**Moving right along**

Well, now that the Thanksgiving holiday is over, the IEP is done, doctor appointments are scheduled for the month of December, Tru's gotten her new full strength glasses, school fund raising is winding down till the spring, & I'm caught up with my online class I can tell everyone what Tru's new Individual Education Plan is.

We are taking a step backwards in hopes that it will make the next few steps forward easier. They are wanting her to FULLY complete tasks, (i.e. putting all the blocks away,helping clean up toys, remain at the activities center the entire time, which is only like 15 minutes.) Verbalizing at least 10 times a day (that means not giving her what she wants until she talks, I'm sure it's going to be fun) Learn to approach other children in a friendly manner, sit and listen to a book for ten minutes, communicate her wants and needs through signs,words, pecs whatever she is more comfortable with (that means everyone else has to be a little more observant, lol, she communicates more then they are giving her credit for you just have to be a tune with her.), walk up five steps, scribble to fill a 1/2 page 50% of the time. She does most of these things for me already, but I have to help her 75% of the time. I know she knows how to do it, it's just a matter of doing it every day on a consistent basis.

Other then that, school is wonderful for her. She participated in a short play. She was a maiden and shook a bottle with rice in it. She had to be cued by her friend and the teacher had to encourage her to stop, but it was adorable. I forgot my camera though, sorry no pictures. She was cute in her plaid skirt, white polyester shirt, and lace apron. Needless to say she was hot & was ready to get out of the thing at the end of the 20 minute performance.

One more note, Tru has been chasing my indoor dog. Lucky, that's the dog, has always been good with her. He is a chihuahua/rat terrier mix, really small. She follows him around the house, either crawls or walks behind him. This is a great thing. She use to just touch him and go about her own merry way, but now she is interested in what he's doing and won't leave him alone. Lucky eats it up though. lol. It's a sight the two of them.

~Have a wonderful day~

Mom's Movie Day

Well, I finally got to go on my first field trip with Tru. I was so worried she wasn't going to enjoy herself, just like the Halloween party we held, but I was so very wrong. She sat through the entire movie except for the last 10-15 minutes. WHAT A SUCCESS! No screaming or yelling, she just sat there eating her popcorn and drinking her sweet tea. If I must say so myself, she was better behaved then some of the other kids. We didn't go with the rest of the class to eat McDonald's though. I took her to the park for awhile and enjoyed it being just me and her. We had the run of the merry-go-round, which delighted her to no end.

I don't think I have mentioned it before on the blog, but we are trying a product called the Miracle Belt. Right now she only wears it for 15-30 minutes a day 5-6 times a day. It really seems to be helping her some, even when she's not wearing it, I can see some improvement in her over all, already & it's only been a couple of days since she started wearing it. Basically what it is, is an extra 2 1/2 pounds centered around her waist in the front. It doesn't bother her when I put it on or take it off, so we're keeping to it.

Another IEP meeting is planned for next week. It'll be interesting to see where Tru is at on the curve now. I'm sure it's still isn't up to the expectations of others, but I'm very proud of her and how far she has come. I praise all accomplishments no matter how big or small. Tru's teacher is the same way, she really is wonderful with her. The entire staff is. Which makes me wonder if I didn't get 'accidentally on purpose' to speak with the review and compliance board, next week, about the services offered at Tru's school.

Which brings us to Tru's glasses. She has adjusted well to them and has another eye appointment next week also. The glasses that she currently wears 95% of the time aren't as strong as they should be, so the doctor may up the strength on the lens. This would be good because Tru came home from school on Thursday with her glasses all scratched up and a scratch on her nose and underneath it. Their wasn't a viable explanation offered & Tru can't tell me so.........hmmmmm.

~Have a Beautiful Day~

ABR TEST RESULTS

Well, we've made yet another "successful" trip to the Riley's Children's Hospital. This successful trip determined that Tru could possible have fluid on her ear drum, which would explain her balance being off, possible headaches, and her all around crappy attitude some of the time. So. . .yet again. I am waiting for another phone call to schedule an appointment with an ENT doctor, to check for fluid & if there is no fluid, get some drops to help clear her ear wax better. (She has such tiny little ear canals.) So we wait to make another trip.

Can you find Tru and her new friend? They're in there somewhere.

Other than that, Tru finally got to meet some kids with the same deletion syndrome as her. She played with them a little, but they weren't as mobile as her, yet. . .they are getting there though., so she mostly played outside with older children. I was so ecstatic to finally get to meet parents that have dealt with the same things as me. I simply couldn't wait for the conference in 2009, so a few of us from the support group, who live close together, got together. IT WAS AWESOME!!!!! Everyone needs a few people who they can relate to. I was told that Tru was an inspiration for one mother, whose son was just starting to walk. . .(could of fooled me cause he was cruising all over and being very adventurous going from one piece of furniture to another. ) It really meant a lot to hear those words. It was like finally being acknowledge for all the hard work and struggles Tru has done and accomplished. I was inspired by another kids' and their communication skills, so verbal and using sooo many signs. (I am so very thankful for meeting such awesome women too.)

Well, let's just make this one long drawn out post to wrap every thing up for the friends & family. Who knows the next time I'll get a chance to post. I'm busy from the time I get up, right into my sleep. (Tre's still not sleeping through the night, uh. . .)

I had my first parent teacher conference & have nothing but positive wonderful things to say about that place. I'm dreading the coming summer when she won't be able to attend & even worse, next year if she doesn't qualify to even go there. AGH.... The teachers are great though & I'm throughly convince that Tru loves her teacher, just as much as me. . .not as much as daddy or either set of her grandparents, but as much as me. Which is wonderful cause she has done wonders working with her. Tru is following simple commands, her behavior is better, awesome really, and she just seems happier more of the time now. I guess I wasn't challenging her enough here at home. I've been told she will go up the slide by herself and go down all by herself. I can't wait to see her do it, along with pedaling her bicycle they rigged up with Velcro. I 'll take pictures. Until the next time I have some peace and quiet. . . . . . . .

