Tuesday, March 20, 2012

The Toilet And Other Fears

Potty training, or lack thereof, is going to be the death of me. I try to tell myself to let it go but 4 year old pee and poop is just really not as easy to handle as 1 or 2 year old pee and poop. We have tried rewards. We have not punished. We have tried setting timers. We have tried just letting her wear panties to see how it goes. Newsflash- it didn't go well and none of these methods have worked. While she was still 3 it seemed OK to let it go but now she is 4 and for some reason being 4 and not potty trained is bothering me way worse than being 3 and not potty trained. Luckily she still fits in Pull Ups and will be able to for a long time to come. She just now wears the 2T-3T ones. Hell, she can still fit in a bumbo chair. So that's not the issue. I think what really bothers me is that I don't know if her not potty training is because of bad parenting or because of brain damage. Are we not doing for her what she needs to get it down and understand it? Or is it because her muscle control is poor? Or is it because she doesn't know to tell us or how to tell us? I don't know and that is what is really making me crazy. I think the fact that she will start school in the fall also makes me feel this immense pressure to have her trained by then. So then my thoughts go to what if she has to start pre-k still in Pull-Ups. Will the kids laugh at her? Will they be mean to her? I am having to start facing the reality of sending this sweet child to public school and I am scared out of my mind. I have to take her for testing tomorrow and I am scared of what they will tell me. I'm scared that it will be bad and that will make her even more different than the other kids but then I'm scared it will be too good and that they won't see that she does need extra help. It doesn't matter how many times we go in for testing, I am a nervous wreck every.single.time. That part just doesn't get any easier. I want my child to get the help and accommodations she needs but I don't want her singled out and I know I can't have it both ways. My mind is not ready for public school and my heart isn't either.

Wednesday, March 14, 2012


I was going to shoot for a least a post a week and I have already gotten an F on that assignment. Nice. I have spent the past few days really thinking about the "R" word. Ellen from To The Max had posted a video on her blog that was then on CNN.com and it went from there. It was about the campaign against using the word "retard." Ellen received tons of comments and a vast majority of them were rude and some downright mean. The one that really sticks out to me is this, "retardation and other developmental disabilities are a burden to our health care system and our educational system." I think Ellen was right on when she said this person has much worse of a disability than our children- this person lacks a soul.

I must admit that I have not always been sensitive about the R word. In fact, growing up, it was a pretty normal part of my language. I did not understand how unkind it really was. It was not that I did not have people around me that were affected by the word. The little girl next door had severe cerebral palsy. I babysat her frequently and I loved that child. I just didn't get it. It wasn't until I met my husband that I understood what really was wrong with the word. My mother in law used to work for MHMR and she was finally able to get it through my thick skull why it was not OK to use the word as an adjective in the same manner that I might use the word big, little, or purple. There was always a ban on the R word in her house. I had trouble at first adhering to her no R word policy but as time went on it just fell out of my vocabulary. I am so thankful for that.

So I have really been going along thinking most people say the word just as I did- not ever meaning or realizing what they were doing. I was pretty happy to live in that little world. After reading the comments to Ellen's video on CNN I have been really saddened. It appears that people really are mean and cruel a lot of the time and do mean the word in the context like they used above. They see my child and other children like her as a burden to society. If you have ever met Anna you would see that she is anything but a burden. Is she a lot of work? You betcha. But you know I was always told that anything worth having would never be easy. My typically developing kids are a lot of work too and I don't consider them burdensome either. I wanted children. I love my children. The burden is not my children. The burden is dealing with close minded people who cannot see past a disability.

Some people with disabilities may have them so severely that do not understand what is being said to them or about them but the vast majority do understand. Anna does walk funny and runs funny and her speech is a little difficult to understand but she understands every bit of what is being said to her and about her. She even asked me one day ,"Momma, why my muscles not work right?" It broke my heart because it was my first realization that she knew she was different from other kids. She will face this all of her life and she does not need any help from anyone else to point out her differences- she lives with them.

So please, think about removing the word from your vocabulary. You may be one of those people without bad intentions but wouldn't it be nice if I and others in my position didn't have to decide which side of the fence you were on? We would know because the word just wouldn't even be in your vocabulary.

Tuesday, March 6, 2012

Growing Up WAY. TOO. FAST.

At Long Last

OMG. I am finally blogging. Should I even try to catch you up on the past months or just pick up from here? I don't even know. Maybe a bit of both would be good.

