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.