~Have a beautiful day~

Visit to Riley's Children's Hospital

Well everything went smoothly on our trip to Riley's this year. No getting lost the the bad parts of town. Tru and Tre' were both well behaved in the back seat on the way up and back. No screaming fits or crying. The visit with the doctor was good. They couldn't get an ABR test scheduled for that day, so I'm waiting for them to call, if they don't call by the end of the week, I'm calling them. I did tell them about my concern about Tru having headache. Since she has gotten her glasses them seem to have subsided, but she still gets them every now and then. I feel so bad for her when they bother her. She just puts her little hand either on the side of her head or on her forehead, depending on what type of headache it is I guess. I wish she could tell me so I knew for sure. The doctor said that they could put her on a daily medication that would stop the headaches all together, but at what cost I wonder. I told her if the headaches every started occurring daily, we would revisit that issue but until then. . . every time she gets a headache, she gets a dose of Tylenol, and I lay with her in a dark room and hold her close to me. At school , the plan is to let her lay down in the isolation room without the lights on and have one of the ladies sit with her & comfort her. If it doesn't improve in an hour or so, I would come and get her. It hasn't come to that though. Like I said the glasses have really improved the symptoms. I'm keeping track of it now & the teacher haven't mentioned anything to me yet, so we carry on. . .

~Have a great Day~

So much is going on, ; )

Tomorrow is picture day for Tru! Her class is the most adorable group EVER! I finally got to go in and volunteer last Wednesday. Tru seemed to be having a blast, so much fun in fact, they I was cramping her style. She didn't want to be around me, she was too busy for mommy. I ended up helping her teacher by making BINGO cards, I'm still not done with them. : b Let's see then there was the Parent Group meeting we went to. Well, Tru didn't go, she could have they did offer babysitting services, which is awesome! It's a really great group, we've only met one time, but I was appointed president, so I'm holding out high hopes for it. They've got a lot of great things planned for the kids that the group helps pay for, so there's gonna be lots of fundraisers we're holding. I interacted with one of the mom's last year, she's the one who nominated me, " I think Tru's mom would be good at it."lol That's what all the kids at the center call me, "Tru's mom" I never do get tired of hearing it though. I've fallen off the beaten path though. . . There are some really great field trips planned. On Oct. 17th they are holding the Daddy's Field Trip. The Daddy's are gonna take them to the Museum in Owensboro. Scottie lee has already put in for the day off, even though there is a possibility that he'll already be off. He wants me to go with them, but I figure it's the Daddy's field trip for a reason, so I hate to say it put I'm not going with them, even though I would really like to, but in all probability I will end up going, The school is having it's fall festival on Oct. 10th, I've volunteered to paint faces : b

Wednesday, we have a doctor's appointment at Riely's Children's Hospital. They changed our time on us too. It was 9 in the morning and now it's 1 in the afternoon, agh... It's not for anything major, just a check up, but I do so ever hate the flippin' drive. My mother is attending with me, so at least I'll have an extra set of hands, which I'll need for Tre'. We're taking her vehicle which means more space too, so YEAH! I'll let cha'll know how it goes.

~Have a Beautiful Day~

SCHOOL IS AWESOME!!

Tru is doing amazing in school. Her speech is picking up along with her fine and gross motor skills. She actually crawled up the slide and went down it by herself yesterday. She is becoming more independent every day. She is also becoming quite the little helper now too. She tries to help me pull up her pants & she is more likely to get things and give them to me. My favorite part of the whole schooling thing though is the homework that is assigned to her. I have to read to her every day, I use to try to read to her every day but she wasn't very interested, but now she expects it and accepts it. I would almost go as far to say that she enjoys it. Especially when I get all silly and do the voices and try to include her in the story. At the end of two weeks we send in the sheet that we keep track of what we've read and she gets to pick out a prize from the TREASURE CHEST. I really love this new school. I can't say enough good things about it and the people that work there. I haven't had the chance to actually volunteer in the school because of the new baby, who is growing so quickly, but they do send home things for me to do. I spent over 4 1/2 hours coloring award certificates that are going to be given out this week. I enjoyed every minute of it. I sat Tru down and she colored on her paper while I worked on the certificates. I got so into that I even put stickers on them and all I was asked to do was color them, but I couldn't help myself. lol. Next week is our first parents meeting. If there are enough people there they are going to vote on members for the policy council and parents council, my only concern is that they won't let me be on both of them. I want to be as involved as possible and will take on everything if they'll let me. I'll be sure to let everyone know how that goes when the time comes.

~DEALING WITH BABY BROTHER~
Tru is adjusting to Tre' quite well. She doesn't like it when he cries though. She seems to be comforted when we tell her that he's okay and explain what is wrong with him. On day I had her sitting at the table eating her lunch and he started crying really loud. I swear she said, "What's wrong?" I didn't let the question faze me, even though she rarely speaks so well, I told her he was hungry too & she said "Oh." and went back to eating while I fixed Tre's bottle up and fed him.

I'm always encouraging her to be a big girl and SHOW her baby brother how to do things, such as feeding herself, picking up her toys, getting dressed. I think it has motivated her some what cause she is really making great strides in these past couple of weeks. I know alot of that has to do with being back in school. I've made up my mind that this summer she is going to have to do a play group or something so she doesn't have any regression like she did last year.

