5 Years ago a pediatrician, behavior analyst, neurologist and neuropsychologist sat me down and said "You have a problem and you shouldn't ignore it or deny it any longer. Here are the statistics that show children in this condition that aren't getting the help and medication that they need and this is what they are doing". They discussed with me children who cannot cope in the world and instead find help in the wrong places.
I was so against medicine and was just wanting to see if more time would help.
My first thought like most people that run into us was "She can talk, she doesnt rock back and forth etc.."
I would soon be more and more convinced that what I had was not a behavior problem but a real disorder.
One that screamed when toilets flush, that thought playing with things meant lining them up in rows, that spoke in the "3rd" person for 2 years, ran when it felt blades of grass or sand touching its feet, one that barked at people, one that pulled its eyelashes, leg hairs and whole nails out etc etc... There were positive things as well. A memory that would shock people, musical talent, ever so caring and conscious of others in need or hurt, so UNworldly and many more. Some yet to be unlocked behind the chains that an autism spectrum disorder bind.
Needless to say we did start adding medications to try and help more and more new issues that we seem to be having. We switched, went back, switched again, tweaked, and tweaked until we could get to where we are now which is not where we need to be but my feeling is that there are some things that man just cannot fix.
And like I said most days we do the best we can, we still struggle a lot and hard as I try I find myself apologizing over a situation or feeling like I want to hide when deep down I just wish everyone would understand.
So that brings me to weekends like this. Medicaid only approves medications in sets of 30 and never refills early and as you all know many months have more than 30 days.
I try to never be out of medication on a school day because I would never want a teacher or other students to have a harder day than they would need to so I always "take one for the team" on a weekend day so that we don't run out.
This weekend we went without everything for the last two days which will keep us in good shape for the month. I thought it was a great time to do it since we were having a tropical storm and all and were kinda shut in.
And take one for the team I did!!
I was trying to think of how to explain what it looked like this weekend and the best thing I could think of was a cat stuck in a box full of water with loud music coming out and 17 television sets on different channels.
I guess it was a good reminder of how she is battling inside and how much she still needs help.
I guess a normal day for her is only 5 or 6 TV's on different channels.
Some people may never understand or accept it and that is just ok, but if you seen us out of the house today because it got a little stir crazy in here or if you see us one day and wonder "what in the world is wrong with that kid or MOM?" that may just be a day that she and I need your prayers and understanding the most.
Philippians 1:27 says:
"Whatever happens, conduct yourselves
in a manner worthy of the gospel of Christ." (NASB
1 Peter 4 and 7 in the Message says:
Stay wide-awake in prayer. Most of all, love each other as if your life depended on it. Love makes up for practically anything. Be quick to give a meal to the hungry, a bed to the homeless—cheerfully. Be generous with the different things God gave you, passing them around so all get in on it: if words, let it be God's words; if help, let it be God's hearty help. That way, God's bright presence will be evident in everything through Jesus, and he'll get all the credit as the One mighty in everything—encores to the end of time. Oh, yes!
