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.
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!
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