She has accepted that Tre' isn't going anywhere, but she still doesn't really love on him though. She refused to hold him when she's sitting on the couch. She doesn't mind it when we hang out in her room with her and play, but she doesn't want to touch him at all. She's coming around though. She's starting to sit next to us and climb up on the bed with us instead of avoiding us and shutting herself in her room. I really do believe that she was mad a me for having him, but she seems to be getting over it. I just know that in a few years those two will be inseparable & be the best of friends.

Well, I've got many things that need to get done.


~HAVE A BEAUTIFUL DAY~

Glasses

It's amazing & a total relief. Through the Headstart program Tru is eligible to receive a voucher to help pay for her glasses. As a matter of fact there may not be any out of pocket expense for us. They'll run our insurance first, of course, but I've been having issues w/ getting in contact with the CSHS insurance Tru got when she was in First Steps. I've been on the phones most of the last week trying to get everything lined up for her this school year. I've gotten the screenings and intial meetings out of the way. The speech therapist is set up & I've sent notices out to the PT & OT ladies to try to get that lined up. She only has 10 days till she starts. . . . I'm running low on time, but mostly everything is in line. I'm waiting on the Coordinator to call me back as I type, if their eye doctor makes the glasses right there in their office, I'm going to switch to him. I've heard really good things about him and he past the background investigation I conduct personally. It is a bit of a drive to see this eye doctor, but he's well worth it I'm told. No horror stories or terrible experiences have been reported, lol. I'm so excited about the new school year for her. She's gonna have a blast, when the teachers where here doing the screening, she was just a giggly while drawing and sitting at the table with one of the teachers.

Have a beautiful day!

School Update

YEAH! HIGH PRAISES SANG TO WHOM EVER IS WATCHING OUT FOR ME ABOVE!!!! Tru is going to get the Occupational & the Physical Therapies through the school even though she is going to Headstart. The Headstart will provide the Speech therapy. I think what the issue was a mix up in what the coordinator thought was our school district. See living in the back woods of Indiana, where everything is spread SOO far out, transportation is a major concern, especially with gas prices tipping $4.00 a gallon. Luckily for Tru, the Headstart is with in walking distance of the public school. So one of the teachers from the Headstart will walk her up there for the appointment. I'm debating on taking her myself & plan to every chance I get. I don't want to be left out of the loop, but then it comes back to the cost of transportation for me to drive out there and back when Tru is already there and has her own way. HER OWN WAY. . . . My baby girl is so big and no longer a baby. Before I get off track though I want to mention that the Headstart teachers are actually coming to our house on Tuesday to meet Tru, before school starts. I thought this was a wonderful thing & told the lady so when she called me to arrange the appointment. The lady was surprised and said most parents found it to be bothersome. I simply replied that I'M NOT MOST PARENTS & that it really put me at ease. This way I don't feel like I'm sending my angel girl off with a bunch of strangers. I'm going to sit down and compose my list of questions later today & get my binder for this year together.

~Tru is now a big sister~
On August 11, 2008, Tru Legacy got a little brother, Scottie Lee the Third. We thought he was going to be a girl, but . . . . God works in mystic ways. I'll get pictures of them together when she adjusts a little better. I tried to get her to hold him and she pushed him away. She doesn't try to hurt him though. She steers her power wheel around him & doesn't try to run him over, so that's a good sign. I'm confident that they'll be the best of friends once they get use to each other.

~Talking~

Tru is talking so much more. She's got bye bye down. She's said baby a couple of times in the past couple days too. What takes the cake though, is a cousin asked Tru who was coming toward her, it was the cousin's daughter, and Tru said the little girls name just as plain as day. Tru has played with her before and enjoys her company. It was awesome though to see her display that kind of recognizing.

Well it looks like this school year she may not receive OT & PT as I had hoped. Since she is in the Headstart now, the therapists at the public school are not available to her. Or at least that is my understanding as of now. I'm in the process of corresponding back and forth to find out more about it. Either way though, I have weighed the pros and cons of going to the Headstart versus the Preschool & I still like Tru's odds in the Headstart. She may only receive Speech therapy, but the simple fact that there are only 18 kids & 8 or 9 teachers, where as the preschool has 30 kids & 3 teachers. She needs that hands on attention to learn & both Scottie Lee & I agree that the Headstart will be better for her this year. I'm not knocking the public school, but the Headstart is our best option this year.

~WORKING ON THE SITE~

MODIFICATIONS ARE BEING MADE TO THE SITE. UPDATES TO LINKS ARE GOING TO BE MY FOCUS FOR THE NEXT TWO WEEKS, sorry there won't be many updates of Tru. But rest assure she's enjoying the rest of her summer before school starts.

^Mimicking^

It really amazes me how much Tru learns from watching. That's why I'm holding such high hopes for school. At breakfast this morning she only ate when I ate. Which is okay now cause I eat around the same time she does, but I eat a lot faster than her & when I finished before her, she thought she was done too. I told her to eat & she'd repeated it right back to me, "eat". She said it more like a question than anything else. So needless to say I had to sit down and slowly eat some more until she was done. After I sat down though there wasn't any problems. I just wish she'd do more mimicking, like when it's time to brush our teeth or clean up. lol. Can't have it all though. She's doing alot of mimicking while coloring too. If I make straight lines, so does she. (Or at least her version of straight lines) If I make circles, so does she. If I stop, so does she. If I change crayons, she wants to also. Usually she wants the crayon I'm using, but she wants to be just like my little shadow, lol. It's really quite adorable. She's even trying to use the play dough tools by herself, which is awesome. She'll watch what I'm doing and then try it when I stop using whatever tool I had. She's starting to get mad when I try to help her too. She's got that "NO" down pretty good too. I'm really impressed cause she only uses it when it's appropriate, never out of context. I think I'm the only one she says it to though. I haven't heard any reports from Daddy or other family that she's saying it. Then again that may just be because I'm the only one who tells her no, lol. I'm so mean! It's all for her own good though.

