4th 

I had the most pleasant experience grocery shopping with Ashley tonight!!! She loved pushing the cart and did great navigating through the aisles! She helped me pick out some items, unload some at check out, load car, and even unloaded car with me! Thank you Sascha and Kelsey for working on outings like these with Ashley!!!! I love seeing her progress and independence! I am still in shock of how well that went!!!

Today we met Grammy and Papa at a park and there were a few minutes on tire swing that Ashley was really interacting with Noah. It is always heart warming to observe those sibling interactions!

Halloween October 31st 

Happy Halloween! First Halloween ever that there were NO behaviors from Ashley!!! We went to more homes this year and both kids understood the Trick-or-treat process! She also said "treat" and "bye" at several of the homes!! Thank you Kelsey for working with Ashley so that we could enjoy tonight as a family! Ashley did great accepting that we didn't go into people's homes, that she could not take their entire bowl of candy, that she could not eat candy until we got home, and when we said all done!

November 1st, 2016

We also gained another volunteer for Ashley's Program and Pam already has experience from Illinois volunteering in 2 other Son-Rise Programs!!! She is a huge answered prayer and has soooo much energy!

Numbers & Letters in Playroom

We have been adding activities in the Playroom that will work on numbers and letters. Ashley now has the fine motor skills to show numbers with her fingers!!!! She is even saying "one", "two" and "three" while showing number with her hand! We are still working on counting concept but she is making progress! She really loves making the #3 with her hands. With letters she can almost identify letters A-M!!! She can say half of them too!

First Camp - November 4th

Ashley attended her first overnight camp without us and it was a small respite opportunity through a local church. I was excited she was going to experience a weekend camp, nervous she was going to be away from us with new people and also desparate for kid free weekend. My parents kept Noah for us so it was great to get 10 hours of sleep each night! :) Ashley was excited when we arrived for "camp" and apparently did really well over the weekend!

We had fun too as a couple that weekend!

November 10th, 2016 

Ashley has started to sing this past month!!! She began singing to herself in the mirror after bath time and it seemed like she was practicing her facial expressions and head motions with it. :) It has been so adorable to watch and today is the first time I was able to catch it on video! I wish I knew what song she was singing because this week it has been same tune. Anyone know? My guess is some Disney song or theme song to a cartoon.

November 20th, 2016 

We look forward to volunteering every year at our church Fall Food Drive and this year Ashley came to help!!! We are so proud of her! We took her at the beginning for a few minutes before it got chaotic. She caught on so fast getting 2 cans of corn and putting them in next empty box! It was so fun to have her out there with us serving!!!

November 21st, 2016 

We went to parks a lot this week during Thanksgiving break with the beautiful weather. Ashley is loving new phase of running with her daddy and laughs the entire time! At home, she makes him carry a book while running! :) I just love her joyful face and how goofy her daddy will be to make her happy! 

November 22nd, 2016

We had a great time today at the Austin Aquarium with other special needs families !

New foods 

Kelsey, Sascha, and Allyson have been helping us with exposing her to new foods and taking her to new places. She has eaten broccoli, cheeseburger, hot dog, Chinese food, burrito bowl, BBQ chicken pizza. green beans, dressing, turkey, etc. Some of the food we discovered she did not like but we are proud that she at least tried it! We are hoping it will help with Thanksgiving day meal too!

End of Summer & Sleeping through night!!! - August 20th, 2016

We started Ashley on CBD Oil Friday, August 12th and seemed to notice a difference starting Sunday, August 14th. Most parents told me you should start seeing differences within a week if this was right option for our child. Well....the last 5 nights of 6 Ashley has slept through ENTIRE night!!!!!!!! Wednesday night was the odd one where she was awake from 2-3am but happily lying in bed. There has NEVER been a medication that has helped her sleep through the night and we have tried more than I would like to list over last 3 years. Her head banging to fall asleep and during every night at multiple times has been our struggle since she was 10 months old. CBD oil can help with pain management, inflammation, anxiety, etc. so it makes me wonder what issue she has that we don't know about....

We are seeing some improvement during the day from her baseline with no meds that was listed last week. CBD oil is not a cure but it has very few side effects and safer than prescription medications. Our top priority is that Ashley is happy, not in pain, and gets good sleep (along with our household too!). She seems less anxious in public places and not on sensory overload. Her random "episodes" of self-harming behaviors has almost disappeared!!!! We still see some of it BUT that is related to a behavior (not getting what she wants, waiting, etc.). She is still very interested in light reflections, putting items in her mouth, and some other isms but we never thought CBD oil would decrease those. Her therapists and Son-Rise volunteers have all noticed a HUGE difference this past week! She is super happy and interactive! We are thankful for Anny & Marilyn for introducing us to CBD oil as option for Ashley and praising God for guiding us on Ashley's autism journey!



