Frustration

Oh man. Where to begin... So Mason has been on this medication that both Lonnie and I were okay with, not excited about but okay nonetheless. We liked it because it is in his system and out within about 3-6 hours. So we were giving it to him in the morning after breakfast so he would be good for school. Then by the time he got home it was out of his system. No big deal we are used to it. We had his annual IEP meeting last week and everyone that works with him said that they had seen tremendous differences (in a positive way) since he started this medication. Awesome! We had an appointment with Dr. K on Wednesday and I told her that at home we really haven't seen a difference the very few times we've given it to him prior to big events that we know would be difficult and/or overstimulating to him, but that his teacher and therapists all agreed that it is helping him at school. I also explained that he was not given any medication last week because of spring break and he simply didn't need it. I did advise her that he has problems going to sleep but once he is asleep he sleeps great. So she writes a new prescription for a medication that will last 10-12 hours and a sleep medication that will help him go to sleep and will be out of his system within 3 hours. So on Wednesday night we gave him 1/2 of the sleep medication. He was asleep within 20 minutes...a miracle drug! or so we thought. He woke up hysterical at 11:00 and was wacked out. He was saying that there were monsters in his room (which he never does), it was too dark in his room, etc. So needless to say Wednesday was a rough night. Yesterday morning I gave him his new medication. I didn't really notice anything different with his behaviors during the time he was home. Mason was asleep when I got home last night at about 8:20ish which is unusual for him. Lonnie went to work and I went to bed about 10:00. At 11:30 I woke up to Mason talking, the hall lights on, his bedroom light on, and all of his shutters open. So I went in and asked what was going on he wanted a hug and a kiss. Alright. Done. I turned everything off and closed his shutters and said good night. At 2:30 I woke up to him screaming and all the lights on again with the shutters open. What the heck?! Again, he wanted a hug and a kiss. Lights out, shutter shut...good night. 4:30 same darn thing. This time I took Saige out of his room and locked his door. For about an hour and a half all I've heard is kicking, grunting, and screaming. How the others sleep through this I do not know. They are blessed.

So long story short Mason will NOT be receiving any medications today. I WILL be calling Dr. K's office and saying I DON'T THINK SO! We are moving backwards vs. forwards. I am so frustrated with everything. We are also trying to figure out the school thing. As it stands I do not want what the school is wanting to do right now. I still need to go down to the school and observe the classroom they want to put him in. WHY? Why is this so difficult? Why don't others, especially educators who supposedly love children, truly care about our children? Why haven't I received an answer to our prayers yet? Why didn't it dawn on me that hello the medication was working and if it's not broke don't fix it? All I know right now is that I am not happy with the way things are going and some phone calls will be made today. Also, I'm pretty sure that at least one Temple trip and fasting is in order! It is so difficult to sit back and watch your child go through this. And I'm afraid that this is just the beginning. I am so nervous and scared about the whole school thing. Which school to put him in, what type of classroom to put him in, how's his teacher going to be, how are the therapists going to be, is he going to be academically challenged? So many questions with no answers right now. Is it going to be like this every school year? Wow. This is going to be such a long road. I know that it is completely worth everything though. My child deserves to have the same quality of life, education, and opportunities afforded to him as any other child and you can bet that this momma will not just sit around and not take action. So here's to making a lot of phone calls today and hoping for some answers soon!