~Getting ready for a new school/year~

Well it has been confirmed that Tru will attend the LHDC Headstart on September 2. I'm glad it's not next month. I've really been enjoying the time we've been having together these last couple months I haven't had to work & it's just been me & her. Next week she has to go to the doctor to get her physical for school, & shots. ugh! It's been awhile since she's had to get stuck with a needle, so it'll be a hectic day for her. She has to have her hemoglobin checked and have a lead test. In the last week of August, mere days after having Avahlee, the teachers from the school are going to come out here for a home visit with Tru. They want to have interaction with her one on one before the other kids are mixed in. I didn't think to ask them if that was because she is special needs or if they do that with all the children. It doesn't bother me, I actually think it's kind of smart, needless to say I was impressed. I believe whole heartily that being around those other little kids is going to help her tremendously. I'm updating the handbook of Tru's communication, so that they can understand her. I was going to make more pecs magnets for everyone's house, but we never really GO anywhere for too long & she really only uses the one w/ Daddy's picture on it. She'll point to the one that we do before we brush her teeth, but it's only cause she thinks the lil' boy is cute, or something, cause she has a fit when we brush her teeth, unless she's in the tub & I sing. I wish I had a video camera so I could share her giggle with the world. She'll point to Daddy's picture and I'll give her the magnet & she'll run off giggling. She doesn't chew on it, rephrase that. . .she hasn't yet. Her last IEP, or what ever they are calling it this year, was really pushing the PECS for communication, so we've been working with it. I really feel out of the loop cause she didn't have scheduled therapies all summer, I've done what I could and she's coming along, but I really noticed a plateau, even a little decline, with her speach, behavior, use of fine and gross motor skills, next summer I'm going to have to enroll her in camp or get private therapies of some sort. She needs constant interaction for improvements and growth. I would never dream of denying her that, but . . . I've always felt a little guilty that I went back to work right after she was born, I lost all that precious time. . . . I still got plenty up these sleeves for my angel girl though. She's excited about school though. She's going to be riding the bus this year too. It's not one of the big yellow school buses, it's more like the supped-up van /buses I drove for the nursing home. The only thing I worry about that is, she has a fit when we leave the school. I guess we'll see when the time comes. I just want her to have fun and be happy. I don't want the experience to frighten her to death, I can't go with her though, even if I wanted to, I'll have Avahlee . . . . . . I pray it's just like last March, when she started preschool at PC. She won't need me, too much. I still have to work out the therapies w/ the people at PC, but they are still on vacation until the 12th of Aug. so no one has responded to my inquires, I've made plenty to no avail. I'm confidant that sometime between the 12th of Aug. and the 2nd of Sept. I'll get it straighten out. That's the time frame & I'm sticking with it. Getting glasses for her is the next thing to, I'm tired of waiting for the insurance company. I'm going to make a couple more phone calls, but if it doesn't happen quick, I'll just pay out of pocket. . . . I guess. Well I gotta go, Tru is awake, she'll be asking for breakfast soon.

~Have A Beautiful Day~

Talking more & being and ANGEL

Tru's speech is really improving. In great leaps it seems. The other day I left her with my friend, the one who made me realize that sometimes I don't pay enough attention to detail. I had to do a bunch of running around & it was too hot to drag Tru with me. When I got back & was relaxing before going back out into the heat, Tru was just jabbering away about Dadda, byebye, Momma, go. I guess she was ready to leave cause when I told her we'd being leaving shortly she told me NO. She said it twice, clear as day. That's the first time she'd said it. She hasn't really used it since then, but then again she gets almost everything she wants, so she has no reason to say no. lol. She's been saying all her words really quietly though. I don't know what's up with that, but I've really had to keep my ears open for words. She says them so quietly that I can hear them when she says them, but it takes my brain a moment to register that is was REALLY a word.

We're getting ready for school this week. I'm making phone calls and getting paper work straighten out. I was really surprised that she had to have proof that she had attended the dentist this year. She went when she first turned three, so she doesn't have to go back again till March, but they actually need a paper saying that she's had a check up in the last six months. I'm really getting excited for her. Hopefully they'll keep her busy enough to keep her learning. I'm just so lame anymore that I'm no fun. We still managed our weekly outing last week, but it nearly killed me. I'm gonna do some painting with her today, maybe. I feel bad for her, but every day I get closer to my due date the less I feel like doing anything. It's killing me to take twenty minutes to even do this post. I've got no energy. We make do though. I'll feel better when she gets around the other little kids and gets to interact with them. I really feel that it will help her speech a bunch.

{HEAT WAVE}

Maybe it's just cause I'm 8 months pregnant and carrying all this extra weight, but IT'S TOO HOT TO EVEN MOVE! Tru and I did get out of the house early this morning and made it to the park before the sun really warmed everything up. She ran around for 20 minutes and then we laid under a shade tree for awhile. Apparently she had enough of it cause she headed to the car on her own. We went and visited Grandma and then Daddy while they were on there lunch breaks. Afterwards we went to the store. She was so well behaved and the cashier even said so. (The lady is always there when we make our weekly trip and has seen how upset Tru gets if she's into a mood.) The only fit she's had today was when we drove past Me maw & Papaw's house, & didn't stop. lol. If I hadn't of had groceries I would have stopped but the fit only last 10 minutes tops. When we got home I was going to sit out on the swing and let Tru run around in the yard, but Tru had other plans. She ran to her small pool, seen that it was empty, turned around, & crawled up on the porch and said IN a couple times while I unloaded the car. She really amazes me.