Wednesday, August 10th, 2016

She did not sleep well last night and woke up multiple times. Overall she had a pretty good day despite lack of sleep! Ashley went on a morning walk with Sascha and she captured a precious picture! We are going to miss Sascha who will head back to working at school but hopefully we will see her on holidays!

Today we though it would be fun for Ashley to try school shopping with Sascha and use her coins to buy them. I made her a visual shopping list and printed out a hard copy for her to hold. They went to HEB and Ashley did so great using her shopping list and finding the items! She even helped Sascha check them off her list once she put them in basket. I forgot to pack her coins so we will have to try that again next time! She apparently is a huge help in stores now because she will push the cart AND she can steer it around corners and down aisles!

In session with Tracy, we brought in the CD player with some of her favorite songs. She really enjoyed listening to the music, dancing with Tracy and it seemed to calm her down well. She was super flexible in session today, making great eye contact, taking turns, and shaking her head yes & no while saying words a few times with action! She did great matching letters and was very vocal. She said "yes, no, more, crachers (for crackers), rarry (for Larry), Baba (for bob), Eggie Tales (for Veggie Tales), Tracy, pricess (for princess), want red, reasy (for ready), this, music and sing".



Thursday, August 11th, 2016

I joined Ashley and Sascha later and we all went to Pei Wei for lunch! We have tried it a few times in the past but she would never even try it. She liked the honey chicken but the rice is NOT allowed to touch it! :) She did great waiting in line to order the food, carrying napkins to the table and then waiting for them to bring our food! It was a good experience to watch how Sascha and Kelsey have had success with her at restaurants! When we left I asked if she could get her backpack and she said "backpack".

We went to get Ashley new shoes after but she was not a big fan so it was a rough start. She said "no" with shake of head but we convinced her she needed new shoes since her feet have grown. Once we got the new shoes on her, she kept looking at them almost as if she approved! The woman in Stride Ride Outlet was so patient with Ashley and shared that she has a nephew with autism.

Cousin Chloe came over and had a great session with Ashley! She got great eye contact when they were jumping and Chloe did great distracting Ashley when she started random "episodes" of crying.

My brother Chris came after to pick up Chloe and Ashley seemed excited to see him. Noah and I were both saying Uncle Chris when his car pulled up. When he came inside, Ashley said "this" 3 times, then "kiss" 2 times, and then "chis" 2 times! She was trying to say his name!!! She then took his hand and pulled him to the backdoor. He asked if she wanted to go outside and she said "outside" so clearly for all of us to hear! We went outside for a few minutes and when Chris said they needed to leave she walked back inside calmly with them!

Kylie came to do a short session and they had fun with wigs, masks, and hats! Towards the end Ashley's mood changed and it got really rough. I had to eventually go in there because she would not stop hitting her face...Her moods can be all over the place these days.


Friday, August 12th, 2016

We started CBD oil this morning so we are praying that we will see quick results if this is right direction to go with her.

Today Ashley was in a good mood again and did great getting her haircut! In session, she enjoyed playing the play food, balls, bus, jumping, veggie tales songs and lots of tickles! She is also putting my arm around her shoulder which is now how she ask for a bear hug! She made great eye contact today! During the day she said "bye, ice, chichen (for chicken), really, sing."

In speech with Brooke, she did great being flexible at the beginning by going to kitchen for Brooke's water instead of going straight to the gym! She also said "no, backpack, fish, thank you, swim, ducks, please, fix it, batt (for batteries), chicken whittle" and mumbling Nemo song "just keep swimming"!


Saturday, August 13th, 2016

Today we went to Catch Air and Ashley seemed overwhelmed. It was really odd and she wanted to leave after 20 minutes. She also got to attend Camp Grace this afternoon and had great afternoon with water activities. She did have some random episodes again where she would cry out and start hitting her head/legs. We also noticed she did rocking again today at Catch Air and in the car which we haven't seen that in a few weeks.


Sunday, August 14th, 2016

In session with Miranda, Ashley enjoyed rolling marbles on the pool noodles cut in half and singing Veggie Tales! She also got to try a new game of matching Shimmer & Shine cards! She impressed Miranda with her problem solving skills because the marbles we rolling off from the middle so she was able to adjust it correctly! She said "sing, snack, cracher, and yes" in session!

We are so appreciative of Ashley's therapists over the summer!!! One goal was taking her to a few restaurants because eating out (except chicfila) has always been super challenging and stressful. Well.... tonight we got to meet family at Kerbey Lane and had a very successful dinner for 2 HOURS! She did so great waiting for food and we got to have actual conversations! We did pull out the tablet for watching netflix half way through but even trying this in the past would not keep her content to sit! Restaurants are no longer something we cannot do as a family unless they do not have WiFi ;)

Before bed sometimes Ashley will ask for a healthy ice cream bar. Last night instead of just saying "ice" she said "ice cheem" 2 times!!!


