( The first part of this email was written in the middle of the night on Saturday night. The last half was finished Sunday evening.)
So here I am, it's 2;00 AM as I start to type this. I haven't slept for more than 45 minutes at a time, I went to bed at 7:30 PM, and it appears I am up for good for a while if not for the day. If it is not one child, it's the other child that is up in the night. Andrew was my baby at one time that I could count on falling asleep and sleeping til the rooster crowed at 6:00 AM. It is not like that anymore. Thank goodness he is not like Trenton though. When Trenton wakes up, 90% of the time he is up for four hours plus or he is just simply done sleeping for the night. Andrew, on the other hand, simply wakes up crying and needs to be snuggled or rocked back to sleep. This has been happening an average of six times a night.
What does an autism mom do? Well, I am a parent who has children with sleeping issues. So I go to bed knowing I am not in bed for long and that way I never go into a deep sleep so I can hear the boys and respond when I need to. I know all too well, and I have learned the hard way, you have to respond immediately or it can be very bad news. As I am sure, you autism moms and dads who are up in the night with your children that are reading this will agree!
Trenton's sleeping has improved tremendously the past year. It will more than likely never be normal but we have improved! There are several autism mom's blogs that I follow and many moms write about the same things I do. One of the issues they write about is the lack of sleep. One mom has a 9 year old daughter with autism and her sleeping just got bad around the age of 7. Another mom types about how her son sleeps good for several months and than he sleeps awful for several months at a time. I read these blogs and it prepares me for what might be ahead........and that is never sleeping through the night again!
Ok, now it is Sunday. Trenton didn't let me finish my post. That is no surprise. Normally, I have to be doing what he wants me to do. That normally consists of sitting in the middle of the floor while he paces around me or I have to pace with him. FUN FUN right? Anyway...... back to the sleeping issue.
On Saturday afternoon my mom asked me a question. My response was, "Mom I am so tired. I don't even feel human. I am suffering from sleep deprivation again." My mom responded with a concerned look, " I know. I just don't know why you had to be so lucky to have both of them with sleeping problems?' I'm not sure either!
Besides crying to the doctor last week, I haven't even had time to mourn much about Andrew. It is obvious we are witnessing him regress daily and the pain that puts on a parent is one of the worst pains one can endure in this life. As my mom and I said, I am in survival mode. What is survival mode? It is taking action now. It is grabbing that bull by the horns and doing what you need to do to survive. I am eating, breathing, sleeping autism and it simply doesn't even give me time to really grasp what the heck is going on right now!!! My Andrew that I once knew is leaving me and he will never be back.
The pain can not be put into words. In fact I tell the good Lord every day that I am ready. Please I am ready, let's send your son down to this Earth and go home! Home where I can watch my precious babies be free of their trials. However, until that time comes, I am devoted to my boys every minute of the day. I try my best to read some scripture daily to help me get through this. I can not imagine going through this daily without my Lord and Savior!
One of my scriptures this past week was this......
2Timothy 4:7-8I have fought the good fight, I have finished the race, I have kept the faith. Finally, there is laid up for me the crown of righteousness, which the Lord, the righteous Judge, will give to me on that Day, and not to me only but also to all who have loved His appearing
There are days I want to have a pity party but when I read a scripture like this, it gives me a boost to get through the day. I am fighting the fight and I know I will get my reward for everything I am doing for my children and, of course, the fact I live the Christian life. My boys are innocent and we will have the best time in Glory Land free of what we endure on this Earth.