We are Livin’ Life, Losin’ Sanity, and Lookin’ Forward — training a special needs princess. Leah Rose was diagnosed with Freeman Sheldon Syndrome aka Whistling Face Syndrome, Arthrogryposis, Glenoid Hypoplasia, and a midline cleft in the soft palate (repaired Sep ‘04).
Please be patient while I finish updating this blog. I am transferring my journals from the original web site. Some of the posts contain my notes for me to finish. Feel free to browse, but please do visit again and hopefully I will have all of the posts finished soon. Start here for the First Entry
I had a silly moment this morning where I felt like I was being a nark. About my own child, to my husband. I’ve recently married, moved, started working full-time in a real office 25 minutes away from home, and my husband is homeschooling the Princess. Needless to say, I don’t get a lot of one-on-one time with my daughter anymore. A fact that I enjoy more than I care to admit, …. sometimes.
This morning I was doing some toenail care, you know that awkwardness of a 50 year old body trying to get to her toes, and make sure the nail clippings fall in this little bitty wastebasket, so you don’t have to lean over or crawl around on the floor to pick up the “droppings”.
The Princess strolled in, checked herself out in the mirror and proceeded to be interested in what I was doing. Out of the blue, she asked “Do you know what that bloody tissue is for?” I hadn’t noticed it, so I glanced over for a quick look. “No”, I replied. She reached in and picked it up. I’m cringing and telling her not to pick it up. It could have been where my husband was shaving and nicked himself, but to myself I was thinking, that sure is a lot of blood.
She announced that she fell, face forward on the carpet, landing on her nose and it started to bleed. I asked her if she had told Dad that she was bleeding. She said no, it didn’t bleed that much, it wasn’t bleeding now and it didn’t hurt. Oh, and I got a demonstration of how she fell. And, like a mom, I’m telling her to be careful or she will bump it again and start it bleeding.
I proceeded to the living room and talked to my husband about it and he said it was the first he heard of it. He promptly goes into the playroom and confronts her. Well, “confront” is maybe too strong a word. He ASKED her about it, she told him the same story, and attempted the demonstration again. He told her that next time, she should just tell him about it. He needs to know these things.
So later, I’m thinking what a nark I was, and laughing to myself. I was even doing the adolescent thing of peeking over my husband’s shoulder while he was talking to her, watching her reaction. She didn’t say anything to me but I can only imagine what she was thinking… “Mom told on me”.
I’m such a nark, and a nerdy one at that, lol.
Yesterday was the first day of school. August 1st. Can you believe it? Houston County schools are one of the first school systems in Georgia to start so early. Works for me. I have been counting down the days for weeks.
Leah Rose was a high fashion statement in a pretty, pink sleeveless dress with dark pink, velvety flats. Her matching purse has a black background with colorful symbols of peace signs and hearts, and trimmed in the inevitable pink. Her purple, star shaped sunglasses add the final touch of a starlet preparing for the red carpeted runway, all the way to school.
I won’t give you a detailed inventory of what is in her purse, but let’s just say she is prepared for any injury that requires nursing care, and she is prepared to repair her makeup and lip moisture, as needed.
Her “ride” consisted of one sloppily dressed mama/chaffeur driving a white SUV, no picture needed.
I wonder what kind of fashion statement she is going to make tomorrow?
A couple of weeks ago, I posted I am Mom — I’m in Charge — Hear Me Roar. My decision to make her sit and read a book, with no privileges has had so-so- results. She is not taking it as punishment, not once has she asked for her electronics back, but she does ask how she is doing at the end of the day. It appears she is reveling in the idea that she is spending time with me, and surely that is not a punishment, although there are some people out there who might disagree :D.
The weekend after I wrote the previous post, I allowed her to spend Friday night with a friend. I was going to a Girl Scout training event early on Saturday morning and would be gone for most of the day. When I was returning home, I called my friend to tell her I wanted to stop at the grocery store and boy, did she have a story to tell.
