The R word hurts

Today is the annual awareness day to end the use of the R word. I don't speak about this as much as I should. For many reasons. As an advocate for Emily I have decided that this issue is one that I need to address. 

I have many close friends and family who use this word. I see it said in conversation after conversation on social media sites. Yet I can't bring myself to say anything to anyone except those closest to me. As an educated and intelligent woman I take great pride when someone tells me my kids are smart. I have spent countless hours reading and talking to them in an attempt to make them brighter, well rounded individuals. One of the early signs that Emily was different was her inability to retain or learn things. Both of my other kids knew their colors before they were 2. Emily was 6 before she learned hers. I was constantly asking my pediatrician about it. I felt like a failure as a mama. It was my job to teach her things and she just couldn't get it. It wasn't until Emily was 7 that she was diagnosed with an intellectual disability. I felt great relief at the diagnosis. I'd spent 7 years blaming myself because she wasn't as bright as my other two. 

Growing up in elementary school I remember the "LD" class. I remember the kids in that class clearly. I didn't interact with them much but I knew they were different and slow learners. I also knew that most were diagnosed as mentally retarded. While I was always

intrigued and wanted to interact with them it wasn't acceptable back then. 

Emily has a very significant intellectual disability. On a scale of "retardation" being mild, moderate or severe, her IQ is in the moderate range. There will be things she will never be able to do even if she did not have an autism diagnosis. Her intellectual disabilty has caused more behavior issues than the autism itself. It has been one of the more difficult things for me personally to accept. I'm not ashamed but I know how cruel people can be to those whose "elevator doesn't go all the way to the top", "licks windows", "rides the short bus" and is "retarded". It hurts my heart more than anything else when I hear those things. So if you a frequent user of the R-word, please think not only of the individual who tries so hard to be like you, but for the parents who try very hard to make their children be the very best they can be. Different but not less. 

Today will never come again...I hope

I would like a do over of this morning! 

It started off bad when I woke up and went upstairs to check on my babies, who were enjoying sleeping in, due to a two hour weather delay. The upstairs heater is broke so I have been using space heaters in two of the three bedrooms with temps in the teens. Luke's room wasn't too cold but I cranked his heater up so he would be toasty when he woke up. Emily's heater however had cut off some time in the night and her room, being the coldest in the house was freezing! Thank goodness I dressed her in the warmest pj's she has and that she sleeps completely under the covers. Head and all. I cranked her heater up to 85 and went downstairs to enjoy my coffee in silence. 

The transition back to school after long breaks is not easy on Emily, so I braced for another morning of crying and resistance from her. Two hours of her telling me repeatedly she did not want to go, crying and asking questions and I was ready to get her in the car at 9:00. I was ahead of the game to get all three kids to three different schools by 9:50. At 9:10 they are loaded up in the car in the garage when Luke tells me he needs a notebook for school. It's ok. I've got one so I run back in and get it. We are good. I get down the street and my gas light comes on. I realize I've left my debit card in the kitchen so I turn the car around and run back inside to get it. I will have just enough gas to get all three kids to school and then to the gas station. I'm good! Emily's not crying even with the two little blips in the routine. Rihanna and Enimen come on the radio as we are halfway to the first school. I'm good! I'm singing and dancing in the seat. "I'm friends with the monster that's under my bed...yeah you think I'm crazy" when my phone rings. Shit! I've forgotten I was supposed to pick up Anna Grace's friend again today. I contemplate saying I just can't do it because A) we are going to be late if I do and B) I'm going to run out of gas!  However, I turn around and tell her mom I will get her. After all she's an attorney and I might need a favor. Emily's not happy at this point. We are not headed in the right direction and she knows it. I am hauling ass through the neighborhoods. I'm afraid I'm going to run out of gas before I make it to a gas station. I pick the kid up and turn back around headed to school. I've got 14 miles of gas left. The closest station isn't that far but traffic is bad so I do what I can to conserve. I cut the radio off. Mistake. Emily likes her tunes and the fact that things are off is making her dangerously close to a tantrum. So I say screw it and turn the radio back on but I turn the heater off thinking that may buy me a few more miles. The kids have coats so I don't care. I am making mental notes as I drive of the people I can call if I run out of gas. I've figured I can get 3 of the 4 kids to school on time but I don't know if I have enough gas to make it to the station and Emily is certainly going to be late. 

