We all are runners in a race. It's called life. Some get a nice easy path. The rest of us get hurdles and pits. But soon you learn to jump the hurdles and stay clear of the pits.
Cary and I have successfully cleared several hurdles and pits this past week. She does not have Hepatitis B or C. Bio mom has C. Cary's body stays protected from it and I am glad. We also had a good endocrine report. Cary is now 18 pounds and 4 ounces of pudgy. She is also gaining height. If her thyroid and sodium levels come back balanced we are in the clear for six months.
This means that her brain is starting to do something remarkable. It is healing and remolding. For a Montessori teacher, this is all in a day's work. For the medical profession it is astonishing. I was told that they didn't expect her to make it this far. I said, "You haven't seen anything yet."
My PT told me that what I want is what Cary wants. I need to impose my will on her. So you'd better believe that I am imposing it with all my strength. I want Cary to sit, crawl, walk, and talk. I won't take no for an answer! I have stopped believing the worst and focus on the child I see her becoming.
Don't get me wrong. We do have pits and hurdles ahead. In a week we go see the GI doctor. It is just a check up, but I always have a bit of nerves about what may happen. In two weeks we go to court. Yes court.
I have to do something. I have to look into the eye's of Cary's biological parents and watch them surrender their rights. I have long ago forgiven Marvin's bio family. I am still working on Cary's. What they did was horrific. How can you not care? How can you look at this child and not love her? How can you choose drugs? How can you rot in jail? How do you sleep with yourself? I can't claim sainthood, but I just don't get it. Cary's social worker anticipates that the parents are going to sign over rights without a quibble. I hope so. But we are required to be there and we will be. I want to see them. It is like some sick fascination. I hope seeing them will be a cleansing process and I can move on.
So I continue to run. The goal is far away and I may still trip or fall in pits, but I will brush myself off and move forward. I will win.
My Family
Thursday, January 10, 2013
Thursday, January 3, 2013
A Time to Mourn A Time to Dance
First of all, Happy New Year!!! We, being the party animals we are, fell asleep at 9:30. That's what happens when you have two little children. On the bright side, I was up at the crack of dawn on New Years Day giving Cary extra kisses. She had no idea what was going on, but enjoyed her yogurt without any trouble. Marvin got up and demanded TV. I told him the TV got a break on New Year's Day. You can imagine how well that went over.
Anyway, it has been a bit bumpy but life is settling down to its usual rhythms and routines. I was able to take some time and reflect on the year and the roller coaster ride called adoption. There have been many times when I wanted to scream, shout, and throw up. There have also been some amazing highs. I have set aside some goals for next year as well. Resolutions you keep for about two weeks while you walk around pretending to be a martyr. "Oh, I am on my new diet and I only sip water and eat celery." By the time you have made it past two weeks, you are wolfing down ho hos like your life depends on it and you cleverly change the subject or pretend to loose a contact lens when someone asks you how it is going. I like goals. You don't have to eat celery unless you really want to and it is something you strive to be better at. No one gets mad if you loose your path and did I mention no celery?
Goal #1- To mourn when I need to. I have a bad habit. I shove it all down, pretend it is O.K. and then when someone leaves to toilet seat up, I loose it (after I fall in as I didn't look). So when Cary has bad news at the doctor, when I get upset because the therapist doesn't show up again, or when I look at "normal" kids and realize that mine won't ever be like that I will be upset. Not forever, but enough to get it out of my system. My PT told me that parents who adopt don't grieve over their children's handicaps like a biological parent would. We accept our child's limits and strive to improve them. She is wrong. I grieve. I grieve in ways that most people won't understand unless they have a differently abled child. But after the grief their is always the joy that these children bring. Cary and Marvin are blessings. My blessings. They give me a new perspective on life, make me laugh, frustrate me, and above all inspire me to be a better person.
Goal #2- Get a life! Yes, I have no life. I don't go out and want to go to bed at 9 every night. Can you say looser ville? Anyway, I don't need a hot social scene, but some grown up time would be much appreciated. I also need to find people to bully me into doing it. My husband is great at guilting me into it. I feel like a rotten parent if I leave my kids for a nanosecond, but after I do I feel much better. I did not realize how much my job fulfilled my social outlet until I became a stay at home mom. So now it is up to me to find new ways to meet people. I am going to join a mommy group and force myself to meet new people. I am also going to try a bit harder to get out with the people I do know.
Goal #3- Get Creative. I have about a zillion scrapbook supplies gathering dust. I love to scrapbook, but lately find myself avoiding it as I am too tired, too busy, too something. There is always a reason, but never a good one. I am happiest when I am creating so it's time to break out the Cricut and bust the dust. I will make time. I have albums in bad need of updating and attention, cards I can be making, and all sorts of projects. I have ideas brewing and projects that I am itching to try. Plus having a way to express myself, just makes me a happier person.