Leah was a brat the entire time. She spilled chocolate Pediasure, …not once, …but TWICE. She got caught jumping on the bed. She wouldn’t go to sleep. She refused to pick up her toys that my friend asked her to pick up.. repeatedly. She kept going out the back door, leaving the door open, and letting the dogs in. She just completely shut down and refused to listen or talk to my friend. On Saturday, they had a birthday party to attend, and Leah refused to participate. She went in the birthday girl’s bedroom and refused to come out, not even to sing the birthday song. My friend was furious. Leah has never acted that way towards her before. All she did was whine the entire time too.
So I finished my shopping, growing more irritated as the minutes ticked by. When I picked her up, I marched in the bedroom and told her to get her things we are leaving now. She started to cry and asked what did I do? She only had her stuffed reindeer and spotted puppy with her, and a balloon tied to her wrist. I told her to get in the car and not say a word. When we got home, I told her she had to sit at the table and be quiet. It was taking everything I had to keep my voice from rising a couple of notches. I told her that my friend was very upset with her behavior and she was mad at me (not really MAD at me, but I told Leah that). But I told Leah that my friend said she was no longer allowed to spend the night unless she started acting right. Leah cried.
I told her she was going to sit at the table, on her bottom, with her feet on the floor, and she was going to write sentences until I told her to stop. The sentences are:
1. I will not talk back.
2. I will put trash away.
3. I will do as I am told.
4. I will do it the first time.
5. I will put my toys away.
6. I will speak when spoken to.
7. I will say ma’am or sir.
8. I will not whine.
9. I will go to bed when told to.
10. Mama will spank me if I don’t act right.
I told her she didn’t have to write #10, but she had to write the rest. I told her she was going to start going to bed at 9:00 again, no movies, no nintendo, no wii, no computer, no tv, no radio. Oh, the tears and the sniffling. For the most part, she has been sitting at the table reading books. I got out a Transition Workbook (from 1st grade to 2nd grade) that I had bought a few months ago, and she worked a few pages in it. Sometimes I would let her color or draw.
I haven’t spanked her with the belt, yet. That may still come. I am still having to repeat myself when I ask her to do something.
This morning when we were getting dressed for church, she was asking for something. I can’t remember what it was, but she said “I want…” I told her “No”, then she asked “why not?” I told her because she needed to ask it again. She did, again using the “I want” phrase. Again, I said “No”. She ran off wailing and crying. After a while, she came back and said “May I please…?” I considered that a very small step forward.
I am calling the entire ordeal a big #FAIL at this point in time, because I find myself distracted and I’m not enforcing the sitting at the table rule and I haven’t followed through on spanking her for not doing as I asked. I have allowed a little more free time to be creative with clay and designing a little snowman village. But that is going to stop tomorrow. She hasn’t talked back to me much, but she does ask “why” when I tell her to do something. Why can’t “because I said so” be sufficient?
School starts tomorrow and I am intending on turning this big #FAIL around and make it a success. The sitting at the table is going to be enforced with doing homework and reading books. Nothing else. No getting up from the table to play with the dog, or anything else for that matter, without asking for permission.
I made one more decision that I haven’t told her about yet. Her birthday is coming up in September, her 8th birthday. I was planning a big party at Johnny G’s, her favorite play place. A whopping $400 party for 10 kids. I have decided that that isn’t going to happen. We are going to have a quiet birthday dinner with my mother, my son and his girlfriend. That’s it. Maybe if her behavior improves, I might take her there by herself, but she isn’t going with friends. I’m dreading tell her because I know the drama of wailing and tears will prevail for a while. I had turning myself into a cold-hearted Mama.
The restrictions I had placed on her have been holding up… no play dates, no movies, no electronics (Nintendo, TV, Netflix, Wii, DVD player). I can enforce those. I just haven’t figured out how to make her sit still at the table and stop talking all the time, without having to go to drastic measures. I’m not ready to reward her yet for even having the tiniest bit of good behavior.
This coming weekend will be a challenge since I am going out of town to attend a retreat for moms of special needs children, a weekend of “inspiration, encouragement, worship, and pampering.” A time to “Refresh Restore Renew”, sponsored by Rising Above Ministries in Cookville TN. I will be going to Faith Baptist Church in Monroe, GA this coming weekend. I am so looking forward to it. My son and his girlfriend will be keeping Leah for me. This will be a first for my son, well, I take that back. He has taken her to the Aquarium in Atlanta, and to indoor playplaces, but he has never kept her overnight for me before. I have discussed all of our trials over the past couple of weeks with him and his girlfriend, and they are backing me up and supporting me 100%. It should be interesting to see how it all turns out.
