Back to School

Well today Tru went back to school. She did really good at drop off. When we got there only one other kid was there. Tru kept trying to walk back out of the classroom and screamed a few times. Once a few more kids showed up and she started playing, she was fine. I left and she didn't even notice. When I came to pick her up she didn't even notice me for 10 minutes. The teachers said that she did scream alot though. I am hoping once she gets use to the schedule she will calm down with the screaming. I have noticed that when she is on a real strict schedule she communicates through words and signs better, instead of screaming. She did use three different words today for them at school. She asked for Daddy and Bubbles and answered Yeah to them a couple different times. I think that's great. I hope that she adjust quickly. I guess we'll find out in time.

Spring Break Activities

Even though Tru was only at school two days last week, I felt like I missed out on our daily play activities. So Tru and I went all out for Easter. We dyed eggs, colored pictures of bunnies and eggs, painted pictures of eggs, and then had our own Easter egg hunt. And then we did what she loves the most. We spent most of Saturday outside. I set her up on her Dora Power wheel and let her go. She drove all over the place. It's a good thing that we have lots of open space cause that little power wheel doesn't want to steer at all. I broke out the bubbles and she was in heaven, just giggling and smiling. Technology in Bubbles is the greatest! I had two automatic bubble machines going and the entire yard was full of them. The joy that Tru got out of it just warmed me inside. Such little things can have such a wonderful affect on her. I can only imagine what a difficult time it will be to send her to school next week again. I am trying to reshape her routines so that she will take a nap at school from 1 to 2. She isn't doing to bad. Hopefully the weather will warm up a bit so I can take her to the park this week while she is on break. It was too chilly outside today. When we got back from the store I let Tru out of the car and was going to let her run around for awhile, but I guess it was too chilly for her cause she went and sat on the porch step and waited for me to help her up after I took all the bags in. I do believe that was the first time in a long time that she went inside willingly. Usually she has a screaming fit. I do have some tricks up my sleeves to enable her to have a productive yet fun spring break. She won't be attending therapies, so she's going to have to tolerate sessions of learning with mom.

The First Week of School

Well, the first week of school is over. The first day was so hard for me. I stayed for two hours with her. I felt like I was in the way though, and a couple of the older girls were very disruptive and made me feel like crying. They couldn't understand why she kept yelling, why she was still in diapers, or why she wouldn't play with them. Tru has never really had the opportunity to be around so many other children. The class that Tru is in is composed of 3, 4, & 5 year olds. The older girls really worry me. The little boys take to her though. On the first day, Tru had a fit when entering the room from therapy, a little boy named Kyle helped calm her down by rolling the ball with her and holding her hand. That was when I felt comfortable in leaving. Bless that little boy's heart! When I got there to pick Tru up at 2:30, Kyle asked Tru if she knew his name. She smiled and grabbed his hand. That was when I asked his name. I told him she would need his help to learn and he said, "I know, it's ok". The second day I dropped Tru off and left shortly after, I left and she didn't even notice because she was too busy playing. I ran to Wal-Mart and bought two dozen plastic eggs and stuffed them with chocolate candies. I came back at 12:30 and she was laying down for nap time. She had just fallen asleep, and they had trouble getting her to lay down. I knew that was going to happen. For the last three years she has been taking her nap in a pitch black room by herself. I couldn't blame her for not wanting to rest. After the nap the rest of her class went to the commons area and sang songs to their grandparents. We walked up their and listened to them, it was so cute. Tru ran over to a lady who was wearing a coat just like Scott's. We went back to the room and I sang her a couple rounds of London's bridge before she lost all interest in me and headed for the door. We walked to the dome and helped set up eggs for the egg hunt. She ran all over the gym picking up eggs and looking at them and then tossing them to the side. She walked up to one of her teachers and held her hand. They went to get the rest of the class. On the way back she fell out of line and Kyle caught her hand and helped me get her back to the gym. They had the egg hunt, by this time Tru could of cared less about the eggs. She started to get upset and saying bye bye and clutching on to me. I brought her to the side and calmed her down with some songs and finger plays. The rest of the class and their grandparents did a parachute activity. Tru and I watched from the sidelines, but we went through the movements of going up really high with our arms and coming back down really low. She then kicked back on me and watched the parachutes going up and down and waving all over the place. When I was collecting her Easter basket she got knocked over by another five year old. It was totally an accident, but she fell over top of Tru and stepped on her hand. The little girl was very distressed and said she was sorry, but Tru just wailed hid her face against me. I reassured the little girl it was okay and I knew she didn't mean to hurt her. Tru's right hand is swelled up and she's got two little marks under her left eye. We left shortly after, upon the advice of the head teacher. I got her home and she's been fine. Well, it was a pretty good first week, all in all, I guess. I have already noticed that she is using different sounds in her jabbering and not 'chanting' like she usually does. Next week is spring break, so she'll get a break.