I took a few posts and changed them to "drafts" so they are not gone but not viewable at this point. They explain the hell we have been through since my last post (that remains published). The short of it is that my mom and dad, for some reason I will never ever understand, went crazy and we ended up in court getting a protective order against them. The protective order wasn't enough so then we moved. Things were slowly getting back to normal for us and then I got a call from my grandmother that my dad was diagnosed with cancer. My parents were acting more normal and so we decided to have the protective order removed. I was not sure how much time I would have left with my dad and felt that I needed to somehow make peace. I have contact with my parents now but I keep some very firm boundaries. They do not know where our house is and the kids are not ever left alone with them. I do not for see these things changing anytime in the near future. The relationship with them is very different but at least it exists now. I cannot even begin to explain all that happened. It still just doesn't make any sense and I doubt it ever will.

So when we moved Carly started in a new school in a new district. She is so happy there. She has made a lot of friends. She spent the first half of the year in remedial reading because she was so behind from the crappy district we had been in. By December she was caught up and then transferred into the dyslexia program at her school. The changes we have seen are amazing. She is making so much progress and I have no doubt that moving her was the right thing to do. I really try to find positive in all things and if my parents being crazy gave us the push to move and get the kids in a better district then I guess it was worth all of the heartache and headache we went through. Carly continues to be such an amazing sister to Anna and Gabe. She is playing soccer again this season and really making strides there as well. We did a trial off of her ADD meds and it did not go over well. I think her teacher was about ready to kill me and I was about ready to lose my mind. It lasted a little over a week and her grades and behavior determined it would not work. We took her off to see just how much of a difference it was making and also because she was having issues with weight gain. She is now on a different med. She is not eating any better but is doing much better at school. We give it to her Monday-Friday and not on the weekends. It makes the weekends difficult but we have to have some days that we can cram her full of calories. The time away from my parents was difficult for her because they had always been close but kids are resilient and now it's like she never missed a beat. But the smart mouth on that kid- it has got to go. I don't know where she gets it;)

Anna Banana- where do I begin? She has been doing well. She still has her delays but overall we are moving forward and that is what matters. She will always move at her own pace and that is OK. She was evaluated by the school district at the end of last year and we were told that although she was in the 17% for speech that she did not qualify for services. I was OK with that at the time as I buried my head in the sands of denial. I had so much other stuff going on that it was just easier to pretend things were fine. They are not fine. I mean I am fine with the fact that her progress will always be on her own timeline but it is not fine for her not to get the help she needs. So in January I called the special education department and asked them if they really thought it was OK for me to send my child who isn't potty trained, who has seizures, and who is only understood about 50% of the time into a regular preschool classroom and just act like everything is fine. They tried to tell me that basically yes, they did expect that. I threw a fit. Somehow it worked. Now Anna is qualified for special services under a different category than just speech impaired, etc. Now she is under "other health impaired" and that makes things a bit easier. I have to take her this week for further testing with the district to see just what she needs. I know the battle is far from over. She is also having some neuropsych testing done as ordered by our neurologist to see how her seizures are affecting her behavior, memory, etc. That is going to cost an unbelievable amount of money so we have applied for the Texas Medicaid buy in program. I do not think we will qualify but I didn't think it would hurt to try. Anna is playing soccer this season also. I am so proud! That child just goes and tries and does and never says she can't. She continues to amaze me daily.

Then there is sweet baby Gabe or "Baby Gate" as my nephew calls him. That child is nothing but sheer joy. He is so sweet and snugly and smiley. He just turned a year old and I can't believe how fast time has flown by. He is crawling and cruising the furniture and says Dada, kitty, and bye bye. At one year he weighed 18 lbs and was 29 inches long. 4% for weight and 40% for height- yep, another tall and skinny one. He had not gained any weight since his 6 month appointment so we are working on that. He eats from the time he gets up until the time he goes to bed so I am not worried. It isn't like with Anna where she was skin and bones. Gabe looks very healthy. He also has the milk and soy protein allergy and that limits a lot of the fattening things kids eat like milk, cheese, ice cream, etc. He is taking Alimentum still. Dr Goff wanted us to try Neocate Junior but Gabe prefers to throw bottles of that across the room out of disgust. I think we'll stick with the Alimentum. We also discovered a severe peanut allergy in him around Christmas when a taste of a peanut butter cookie ended up in a horrible case of hives. One allergy Dr and allergy test later and we are now the proud owners of an epi pen and allergy plan. That kid- he was supposed to be the easy one. Oh well, he still is for the most part.

I have a million funny stories to tell and record here so they are never forgotten but I can't do it all in one day. I am only home today because Anna had the flu, then I got it, now Gabe has it. During all the craziness I got a promotion at work and am now the ICU Supervisor and I work M-F 8-4ish. No weekends. No holidays. That has changed our lives so much for the better. Consistency is key with kids and when Kenneth and I both had rotating schedules they just couldn't keep up. Now they know I will be home every day shortly after school and we have dinner as a family and do homework... It has been a welcomed change. I apologize for my absence from the blogging world. I am back now and I promise I am better than ever!