I am still determined to break this dramatic behavior of hers, even though I know that it is part of being a girl, but the brat part of her has got to go away. I have been praying for God’s guidance and I think I am on the right path. I have been reading Bible stories to her to keep her mindful of being obedient, but I don’t think she the connection has dawned on her yet. Hmmm, that’s a thought track that I haven’t tried in discussion with her yet. I’ll have to remember that. See what blogging can do for you? LOL.
I am Mom, I’m in Charge, and I’m still Roaring.
For the past couple of weeks, I have been battling extreme laziness, back talk, and just general insubordination from the Princess. Honestly, I am about at my wits end. Her promises of doing better aren’t kept. I’m constantly threatening with the taking away of toys and privileges.
Well, tonight, I have had it. I have 2 more weeks before school starts and I’m tired of just dealing with it.
After starting to give her warning signals an hour before bed time with instructions of what needed to be done before she went to bed, and being ignored, I finally took away one of the electronics. I go in her playroom to turn off other electronics and I find food/trash everywhere. I insisted she get in there and clean it up. She inched across the floor on her knees begging and crying, and slowly picking up things that I’m not even telling her to pick up. She is deliberately using the drama card to get out of doing what I’m telling her to do.
Well, this time, the drama is mine. Spanking is not high on my priority list, but I’m done. I am so fed up with her not taking me seriously, that she is going to start to feel the palm of my hand on her backside. She got swatted and told to go to bed. I picked up all the “trash” because it had to be done.
Next, I went in her bedroom and she is sitting on her bed, sobbing that fake little cry, and I told her that tomorrow she is sitting on the couch, no talking, and she was going to be reading a book.
My final act before I left her bedroom was pulling an old belt out of the closet. I showed it to her and I told her that from now on every time she back talked me or didn’t do what I asked, she was going to feel the belt on her bottom.
This cycle has got to end.
She is going to start hearing me roar.
Every year, Father’s Day turns into more of a day of stress for me. I shouldn’t stress over it, but I stress over my hair is gray and I’m the mother of a 7 year old at 49, so stress is a constant companion. Leah Rose’s biological father is not in the picture, by his choice, and has not been involved since a few weeks after I found out I was pregnant.
In the beginning it was easy, I didn’t have to mention a father because she was too little to understand. When she started school at 3 years old, it was still easy. In Kindergarten, she started becoming more aware of who or what a father is because of classmates at school who did have fathers, but didn’t question it. This past school year, the awareness has steadily increased.
At first, I happened to mention that I had been married, first to Ted’s Daddy, and then to someone else. She then wanted to know if they were her Daddy. No. “So who is my Daddy?” is the next question. My mind goes numb. I think I muttered something like, well, he’s not around and I’m not sure where he is. Somehow I managed to squeak by on that one without making a commitment about anything.
Next, she learns that my mother was married, she had a husband, and he was my daddy, and he is her granddaddy. We have told her several times, and every time the amazement drama is more increased.
This past weekend, we went to the cemetery to replace the flowers on my Daddy’s grave. Of course, this lead to a series of questions about where is he and heaven, and on and on. Then the next question was where is my daddy? Again, my mind went numb, and I know Mama’s brain was shutting down too. She was driving and I was blindly staring out the window. I tapped my fingers on the arm rest and squinted my eyes, hoping the answer would be somewhere imprinted behind my eyelids. It wasn’t there, of course, and the question was repeated again. And my hope was dashed that she was so involved in her Nintendo game that she would forget she had asked the question.
When the question came again, my mouth popped open and closed. No sound came out. The air in the car was getting hotter and hotter and it was harder to breathe. I knew I was going to either burst out crying, or screaming, or pulling my hair out. The wheels were spinning, but the gears were sluggish and chugging slowly causing extreme and increasing pain in my heart and it took everything in me to keep from showing any emotion at all.
Finally, I took a breath and said something inane about a friend traveling to Texas and her mind refocused on a different topic.