The other day when we, Tru & I, were visiting a friend I had my eyes opened to how stupid I really am sometimes. My friend has a lizard, is just a little one that lives in a 10 gallon aquarium in her living room. Tru was over there watching intently, just as quiet as a mouse. When she walked away from Alice's, the lizard's, cage, she was sticking her tough in and out of her mouth. Just like the lizard does. I, being the simple minded adult I am, asked her what she was doing. It took a younger version of myself, an almost 17 year old, to remind me that was what lizards do & Tru was mimicking what Alice was doing. DUH! How stupid am I? I work with her daily of trying to get her to mimic different behaviors and activities & here she's doing it on her own & I'm questioning what she's doing. Needless to say, once again Tru has put me in my place.

Just a little side note, I have started to chart Tru's behavior & must say that it's amazing how good of a child she is. The whole chart is either green or yellow. There is only 1 little spot of red on it in the past two days. And that was only cause Mommy didn't stop when we went past Me maw & Papaw's. Tru really is such a good child & has done me proud the last couple of days with feeding herself, helping dress herself, being well behaved in public, and keeping herself entertained when I'm too tired to even move. I AM THE LUCKIEST MOMMY ALIVE!

I almost forgot to mention that she is improving her speech with the sing-a-long video she's fascinated with right now. She's humming and trying her best to sing along. There's a song on there, Barefooting, ever time they sing "We're barefooting" she trys to say it too & she either looks or touches her feet at the same time. I love the actually comprehension that she is starting to display at the oddest moments.

What is a 1p36 deletion?

What am I trying to raise awareness of?

1p36 deletion syndrome is a chromosome disorder where the end of the short arm of one of the two chromosome 1s has been lost. This chromosome disorder was first described in the late 1990's and early 2000's. The diagnosis frequently requires confirmation by FISH testing. The majority of children with 1p36 deletion syndrome did not acquire their chromosome disorder from their parents. However, a study showed that three out of sixty-two children do, and in those cases one parent has a balance rearrangement of their own chromosomes. This rearrangement risks becoming unbalanced when eggs or sperm are created.

Chromosome 1p36 deletion syndrome can also be called "monosomy 1p36". Monosomy 1p36 is considered to be one of the commonest chromosome deletion syndromes. The incidence of monosomy 1p36 has been estimated to be 1 in 5,000 to 1 in 10,000 live-born children. To date, more females than males have been reported.

If you want the genetic garble you should check out;

• http://en.wikipedia.org/wiki/1p36_deletion_syndrome

I'm more interested in looking on the ways they are improving the daily quality of their lives & what more can be done to help make it even better. We are all responsible to keep informed and help our fellow man kind when needed. I just wish there was more compassion in the world. But I refuse to be discouraged because I see the wonderful things that Tru is capable of. And as soon as I figure the video thing I'll share more of Tru's playful moments instead of venting about the screaming.

~*Order some bracelets*~

We are trying to raise awareness about 1p36 deletion. If you would like to show your support please contact me via e-mail or a comment. The information for the bracelets is as follows, There are 3 sizes.
Small, it will be rainbow swirled,
medium-one is blue with white lettering or pink with white lettering
large is glow-in-the- dark.
Price will be $3 each.
"1p36 Deletion Syndrome" is printed on each bracelet to show their support.

**Keep in mind that the small is big enough for children. Teenagers and adults with slender wrists would probably want to order medium. A large would be perfect for adult males or ladies that don't like to have restricting things around their wrists.

I will pay to ship them to you.

A better day

I know my last post was a little distressing and it was basically me just venting, but I needed to really bad. Today was a much better day though. Tru and I spent the day running around & she was an angel compared to how she has been acting. She was well behaved in all the stores we went to & only had one melt down in the car. I think it was because it was hot and she was hunger, so it was a wonderful day for the both of us. It never seems to fail, when I think I'm at the end of my rope and I just can't take it anymore, my friends and family always come through for me and provide that little pep I need. Or that little kick in the ass, that tells me there's no need to feel sorry for myself cause it won't get me anywhere anyways. I want to thank those who listen to me rant and rave and give me the reinforcement I need or the make me open my eyes to reality. Ya'll know who you are. Thanks so much, I love you all dearly.

Screaming Out LOUD!!!!!

