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
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