School Conference today

Today Tru and I went up to the school for her case conference. Scottie, my husband, really wanted to come, but had to work. We got to the school around 8:20. I am so amazed with the reaction Tru has to the school. As soon as we pull up in the parking lot, she grins and giggles. Tru was none to pleased when we went into the office though. She wanted to explore the halls and classrooms, not sit in the office and do what HAD to be done. We met with the principal, school pshysocologist, and the general education teacher. They were all very nice and understanding. We went through Tru's goals and the way her therapies would be set up. There will be three therapists, Physical, Occupational, and Speech. They will met with her individually for 30 minutes a week. Except the Speech therapist, she will be meeting with her for 30 minutes almost everyday Tru goes to school. The school day last from 8 o'clock to 2:30. She'll go in Mon. Tues. and Wed. Her first day will be on March 17. I do believe that this is harder on me then her. The people at the school explained all of the goals to me and answered all my questions. The biggest question that I had was could I attend some of her classes too. They said that wasn't a problem. So Monday I am going to go to class with her. I am hoping that by attending Monday with her, I will put my mind at ease. Tuesday there is an Easter party in her class at 1 so I have to be there for that. Wednesday I couldn't go with her if I wanted because I have to be in my Political Science class. I will be dropping her off and picking her up every day though. Maybe next year she can ride the bus. If Mommy can learn to loosen up my grip some. We will see when we get there.

Learning to be an Advocate

When the word advocate is brought up I automatically think of being a Hero. It is hard to be an advocate for a child with special needs. I found it most frustrating to be a good advocate for my daughter because of the range of troubles that children with 1p36 deletion suffer from. I have read all the medical mumbo jumbo and maping about 1p36 deletion. None of that information offered a solution in what I should do next or what I should expect next. I have read stories of children whose disability have taken the very joy out of theirs' and their parents lives. Stories that make my heart ache and tears spill from my eyes for those who aren't nearly as blessed as I. It makes me feel guilty for questioning God about his intentions and acting like such a spoiled brat when I felt like I was being ripped off when it came to the parenting experience. My child is blessed because inspite of her disability she thrives and grows stronger everyday. She has the ability to learn new things and the express herself freely. I didn't always see it like that though. When Tru would scream and have terrible fits I would cower away and try to stay away. I can only imagine what it would be like to not be able to say what I want and need. Tru's patience is a divine gift she has. She patiently tries to tell me what she wants through a series of babbles and whoops. I am trying to empower her with sign language and the use of pictures to help her communicate. And like everything else we do, it is slow to go and small steps of progress. I have heard her say many words, but she won't always use them in proper context. The one I hear the most and will never get tired of hearing is, "Momma". Every once in awhile she'll put two words together and she'll say, " I eat! ". But it's those times when she screams that I feel as though I have failed. It's not so bad as it use to be, but I remember feeling so helpless and like I didn't deserve to be a mother because I couldn't teach her to communicate her feelings. I am normally a happy person, but there would be times when I felt so sad a sorry for myself. It didn't help matters when I went to professionals for advice on what to do to help my daughter. Everyone seemed to take the same position on the matter, "There is no way of telling how severe the effects with be." I was perplexed by the simple fact that they could give what she had a name but couldn't tell me how it would affect her daily life. What made things even harder was I didn't have anyone who could relate to how I felt and the troubles I face. I spent days in front of my computer trying to find others in my situation. When I finally found a few that could relate because their child either had a chromosome deletion or a special need, I was humbled. Words can't even express the relief I had when I realized I wasn't alone. The one thing I can say that all parents have is the ability to advocate for their child. I have done everything humanly possible for my daughter. I have taken her to so many doctors I can't even remember all their names. I have put my entire life on hold to ensure Tru gets what she needs. I have had to put my own personal dreams and life at bay to concentrate on her. I took time off from work and school to ensure she is getting the best help available. That's what being an advocate is all about. You can't be selfish or negative. Guess what people, that's also what being a parent is all about. I still feel bad when I can't understand what Tru wants, and I still want to cry when she struggles with something new. But I don't feel sorry for myself or for my little girl. Being an advocate means to fight for their right to live a meaningful and purposeful life. It has taken me 2 long years to come to that reality and the only thing I am sorry for anymore is the fact that I let my pride get in the way. If you have a child with disabilities I encourge you to seek outside help. I will try my best to provide links to sites that can help. Remember, you're not in this alone, there are many scared and worried parents out there just like you.