Monday, Aug 15th, 2016 

Ashley slept through the night last night and had a FANTASTIC day. Could this be the CBD oil starting to really work and help her?!?! It seemed like yesterday afternoon (Sunday) that we started to see a change in Ashley where her mood was not all over the place. She seemed content, happy and interactive ALL day today!

She was in a great mood today and I only recorded 1 random "episode" of her hitting herself. We had a great morning and she was making so much eye contact! At lunch she said "sandwich, chip, and juice".

Kelsey took her on an outing today and said she can tell a huge difference in Ashley. Last week she averaged about 30 random self-hitting episodes each day during a session (not related to behavior). Today it was only 4 random episodes during their session! :)

I forgot this week that our speech time changed so Ashley was not very happy when we showed up to see Brooke and then had to leave. I took her to Hop N Happy to get some exercise since it has been raining so hard. There had to be over 60 kids plus parents there and it was very chaotic. Somehow Ashley did not seem to mind and had a great time! I was surprised that she was not overwhelmed or anxious!

In session with Tracy, she said it was night and day from last week regarding Ashley's behavior and interaction! She was so interactive, alert, great eye contact, and laughing WITH Tracy! They enjoyed readin books during snack time, looking at animal cards, making instruments out of toys, and trying Go Fish game which she is not quite ready for. She said "book, crachers, dance, sing, some, this, Tracy, A, red, yes, no" and spontaneous words she said "birds, fro (frog), baby, silly, cheches (matches) & thuh (for thirsty)."


Tuesday, August 16th, 2016

She slept through the night again making that 2 consecutive nights!!!! She was in another great mood, made lots of eye contact, seemed alert, enjoyed playing with Noah for a while laughing WITH him, and even helped me carry in a grocery bag! During morning, she said "chip, juice, shoes, water, bye, ice, want, chee (for chicken little)." We recorded only 3 self hitting episodes that were random and not related to behavior (transition, accepting no, waiting, etc).

At speech with Brooke, she did great transitioning to leave and was very verbal! I didn't get list of her words but she apparently there were a lot of words.

In session with Kylie, she got to do a Scavenger Hunt around the room for new Tinker Bell toys and pictures!

Wednesday, August 17th, 2016

This morning we went to Hop N Happy with other special needs families and kids had a great time getting exercise. I was jumping at same pace as her and caught this picture of her so happy! She was ready to leave for lunch and did great helping me go find Noah in bounce house.

In session with Tracy, she did great matching letters A-M, matched numbers 1 & 2 correctly to a picture with correct number of dots shown and matched #3-10 with prompting to correct picture of dots! She also enjoyed listened to Paw Patrol Book during snack, listening to Tracy sing songs, matching fairies, and shaking pom poms. She said "snack, crachers, purple, more, Tracy, want, no, yes, water, this, that one, treats, bowl, A, B, C, F, J, L, M, 6, 7, 9, 10." Tracy observed Ashley was very interactive and really feels CBD oil is helping!


In session with Miranda, she did theme of musical toys including xylophone, cymbals, tambourine, cooking pans with spoons for a drum, metal spoons, etc. She even adapted it at the end to be pretend eating with spoons out of metal pan. She did great with eye contact, saying "yes" and "no" when answering questions.


Thursday, August 18th, 2016

Ashley was really interactive with Noah tonight! It was fun to see her wanting run circles with him and I have not seen that in over 3 weeks. It was really cute because she gave him a great hug and they were laughing together on the couch. I was only able to catch the end of it! :)

Today Ashley got to attend her Open House and she did great! I remember last year was a nightmare and ended up in several meltdowns. Today she did great accepting no a few times to items she wanted in the room. She made eye contact with her teachers and waved! We got to meet her 2nd grade inclusion teacher she will get to join during specials, recess, PE's and circle time.

In session with Chloe, she enjoyed a new Veggie Tales book that Chloe brought for her. She also said "book" 3 times and Chloe said Ashley did not hit herself at all! She made great eye contact and also LOVED when Chloe sang the Veggie Tales song!


Friday, August 19th, 2016

Today I am really starting to feel positive about CBD oil and I think it is really helping Ashley! I got to be with her for 7 hours straight today so got to observe her even better. She slept through the night again! :) She was so pleasant to be with today and seemed "present" with me more than she has been this past month. She was really comprehending what I said and she was sooooo happy! She pointed to her pink dress in family picture on the fridge so I commented how pretty her dress was and she said "dress".

We had a fantastic session today and I didn't want to leave the Playroom because I was enjoying it so much! She was interactive, smiling, laughing, lots of eye contact and many words/sounds! She had choice of several activities today but she chose "muse" for music. She played the xylophone for probably 10 minutes and did great using stick. She gave me a few turns to play too! I tried making a soft drum using spoon and the cooking pan but she let me know she was not a fan!  In session she said "yes, want, bah (ball), juice, fish (for goldfish), boat, duck, bye."