Maybe it's just cause I've been stressed out with my graduation and birthday this weekend, but Tru has been an absolute tyrant. If she doesn't get her way she screams and screams. I'm not joking or embellishing when I say she screamed for an hour straight this morning. All because her Daddy had to leave to do some work for a couple of hours. She wanted to go outside when he did but we weren't dressed and hadn't even had our morning routine half way completed. I explained to her that we'd be leaving soon as I got everything straighten up and we got dressed, but it didn't do anything to appease her. I gave her the minute and half bitch session she always gets when she goes into one of her moods but that didn't help either. As soon as the microwave went off she hopped out of the chair, ran to her room, slammed the door, and proceed to yell and scream at her toys & her favorite sing-a-long movie. Thankfully, knock on wood, she isn't banging her head on anything. She is still hitting herself in the head with her hands, but not on hard objects like the tv, floor, or tables. It got so bad this morning that I gave in to taking her outside, even though I wasn't ready to go outside. I put her in her swing, which she usually loves, but she still had a fit. It just so happen that Daddy was back from working for a little while, thank god cause I'd have never gotten anything done. He couldn't even calm her down though, he had to put her in the car before she would relax. Then he proceed to tell me she was absolutely having a fit when I stepped back into the house for a second, as if I couldn't hear her. I snapped at him and told him she'd been throwing a fu*king fit since he left. (SORRY BABE, I DIDN'T MEAN TO FLIP BUT I WAS AT WITS END THIS MORNING) I'm just so frazzled right now & Tru isn't making it any easier for me. Sometimes it's like she can't get enough of me. She follows me from room to room and jabbers to me all the time & then other times it's like the very sight of me throws her into a spiral of erratic behavior. I can never just actually leave her alone cause I'm scared she'll hurt herself. I let her think she's in control though cause I'll give her time to herself if she runs off into her room and slams the door, but as soon as I open the door to check on her, she slams the door on me or starts another fit. She seems to be losing her tolerance for me. I guess it's cause she's been spending 24/7 with me since school has let out, but there isn't much I can do about that. I'm hoping the new headstart and being around other kids will help improve the situation. I'm thankful school will be starting around the same time Avahlee is born, so that I can have time alone with the new baby, but I'm starting to have doubts about how Tru is going to deal with it. I love her more than the world and only want the best for her, but I don't want her to be. . . I'm not sure what the word is that I'm looking for, but I know that I want her life to be the happiest and healthiest it possible can be & right now I don't feel like it is for her. I'm so upset about it that I'm having trouble sleeping and having bad dreams when I do get to sleep. I had a dream the other night that Tru and I were at a beach of some sort & she commanded the turtles to attack me & them did. I just don't know anymore. Maybe it's just the hormones and everything will straighten out after the baby comes, but I'm worried. . . .

She doesn't even enjoy our daily activities anymore. Trying to get her to paint, color, do any hand over hand activity is like the start of WW III. All she wants to do is her own thing & even then she gets upset about something. I'm all for letting her express herself, but the manner in which she is doing it now is driving me to the end of my rope.

On a brighter note, she did really well when we went to the store today. She did start to get loud at the end, but she hushed when I talked to her calmly and entertained her with finger-plays as we waited to get checked out.

*Back to Normal*

Well, Daddy's vacation is over, so we are trying to get back to a normal routine. It was lovely to have him home though. The fireworks over the holiday weekend were awesome, but Tru didn't really fancy them this year. They were too loud for her. Last year it wasn't a problem, but she wasn't a happy camper this year. I didn't really push the potty training over the weekend. We were so busy visiting and running places. It was the first thing we did this morning when she got out of bed. She didn't go, but she sat there for a good 15-20 minutes. She fed herself breakfast & helped me clean up & she's back on it again. I try to keep the potty in the same room with her, but I really get tired of hauling it around so I think we'll just leave it in the living room. I can't keep it in the bathroom cause she just won't use it. I even tried to put the whole potty in the tub and have her sit on it, but she wouldn't have it. If she's in the bathroom then she wants to play in the tub. Oh well. I'm really just trying to familiarize her with the concept of the potty. I figure I have the time and it can't hurt, CAN IT? If anything it gives me a chance to interact hands-on with her every 45 minutes. I think that may be some of the problem though. She won't poop when I'm around, she likes to be alone. I don't blame the kid. She still hasn't pooped in the potty at all, is always been pee. I've started to only sit with her for about 5 minutes and then leave her alone. When she gets off the potty I come back to her and we look in it and I ask her if she's done and she'll help me close the lid or sit back on it if I make her. Once her lil' butt starts turning red I let her close the lid. I feel kind of bad, but she doesn't seem to mind.

It's a crappy day today so I've got some arts and crafts planned. I was thinking we'd make Daddy a picture that says we missed him. She really does to. It was the first thing she said this morning "DAD?" I reminder her that he had to go back to work and that's when she sat on the potty & looked at a book with me, so he was forgotten for the moment. She hasn't asked for him again, but come 3 or 4 this afternoon it'll be "DAD! DAD! DAD!" "bad mama! bad mama!". I truly believe she gets bored with me. I feel much better this week, so I'm trying my best to keep her busy. I'm gonna take some pictures of what we've been doing, as soon as my batteries for the camera charge. I'm took video of her eating this morning, but I ran out of memory. I'm going to experiment and try to add the video sometime today . So if the page is messed up that's why.

Potty Training

Today was the first day of potty training. First thing this morning I put her on the potty for twenty minutes and low and behold, she peed in the potty. We sang and danced & got ready to eat breakfast. About an hour after breakfast, I tried to get her to sit on the potty and she had very little interest. I took the potty in her room with her and turned the television on and she sat for about twenty minutes and got up without having done anything. About 30 minutes later she come running up to me babbling & I could smelled she was dirty. The way I figure it is every 1 hour and 1/2 I'll put her on the potty for at least 20 minutes.

I can hear her playing with the letter p in her babbling. I'm going to look up the sign language for potty. I have it on a paper somewhere. She's not really using many signs other than eat anymore. I know that's my fault by I love to listen to her babble and when we concentrate on signing she doesn't talk as much. She's been doing really good with the picture phonics though. I'm waiting for my battery's for my camera to charge up before I make a magnet with a picture of her on the potty. The other day she grabbed my hand and took me to the fridge, where all our magnets are located and pointed to cup. I opened the fridge and got a drink out and let her shut the door. She stood there looking for a second and pointed the Scottie lee's photo & send Daddy. I praised her on identify daddy, gave her the cup, & she ran off giggling.

WE'VE HAD ANOTHER SUCCESS! About four o'clock. She was with the memaw & papaw most of the afternoon. They tried around 1 o'clock and there was no luck. When she came home she at a snack & I sat her on the potty again. After about 5 mintues, she tinkled & hopped off the chair. We put another sticker on the chart.

