Finally after three and a half years of complete hell and many bruises later my boyfriend grabbed the video camera and started recording the extreme difficulties I was encountering with my son. This opened the doors for my online video diary that I started for my son in hopes to find support and answers. I got great feedback from fellow parents and even professionals that expressed genuine and deep concern for the situation. With that I also received comments that were hurtful and ignorant but I was bound and determined to help my son. If this was the path I had to walk down then so be it.
After recording a three night torture session, I brought the video to the doctor's office. The doctor watched it and immediately attempted to put my son on medication and told me it was a temper tantrum. This was not the case. My son would wake up in complete rage. The fact is that my son was having Night Terrors, which is common for most toddlers but destined to last longer with children on the spectrum. Chucky was not producing the Melatonin in his system and therefore was not getting restful sleep. I left the office in complete shock and disgust at how quickly they were to medicate the child rather than troubleshoot what was going on.
I spoke to more parents and even saw another doctor. This doctor stated that I should try Melatonin and to start off at a low dosage. We tried 1.5 mg but that didn't do anything for him then we upped it to 2.5 mg which helped him sleep but he was still awaking three to four times a night in distress. The doctor said 5 mg every night at 7:30 for a month and a half. For most children this would reset their system and then they don't need it. We did this religiously and I must admit that I was scared to stop it for fear of the torture sessions to return. Regardless of my fears I did not want my son to rely on anything to acquire sleep and so I stopped the Melatonin. I must confess that it didn't last long. I kept him off of it for three days and it was horrible. The doctor and I agreed that it was best to maintain the Melatonin continuously.
He was finally sleeping better. He also showed behavioral changes during the day. Now, don't blow this out of proportion, he was far from an angel. But, he had less melt downs and seemed cheerier. It was nice to see him smile. I am not sure if the Night terrors were because of lack of sleep or if it was because of dental issues that I was unaware of, but when I stopped it he was having sleep issues again so either way it helps him.
He complained that his tooth hurt and I scheduled a dental appointment immediately. We saw three dentists that refuse to see him again and he was referred out to a specialist in Catskill. It is a far drive but the Greene Pediatric Dentistry, is amazing with him. He had a lot of dental issues. Six teeth got pulled and two of them were capped. It must sound like I am a horrible mom, but he doesn't eat a lot of candy and hasn't drank out of a bottle since he was a year old. The problem was that like many children with SPD,Sensory Processing Disorder, he could not tolerate the taste of the toothpaste or the feeling of the toothbrush. Brushing teeth always led to a major meltdown. These ended in me almost losing a finger and that was if I was lucky cause he might just take my whole hand off. LOL..
I found a wonderful toothpaste,Natural Toothpaste - Kids Orange Wow with Fluoride that works for him and after all that dental work I think he is more attentive. I am not saying he likes it but he wants to keep his teeth. While he still requires a lot of strength and patience to brush his teeth, most of the time he really tries to do it himself.
Well, boy this this post get totally off track. Umm... what were we talking about? Oh, I remember, Sleep or lack of!!! The reason for my sharing all of this with you is because I am not sure what has been up lately but he has not been sleeping. The other night I wanted to sit down and write and I have been so tired. I just wasn't able to do it. At first he was waking and coming downstairs to climb in my bed, which is better then when he was on his 3 am wake up call kick. He would awake at 3 am, I think he thought it was morning time, demanding chocolate milk with honey in it warmed up. He would drink it and then I would explain that it was still night time. If I was lucky he would go back to sleep. If not, well, it was a very long day.
Anyways, he started waking up in the middle of the night and climbing into my bed. No big deal right? About three nights later he was stirring and crying intermittently. I went in and checked on him but when I spoke he flipped out. It was a flash of the past. He was flailing and screaming. There was no consoling. I wanted to hold him but he wouldn't let me touch him and the doctor said to put him in a safe spot and not to touch him. I did that and it was horrible to see him in this state again. I think it is so hard to see your child so upset and not be able to console them. My daughter approached with caution and sat on the side of the bed. Chipmunk is amazing with Chucky and can usually calm him very quickly.
This didn't work either and he swung his arms at her face and hit her. He didn't hit her hard but it really hurt her feelings. She ran off crying and while I wanted to console her I needed to ensure that Chucky remained in a safe situation. She calmed down and I grabbed the iPad. I never figured out what was wrong but he put on some classical music and calmed himself. This is a first!!! About five minutes later he started crying that he had to go potty. Was all of that because he needed to go potty??? I am not sure but he still wouldn't let me touch him and when I did, to help him get his pants down, he cringed and moved away from my touch. Not only did he cringe but he screamed as if my touch was hurting him. My eyes were burning as I was fighting back the tears that wanted to stream down my face. I cant describe my feelings that night as they were so mixed and conflicted.
I was angry at Autism for attacking my son. I was hurt that he wouldn't let me console him. I was happy that he found a way to calm himself and I was feeling uncertain about how I could continue handling him while not neglecting my daughter's need for comfort. Finally I was scared. I am not sure why fear arrived but I think it is because of the uncertainty of what is wrong and the fear of the unknown or how much damage he will do.
Since this incident he has been sleeping well again. The only other incident was actually kind of funny yet scary at the same time. I woke up and the back door was open. Ok, Did your heart drop to your feet yet? Mine did. It was freezing in the house which means that it was open for a while. I checked for all my children and they were in their beds. Whew!! So, why was the door open?? When I went to get Chucky up for school, he had no undies on. I asked him why not and he said,"Me go Pee in snow when you sleep!!" OMG... this is funny as he went outside to pee but scary cause it was like 2 degrees outside and he could have wandered farther. Time to barricade the doors!!
Thanks for listening to my rant and I hope I didn't stray too far off topic. LOL... It has been a long week!!
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