I also sang the Veggie Tales theme song 2 times today and she instantly becomes alert with eyes on my mouth. I will try my best to explain this with words because I so wish the camera had been recording. What was interesting today is that she seemed to be mouthing almost every word as I was singing. When I sang word smile, she smiled the first time too. After when she was sitting on the potty, I sang "where is my hairbrush" song and she really did great filling in!! I have never seen her fill in approximations like this for any song!!!!!!
I would pause at some places on the songs and here is what she filled in for me:

Word I was silent for            What Ashley said spontaneously with NO prompting
potatoes                                    ssss
tomatoes                                   ssss
Veggie Tales                            tales
Brocolli                                    buh
Celery                                      ceh
Veggie Tales (last line)           Eggie Tales (with CORRECT pitch)
hairbrush                                 ush (3 times for Where is my Hairbrush song)

I took her to Chic-fil-a for a mommy & daughter date since Noah stayed over with my parents last night. She again did great waiting for the food and said "dench dies" multiple times and "chih" for chicken nuggets. On the playground, it was just Ashley and another little girl around age 4. She kept getting in front of Ashley, who was sitting on the bench, asking her "can you play with me?". I just watched for a few minutes and Ashley was smiling making off and on eye contact with the girl. She didn't respond to the girl but it made me very excited seeing her listening to the girl. I loved how that girl did not give up and kept asking Ashley to play! I finally went in and tried to encourage Ashley to chase her up the stairs but she just went at normal pace up stairs and then down slide. I know she will get there one day socially and seeing these baby steps is very exciting! :)

Saturday, August 20th, 2016

Ashley slept through the entire night again!!! Ashley and I had a long walk this morning and then went to play at a muddy playground. In a short session with Jeremy, she enjoyed music again and loved getting tickles from daddy! She was really interactive with him and lots of laughs! She loved putting her hands over his facial hair and it must have been a sensory activity. She styled his hair and seemed to examine all over his face! :)

Baseline and Sleep buddies - August 10th, 2016

Ashley has now been off prescription medications for 3 weeks. This last week she has been off of everything (except melatonin to fall asleep) because we need to see what Ashley's baseline is with no medications or CBD oil. It has been rough to observe and we are very tired from inconsistent sleep. However, we know this was necessary and we have no regrets getting her off that medication with bad side effects. This weekend we will start CDB oil slowly to see if it makes a difference. It is not cheap so before we start buying it each month, we want make sure it is really helping her and no other variables are happening.
 
Positive Updates:
-Ashley has not head-banged to fall asleep for 24 consecutive days!!!!!!!!!!!!!!!!!! We cannot ever recall a single night that she did NOT head-bang to fall asleep in her last 6 years since she started doing that at age 10 months! This is HUGE for us!!! :)

-She has also not head-banged during the night or when waking up in mornings for last 6 consecutive days!!!

-She is allowing us to come in her room during the night when she wakes up too! In the past, she would get so angry if we came into her room and we only made it worse. Now she eventually turns her back to me and I sneak out.

I am not sure if all this is due to flexibility we have been working on from Son-Rise Program and therapists this summer, the 5 nights of sleeping together at Joni & Friends Retreat, or the prayers from all of you that love Ashley! Regardless, we are praising God for this HUGE blessing!!!!! I did not know if we would ever get past her head banging with sleep! Our sleep journey explains more of this struggle we have had for over 6 years.

I have been able to lie next to her every night until she falls asleep since we took her off the meds! She does not get mad that I am in there (benefit of attending Joni & Friends Retreat) and also does NOT head bang to fall asleep!!! Yay!!! She will lie there and sometimes just look at me. I am NOT allowed to say or sing anything otherwise she tries push my arm towards the door signaling she wants me out! I am using this sweet time now just to pray silently over her and for guidance!

Challenging Updates:

- We are still seeing "episodes" of Ashley randomly crying out and hitting herself. Her doctor still says it is not withdrawal symptoms but if it is not that, then what is going on??? Her therapists are seeing this too and it is not related to any behaviors (accepting no, transition, etc) because it will be completely random. Some nights she is waking up and hitting herself too. We think she might be in pain (advil does not help) or sensory overload but it is so hard to know. We will start CBD oil soon to see if this helps and if not we have another plan in place with her doctor.

- Her sleep is very inconsistent each night and she can wake up for several hours. At least she is happy awake and not head banging :)



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HIGHLIGHTS FROM SESSIONS AND WEEKS

Saturday, July 30th

Ashley slept through the night and no head banging to fall asleep or during the night!!!! She had a great day today!

We went with other special needs families to Volente Beach Water Park and our kids lasted over 3 hours!

