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.

Sleep Journey - July 29th 2016

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." Noah has heard Ashley during the night since he was an infant so sadly it does not bother him or wake him up. I am not sure how he can sleep through it but I am so thankful for that since his room is next to hers.

Starting as an infant, she had really bad colic so the only way we could get her to sleep was to hold her, to drive around in the car, or strap her snuggly into an infant swing that would have to keep rocking. She ended up having to sleep in a swing for several months due to colic and needing motion to sleep. There were also times we could not get her calm and would scream so loud... I remember one time she was screaming and I asked Jeremy to hold her so I could get some distance. I decided to clean and turned on the vacuum cleaner....Ashley stopped screaming. We tested it out a few more times and it would stop her from screaming so sometimes we even had pull out the vacuum cleaner. We followed what doctor suggested with treating her colic and my diet but nothing seemed to help.

I don't remember exact time frame but between 5 months to her sitting up around 10 months, she would only sleep on her stomach in the crib.

Then by time she was sitting up at 10 months she would rock against the couch. This is also how she would fall asleep by banging her back/head against the crib side. We talked to her pediatrician about this but he said some kids do this and she would outgrow it. We took her back into the doctor because she was starting to do it hard enough it would form a lump on back of her head... but he said she wouldn't do it hard enough to hurt herself.

 

Believe me when I say we tried everything possible to stop this behavior from rocking her to sleep in our arms (but as soon as we put her in crib she would wake up and start banging all over again), music, sleeping in same room, white noise, brushing, joint compressions, weighted blanket, rubbing her back, etc. Looking back now this was probably the first huge red flag that something was very different with Ashley. She was already behind on several milestones and did not interact with people like other babies her age. Jeremy had severe ADHD as a child so we kept hoping this was same case with her and he turned out just fine!

So back to our sleeping issues, we quickly moved her into a pack-n-play so that she could rock against a soft mesh side. When she would rock against the side, she also made very loud noises so we would hear her when she was falling asleep and then multiple times in the night. We had many different therapists during this time offer suggestions and tips but nothing helped. We tried compression vests and helmets but she will not tolerate anything on her head. If we went in during the night, it did not help either because nothing was going to stop her from banging.

She slept in the pack-n-play for almost 2 years until she got too big for it. She slept with her chest bent over her legs or on her stomach with her bottom in the air so the length was never an issue but the concern of danger became when she was too tall that she could flip out or climb out. Following doctor suggestion, we started melatonin which helped her fall asleep faster than before but she would still wake up during the night multiple times. Then we tried a crib mattress on the middle of her floor for a few nights just to see what would happen. Maybe she wouldn't bang if there was nothing around her? Well... she just woke up 2 hours later and found a wall to bang her back against which sounded like someone hammering. She was awake for several hours doing this and got very mad if we came in to stop her. The head banging and noise making was just an alerting activity too so it kept her awake. I cannot even explain to you how frustrating this sleep issue has been for us and we have not yet met another family whose child does this to fall asleep or during the night...So we put her back in the pack-n-play for her banging and thankfully she did not try to crawl out.

We moved to Austin when Ashley was 3 years old and we needed to find another sleeping arrangement for Ashley since she was growing. Thankfully we found a special needs tent online that a twin mattress slides into and had a soft mesh lining for her to rock against. She LOVED that tent! She also stopped napping so her sleep issues were starting to affect everything. We eventually had to add in Clonidine to help her sleeping because she was waking 2-3 times a night for long periods of time so you can imagine how that affected her the next day being sleep deprived. We had to replace the tent a few times because she would ware out the mesh from rocking against it. The medicine did not completely knock her out all night but it definitely helped to where she only woke up 1 time a night. We had to make a decision that was best for entire family and we needed some sleep too. She was too young to try stronger meds and we really didn't want to go that route if we didn't have to. With the soft mesh, the doctors did not think it was causing any harm to her and it was meeting a sensory need for Ashley so waking up once a night we could live with. We saw improvements in Ashley after this in her behaviors and focus which I believe was from getting better sleep.

When she turned 5 1/2, she got too big for the special needs sleeping tent and ended up breaking it. Her sleep medication also seemed to stop working since she had been on it for a while.... So we tried a twin mattress in the center of the room again but then she found a wall to head bang against which now that she was bigger it would shake the entire house....we would go into her room to try calm her and she would get so mad we could not calm her down. One of those nights it got really bad so I went to wake up Jeremy to see if he could help me calm her down. While I was getting him, she banged her head so hard against the wall she made a hole in the wall. We were in shock and so freaked out. She did cry in pain after that so we stayed with her rest of the night. I was in tears too from frustration and feeling like we have no clue how to help her. I wish she could tell us what she is feeling. After this we got on a wait list to see a specialist and realized we were going to need a stronger sleep medication.

