Wills, insurance & trusts

Do you have any of the above? I have an insurance policy for all in my household (yes, even Elijah, through work). I am aware that children who receive SSI can't have more than $2000 in their own money. My biggest concern is a will. I do not have one, although I know I should. If you have one, can you pm & help me through it? I know it may be different for me because of Elijah and him having his dad as second custodian, but I still need to have SOMETHING. The reason this is on my mind now is I know someone who did not have anything in place, and passed away and left a disabled child behind. I would hate for something to happen to both me and Casey, and not have my children protected. I'm aware that no one in my family will have access to Elijah if I were to pass & that scares the crap out of me.

Little Red Cheeks

Down Syndrome mommies/daddies...does your childs cheeks get red & peel? Elijahs has been doing this for weeks and I can't find anything to help them. It's not windburn, and he doesn't have a rash anywhere else. Ive used about 20 different creams/lotions, most prescriptions. The dermatology clinic is out of ideas. Any ideas from my fellow parents? E.

IEPs, transitions, and moving on

3 years ago my little man entered the world of special needs preschool. I have always been thrilled with his services and can never believe that people have trouble with their child's school. Elijah has therapy at school 1x a week for each therapy, goes to adaptive gym at "the big school," and rides the bus to/from school. He attends full time...4 days a week, for full days. When he started I was worried that more time in school than home (it seemed that way, isn't really I know) would hinder progress and that he would have a difficult time coping. Yes, I will not sugar coat it...it has been TOUGH. When you have a multi-disabled child, every worry is ALWAYS THERE. I worry about feeding, potty breaks, having friends, having, fun, and most importantly LEARNING. We had a rough time after his Cochlear Implant failed (after his dx of Autism, we elected to not use it because of the overload of sound) I was scared that he'd never be able to communicate. Monday I did what I've been dreading for 6 years. You see, Elijah has now "aged out" of preschool, so we are preparing to transition to school age services. I was TERRIFIED, like wanting-to-puke terrified that I was going to have to fight tooth and nail like I've heard so many times. But I was so very pleasantly surprised. Our meeting consisted of 9-11 people that were talking about my boy. His teacher, therapists, teacher for the deaf, school psychologist, special Ed people, and a few others. While I will not go into his particulars, I will say this. Everyone is on the same page. Everyone knows what Elijah needs. I am confident in his home district, and the Sepcial education school he will likely spend his educational career. I know that it will more than likely be impossible to ever have him in an inclusion setting. I know he will always need help, more than most children. Unless you've set through an IEP of his degree you'll never understand the feeling that I had to go through. This is not self pity, this is cold, hard fact. In a world where I am his voice, more than once I caught myself tearing up. I tried to keep my emotions in check. I tried to put on that poker fighting face, in case I needed to fight. I didn't have to fight though. Everyone already knew what he needed and was doing everything in their power to make it come to fruition. I left the meeting at peace. I left knowing that everyone cared for him almost as much as I do, and just want what's best for him. With any luck, the transition to "the big school" will be a success. When you have a deaf, non verbal child, you just NEVER know what to expect. Keep us in mind in the coming months, as I transition one child to a new school and FINGERS CROSSED another into school. E.

That rut that never ends...and milestones

I've been thinking for a few days about things going on around my house. To be honest, it's quite crazy. Being off during the week has really given me time to see things that need to be done, or things I should probably get done. We moved into our house 4 months ago, but it seems like I haven't unpacked anything! I have sent nearly 50 bags (no joke!!!!) to the Special Olympics bin. We lost a lot of space when we moved, and I still am trying to find a home for the things that haven't got unpacked. We put up ceiling fans and freed up that space in our closet. Anytime I go to the thrift store I take at LEAST that much out of whomever's closet I have bought for. I rearranged the top section of Elijah's closet and put away all the tons of diapers for this month. I have tried to keep up on the laundry but honestly...it's a never-ending job. I do multiple loads a day and still have left overs that haven't got done. And then, I have a pretty down day...for whatever reason...and BAMMMM!!! Smacked right. in. the. face! I try to be nice to everyone possible. I try to help whoever I can...I try to give advice and I definitely try to be the best mother I can be. Whenever I get a message from another mom (or family member), I try to be as comforting as I can. I try to reassure that whatever they're going through will probably pass. Then I sometimes get messages that AREN'T nice...ones that I really wish I hadn't got. Like the ones from last night for instance. Let me just say...again...if you are going to send me messages, please have the guts to do it with your name attached. I recently took a cyber break because of this crap. The messages I got last night were not only anonymous, but they were outright MEAN. I can't imagine, as an adult, telling another adult that they should "end their life so that everyone else can stop suffering." Really!? Anyways, the next message I get like this will end this blog, my facebook page, and everything cyber for me. Please realize that I NEED this support. I NEED the people I converse with. I need everyone that I interact with, (or don't, I don't really know who sent these latest messages), and I will not tolerate anymore of this. Moving on. Tomorrow marks 4 years since I married my husband. Totally unbelievable that he survived this long! :) And today was the first day RaeLynne survived more than 8 hours in big girl panties! If she wouldn't have slept so long, she may have been able to make it to the bathroom. She came out of her room crying that she "tried really hard to hold it, but just couldn't..." I felt so bad for her. She really wants this! This weekend is Easter. I will be taking a cyber break after Friday night for the weekend. Anyone that needs me can contact me via phone. Hope you all have a great weekend! E.