I think I am off to a pretty good start. These goals are obtainable. They are doable. I think they will go a long way to help improve things. They won't bring world peace, but they will bring me towards peace in my world.
Anyway, it has been a bit bumpy but life is settling down to its usual rhythms and routines. I was able to take some time and reflect on the year and the roller coaster ride called adoption. There have been many times when I wanted to scream, shout, and throw up. There have also been some amazing highs. I have set aside some goals for next year as well. Resolutions you keep for about two weeks while you walk around pretending to be a martyr. "Oh, I am on my new diet and I only sip water and eat celery." By the time you have made it past two weeks, you are wolfing down ho hos like your life depends on it and you cleverly change the subject or pretend to loose a contact lens when someone asks you how it is going. I like goals. You don't have to eat celery unless you really want to and it is something you strive to be better at. No one gets mad if you loose your path and did I mention no celery?
Goal #1- To mourn when I need to. I have a bad habit. I shove it all down, pretend it is O.K. and then when someone leaves to toilet seat up, I loose it (after I fall in as I didn't look). So when Cary has bad news at the doctor, when I get upset because the therapist doesn't show up again, or when I look at "normal" kids and realize that mine won't ever be like that I will be upset. Not forever, but enough to get it out of my system. My PT told me that parents who adopt don't grieve over their children's handicaps like a biological parent would. We accept our child's limits and strive to improve them. She is wrong. I grieve. I grieve in ways that most people won't understand unless they have a differently abled child. But after the grief their is always the joy that these children bring. Cary and Marvin are blessings. My blessings. They give me a new perspective on life, make me laugh, frustrate me, and above all inspire me to be a better person.
Goal #2- Get a life! Yes, I have no life. I don't go out and want to go to bed at 9 every night. Can you say looser ville? Anyway, I don't need a hot social scene, but some grown up time would be much appreciated. I also need to find people to bully me into doing it. My husband is great at guilting me into it. I feel like a rotten parent if I leave my kids for a nanosecond, but after I do I feel much better. I did not realize how much my job fulfilled my social outlet until I became a stay at home mom. So now it is up to me to find new ways to meet people. I am going to join a mommy group and force myself to meet new people. I am also going to try a bit harder to get out with the people I do know.
Goal #3- Get Creative. I have about a zillion scrapbook supplies gathering dust. I love to scrapbook, but lately find myself avoiding it as I am too tired, too busy, too something. There is always a reason, but never a good one. I am happiest when I am creating so it's time to break out the Cricut and bust the dust. I will make time. I have albums in bad need of updating and attention, cards I can be making, and all sorts of projects. I have ideas brewing and projects that I am itching to try. Plus having a way to express myself, just makes me a happier person.
I think I am off to a pretty good start. These goals are obtainable. They are doable. I think they will go a long way to help improve things. They won't bring world peace, but they will bring me towards peace in my world.
Thursday, December 27, 2012
Rough Few Days
It has really been a bumpy ride lately. I don't even know where to start on this one.
I guess I should start with a fellow special needs mom. She blogs, like may of us do to keep sane and make sense of the world around her. She is awesome. I love what she writes and it gives me hope. Recently she wrote something that made people very upset. It wasn't a big thing, just a little thing in passing. But it got very blown out of proportion and as a result she had to shut down her blog. I wrote to her expressing my support. I told her that I even once wrote and questioned some choices my old church was making. It did have some fallout, but I firmly stand by what I wrote. People don't always like to have mirrors held up to their faces. The truth can sting. I hope that she finds the strength to blog again and not let others force their ugly thoughts on her or her family.
Then we celebrated Cary's first Christmas. I was so excited! The flu has been working its magic in VA and some of my family was recovering from it. Cary's BPD doctor was very nervous about flu season as the shot has not protected like they thought it would. I was given strict instructions on keeping her away from places, things, and people. To make a long story short even though my family was well on the mend Cary was not allowed to be around them for Christmas. Cary and I stayed home while Shannon and Marvin went and had a nice family dinner and presents. I think I cried most of the day. I felt so mad and cheated. Cary, on the other hand, could have cared less and played with her new bumpy ball and dancing piggy all day. It was good that at least one of us felt festive. I did finally pull it together. Thanks to some caring friends calling in and a big slice of apple pie and reflection on what the day is really about I ended up enjoying time with my daughter. Plus my rocking mother in law sent home a ton of goodies!