The good Lord was with me again today. I got 3 of the 4 kids to school on time and made it to the gas station with 2 miles to spare. Emily was only 5 minutes late and went in like a champ. So while I was a complete crazy woman after I dropped them off I did have a good feeling that I was able to help a friend out. Now...there is another delay tomorrow and I have to pick her up again. Here's hoping tomorrow is better than today! 

Thanks for reading ~

Jessica 

The Perfect Present

I have found the perfect present. I didn't find it in a store or get the idea from Pinterest. 

I am a perfectionist. Christmas is one of those times where I am constantly thinking of others. Wanting to make sure I let everyone know just how much I love and appreciate them. Wanting to find the perfect present. Even the mail carrier and trash collectors are usually on my list. As I rushed about this morning trying to find the perfect present for a few more people on my list, I paused for a moment. I was reminded of something I read when I was very young. The perfect present is here. It's now. There is no better gift. Rejoicing in the present, not worrying about the future or living in the past. Not every day is perfect but there is no time like the present to tell someone you care, share a laugh or even a cry. 

So if you are like me right now...thinking of all the unfinished shopping you have to do, the six loads of laundry that needs to be folded and the baking you haven't even thought about...STOP. Tomorrow isn't promised. The perfect present is already here. It's reading books with your kids or listening to them argue. It's that moment when you laugh because someone else you know has to clean up poop from walls too. It's that moment when your heart is so full of love you don't care that a meltdown happened at the grocery store earlier this week. It's finding happiness and enjoying the moment, ever how brief. 

I hope this Holiday Season you all find the Perfect Present. 

Thanks for reading~

Jessica 

Sisters

When I found out Emily was a girl, I was overjoyed. I had such great dreams of she and Anna Grace being best friends like my sister and I were. Dreams of them playing dolls and dress up together. Sharing secrets and laughing. 

I learned pretty quick that wasn't going to be the case for my girls. First off Anna Grace was jealous, as she had been the center of attention for almost 3 years. She didn't want any baby stealing her spotlight. However, as they both got older I still had hopes things would change. They only got worse as Emily's needs became overwhelming and I had to devote much of my time calming meltdowns and preventing tantrums. Anna Grace was annoyed and embarrassed most of the time. However, she was extremely defensive when it came to her sister. No one messed with Emily without Anna Grace having an opinion about it. 

There aren't very many times that these two girls get along. I suppose if Emily were typical the odds of them not get along would have the same chances. It always melts my heart though when I see an unforced hug or kind word between the two. I know that they both love and care for each other at times like this...

Thanks for reading,

Jessica 

One step forward, two steps back

It's another poop blog. It seems as though a fair portion of my life consists of it so I share in case I'm not alone.
Emily is in a regression with her pooping. I was hoping it was a one time incident a week ago but unfortunately I'm seeing a trend. Rather than dwell on the negative, I'm just going to find the humor in it and do what I have to do to get her back on track.

First off I am going to say this as I've said it before. When a bowel movement is in the potty or in a pamper, it's poop. When it is in panties and on other surfaces and items, it becomes shit in my book.