This is pretty ugly to share but this has been our journey. They always say "your kid won't do anything that really hurts them" but the constant banging.....what about the football players who get constant concussions and then suffer symptoms later in life?

After that horrible night, we put the twin mattress in the corner and bought an extra thick crib mattress to secure on wall behind so she could bang against that. The crib mattress did protect her head better BUT some nights it would still shake the house from her force so we had to get into a specialist soon for stronger sleep meds. The new med did seem to help better for about 8 months and she was so happy during the day!!!! However the side effect of weight gain started so we had to take her off that one. We were then graduated to a psychiatrist because the medications Ashley needed were above this doctors comfortable level. I hated hearing that and it made me nervous...


We were strongly encouraged to buy a hammock to see if Ashley would sleep in that and get her rocking motion. Well she hated it in her room and got so angry if we encouraged her to lay in it. However, she loved it downstairs to swing in and even liked Noah sitting in there with her! It did not help for sleep but it was a great investment for all our family to enjoy (especially Jeremy) since it holds up to 400 pounds. :)

In this past year we have tried 6 different meds to help her sleep and a few of them worked great for 2 weeks with no visible side effects. Then they stopped working and they call it a "honeymoon" period.... The hardest part during all this is that Ashley cannot tell us how she is feeling on the medicine so we watch her like a hawk and monitor her eating, focus, BM, fluid intake, etc. The other downfall about these psychiatric medications is that you have to start on a tiny dosage and then build up so you can't tell if it is really working until a month later. If it doesn't work, then you have to slowly taper off and then you can add in a new medication half way. This must be why we didn't see any withdrawal symptoms.

This last medicine the doctor wanted to keep increasing it so we could find the "sweet" spot to get to the right dosage for her sleeping. However, it started making her a zombie during the day and no smiles at all. This is what we observed during the Joni & Friends Retreat during the day and that vacation was a game changer for us. That is when we decided that we wanted to take Ashley OFF her sleep meds and behavior meds which have caused so many side effects. We didn't feel any of the sleep meds have really been helpful this past year so what have we got to lose? We wanted to take her off and see where she is at baseline since she has been on meds since 3 years old. I hate saying that she has been on meds that long but seeing and hearing your daughter cause harm to herself is so hard to standby and do nothing. We even had to buy a camera in her room for last 2 years so we could watch, record and update doctor on her sleeping patterns.

The other game changer of Joni & Friends Retreat is that she HAD to get use to others in the room with her sleeping so when she woke up she did not get upset like she did at home. So since we have returned from the retreat she does not get irate when we come into the room or lay next to her at night until she is asleep!!! That is HUGE!!!

So now we enter a new phase with no prescription meds at all for sleep or behavior. We slowly tapered Ashley off her prescription medications using doctors instructions and she became medication free as of Sunday, July 17th. We got an extra twin mattress out from my parent's storage and put it next to her bed so we can sleep next to her when needed. Once we see in a few weeks what she is really like with the drugs out of her system we will be trying CBD oil (Hemp Oil). We have heard good things about it and yes it is legal! Our friend Anny was the first one that posted about her son with autism seeing benefits using CBD Oil. We started reading and hearing about it more so this seemed like the best time in summer to try it out. We have prayed so much about this decision and while we don't feel we got clear direction we do have a peace about trying.

UPDATE:

I have been able to lay 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 lay there and sometimes just look at me. I am NOT allowed to say or sing anything otherwise she tries push me out. If she does try to start banging, I just ask her nicely to lay down and lets go to sleep. In the past this would have set her off and made her irate and wide awake. Now she eventually turns her back to me and I sneak out. Hopefully this can also break her 6 year routine of banging to fall asleep.



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!

7th Birthday & Back Yard Bible Club - July 17th, 2016

GENERAL UPDATES


WORDS:
Ashley is now saying "ice" spontaneously when requesting ice EVERY time!!!!! She probably will ask between 6-10 times a day for crushed ice! She also is saying "Papa" now so we LOVE seeing some of these new words especially with how clearly she is saying them! She is getting better at shaking her head yes/no and sometimes even saying the words "yes" and "no"! I have not been writing down all the words she says each day outside the Playroom so I forget pretty fast but we have heard these a lot "juice, bubbles, water, awesome, bye, chip, walk."

I recorded her using spontaneous word "ice" this morning when she was asking for crushed ice!!! We have been trying to get her to say ice for over 2 years now!