Yesterday we went to MCV for an EEG. I had scheduled that and a neurology appointment all in one day. After dropping off Marvin and Paw paws house and picking up my friend Heidi, we were off. Cary was treated to a facial scrub and then had so many wires hooked up to her she could have been the bride of Frankenstein. Cary slept through the whole thing. Thank heavens. We were in there for about five minutes when the nurse excused herself. Heidi told me that that usually is not a good thing. She came back and was happy to hear that we saw the doctor the same day. So then I started to worry. Heidi told me that it probably was a little thing. So I relaxed some and we had lunch and went to the doctor.
It turns out it wasn't so little. Dr. A told us that they expected Cary to have abnormal brain scans. She had massive brain bleeds at birth and hydrocephalus. What they didn't expect was so much abnormalities. Cary is having many preseizural brain waves. Lots of them. So many that we have to go back in a few weeks for a 24 hour EEG. Then she will go on medicine. I knew that she may have to do this, but she is so young and little. I was hoping to wait until she was 3 or 7 or 12. I felt like I had been hit by a ton of bricks. Again. We also discussed her ability to walk and talk due to all of her brain damage. Dr. A was hopeful that she would be able to do some things but also realistic on the situation at hand. Again, feeling like I was being hit by bricks. It was hard. I like Dr. A. She is awesome. But my daughter is my world. And it is hard to hear about limitations and brain malfunctions. She will also soon bear a new label. When she is 2 she will be classified as having Cerebral Palsy. So after dropping Heidi off I cried all the way home. Cary probably thinks mommy is some sort of basket case at this point, because she was conveniently ignoring me.
So I cried, mourned, and raged against it all. Then I did some digging. CP is not a death sentence. It is brain damage, which Cary has. It also is more common in boys. Everything I have put my hands on so far and read boils down to the same thing. It doesn't get worse. It simply is. Also, the more a person can do for themselves, the better life they had. Aggressive therapies and early interventions are the key. So me sitting around and crying is not going to do a fat lot of good. Yes, it releases emotions, but it does not help my child. So what happens next? We step up her therapy. It is important for me to get vision to show up and be on board on this. Shannon is also pitching in more and not treating her like she is glass. I have also been working on getting a Montessori curriculum together for Cary. By immersing her in a language rich environment with a heavy focus on Sensorial as well as simple Practical Life skills I am on my way to giving my daughter the education she is entitled to. After all, I am a teacher. The stakes are so much higher this time around though. Every gain Cary can make is a step forward to a better life for her.
So I will continue to fight, speak out, and bring out the best in my daughter. She is amazing, funny, and my little hero. Together we can conquer the world!
I guess I should start with a fellow special needs mom. She blogs, like may of us do to keep sane and make sense of the world around her. She is awesome. I love what she writes and it gives me hope. Recently she wrote something that made people very upset. It wasn't a big thing, just a little thing in passing. But it got very blown out of proportion and as a result she had to shut down her blog. I wrote to her expressing my support. I told her that I even once wrote and questioned some choices my old church was making. It did have some fallout, but I firmly stand by what I wrote. People don't always like to have mirrors held up to their faces. The truth can sting. I hope that she finds the strength to blog again and not let others force their ugly thoughts on her or her family.
Then we celebrated Cary's first Christmas. I was so excited! The flu has been working its magic in VA and some of my family was recovering from it. Cary's BPD doctor was very nervous about flu season as the shot has not protected like they thought it would. I was given strict instructions on keeping her away from places, things, and people. To make a long story short even though my family was well on the mend Cary was not allowed to be around them for Christmas. Cary and I stayed home while Shannon and Marvin went and had a nice family dinner and presents. I think I cried most of the day. I felt so mad and cheated. Cary, on the other hand, could have cared less and played with her new bumpy ball and dancing piggy all day. It was good that at least one of us felt festive. I did finally pull it together. Thanks to some caring friends calling in and a big slice of apple pie and reflection on what the day is really about I ended up enjoying time with my daughter. Plus my rocking mother in law sent home a ton of goodies!
Yesterday we went to MCV for an EEG. I had scheduled that and a neurology appointment all in one day. After dropping off Marvin and Paw paws house and picking up my friend Heidi, we were off. Cary was treated to a facial scrub and then had so many wires hooked up to her she could have been the bride of Frankenstein. Cary slept through the whole thing. Thank heavens. We were in there for about five minutes when the nurse excused herself. Heidi told me that that usually is not a good thing. She came back and was happy to hear that we saw the doctor the same day. So then I started to worry. Heidi told me that it probably was a little thing. So I relaxed some and we had lunch and went to the doctor.