After we got home, we all sat and watched Finding Nemo since Ashley requested that movie on her Ipad communication program Proloque2go. It was really nice because the kids both sat almost the entire movie and we just got to relax. That doesn't happen much so it was a very nice treat! We got to enjoy Chic-fil-a for dinner too!

Sunday, July 31st

She had a great morning at church and this was the first time ever she participated in music time! She got 2 maracas and banged them together during music. Normally, she cries and sits in back. It was great to get such a nice report and hear they were seeing a difference!

She had a great session with Miranda and today was "Going to beach" theme with beach hat, towel, beach ball, towel clips, 2 boogie boards, etc. Ashley decided she wanted to put the shopkins on the boogie board and pull it around the room! They had a good time!

Ashley had a great time at the pool with Jeremy and he said she was soooo interactive with him! He said it was really enjoyable and loves the differences he is seeing in Ashley! Papa also came over that night and we all went to get ice cream. Ashley did great waiting for the ice cream and waited patiently until Noah was done. My dad wanted to sit in the back with the kids and Ashley kept looking at him on the drive! :)

Monday, August 1st

Ashley awoke at midnight crying last night and it seemed like another withdrawal episode. It was hard to watch and not really be able to help. She was awake until 3am. The rest of today did not go well and I was so hoping we were past the withdrawal symptoms. :(

She thankfully had a great speech session with Brooke and was very verbal. She said "Ipad, gym, more, duck, yes, I want, no song, oh baby, oh so good, yum yum, veggie, sing, & "op" for open".


Tuesday August 2nd

Another rough night of sleep and day with withdrawal symptoms. I took her into the doctor in evening just to make sure there was not an ear infection or something that could be causing her pain. The pediatrician did not find anything so at least we ruled that out. Between her therapists and me, we counted 70 times she  hit her head and of course we stepped in to block. It is so hard to watch and it seems like she is in pain but advil did not help at all.


Wednesday, August 3rd

In session with Tracy, Ashley loved playing with Nemo toys and they placed them on the boogie boards to pull around room! She also enjoyed jumping, tickles and drawing on white board with tracing numbers. During snack time, she listened to Tracy read a Jake Pirates book for almost 10 mintues! She did great matching colors and shapes! She said "tracy, tickles, this, ten, no, two, & purple" during all their activities.

Thursday, August 4th

Today Ashley got to ride a small train in local park and loved it! Her therapist took her and they met with another boy & therapist who Ashley will be classmates with upcoming year. It sounds like there were several interactions today with Charlie and Ashley! After the park, they went to eat at Kerbey Lane because eating out can be very challenging. She did great waiting for their table, waiting for food and then eating one bite at a time. She was able to model for Ashley to take a bite of sandwich and then put sandwich down. Wow! It slowed her down so she was not choking on huge bites. She then noticed Charlie was using a fork for his meal. She grabbed her fork spontaneously and then used her fork to eat all French fries 1 at a time. :)

I took Ashley back into the psychiatrist today because she wanted to see Ashley off prescription medications and see these behaviors I was reporting. She really doesn't think Monday and Tuesday were withdrawal symptoms because it should be worse right after you get of meds and then each day slowly get better. It didn't make any sense that we had a great 3 day weekend. What I did appreciate is that she is not pushing meds on us and is supportive of us trying natural supplements or over counter meds. She suggested a trick with taking melatonin for Ashley so that her sleep might be consistent every night and stay asleep. It cannot hurt to try with her especially now that she is not head banging to fall asleep! Hoping we are on the right track here! :)


Friday, August 5th, 2016

Ashley slept through the night so everyone woke up happy today! She had a fun morning at library with her therapist and outside walks!

She did great making her PBJ sandwich and can almost make it independently. I love how she grabs the jelly out of the refrigerator without me saying anything!

In session with me, we had fun shopping at "Mommy's candy shop"! She did good counting out coins for 1, 2, 3, 4 & 5 and she is getting better each time! It is fun watching her pick out the coins, put them in my palm, and then use her pointer finger to count while I say numbers out loud! At one point, she went to stand in the corner so I asked her if she needed to go potty. She looked at me, walked out the door and went to sit on the potty! :) We spent probably about 20 minutes in there but we had a lot of fun! She was really into the green comb I use on Noah's hair so I started singing Veggie Tales song "Where is my hairbrush?". She loved that and I think I sang it 10 times. I would pause at times trying to encourage more eye contact and encouraging her to say word "sing". She did say "si" for sing 2 different times! Then I moved on to singing the Veggie Tales theme song 5 times and I heard her sing "Veggie Tales" when I paused once. She has a beautiful voice!!! After I stopped singing it sounded like she was singing more but it was mumbled. So during out entire session, she said "yes, duck, Veggie Tales, choc (for chocolate), two, ush (for brush) and si (for sing)."