I was able to capture her saying "Papa" the morning he was coming and we were waiting for him to arrive!

BEHAVIORS:We are also seeing a decrease in time of Ashley's meltdowns/tantrums/whining and a decrease in her self-harm behaviors when she gets upset!!!! Her therapists have been a huge help in this area because they do not react to her behaviors and wait until she is calm to direct her attention or to continue the activity. It also helps having her at home this summer because when she is at school or public, there will ALWAYS be people/kids that will look which reinforces that behavior. All of us are following what they are doing so everyone being consistent helps too! This follows along what Son-Rise teachers advise in these behaviors too! It can be sooooo hard as a parent especially when you get tired at the end of the day! It has been a struggle in the past too because she is mostly nonverbal so we don't understand what is causing her to be upset and we want to figure out the situation.

POTTY TRAINING:
She has only had 1 accident in these last 2 weeks and there have also been times where she walks into potty independently to use potty!!!!!




CHRONOLOGICAL HIGHLIGHTS


Monday, July 4th

We returned home yesterday from Joni & Friends Retreat and we are recovering from fun week! For those that have expressed interest in wanting to come next year, I posted more pictures and wrote about the week on this blog "Joni & Friends Retreat June 29-July3" so we also have a journal of it for Ashley and Noah of our first family retreat!

Ashley turned 7 years old on July 2nd but we celebrated with our family on Monday July 4th! I did a Playroom session with Ashley before my parents, brother & his family came over to celebrate. Towards the end of the session we talked about what was going to happen with family coming to celebrate her birthday, playing with balloons, eating pizza, singing Happy Birthday, eating cupcakes and opening gifts! I also sang her happy birthday in the Playroom so I had her full attention! :) We came downstairs and everyone was here. We got out balloons and played with those at the beginning. Then we all sat and ate pizza. Ashley finished first and requested "cake" on her Ipad. We explained that we had to wait until everyone was done eating pizza. She sat down and watched everyone sooooo patiently!!!! I brought out a princess crown and Ashley wanted to wear it for her birthday celebration! She loved her cupcakes that were made by Grammy and cousin Lyla!

She loved her new Elmo book with music and new Tinker Bell figurines!

At the end, it was so great seeing the kids playing together and Ashley was engaging with them!!! Lyla was chasing her at one point to give her tickles and Ashley thought it was so funny!

Tuesday, July 5th

We are continuing to do our neighborhood walks but now Noah is walking with us too! The first time we all went walking (Noah not on his bike last week) I asked if Ashley wanted to hold Noah's hand. Ever since that first walk, they now hold hands around the block and I love seeing sibling love!

Wednesday, July 6th

In session with Tracy, she had a very short attention span today but loved jumping, listening to Tracy read 2 books, matching shapes, tracing shapes on the white board, taking turns with coloring book & completing some puzzles!  She said "crawchers (for crackers), yes, no, more, this, that one, I want, jelly bees (for jelly bean counting), blue, red, pwease."

Thursday, July 7th

In session with Becky, she LOVED a new activity of making a tissue paper heart! She helped crumble up the tissue paper and caught on at the end by rubbing the glue stick & placing tissue paper on that spot! She was very interactive with Grammy today and made great eye contact! They also had fun counting using marshmallows and singing songs!

Monday, July 11th

Today was first day of Back Yard Bible Club with Hill Country Bible Church. It is Monday- Thursday this week and they have 4 times slots each day at homes all over north austin. We were blessed to have 2 Special Needs BYBC options at Little Land Play Gym so we went to the 9am club. It is an indoor playground with sensory equipment and they even have physical therapy available. The owners are members of HCBC so they were happy to serve in this way. We played for about 30 minutes in the gym and then went into back party room for snacks & story time. The teenagers are the ones that run this club all week and they did a great job! I was thankful Ashley's therapist came with us since that was already our scheduled time. I was anticipating a lot of behaviors and possible meltdown from Ashley when we needed to leave play area and head to back room for snack & story time. However, Ashley's therapist helped calm her down and Ashley stayed in there sitting with all of us the entire time!!!!

At the beginning she was throwing a tantrum and really loud.... As her mom, I would have taken her out right away so we didn't bother others or keep them from hearing. However, the therapist is not bothered by this and does not react so it really helps decrease the behavior.

In session with Tracy today, she was eager to learn and loved the magnetic letters she introduced for the first time! Tracy was also able to turn 6 different situations into make it a flexibility exercise for Ashley and she accepted the changes pretty well!