It turns out it wasn't so little. Dr. A told us that they expected Cary to have abnormal brain scans. She had massive brain bleeds at birth and hydrocephalus. What they didn't expect was so much abnormalities. Cary is having many preseizural brain waves. Lots of them. So many that we have to go back in a few weeks for a 24 hour EEG. Then she will go on medicine. I knew that she may have to do this, but she is so young and little. I was hoping to wait until she was 3 or 7 or 12. I felt like I had been hit by a ton of bricks. Again. We also discussed her ability to walk and talk due to all of her brain damage. Dr. A was hopeful that she would be able to do some things but also realistic on the situation at hand. Again, feeling like I was being hit by bricks. It was hard. I like Dr. A. She is awesome. But my daughter is my world. And it is hard to hear about limitations and brain malfunctions. She will also soon bear a new label. When she is 2 she will be classified as having Cerebral Palsy. So after dropping Heidi off I cried all the way home. Cary probably thinks mommy is some sort of basket case at this point, because she was conveniently ignoring me.
So I cried, mourned, and raged against it all. Then I did some digging. CP is not a death sentence. It is brain damage, which Cary has. It also is more common in boys. Everything I have put my hands on so far and read boils down to the same thing. It doesn't get worse. It simply is. Also, the more a person can do for themselves, the better life they had. Aggressive therapies and early interventions are the key. So me sitting around and crying is not going to do a fat lot of good. Yes, it releases emotions, but it does not help my child. So what happens next? We step up her therapy. It is important for me to get vision to show up and be on board on this. Shannon is also pitching in more and not treating her like she is glass. I have also been working on getting a Montessori curriculum together for Cary. By immersing her in a language rich environment with a heavy focus on Sensorial as well as simple Practical Life skills I am on my way to giving my daughter the education she is entitled to. After all, I am a teacher. The stakes are so much higher this time around though. Every gain Cary can make is a step forward to a better life for her.
So I will continue to fight, speak out, and bring out the best in my daughter. She is amazing, funny, and my little hero. Together we can conquer the world!
Thursday, December 20, 2012
We're still here!
Really, I haven't gone that far. I was all ready to post last Friday the glowing reports from the Virginia Institute of the Blind and Deaf. I was ready to laugh over how much fun I had with my mother in law shopping and just having fun.
Then I got home and heard about CT and it just didn't seem right to have a really happy post. So I took some time off and grieved with the families. Then my son got sick, and my husband got the flu. I got some crud. Cary has remained healthy so far. I am thankful I hope she stays well.
So first things first. Cary's vision therapist managed to get out of coming once again. I was ticked off heading down to the Virginia Institute of the Blind and Deaf. I was greeted warmly, they listened to my concerns and began basic testing. After a good three hours of testing the beginning results are encouraging. Cary can hear sounds. That is the good news. The bad news is that she needs an ABR. This will test her ability to understand what she hears. Often cortical blindness and cortical deafness goes hand and hand. We go back the 11th of January. It will be two or three more visits before any "real" results can be given, but so far things are looking good. It was nice to hear positive results. Plus I fell in love with the school. It was my dream school for Cary. But Staunton is over an hour away. Sigh. Time will have to tell.
So after Marvin was sick Sunday-Tuesday he was able to return. I was glad. It was his Christmas week. He had a whole week of testing before so the poor kid needed some fun. I will have to say, I love classroom parties. I have worked at school that have allowed them and schools that don't. I will also have to say in my humble opinion that kids who are allowed to have time to celebrate have an outlet for all that extra holiday energy instead of having to bottle it up and pretend it is not there. This has been so helpful for Marvin. And mama:). But that is just me. I also got some photos of the kids. Marvin insisted that Cary Lynn come along and I was happy to bring her.
Then I got home and heard about CT and it just didn't seem right to have a really happy post. So I took some time off and grieved with the families. Then my son got sick, and my husband got the flu. I got some crud. Cary has remained healthy so far. I am thankful I hope she stays well.
So first things first. Cary's vision therapist managed to get out of coming once again. I was ticked off heading down to the Virginia Institute of the Blind and Deaf. I was greeted warmly, they listened to my concerns and began basic testing. After a good three hours of testing the beginning results are encouraging. Cary can hear sounds. That is the good news. The bad news is that she needs an ABR. This will test her ability to understand what she hears. Often cortical blindness and cortical deafness goes hand and hand. We go back the 11th of January. It will be two or three more visits before any "real" results can be given, but so far things are looking good. It was nice to hear positive results. Plus I fell in love with the school. It was my dream school for Cary. But Staunton is over an hour away. Sigh. Time will have to tell.