This morning Emily woke up early. I heard her in the bathroom and called up to check on her. She said she was pooping. I asked her if she wiped and she said yes. She has been doing this independently for less than a year. She will be 11 next week. She has been using toilet paper instead of my towels and washcloths(which she puts back under the sink dirty when she is done) for about 4 months. Much progress has been made in her independent pooping. Well I didn't go up to check right then since I was putting contacts in Anna Grace and straightening her hair while trying to get breakfast on the table. She came down and I got her dressed as usual. Before we left I did go up to glance under the sink to make sure there were no shitty towels in there. Not a one so I assumed toilet paper had been used. We took the other two kids to school and returned home to wait until it was time for her to go. As a precaution before I took her to school I decided to check to make sure she wiped good. I will be damned if when she pulled her pants down she didn't reach around with her hand and touch her hiney. That was my first indication it was bad! Poop on finger. I then looked down and saw a pile of shit in her panties. I instructed her to take her pants off which she did but stepped in the poopy panties while doing so. This was not a job a couple of wipes could clean so I put her in the tub. With less than 30 minutes to get to school and an empty tank of gas I ran upstairs to get more clothes after tossing the poopy panties in the trash. I walked in her room and nearly fainted. There was shit in her bed and on her precious Penny the Pig Scentsy Buddy. Apparently she had not wiped with anything and had gotten back into bed using the sheets as toilet paper.

The sadness lies in the fact that progress had been made. She was doing so well in this very important skill. This is the third time in recent weeks she has been content to have poop in her panties without saying a word to me. She doesn't poop often and it's always been a huge part of her struggles when and if she goes. I will just have to work with her more to regain the skills she just had. One step forward and two steps back sometimes but we persevere.

The humor in this is that it is not typical. It's not something you wake up on a Monday morning and think...Yippee I'm going to clean poop today. In hindsight I'm almost glad I don't see these things coming. So today I laugh in the face of autism and say I can handle any shit that comes my way. Bring it.

Thanks for reading~
Jessica

Sun sets on summer

First off this summer was a bust. My typical kids didn't read a book. They didn't go to any summer camps. They sat here and played games and watched tv all summer. Sure we took a few trips and did some fun stuff but my typical summer schedule flew out the window somewhere around the second week of June and I just didn't have it in me to make this one the Best Summer Ever. Sue me.

I could feel guilty about it and in all honesty I do. But here's what I am going to say about that. I spend the entire year, summers included, thinking about my kids. They spend 9 months out of the year absorbing all the information that's thrown at them. I gave them a break. I wasn't in their face asking them to do anything this summer because I had a lot going on myself. I never stopped working with Emily however. Due to serious regression, she isn't afforded the luxury of doing nothing. I am not given a break from helping her. She blossomed this summer because of the work I did with her. I feel GREAT about that.

So to all the mama's who feel like they didn't achieve super star status this summer I say Good Job! Don't let anyone else make you feel like you didn't live up to their expectations of what you should have done with your kids. Unless someone wants to come and be camp counselor in the crazy house that I call home, I am not going to feel badly that the sun sets on summer and it may not have been the best one ever. We survived. And there's always next summer. I hope that the break of summer rested you up for the long days ahead and it's the Best School Year Ever.

Thanks for reading~
Jessica

I'm still standing

I came across a quote earlier today that said "On particularly rough days when I'm sure I can't possibly endure, I like to remind myself that my track record for getting through bad days is 100%, and that's pretty good."

I immediately started singing "I'm still standing" by Elton John with a visual of an old barn in my mind. I am a bit quirky like that. There are days that I honestly don't think I will get through the incessant talking and questions from Emily and the constant reassuring I do. It's enough to drive anyone crazy. I was successful in getting her to stop asking me questions repeatedly by using a visual with a stop sign. She would ask the same thing over and over every few minutes. However being as smart as she is, she replaced it with something other than a question. A statement. A simple "I love you mama". There are many of my friends who have never heard those words from their kids. I am extremely blessed that she can say them to me. I must respond to her statement with "I love you too." If I do not reply she says it for me and attempts to get me to repeat it. It's a security and attachment issue with her. She only does this to me. I'm not exaggerating when I say repeatedly. This past weekend my brother in law asked me if I had ever tried to count how many times she told me she loved me in a day. It's impossible. If I were to guess I would say 200 at the least. My sister said she would rather her go back to asking questions.

I feel like an old barn at times. I'm still standing at the end of every day no matter how worn and ragged I look or feel. While I sometimes struggle with the mental, physical and emotional exhaustion of raising a special needs kid along with everyday life, I know without a doubt I am loved. Because I hear it approximately 200 times a day. That is enough to keep me standing.

Thanks for reading~
Jessica