Tuesday, July 12th

At BYBC this morning, one of Ashley's friend from church came and he wanted to chase her around entire time. He says she is his "ex-girlfriend"! haha! Ashley seemed to enjoy him chasing her and would laugh a lot. She didn't chase him back but it looked like she was pleased with his attention! ;)

Both my kids actually seemed to be listening to the fun interactive Bible Story done by the teenagers today so I had to get a picture!

Ashley's therapist took her to a movie this afternoon for about 40 minutes since that is something we would love to be able to do as family. We took her to a few sensory friendly movies over a year ago and stopped going since it went so badly. However, today she did so well!!

Wednesday, July 13th

At BYBC, Ashley loved playing with Drew again and got so much exercise! She did great coming back for story time again and I was so proud of her!

In session with Miranda, Ashley got to play with a new train set we were given from friends. She was not interested in building the train track but wanted to make a circle with the trains. They added on to this activity by putting Petshop toys on top of the train! She also said "trains"! She did great today with eye contact, asking for more and help, and was very affectionate with spontaneous hugs!

Thursday, July 14th

Today on our morning walk, half way through Noah did not want to hold Ashley's hand anymore. She did not like that idea so she grabbed his wrist, looked at him and put his hand into hers! It almost seemed like a sweet big sister protecting her baby brother! :) I am loving that we get to do neighborhood walks almost every morning!

At BYBC, I offered to bring in cookies to celebrate the last day. Well that was a decision that I regret because Ashley had a huge meltdown. It was not just over the cookies but it was a combination of many things that occurred and ended up in a 25 minute meltdown there so we had to leave. That was hard and I was super frustrated.

In session with Grammy, she had a great time playing with Kinetic sand and they did many activities using the sand. She even wanted to stick ALL crayons into the box of sand! She also enjoyed popsicles alphabet sticks that you piece together to show picture of animal and it spells it out below! She also listened to Grammy reading 2 strawberry shortcake books! They tried using special scissors to make confetti but she did not show interest in that today. She did say "orange, blue, white, & yes" in session.

I brought Ashley back tonight for the 6pm BYBC to try it again and it went much better. I had more confidence doing this tonight with her after seeing her therapists do it this past week and knowing that Ashley was able to sit! :) We still had some struggles over cookies and her accepting only having 2 but that is something she will get better with each time. She did great during story time and they did a fun song with actions.

Friday, July 15th

In session with me today, she was not super interactive but it was so enjoyable being in there with her. She let me help her build the train track and she asked for help to make a circle. Then she lined up all the trains into a large circle and allowed me to help with a few of the cars. I thought she might be interested in putting the Petshop onto the trains but she did not want me to touch them. Instead she lined up the animals inside the plastic box so I tried to join her using palace pets next to her.

Later she showed interest in the white boards so we practiced writing her name and she is getting better each time. It helps her to see her name written above to try copying letters. When she started losing interest in writing her name I thought I would write out the Alphabet and sing the ABC song while writing it. Ashley grabbed her marker and started tracing EACH letter of the alphabet. I was surprised and she seemed please by all the praise I gave her with each letter! I had to take a picture of it after! I was writing the Alphabet upside down so I noticed after I took the picture a few letters are backwards. Oops! I guess I need more practice :)

I tried to introduce sight words of primary colors by matching the color word to Tinker Bell Fairy dresses. The first set was using the colors that had same font as color. She did great matching that. When I switched it using black font on all color names she was not able to do it with out help of verbally saying the word to her. So then I put small paper up to my eyes and said the word so she was looking at the word while I was saying it. After I verbally said the word, she matched perfectly! I just wanted to try it today to see where she is at and I know she will get there one day! Sometimes she really surprises us so I wanted to assess! I might try next week with some popular food items (ice cream, pizza, yogurt, strawberry, cake) since food is a huge motivation and she has seen those words listed many times!

Saturday, July 16th

We got to experience our first family movie at theatres this morning for a Sensory Screening of Finding Dory and we made it to the ending credits!!!! This was so enjoyable as a family and now we have a new activity we can all do together! :) We tried 2 sensory friendly movies last year....but we had to leave after 5 minutes. Ashley's therapists took her 2 times this last week to practice and we are so thankful for their help!!!

Joni & Friends Retreat!!!! June 29 - July 3, 2016

We had an incredible and memorable week at Joni & Friends Retreat! Ashley adapted well and had the perfect STM (buddy) Tara VanDover who has a sibling with special needs! Jeremy and I got to do some fun activities as a couple & as family, Ashley turned 7 on Friday, kids were in their first talent show, and we had our 11 year Anniversary yesterday! There is no where else we would have wanted to celebrate among 46 other families who look to Christ for their strength and joy!