So after Marvin was sick Sunday-Tuesday he was able to return. I was glad. It was his Christmas week. He had a whole week of testing before so the poor kid needed some fun. I will have to say, I love classroom parties. I have worked at school that have allowed them and schools that don't. I will also have to say in my humble opinion that kids who are allowed to have time to celebrate have an outlet for all that extra holiday energy instead of having to bottle it up and pretend it is not there. This has been so helpful for Marvin. And mama:). But that is just me. I also got some photos of the kids. Marvin insisted that Cary Lynn come along and I was happy to bring her.
Marvin playing musical chairs. Interesting to note that musical chairs is not a commonly played game any more.
Marvin decorated a gingerbread house. He had a blast making and eating it!
Cary was also allowed to partake in the icing portion of the fun (yes, I know that it is not the best choice for her to eat, but the squeals and smiles made it all worth while).
So all in all it has been a very awesome start to Christmas despite illness. As we get closer to Christmas I am excited to celebrate with my little ones and look forward to the fun and joy of this holiday season!
Merry Christmas everyone!!
Friday, December 7, 2012
Beginning to see the light
It has been super busy around here (translation: I would kill for a dull day). Christmas has exploded around our home. The tree, lights, and various decoration.
For a child with visual impairments, I often wonder what Cary sees. I put up the tree and lights and held her up to it. She turned away and cried. Not good. She has accepted the tree since then and seems to enjoy the jingle bells I have placed around her play areas.
Marvin, on the other hand, loves it all! He enjoys "helping" me with the decorations and generally getting in the way. But he is so enthusiastic about it all. It is hard to stay mad at him.
It has also been a rather frustrating couple of weeks in the vision department. I won services for Cary weekly. I felt that this was and is what she needs. Vision therapy connects her to her world. I thought that I would have weekly services until she turns three. Oh boy, was I wrong. According to her vision therapist we are "trying out" this for a month. In other words, she does not want to make the trek out here weekly. She is a great person, but complains about coming out and insists that I am doing "just fine". It is like the proverbial adult patting a child on the head and telling them to scoot along. Plus, she "double booked" this week and "was unable to fit me in her schedule this week". Plus there is Christmas break coming up and she "won't be available."
So I took some deep breaths, hung up the phone with her, and proceeded to have a mega screaming fit. Luckily, Cary was asleep in her room with the door closed. After I yelled and and raged I began to think about what I could do to help Cary. After all, yelling is NOT going to help her vision and really doesn't do much except wreck my vocal chords. So then I thought. I channeled my old boss and remembered our parent ed night on executive functioning. I remembered her and my co-teacher asking what we wanted our children to be in the future.
So I made a list. I visualized Cary through the years and my goals, hopes, and dreams for her. My biggest hope, dream, and goals all align with her sight. So then I went to step two. If my vision person isn't willing to hear me out and support us what do I need to do next. I began digging through all of notes and lists I had. I ran across the Virginia Institute of the Deaf and Blind. Long ago I had e-mailed them but had never heard back from them. They have programs for families with blind children. I picked up the phone, said a quick prayer, and called.
They answered! I talked with a wonderful woman who actually listened to me and heard what I had to say. I get to go to Stanton, VA next week and there they will give Cary a hearing screening. What you say? Hearing? Yes. Cary apparently flunked her newborn hearing test and there never was a follow up given. Well there was supposed to be, but the previous foster parent never took her. Surprise, surprise. So anyway, to get evaluated for the program I am going in for the hearing screening. Then I will get vision support as well. Sometimes the big changes come about with small steps. But they have to be on the right path. I feel like I am starting to find that path.
I will go. I will tour the school, the pre-school, and meet the people who are willing to help me help my child. They did tell me to let my social worker and Infant Toddler know as a courtesy. I told the social worker and she said go for it. Infant Toddler never returns my messages so I left them one and frankly, don't expect to hear from them any time soon. I will also inform Cary's therapy team that we are doing this. I know speech and PT will be for it. I am sure vision will not be pleased, but I really don't care right now. My priority is my daughter. Not vision's feelings on the matter. My children are going to get what they need. It is their right. I will be my daughter's voice until she is able to be her own voice. One of the greatest gifts I can give my children is the power to advocate for their needs. My children are survivors and strong. I am blessed to be their mama.
For a child with visual impairments, I often wonder what Cary sees. I put up the tree and lights and held her up to it. She turned away and cried. Not good. She has accepted the tree since then and seems to enjoy the jingle bells I have placed around her play areas.
Marvin, on the other hand, loves it all! He enjoys "helping" me with the decorations and generally getting in the way. But he is so enthusiastic about it all. It is hard to stay mad at him.