A little about me- Phoenix

My name is Phoenix. I am the devoted mother of little girl named Tru Legacy. (We call her Tru for short) She is a very special little girl, not only because she is my sole reason for being, but because she is suffering from 1p36 deletion. I hate to use the word suffering because this little girl does everything except for suffer. It has all been so slow to go and in small successes, but it has been worth every bit of heartache and all those tears. I am such an emotional wreck this week because it is the last week that Tru will be in 1st Steps. For the past year and a half Tru has had the joy of receiving therapy from the 1st Step providers to enhance the quality of her life. Little did I realize how much these people have enhanced my life. Now that Tru will be going into the school system, I feel as though I am losing my control. Since she was born I have done everything humanly possible for this little girl. When she was diagonosed with 1p36 deletion at the age of 1 and a half I was numb, and then mad. I was so pissed when I asked questions and got no answers. "How will it affect emotional?" "Will she be able to communicate?" and a thousand other ones raced through my head and leaped out of my mouth. No one seemed to listen to my concerns about Tru's emotional health. Yes, I understood with this disorder that she would not be a "normal", whatever the hell that means, little girl. I just wanted her to be blessed with the abilitly to love and the knowledge to know that she is loved. So began the battle I fight every day, KEEPING HER SAFE AND IMPROVING THE QUALITY OF HER LIFE. I try to very hard and I have come so very far with her. She has conquered walking independantly finally. I have had very little correspondence with other parents in my situation, but I know such milestones are great for all parents. Children with 1p36 deletion tend to have great difficulty with feeding, but that is not so the case with my little Tru. This child eats everything! Apples, carrots, green beans, cabbage, the list goes on and on. Not only does she eat everything, she will feed it to herself like a big girl. There have been many fights over this. Some days she will sit and scream because she doesn't want to do it herself. Other days she walks over to her chair, says "up" and starts feeding herself without any prompting from me at all. It is on those bad days that I question myself and have to wonder if I am really helping by making her do things for herself. I was always reassured by all four of Tru's therapists that I was indeed doing the right thing by enabling her to be independant. Today we seen Tru's physical and developmental therapist for the last time. It was like saying goodbye to family when they left and there were many tears shed. My tears are not only for the transition Tru is going through, but for the confidants that I am losing. These four wonderful women have come into my home once a week for what has seemed a lifetime and to know that they are never going to be dragging their toys and crafts through my door again really pains me. So it is my hope that this blog with keep us all in touch. And of course I want other parents to know they are not alone. Your child my not suffer from what Tru has, but I am here for you. I know nothing worth doing is easy. It is just hard to adjust sometimes.