Day 1

I took a quick picture after we pulled out when we were stopped at a light! Ready for a brand new adventure!

These are some images from the social story they sent us to read to Ashley. It really helped when she saw the luggage and then I read it again 2 times in the car. She really liked the images of swimming and we kept mentioning "we are going to camp"!!!

This was the welcome each family got driving into Camp Allen location. They asked if we wanted quiet, medium or loud welcome! These were some of the STM's (Short Term Missionary) that did the welcome and the others were at parking area to carry all our bags! These STM's pay their way or raise money to come and be a buddy to our children all week! It's hard to understand why some would pay to come love on our children all week except that they have love of Christ that overflows!

This was Ashley's STM Tara VanDover and Ashley loved her from the start! As soon as we met Tara, Jeremy and I both felt at peace about Ashley's well being this week. She was confident and so excited to meet Ashley! She was not afraid of Ashley's behavior and soaked in all the information she needed to help Ashley have best week possible! Tara has an older sister Evin with special needs who was also a camper this week! It was such a joy to get to know her mom Leanne and sister too!

 

We all went for a walk after dinner and Ashley wanted to hold Tara's hand! So sweet!!

 

 



This was welcome session the first night and we did some fun songs! There were 46 other families that were at Joni & Friends Retreat @ Camp Allen 2. They have Retreats all over the US but the one in Texas is hosted at Camp Allen and right now they only have 3 sessions. It includes all disabilities and all ages!

 

Ice cream social was the first night and of course both kids love it!

Day 2

Every morning after breakfast we would walk around the dining hall and Ashley would lead us to the swings by tennis courts. She loved this place and so did Noah! I also loved how the sun would shine through the trees at this time of morning!

At 9am we would do family worship time in the chapel for about 10 minutes singing songs with lots of actions. Then the kid went downstairs with STM's to start their fun day! The adults then had options during 915am-3pm that they could participate in. There was adult devotion at 915am which was such a blessing to hear from a pastor attending who had a special needs child. After worship first day, we went back to room and took a 2 hour nap since night was an adjustment with all 4 of us in a small room together.

Ashley got to try fishing for first time today which I don't think she will ever request it in the future. :) She did love riding on the trailer to get out to the lake!

 

Noah had a great time in siblings class with other kids his age! They did bible class, crafts, outdoor activities, small pools, sensory rooms, etc.

 

Can you find Noah?

This was the pool by rooms that we went to every afternoon during family time at 3-5pm.

They had a giant water slide the first day that ALL kids could participate in. Noah went once with daddy but he wasn't a fan. Ashley did not want to leave the pool so she didn't get to try this year.

Second night was family dance and the them was Summer Olympics!

Marilyn Dixon came to dance with us also! I loved to see her joining Ashley in her dance moves!!!! :)

Day 3

Morning picture of Ashley on her 7th birthday July 1st!

We chose to go horse back riding this morning and it was an hour ride which made us all a little sore since not use to that! :) 

There was always a PBJ station for each meal which Ashley preferred!

There was "happy hour" each afternoon for parents that included fun games led by Meaghan Wall who is the special needs director at Stonebriar Church in Dallas. We loved it every afternoon!

While the parents had a nice dinner, the kids had a balloon fight and shaving cream fight outside! Then they got to enjoy ice cream after to finish a fun night!

Day 4

These were the cabins we stayed in and there was another identical building next to it!

 

This is the huge swing on the ropes courses that Jeremy talked me into doing with him! Yikes!

 We went to the lake after and did standing paddle boards with Jim & Marilyn Dixon and Whitney. It was fun & so peaceful!

Ashley's group getting ready to head to large pool!

 

VIDEO of the dance:
Hurray! I am so thankful our friend Amy recorded Ashley's first Talent Show performance at Joni & Friends Retreat with her daddy and we hope there are many more to come! :) video is much better than my pictures! Ashley was a little overwhelmed with lights and crowd but warmed up a little at the end especially when Jeremy twirled too! I think she was noticing Noah sitting with his class in front row! I was holding back tears seeing her able to perform with 40 other very talented special people! Jeremy, you are a wonderful daddy and this video shows your love for her!

 

 Ashley's class at talent show!

Noah's class did a dance to song but it was a new experience for Noah. He was scared and started crying until Jeremy came up next to him to help him finish song! Love it!

Day 5

Last morning of breakfast and then we had family share time. We were sad to leave but ready to all sleep in our own rooms! God willing we hope to return to Joni & Friends Retreat every summer!!!!