It has also been a rather frustrating couple of weeks in the vision department. I won services for Cary weekly. I felt that this was and is what she needs. Vision therapy connects her to her world. I thought that I would have weekly services until she turns three. Oh boy, was I wrong. According to her vision therapist we are "trying out" this for a month. In other words, she does not want to make the trek out here weekly. She is a great person, but complains about coming out and insists that I am doing "just fine". It is like the proverbial adult patting a child on the head and telling them to scoot along. Plus, she "double booked" this week and "was unable to fit me in her schedule this week". Plus there is Christmas break coming up and she "won't be available."
So I took some deep breaths, hung up the phone with her, and proceeded to have a mega screaming fit. Luckily, Cary was asleep in her room with the door closed. After I yelled and and raged I began to think about what I could do to help Cary. After all, yelling is NOT going to help her vision and really doesn't do much except wreck my vocal chords. So then I thought. I channeled my old boss and remembered our parent ed night on executive functioning. I remembered her and my co-teacher asking what we wanted our children to be in the future.
So I made a list. I visualized Cary through the years and my goals, hopes, and dreams for her. My biggest hope, dream, and goals all align with her sight. So then I went to step two. If my vision person isn't willing to hear me out and support us what do I need to do next. I began digging through all of notes and lists I had. I ran across the Virginia Institute of the Deaf and Blind. Long ago I had e-mailed them but had never heard back from them. They have programs for families with blind children. I picked up the phone, said a quick prayer, and called.
They answered! I talked with a wonderful woman who actually listened to me and heard what I had to say. I get to go to Stanton, VA next week and there they will give Cary a hearing screening. What you say? Hearing? Yes. Cary apparently flunked her newborn hearing test and there never was a follow up given. Well there was supposed to be, but the previous foster parent never took her. Surprise, surprise. So anyway, to get evaluated for the program I am going in for the hearing screening. Then I will get vision support as well. Sometimes the big changes come about with small steps. But they have to be on the right path. I feel like I am starting to find that path.
I will go. I will tour the school, the pre-school, and meet the people who are willing to help me help my child. They did tell me to let my social worker and Infant Toddler know as a courtesy. I told the social worker and she said go for it. Infant Toddler never returns my messages so I left them one and frankly, don't expect to hear from them any time soon. I will also inform Cary's therapy team that we are doing this. I know speech and PT will be for it. I am sure vision will not be pleased, but I really don't care right now. My priority is my daughter. Not vision's feelings on the matter. My children are going to get what they need. It is their right. I will be my daughter's voice until she is able to be her own voice. One of the greatest gifts I can give my children is the power to advocate for their needs. My children are survivors and strong. I am blessed to be their mama.
Friday, November 30, 2012
My feisty daughter
We are not a family of meek people around here. I was born stubborn and continue to be stubborn. I tend to be a bulldozer and just keep going until I wear people out or plow them down most of the time. When I married and moved down south some of my friends predicted that I would be walking around like some bad motion picture experience moaning and wearing hoopskirts and fainting helplessly. The only thing that I have picked up living in the south is a little finesse to my bulldozing. I still get what I want most times, I just learned a little more tact and charm while doing it:).
Shannon and Marvin tend to be very strong willed and feisty as well. Marvin has also picked up charm as well and tends to charm his way out of life. Very lethal, I assure you.
When Cary came to live with us I was a bit afraid for her. She seemed so docile and easy going. I figured she may as well put a target on her back and be done with it. I worried to no end about how she would find her voice with the three of us around here.
My first small glimmer of hope was when we were in the hospital and the PT and OTtortured her in the name of making small children cry, I mean, showed us muscle stretching exercises. She resisted with all her might, but because she was so small and sick, it wasn't much of a fight.
When we came home she was still pretty docile. Then we started Speech, Physical, and Vision Therapy. It started with speech when her therapist tried to get her to use a chew tube to strengthen her jaw. Cary clamped her lips down and glared. "My," clucked Ms. B, "we certainly have a little strong will there don't we?" It also began to bleed over into PT. Cary went from actively screaming like she was being killed to doing what ever she could to fight back against injustice. And actively screaming like she was being killed.
Cary is coming into her own. I was really worried about nothing. She has found her voice. And it is a loud one. She lets people know what is on her mind and will give you many pieces of it as well.
Shannon and Marvin tend to be very strong willed and feisty as well. Marvin has also picked up charm as well and tends to charm his way out of life. Very lethal, I assure you.
When Cary came to live with us I was a bit afraid for her. She seemed so docile and easy going. I figured she may as well put a target on her back and be done with it. I worried to no end about how she would find her voice with the three of us around here.