She also had a great session at speech with Brooke! She said "tink, elmo, ducks, yes, yeah watch, sing, bye, boo, mo (for go), bis (for fish) & hi" to a therapist that walked by! Brooke was also describing a song Ashley was mumbling and it sounded like the "Where is my hairbrush?" song!

We went to our block party tonight and I wish I could say we had fun. It seemed several things happened on top of each other and Ashley just could not handle it. They had 2 large bounce houses in the backyard but there were painful stickers in the grass that we were not aware of. Both kids got to experience that....Ashley did not like having to put her socks and shoes back on and Noah refused go back into grass even with his socks and shoes on. Ashley then wanted to go inside the house but I had not even met the owners so didn't know if that was allowed. It was also really hot. We couldn't get Ashley to calm down and several kids were coming up asking what was wrong so bringing attention to her behavior was not helping. We ended up just needing to take Ashley out of the situation. We were sad to leave because we were looking forward to meeting a lot of our neighbors. Maybe next time...I learned that I should do more research about it before going too so we can be better prepared.


Saturday, August 6th, 2016

Today we went to JumpStreet special needs hour and both kids had a lot of fun! They opened up a new section where you can walk on top of poles that increase in height but you must wear a harness. You also have to be over 8 years old so we had some behaviors on Ashley having to accept no. I was surprised she even wanted to do that.

In session with daddy, she was not very active or focused. However, they had a good time playing with My Little Pony, counting and matching alphabet! She did say "six" after he said that number!

Sunday, August 7th, 2016

In session with Miranda, it started out really rough. Ashley wanted to stand in corner and keep hitting her head. It was hard to know if this was another "episode" or behavior to not getting something she wanted like going to the pool. Watching it on camera made it seem like her head is hurting but it is so hard to know. I almost went in the Playroom because it seemed to keep escalating. However, Miranda did soooo great not reacting to the behavior and was trying different toys to encourage Ashley to come over and play with her. Miranda then starting singing Veggie Tales theme song and Ashley walked OVER TO HER for comfort!!! It was the sweetest moment to watch! After that they enjoyed playing with My Little Ponies, singing more songs, dancing and playing with toy lizards. She also did great with eye contact and saying "yes"!

Monday, August 8th, 2016

She started out day pleasant and enjoyed going to the park with Sascha. As the day continued she seemed to be getting angry with each hour and hitting her self.

Session with Tracy was really rough too. However, she did enjoy Tracy reading books during snack time, counting bears, drawing shapes and patters on the whiteboard. She also said "some, this, yes, no, read, wait & Tracy."



Tuesday, August 9th, 2016

Today Ashley had a great time at park & splash pad! She also said "sandwich, Sascha, jump, bye, cheek-in (for chicken little movie) and sing" 2 times! Singing veggie tales songs or songs from Chicken Little movie seem to make Ashley very happy now so I try to pause and get her to request with word "sing". Today she finally said it very clearly 2 different times when I paused and just looked at her!:) Her mood was all over the place today but it was better than yesterday.


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Baseline with no medications this past week

Her therapists, Son-Rise team, Jeremy and I have been taking lots of notes this past week to record her behaviors, moods, self-harm behaviors, sleep, etc. so that we can get a very accurate picture of her baseline. This past week she has only been on melatonin at night because she desperately needs it to fall asleep. Her sleep pattern has been all over the place and she can wake up at 10pm, midnight, 2pm, 4pm, etc. It is very unpredictable and one of us goes in there. I am so thankful for Jeremy's help during this time and he can sleep on twin mattress next to her with no problems.

We have observed this past week
-putting non-edible items in mouth constantly
-hands over her ears and head down (almost seems like high anxiety)
-more stemming with hand movements and rocking sideways
-obsessed with light reflections
-very unfocused
-angry, frustrated
-aggressive towards others (4 occasions)
-very sensitive to noises & other kids crying
-fear of going on water slides, swings, escalator
-not aware of surroundings (almost walking into others)
-hitting herself (legs, stomach, head)
-bruising on her cheek from hitting herself
-scratches on her cheek and leg (she did this 1 night before we got in her room)
-irregular sleep

Counting & CBD Oil !!! - July 31st

SLEEP & CBD OIL: I hesitate how much to share but we are pretty much an open book. Ashley has had sleep issues since she was born.... I don't want to share all this to complain but it has been therapeutic for me to write out our journey. I cannot even count how many times I have stood outside Ashley's room in frustration, tears and praying out loud "God, she is in your hands. Help us find a solution. I do not know what else to do." She has banged her back & head against walls since she could sit up and this action is how she would fall asleep. During the night, she would also wake up multiple times to bang....Here is our journey if you want to read but know some of it is not pretty but that is our life.
Sleep Journey Blog
http://abbiepayton.blogspot.com/2016/07/sleep-journey-july-29th-2016.html

I understand that using medications can be controversial to some people but know most parents are only trying to help their child. We decided at Joni & Friends that it was time to take her off sleep medication that was not really working and having side effects. We have had friends mention CBD Oil so that is our next phase. Anny was the first one to ever post about it being used on kids with autism and not just helping people with seizures. I am thankful she took that step to share and she has answered alot of questions from me too! We are hopeful! Yes, it is legal in Texas in case you are wondering!