It’s hard being the mother and the father. I have to back myself up when I try to discipline her. How does that work, you ask? It doesn’t. It’s impossible. I have friends that try to support and encourage and back me up when they see that I’m struggling. But honestly, that doesn’t always work either. I have been in two relationships where they have tried to step in and be a mentor or a role model for her, and that didn’t work out either.
Because I grew up living with both a mother and a father in a loving home, I don’t know how it feels to have something missing in your life. I am an only child, but I never missed having brothers and sisters. I’m stumped as to how to overcome this. She will be in the 2nd grade this Fall and will be 8 years old. I just don’t know how to explain it to her so that she will have an understanding and not be hurt. The time for hurt and tears should be later when she has the mental skills to fully process the information I have to give her. Oh by the way, he’s a liar, a cheat and a thief. How’s that for a resume for your biological father?
My thoughts turned to this topic after reading a post called Growing Up Without a Dad by Bear Haven Mama’s Tales. This mama grew up without her biological father in her life after the age of five, but she had a role model, her step-father, who was around and is now a grandfather to her children. Then, I read the post on Early Childhood News and Resources called Single Moms and Father’s Day. This mama lists ways she copes after she drops off her children at their father’s for the day. Leah Rose has no grandfathers and no role models to fill in. It’s disturbing and it breaks my heart.
So, this single mother/part-time dad is signing off with more questions than answers. A time of prayer on my knees is in order, asking forgiveness and a door to open to provide the answers that I need and the grace to come through it with dignity for both of us intact.
We spend way too much time in the doctor’s offices. Leah Rose can now carry on her own personal conversations with the specialists. A couple of years ago, we couldn’t get her nose unglued from the Nintendo DS screen to even look up at the doctors when they were talking to her.
Since Leah had her ear tubes removed in December, we have been seeing the PN at the ENT surgeon’s office every 6 weeks. Today was our last visit. We were dismissed from care with instructions to return if problems occurred. We have been in their office so many times, that Leah can now tell me what is on the posters hanging on the walls of the exam room. While we were waiting for the PN, she started talking about the poster, about allergies, and pollen, and fungus. She informed me that she was going to be a doctor when she grew up. I asked her what kind of doctor? A doctor that takes care of children? No. A tummy doctor? No. An ear doctor? No. A bone doctor? No. Well? An allergy doctor, so she can take of Mommy’s allergies. Ohhhhhhh.
Today was a day where I just sat back and watched. The PN asked if she had been feeling okay, she replid yes, but her friend from school and his sister had ear infections and a fever, but she was okay. She told the nurse earlier that she used to have ear infections and a fever when she was a baby. The PN asked if she had a runny nose? No. Sore throat? No. Ears hurt? No. Can she hear okay? Does she say ‘huh’ a lot? No. The PN giggled and said I bet Mom would say different on that one. I just sat back and watched. Oh, so much less tramatic than it was a year ago, with the fighting and the screaming. Of course, we had to check the kitty’s ears too. Cuddles always goes with us to the doctor. Cuddles got a clean bill of heatlh too.
And, yay, we are off our restrictions… we can sniff, have straws, lollipops, and go swimming now. No more ENT visits, no more audiology tests. YAY!
Later this evening Iwas thinking about how smart Leah is and how very aware she is of everything around here. She just soaks everything in. I remembered her chattering at me this morning. We gave her a quick shower this morning since it was Spring photo day at school. As soon as she got out of the shower, she rushed to the bathroom. When she got done, she informed me why she had to go pee so soon after getting out of the shower, because the water went up and it came back out. Okay, I’m not overly squeamish, I can talk poop with the best of the moms, but that was a bit much for me. She can now almost list all of her surgeries and explain why she had to have them.
Oh yeah, I see medical school in her future.
I’m always concerned about my daughter’s hands and arms. There are sometimes she seems to be so strong… like when she is pulling on my arms. But there are other times that they seem so very weak, like trying to pull a shirt over her head.
Well, Leah Rose loves to go bowling. This may be one of the things that she may not manage for a very long time.
Today, we went to a birthday party at the bowling alley. This has been our 3rd trip this year so far. I was watching all the other 4, 5 and 6 year olds pick up their bowling balls and throw them down the alley. Leah can pick it up, but her fingers just can’t fit in the holes and grip the bowling ball.