My first small glimmer of hope was when we were in the hospital and the PT and OT
When we came home she was still pretty docile. Then we started Speech, Physical, and Vision Therapy. It started with speech when her therapist tried to get her to use a chew tube to strengthen her jaw. Cary clamped her lips down and glared. "My," clucked Ms. B, "we certainly have a little strong will there don't we?" It also began to bleed over into PT. Cary went from actively screaming like she was being killed to doing what ever she could to fight back against injustice. And actively screaming like she was being killed.
Cary is coming into her own. I was really worried about nothing. She has found her voice. And it is a loud one. She lets people know what is on her mind and will give you many pieces of it as well.
As you can see in the picture above, she is telling me what she thinks about having to wait for her food for more than two seconds. It is not just the crying. I am convinced that she bites on purpose. She bit her GI doctor the other day. Well, if you shoved a thermometer up my butt, I would probably bite you as well.
Yes, Cary has found her voice. I was really worried for nothing. I am glad. It means that she won't walk through life letting people push her around. Or shove thermometers up her butt. She is going to be a strong assertive person and I am thrilled. Slightly deaf from all her screaming, but thrilled none the less. After all, she has to be strong to survive in the world and from her brother taking her toys away from her. I am excited to see what happens next in her development and proud that she has joined the ranks of a very strong willed family!
Thursday, November 22, 2012
Updates and Such
Wow,
I have been gone a little while from my blog. I did do a blog over at Hopeful Parents, my blog away from home, but it has still been a while since I have sat down here. I have been thinking about posts and I have a lot to share, but I needed a little time to breathe and regroup. I was pretty down at the last post as I was having a hard go of it. It isn't always easy having special needs kids, but it is also a blessing. So to catch up on what has been going on:
Doctors: Cary is now moving out of the specialist a day phase and we are moving into maintenance. The doctors are pleased with her progress. They point out that she has some chunky thighs (I guess this is good. Must be a medical thing, they all seem really pleased with it.) and is growing hair (once again real pleased). Our last big appointments were GI and feeding clinic. Both said that she is 100% perfect weight for her size. She is getting taller and eats basic solids. She now sucks down food like it is going out of style most days and her NG tube is all gone. She is on the adjusted WHO growth charts and is at proper 10 month size on these charts in the lower end. That is her adjusted age, 10 months. These charts will follow her till 3 or so and hopefully, she can graduate to the unadjusted charts by then.
Primary Doctors: Unfortunately, Cary has joined the disease of the month club. September was the stomach virus that put us in the hospital, October was a bacterial infection, and November is Strep Throat. The fun never stops. My sister-in-law warned me she is probably going to catch everything. She is probably right. Cary has been in a sterile hospital for a long time and between doctor visits, a brother in kindergarten, and being in the real world, he poor immune system is probably being pelted. She responds well to antibiotics and is on the mend, but I hope she stays healthy for more than a couple of weeks!
PT, Speech, Vision Therapies: I met with the director of Infant and Toddler Connection for a review of Cary's IFSP plan. Cary had some lofty goals assigned to her. She missed over half of them. I convinced her to modify most of them as some were just very unrealistic expectations at this time in Cary's life. I mean really, get dressed without crying at all? Come on. What baby doesn't squawk a little over getting clothed. So now we have more realistic goals in mind, like sitting and rolling over. I was also able to get vision therapy weekly. Before we had bi-weekly and vision is what she needs the most. Her therapist balked at coming weekly and tried to tell me I was doing a cracker jack job. I yanked rank and insisted that in order to tie together everything vision was a key element. I won. I do feel a tiny bit bad because vision travels over 2 hours to get to me, but I did offer to go to her and that was refused so what else could I do? Cary continues to make progress, but on her terms. She is very stubborn and when she is done she is done. I feel like sitting would happen a lot quicker if she was more cooperative, but it is what it is. And I am stubborn too so I admire that trait in her.
Future Goals: They started talking school with me for her, but at this time Shannon and I are keeping her home for one more year. There is a really great school for the blind that I am looking at for when she turns 3. Infant Connection was horrified and talked about "inclusion" and what a big deal that is. I asked what they offered here for her. While she would go to a "special needs classroom". I guess their idea of inclusion is a classroom segregated with a garden variety of special needs. O.K. I may look and act like I fell off the turnip truck at times, but if she can't go to regular school why can't I cherry pick what would be best for her? Anyway, I have a year and a half before I make that choice so I am not going to stew over it now. I don't know what she will or won't be capable of. Right now I am schooling her at home with the Montessori method and Reggio Emilio methods she is doing really well with it.