Ashley has now been off prescription medications for 2 weeks. I cannot even describe how hard it was this past week to see her having withdrawal symptoms and she cannot express how she is feeling. We kept her super active to help her sleeping at night and lots of time at the pool which makes her so happy! I had to rely on lots of prayer, praise and worship music, and lots of running during this last week!

Do we know if Ashley will be able to stay off prescription mediations? We don't know yet.  At least we can get a baseline to see what she is like instead of just switching to a new med. Do we know that CBD Oil will help with her sleeping and self-harm behaviors? We are not sure about that either but are hopeful. :) We are continually praying for guidance because God knows her best and loves her more than we do!



UPDATES:

We have now added 2 wonderful girls to Ashley's Son-Rise Program and both are very excited to play with Ashley! Chloe is Ashley's cousin so she knows her pretty well and Ashley gives her great eye contact already! Kylie found out about our program and pursued us to help!! They both came 2 weeks ago for training on Son-Rise and watched some videos to get familiar with Ashley's Program!

Sunday, July 17th

At church, she said "bubbles", "awesome" & did well accepting no when asking for a friend's cookie.

In session with Miranda, it was a little rough today. She had a lot of tantrums and lack of focus which I believe it is because we are tapering off her sleep medication. They did have fun with shopkins toys and tickles! She also said "Strawberry" very clearly for her strawberry shortcake busy book!

Chloe, Ashley's cousin, also came to do her first introduction into Playroom with Ashley. She knows Ashley pretty well which makes this easier. She is very excited to be apart of Ashley's Program and has some great ideas! In hindsight, I should have held off Chloe's first time in Playroom since Ashley was not in the best mood. Thankfully, Chloe is used to seeing some of these behaviors so it did not discourage her or make her want other direction. :)

She had a great afternoon at the pool and its great therapy for her! She loves moving around in the water and swimming to the side! She also discovered the big slide and really has to work on waiting in line for her turn.

In the evening, Jeremy did a short session with her and tried a game of basketball. She was getting pretty tired from lack of sleep last night so she put ball into basket 2 times and she was done with that! He will have to try that game at another time because I know he enjoyed getting to play with it! :)

Monday, July 18th

Ashley's therapist took her to story time at public library this morning because they have not gone well in the past. Today she did great by listening and participating especially during the parachute activity!

Kylie came tonight to do her first introduction session with Ashley and bond with her! I could tell she was really nervous before going up but she really impressed me! Kylie got excited and animated in the Playroom so Ashley loved her right away! She put items on her head to attract attention to her face and tried being the most exciting thing in the room! Downstairs after their session, Ashley kept taking Kylie's hand and directing her around the house laughing! It was cute to see how much she took to Kylie so quickly.

Wednesday, July 20th

Last night Ashley was awake from 1-4am. However she still woke happy but very unfocused. We went to Hop N Happy this morning for a special needs event and kids got great exercise!

In session with me, we did a new activity called "Welcome to Mommy's Candy Shop!" Ashley has lost interest in counting out jelly beans and we didnt feel like she was grasping concept. She loves candy and has a sweet tooth like her momma so I thought she could use coins (pennies) to buy candy items! I gave her a small purse with about 40 pennies and put 5 signs on the wall. Each sign has written name of candy, image of candy logo and below was written number of coins needed to buy it (image below). The candy was on the shelf in clear containers so she could see it. She pointed to candy she wanted and we would look below it for how many coins it would take to buy the candy. (I kept pieces very small to limit sugar but keep her motivation). After 3 sales, she really started getting the hang of it! It was so encouraging seeing her participate and get coins out of her purse! By the end she had mastered counting out 1, 2, 3, & 4 coins. We were struggling with 5 coins but huge progress and this activity lasted 30 minutes! This is first time I have seen her counting!!!!

Miranda came after work to do a short session with Ashley and enjoyed doing face painting! Miranda also did the Candy Shop activity and Ashley counted out numbers 1, 2 and 3 with coins correctly 100% for her also!!! After her session, she enjoyed walking around in Miranda's high heels! Now Miranda is going to bring some high heel shoes for some sessions to try!

Thursday, July 21

Last night she was awake for 2 hours during the night so she was not focused today. We all tried to keep her very active and lots of exercise so that might help her with sleeping tonight.

In session with Becky, Ashley loved playing with kinetic sand again and making sand castles! She also liked using a spoon to scoop into another container. She also like the pieces of game bananagram making the Alphabet with Grammy's help.