About halfway through the game, I was picking it up and carrying it to the line for her. She also doesn’t have any power to get it down the alley, so I was helping her push it. When we have been before, it’s just been us and not very crowded. I usually let her push it by herself and it sloooooowly rolls down the alley. Today, just after we started playing, her ball just stopped rolling, right in the middle of the alley. Not thinking, I hopped up on the little sideline thing and walked down to push it along towards the pins. Big mistake, I don’t do very well in a balancing act. However, I did not fall, thank goodness. But I did see two other parents in our goup go down chasing little ones trying to run out down the alley. OUCH!
So from that point on, I helped her push it.
I know nothing about bowling. I probably won’t ever know much about bowling. I probably won’t ever score over 65. But, who knows? Leah may be playing in tournaments one day, and be a bowling star.
We are celebrating Exceptional Children’s Week this week and I guess it was appropriate that the Little League had tryouts last Saturday for the Challenger Division. I don’t know if they timed it that way or not, but it was a good kick-off for us. There was a luncheon/reception for the teachers on Monday. I attended the Parent’s Luncheon on Wednesday. I was the only one who showed up, besides the Parent Mentor. She thought it was a little odd since 6 or 7 parents showed up last year. There were quite a few parents at the Parent Partnership Monthly Meeting on Tuesday night, so she expected a few more to show up. Oh well, we had a nice lunch anyway.
Last night, we went to a Wild West Dance and we were told to dress-up because there would be a contest. I thought this would be a perfect opportunity for Leah to wear the cowgirl outfit I made for her for Halloween 2008. First, I want to share a little background on the outfit I made… I had a red and black one when I was about 5 years old.
I was such a cutie pie! I loved it when my daddy took pictures of me. So, anyway, here is the one I made for Leah Rose
I think she looks so adorable, and she’s got the pose to go with it.
I really thought Leah would have a lot of competition for the contest, but it turns out there were only 2 other girls that dressed up.
and the winner is….
Leah, the Best Dressed Girl.
She had the best time dancing on the stage.
I thought it was so cute that the little boy was trying his best to keep up with Leah. This is where she stayed the whole time we were there, and had a blast. I think at the end of this video, where she is wandering around looking lost? I think she was looking for the speaker. She couldn’t tell where the music was coming from.
We had our picture taken with John Wayne.
I usually don’t share pictures of myself, but since Leah took this picture, I had to post it.
A good time was had by all. The PTO sold hot dogs, chips, drinks, and snacks. I was grateful because that was the only supper I was going to get last night. It was pretty tasty.
I’m going to have to keep an eye out for the paper because there should be an article about the dance, and the winners!
If you want to see the rest of the photos, click here ==>> Photo Album
Or if you want to see the slide show, click here ==>> Slide Show
Oh, and Horsey, I think he had a good time too.
This post has been linked up to To Be Thode’s Saturday Sound Off.
I am considering starting a new blog, an adventure for Leah Rose and I.
Leah is such a girlie-girl and she loves all things pink. She can chatter on for hours about the color pink, and all the things she loves that are pink. She has pink clothes, pink blankets, a pink bed, pink chairs and tables, even a pink TV.
Leah also loves to take pictures. I’ve started letting her use my digital camera and sometimes her photos come out better than mine (I am NOT Jealous).
So, I’m thinking of starting a blog called “A Pink a Day, Girlie Girls in love with Pink”. Every day we would post photos of something pink… a photo she takes, and a photo I take.
My child is so aware of my social networking… she understands email, and texting, and my blogging… 6 years old, and she is already telling me, “send so-and-so a text to let them know…” It won’t be long before she knows more about computers and the internet than I do. I’m sure she already knows more about baseball than I do.
We are trying all kinds of new things lately.
- Little League Tryouts
- A Postcard exchange with some of the children of my Facebook friends
- I’ve made inquiries to get her started in Daisy Scouts.
- I volunteered to become the Preschool Plus Playgroup for the local MOMS Club. This month we are meeting at our house and I’m planning on a craft activity… Chick Hatching Egg Carton Craft
Tonight we are going to a Wild West Dance, Friday we are going to Jumpin’ Jax, and Saturday a birthday party at the bowling alley. Whew, what a little social butterfly she is!