Marvin: Marvin has gotten over his Halloween issues and is doing really well at school. He surprises me with how well he has adjusted to public school life. I really wanted him to pine more over his lost Montessori life, but Marvin just looks forward. His teacher rocks and I am really really relieved not to be his teacher anymore. I love my kid, but it was really stressful to be teacher and mommy. Now I am just mommy with a small side of teacher and our relationship is much better that way. Marvin loves his sister and reads to her, sings to her, and plays really well with her. Thankfully, he has stayed pretty healthy this year. He is looking forward to Christmas and raising an animal as part of his 4H work. Yes, we have to get an animal for him. But that is another post.
That is kind of a quick sum up of where we are now! I have lots of other things to talk about, but they can wait for other posts! Happy Thanksgiving!
I have been gone a little while from my blog. I did do a blog over at Hopeful Parents, my blog away from home, but it has still been a while since I have sat down here. I have been thinking about posts and I have a lot to share, but I needed a little time to breathe and regroup. I was pretty down at the last post as I was having a hard go of it. It isn't always easy having special needs kids, but it is also a blessing. So to catch up on what has been going on:
Doctors: Cary is now moving out of the specialist a day phase and we are moving into maintenance. The doctors are pleased with her progress. They point out that she has some chunky thighs (I guess this is good. Must be a medical thing, they all seem really pleased with it.) and is growing hair (once again real pleased). Our last big appointments were GI and feeding clinic. Both said that she is 100% perfect weight for her size. She is getting taller and eats basic solids. She now sucks down food like it is going out of style most days and her NG tube is all gone. She is on the adjusted WHO growth charts and is at proper 10 month size on these charts in the lower end. That is her adjusted age, 10 months. These charts will follow her till 3 or so and hopefully, she can graduate to the unadjusted charts by then.
Primary Doctors: Unfortunately, Cary has joined the disease of the month club. September was the stomach virus that put us in the hospital, October was a bacterial infection, and November is Strep Throat. The fun never stops. My sister-in-law warned me she is probably going to catch everything. She is probably right. Cary has been in a sterile hospital for a long time and between doctor visits, a brother in kindergarten, and being in the real world, he poor immune system is probably being pelted. She responds well to antibiotics and is on the mend, but I hope she stays healthy for more than a couple of weeks!
PT, Speech, Vision Therapies: I met with the director of Infant and Toddler Connection for a review of Cary's IFSP plan. Cary had some lofty goals assigned to her. She missed over half of them. I convinced her to modify most of them as some were just very unrealistic expectations at this time in Cary's life. I mean really, get dressed without crying at all? Come on. What baby doesn't squawk a little over getting clothed. So now we have more realistic goals in mind, like sitting and rolling over. I was also able to get vision therapy weekly. Before we had bi-weekly and vision is what she needs the most. Her therapist balked at coming weekly and tried to tell me I was doing a cracker jack job. I yanked rank and insisted that in order to tie together everything vision was a key element. I won. I do feel a tiny bit bad because vision travels over 2 hours to get to me, but I did offer to go to her and that was refused so what else could I do? Cary continues to make progress, but on her terms. She is very stubborn and when she is done she is done. I feel like sitting would happen a lot quicker if she was more cooperative, but it is what it is. And I am stubborn too so I admire that trait in her.
Future Goals: They started talking school with me for her, but at this time Shannon and I are keeping her home for one more year. There is a really great school for the blind that I am looking at for when she turns 3. Infant Connection was horrified and talked about "inclusion" and what a big deal that is. I asked what they offered here for her. While she would go to a "special needs classroom". I guess their idea of inclusion is a classroom segregated with a garden variety of special needs. O.K. I may look and act like I fell off the turnip truck at times, but if she can't go to regular school why can't I cherry pick what would be best for her? Anyway, I have a year and a half before I make that choice so I am not going to stew over it now. I don't know what she will or won't be capable of. Right now I am schooling her at home with the Montessori method and Reggio Emilio methods she is doing really well with it.
Marvin: Marvin has gotten over his Halloween issues and is doing really well at school. He surprises me with how well he has adjusted to public school life. I really wanted him to pine more over his lost Montessori life, but Marvin just looks forward. His teacher rocks and I am really really relieved not to be his teacher anymore. I love my kid, but it was really stressful to be teacher and mommy. Now I am just mommy with a small side of teacher and our relationship is much better that way. Marvin loves his sister and reads to her, sings to her, and plays really well with her. Thankfully, he has stayed pretty healthy this year. He is looking forward to Christmas and raising an animal as part of his 4H work. Yes, we have to get an animal for him. But that is another post.
That is kind of a quick sum up of where we are now! I have lots of other things to talk about, but they can wait for other posts! Happy Thanksgiving!
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