Friday, July 22

Today was really tough with Ashley's behavior and lack of sleep. I had a fun day planned for Ashley and me since Noah was at camp. She did lots of random crying, random self-harm behavior, whining, and huge meltdowns over very little things. It was so hard to be around and then it didn't hit me until later that this could possibly be "withdrawals" from her meds. I had not thought of that when it started last night because she has been off meds since Sunday and we have not had any of these type of behaviors in past week. However, we did still go to Qdoba for lunch but she only wanted eat chips and then we did painting which lasted about 2 minutes! :)

Chloe came after lunch to do her first session with Ashley! Chloe did great and reported lots of eye contact! They had fun playing with jewelry and shopkins! Ashley had a few behaviors but Chloe did not react! Ashley also kept wanting to climb on window seal but Chloe did great redirecting her to a different activity. They had fun playing with jewelry and shopkins!

Ashley is making lots of progress with swimming this summer! She is almost diving now, taking breaths, and getting better each week "reaching" with her hands to do freestyle! I love our special needs swim instructor!

Saturday, July 23

We had more withdrawal symptoms pop up today but they didn't seem to appear when she was at the pool. She loves being in water!!

This morning we went on a walk but this was the first time Jeremy joined us! Ashley wanted to wear her pink hat since the rest of us were all wearing hats too! She used to hate wearing items on her head but getting opportunities in the Playroom with mirrors to see how cute she is I feel has helped a lot!

After we went to a Special Needs Pool event and Ashley went on the big slide multiple times! She did soooo great swimming by herself to the side with no assistance!!! She could not do that last summer after going down the slide so lifeguard had to help her to side each time. She also went off the large platform and jumped off from sitting position! She must have done that slide/jump platform 15 times this morning. She really did a great job waiting her turn too!

Sunday, July 24th

We started CBD oil today because if Ashley is going through medication withdrawal then we are hoping this will help her during process. I just cannot stand to watch it anymore and Jeremy got to observe it Friday night and yesterday. We know it won't work right away but are hoping it can ease some of her discomfort she is feeling now. It is so hard knowing since she is nonverbal... She had a good day at church and only had one big random outburst of hitting herself and screaming. It didn't last too long but it did really concern her buddies/teachers and then she was super happy afterwards running around the bubbles.

In session with Miranda, she was enjoying building train track and lining up the trains. She had lots of babbling and loved getting tickles today. When they were cleaning up, Miranda incorporated counting activity while putting trains away!

Monday, July 25th

Today was better and I was able to talk to her doctor about these behaviors. She was on a very low dosage and was not on the meds long so seeing withdrawals was hard to believe. However each person is different and everyone can react differently.

Tuesday, July 26th

We had some great flexibility opportunities in the Playroom today! She built almost the entire track and let me help. Then she set all her trains out on the track but did not want any assistance. I talked about the cows and said we could put then in the flat cargo train. She watched me put one in but then moved it out. I asked her what if we put the cows and sheep at the end of the train to continue? She picked them up and added them on the end of the train line! :) I also got out the marbles and using 3E's suggested we could add those to the cargo trains. She watched me do a few and then she distributed the rest along the train!!

Wednesday. July 27th

In session with Tracy, she was very vocal today and lots of great approximations! She enjoyed the trains again, listening to Tracy read a book during snack time, matching letters and shapes, and playing with jewelry!

Friday, July 29th, 2016

It feels like we have made a turning point today with Ashley! She only had 1 withdrawal episode today AND she slept THROUGH the entire night last night!!!!

Today we went for a walk and Ashley wanted to hold Noah's hand today even though he didn't want to. When we were almost home I thought I would get a picture to capture a happy moment since this week has been pretty rough. I told the kids to smile and Ashley gave me a goofy smile with her eyes closed! I LOVED that she did that and it made me laugh! It is her personality coming out! :)

We were going to meet some friends at Chic-fil-a but their plans changed. The kids already saw we were going today from visual schedule so we went early at 11am and I decided to take them both by myself.....Yikes! I explained in the car that they both needed to stay with me while I order and then we would sit patiently waiting for food. Both kids did great!!!! Ashley was eyeing some other tables french fries but she did not grab or have any behaviors! Once the kids finished their food they went into playground and it was another moment to count as a blessing and win! I was able to go out to eat with both kids by myself!

 Ashley was actually ready to leave after 30 minutes so she helped Noah get his shoes on so we could get out of there faster. Ashley spontaneously stepped in to help when I asked Noah to get his shoes on and he didn't move! Ashley took action by getting his shoes out of cubby, pull back Velcro strap and tried to push his foot in! Such a good big sister! :)

In speech with Brooke, she had a great session and was very vocal! She said "duck, water, bye, hey, baby, hey baby, yes (with head shake too), cow, turkey, old macdonald (singing voice), moo moo, drink, which (for sandwich)!" Still encouraging to hear because she has not have best sessions with Brooke these past 2 weeks going off medication.