ATTITUDE

9:30 a.m. - Oh heavens does Tru Legacy have a temper. Last night her daddy tried to bring her into our bedroom to cuddle with us, as we usually do before she goes to bed, she stopped right in the middle of the doorway, turned around and ran into her room. Scottie lee tried to follow her but, she slammed the door before he could get through it. I laughed of course, but noted the late coming terrible twos. I waited for them last year about this time & was thankful they never showed up. They are here now, for sure! This morning I told her she was going to have to wait for her oatmeal to cool & she flipped out, started screaming, and stopped away. I ignored her & she ran into the master bedroom, she turned the television on, changed the channel to PBS, crawled onto the bed, & is still waiting there. I'd better get her set up for breakfast. . . . . . . . . . . . . .
10:30 a.m. - That was easy enough. She does so well feeding herself. She won't let me help her anymore, so I just sit & watch. She squishes up her face when I try to move the food around so it's easier for her to get. Then she'll throw the spoon down and just use her hands the entire time, so I don't touch her food. I love that little squished up face she makes. It's better than her screaming, she's got a set of lungs on her. If we happen to be out in the store & she starts screaming I place two fingers over her lips and correct her. It worked really well last week in the Dollar Store. I'll see if it works on our weekly trip to the grocery store today.

~IN THE PEACE & QUIET OF THE NIGHT~
Tru did really well today. I took her to the public pool for the first time. She had a blast! She hated when the lifeguards took their 20 minute lunch & everyone had to get out. I sang some songs and gave her cookies, but nothing could take her mind off of the water & why she had to get out of it. I reapplied her sunscreen at that time but forgot to do her face. It's pink as hell now. : (
I feel so bad. I have aloe though and I've applied it a couple of times. I'm thinking tomorrow is going to have to be a mostly inside day for her. After we got done swimming we went to the grocery store & her behavior was remarkable. I think she was too tired to care what was going on cause the air conditioning felt great. Overall, today was great fun. There were a couple of incidents at the pool that were a lil' dramatic, but nothing too over the top. She calmed down when I explained what was happening or gonna happen & of course sang to her. I'm exhausted myself, so Good Night. . . .

Bring tears to my eyes!

Tru's speech is improving. The other night we, being her me and her daddy, were laying in bed together when she looked at the both of us and said "I LOVE YOU!" I looked at my husband and had to ask if I had heard correctly. He was as amazed as me. She hasn't said it since than, but I truly believe that one day she is just going to starting talking non-stop and never quit. I'm hoping the day comes soon. I can tell her frustration when she can't communicate with us. She'll start screaming and hitting her head with her palms. I've started restraining her and putting my hand over her mouth while talking quietly to her. She is starting to catch on that screaming is not the way to get what she wants. My efforts are diminished by others though because they give into her ever whim and tantrum. It's a long road, but I'll keep trudging down it till she leaves me in the dust.

Well, another crummy day is here, but the sun is trying its best to come out. I was going to take Tru out to her pool, but my best friend says there is a tornado watch out for us and that I should just go sit in my mother-in-laws' basement. We've opted to stay inside at home and I've got the radar up on the computer. Tru wants to go out so bad though. I feel bad cause yesterday when it wasn't raining the wind was blowing so hard she could hardly stand up. It was good exercise for awhile but big things were starting to blow around in the yard, so we hard to come inside. I'm going to take her to the park again on Thursday in the morning before it gets too hot. Than we'll come home and hang out in her pool. The same thing we did on Monday. LAZY SUMMER DAYS ARE THE BEST. I bought her a bunch of toys to go in the pool with her. Some bright colored sticks, toy boats, balls, a float. NONE of those things interest her though. She'd rather put her face in the water. I keep a really close eye on her, but somehow she swallows enough water to choke on. She was starting to get the hang of it on Monday, but I had to bring her in a feed her some lunch at 2 p.m. Oh she had a fit. She was doing well though. It had been an entire 1/2 hour since she'd last got choked up. I could see her coordinating her self to hold her breath and lean into the water. It was adorable. I relief cause I was scared I was going to have to take the pool down if she didn't get the hang of it. I think it's important for her not to be scared of the water and to learn to swim. If have a pond on our property and my husband can't swim. (I bet you can imagine what my worst fear is.) I'd like to teach him how but I can't get in the pond till after Avahlee arrives. I taught the neighbor/cousins to swim. It made me feel better to know that they could make it back to land if they ever fell in. THAT MUST BE THE LIFEGUARD IN ME STILL. lol. Tru is certainly not scared of the water though. Which is good. I'm trying to teach her to float on her back. It's a work in progress. She just gets so excited that she can stay still. I've got all summer though. I'm confident she'll pick up on it.

SCHOOL IS OUT!!!!

Much to my relief school is out for summer. I just feel better having her home with me. I know that here she will receive the utmost attention and be included in all activities. I have witnessed first hand Tru being excluded from the class. I'm not just talking about the field trip incident either. It was little things I saw when I would pick her up or swing by when I was volunteering. The class would be singing and dancing and poor lil' Tru would be sitting by herself away from the entire class. I'm not blaming the teachers, even though it's their responsibilities to include all the children. There is only so much 3 teachers can do with 25 students. I have already enrolled her in a smaller school for next year. I'll have to put her on the bus, but by the time school comes around again, Tru's little sister, Avahlee, will be here. This new school only has a class of 17 or 18 kids, but there are 8 different women who help with the kids. Both my husband & I think that ratio is much better. I have spoken with the teachers, bus drivers, and cooks & all of the ladies appear to be caring, loving, and concerned individuals. The classes are Monday thru Thursday 9 a.m. - 12. I really like that. It's been so hard for me to have to let her go. I even admit that I did keep her home a couple of times and pick her up early just because it was a beautiful day outside. I know that sounds terrible, but . . . well there is no excuse for it but I couldn't help myself. Now we have the next 2 1/2 months to do as we please. YEAH! Yesterday we went to the park. Tru had a blast. I helped her crawl up the slides and all over everything. And of course. . . she had to swing. Then we went and got ice cream and visited the old folks home. It was a tiring day for her. She slept all night and in late. Today is a lame day though cause I'm not feeling the best. My third trimester isn't starting off all that hot. It won't hold us down though. I am planning a trip to the pool soon. We can't swim in the pond cause there is bacteria in it that could harm Avahlee. We'll I've got to go entertain the little one, PAINTING since we are staying inside.

Well, I have spoken with the teacher about Tru attending the field trip next year. Well, I tried to speak, she brushed me off and said we would talk about it next year when the time got closer. I have written the incident down and tend to bring it up at the meeting that is setup for the end of the year. I can't wait till this teacher retires. She is a royal pain in the arse. Those kind of people are everywhere though. I have learned to deal with them rather nicely though. If I have to deal with them at all, that is. The book fair was a great success though. They raised money and bunches of children got wonderful books. I also made some wonderful contacts. I am going to look into a couple other preschools for next year. I got to meet the ex-president of the PTO, that no longer exists. The PTO is in limbo. The ex-president also has a special needs child, so we hit it off right away. We exchanged numbers. She's the one who actually referred me to the preschool that I am looking into. It is a church based school, but I have actually attended that church before and I really enjoyed the setting. That was almost ten years ago, but my sources tell me that not much has changed. I wouldn't mind going back to church myself. I have the time now. That was always my excuse, I had to work most weekends and nights so I couldn't attend services. Anyways! (My mind was wandering.) I am also looking into the Co-op based preschool for next year. Tru has caught onto the schedule of being in school and seems to care less if I stay or not. I may hang around for a few, but I've learned to let her be a little more independent. She is growing up so fast that is scares me. She is going to be a big sister in August. She knows it too. We bought her the Dora edition of becoming a big sister and talk to her about it all the time. Now that I am really starting to show, she will come up and lift up my shirt. (She is going around and lifting up every body's shirts now.) I tell her that her little sister, Avahlee, is in there right now. Every once in awhile, if she's feeling real lovey, she'll kiss my belly. She was mad at me the other day though, cause I made her come inside, she walked over to me after pouting for awhile and lifted my shirt and smacked my stomach. I was so shocked. I grabbed her hand and sat her down and gave her a three minute time out. I didn't yell, but I firmly told her that wasn't nice and that she wasn't allowed to hit people. She hasn't done it again and I haven't received any notes about her hitting the other children. I think she was just really tired and worn out that day. That was the whole reason why we came back in, but I never want her to express herself with violence. The emotions that she is expressing is healthy, but I don't want her actions to become harmful to herself or others. I haven't really had that problem with her before. She use to bang her head when she was one or so, but she grew out of it. I guess we'll have to wait and see, just like everything else we've encountered.

School Issues

Sorry if I get a little worked up, but it is to be expected when my kid is involved. She is adjusting well and much quicker to school then I could have hoped. They have a field trip coming up and I was told that she couldn't go unless I attended, because she has a tendency to scream. I thought that was a reasonable request and offered to attend with the class,but my efforts were shot down. I really got the feeling that the teacher didn't want to bring her at all, even if I did go. They are going to several different businesses in town. The only one I think Tru would enjoy would be the fire dept. I had originally told them that I would keep her home with me that day. (I am sure I could walk into the fire dept. and they would give us a tour anytime, so I wasn't worried about her missing out.) Then I come to find out that another little boy in her class wasn't invited to attend without his mother either. That other little boy is the only other special needs child in Tru's class. Last year he wasn't invited to attend either,they told him he could go this year. I felt dayjavue cause that's exactly what they told me, "Tru will have two more chances to go".I believed that, but I know that I can't attend next year cause I will be working whereas I am not working this year. It almost makes me believe that they are discriminating against the special needs children. They know these children need special attention and require some help, so why aren't they making it available and why are my attempts to help being shot down? I am volunteering at the school book fair on Mon. and Tues. so I am going to ask around about the principal and superintendent and she how others preceive them before I decide excatly how the matter will be handled. I won't forget about it, but I don't intend to be backed into any more corners by any bullies.

A break from the gloomy weather

FINALLY, a nice day. Tru throughly enjoyed it. She rode her little Dora 4-wheeler around the yard for a half hour. Thank goodness we have a big yard. I even got to work in my flower bed a little. The sun was shining and there wasn't a cold breeze. Tru got tired of riding her 4-wheeler when I kept steering her toward the house. She slide off and started walking around in the yard. We walked up the gravel road a little and I made her turn around. I would have walked farther but I forgot the wagon and didn't want to have to carry her back too far. On the way back up the road she kept sitting down and looking back down the other way. I ended up carrying her most of the way back to the house. She got distracted by Daddy's junk that was piled up under the leanto and started going through stuff. I steer her toward her toys but she kept going back under the leanto. That's when I realized that she was trying to get to the swing that isn't set up yet. Well she just didn't understand that it was too heavy for Mommy to set up, and became irate. That's when I figured it was time for a nap and took her in. I gave her a cup and helped her take off her shoes. She crawled right up in bed and laid her head on the pillow. She was out in no time and it's no wonder. It's been a busy day for the both of us. I helped her draw a picture after she fed herself. Then we played with the ball, spinner, and blocks. She painted the picture, with lots of assistance and singing silly songs. Then I cleaned up while she watched Dora. She got bored with that easily and kept going to the door, so that's when we went outside. And now more than half the day is gone, but it was well spent. Well since Tru is napping and the cleaning is done, I have to go feed the ducks and fill up their water. No rest until I'm dead.

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.