Tuesday, May 27, 2014
Tuesday, June 11, 2013
If u are friend with me on FB you have probably seen and heard all of this but for those of you that haven't wanted to share here too..
I along with two other moms who have a child with ds felt there was a need for a Spartanburg DS group bc there was none so we started BUDS (Bringing Up Down Syndrome of Spartanburg). What did we exactly hope for this new group???? To bring families together in Spartanburg and surrounding areas in support of those with DS. We started out with having a moms supper and it was great…it was more then great..it was awesome to meet other moms and just all talk and we all got it!!! There were new moms there and moms who had older ones too…we all could relate to each other and the new moms who had questions could get them answered too…and since that first meeting we have kept up with it and have a moms supper once a month and it just keeps getting better and better!! I look forward to them.
But last week was our first family event and it was a success. Everyone was so happy that we did it and couldn’t wait for the next event! That made us so happy to feel we werent the only ones that knew Spartanburg needed this! We had a family BBQ supper at Lake Bowen and although it rained through most of the event and the kids couldn’t go off and play on the playground it was ok bc everyone was still happy and just mingled with everyone. We had about 13-15 families that were there. That is pretty impressive for our first event if I do say so myself. Everyone told us how fun they had and loved it! Here are a few pictures from the event…
The ones behind BUDS…we had three but now there is only two!!
Our logo…and banner that we had done..
Here is our FB site for anyone that wants it https://www.facebook.com/BUDS.Bringing.Up.Down.Syndrome
Our other hope is to do new parent care bags and deliver them to the hospital when there is a new family up there that delivers a baby with ds. We are still working with the hospital to get all the kinks out.
BUT with all of that it all takes money and so we decided to do a tshirt fundraiser. We have designed and worked with a local printing company to come up with a great looking tshirt design if I do say so myself. It was a BIG group effort with lots of peoples different opinions. BUT this is what we came up with…
Tshirts are $15 and come in any size from youth xs all the way up to a 10x. I can ship we just ask that you pay for shipping. BUT for any of my SD friends and family we are coming home in a few weeks and I can bring them with bc we are hoping to have all money collected by June 21 so we can get them ordered. THe front will have a an awareness ribbon in the form of a heart. Look up at the picture of me and the other girl and look at the front of the shirt I am wearing that is what it will look like. The shirt color is a very pretty royal blue. Some computer screens make it look like a purple-blue but its not. Send me an email if you would like to order one at firstname.lastname@example.org
Tuesday, May 28, 2013
Today was Avery’s kindergarten graduation…
Here is a video that I made…it is a little long..bc it has there songs on there that they sang plus any pictures that I took….
At the end the principal sang them You are my Sunshine and I wish I would of recorded that.. I lost it at that moment bc that is Avery’s song…when she was younger Jared and I sang that song to her A LOT….and every time she would start crying if we would start singing that song to her she would stop..She loves that song…
Today has been a little harder then I thought it was going to be…mainly bc Avery will be repeating kindergarten next year so in reality this is not really her kindergarten graduation bc she will have another one next year..
Sunday, May 5, 2013
Last Friday we had Avery’s IEP meeting for the 2013-14 school year. Her teachers and principal called a meeting a few weeks prior to discuss and see what everyone was thinking was best for Avery for next year. We all agreed that it would be in Avery’s best interest to repeat Kindergarten next year. She did in fact miss 2 months of school this last year. I am really comfortable with this decision. I have talked to A LOT of moms and all of them tell me if you are going to repeat a grade kindergarten is the grade to do it..its best to repeat the grade where they get the fundamentals and get them good under there belt. No Avery is never going to be up to grade level with her class mates but you know what she doesn’t have to be. Im not going to be able to keep holding her back to keep her on grade level. Not going to happen. The whole goal of Inclusion is to have them modify and adapt to what the general education is doing so she CAN keep up even somewhat.
So going into the IEP we all knew where her placement was going to be we were just going to work on goals. Her placement for next year is at her home school where her sisters go to and she will go into kindergarten again with her same teachers and she will get pulled out for 2 resource periods where they will work more with her on reading and math. She will have speech 2x a week. and she will have OT and PT once a week at the school. I am really excited to see where she will be next year.. its AH-MAZING how much she has taken in so far this year..and she missed two months of school..it just reaffirms to me that what I am doing is working and until she can show me other wise it is the way I am going to go!
There were a few things that didn’t set right with me at the meeting and that was a few of there statements of what she knew and what she didn’t. I guess next time I feel like I need to video tape her and take it along with me so everyone can get a clear picture of what Avery is doing besides what is on paper. One thing that was stated was how Avery only identified 1 sound out of 110 on a k-1 grade letter sound assessment. So if you look down a few posts that is why I posted the video of her telling me her letter sounds. She know a lot more then 1 sound. Another thing..Avery read 2 out of 60 words correctly on a k-1 word reading assessment. That is where they brought up where they knew she knew them on the flash cards but when you ask her to say them on paper or in books she wont say them..so that is why I made the other video..that is on the same post a few down. So it comes down to how they are testing her..I get that they have to test her but she doesn’t do good on tests and they even told me where they tested once and then they came back and tested her again she actually did worse. I think they need to take it all in..not just the grading from the tests. This is suppose to be a new thing this next year and it is suppose to be better to track/measure her success and maybe the more they work with her on it the better she will get it..but I think there might need to be some accommodations to that test or something. We will just wait and see how she does the first nine weeks with it next year.
A few feel good stories that they shared with me....Avery has been loved by the whole class. They all take to her so well..Whenever she does anything correct the whole class is her biggest cheerleaders...They will start hooting and hollering..There is one girl that likes to be the mother hen to her..and they have to tell her to let Avery do it:) The whole school knows her and they all love her..and Avery knows the whole school...I would say she is a little spoiled by everyone in the school is what the principal said:) Tears of joy right there.They were wanting to just start flowing like a river....that's how inclusion works and not only is it good for my little girl but it is soo good for everyone in that school to be around Avery..Win-Win situation. so when they all go out in the real world someday they wont shy away from children like Avery bc they just don't know what to do bc they have never been around it..instead they will go up and embrace her. We have to raise Avery to be able to go out and live in the world. She is going to be embodied with everyone. She is NOT going to be off in her own little corner in this world with a bunch of other adults that have developmental disabilities. She is going to be out mingling with everyone no matter what race, sex, disability or not. My main goal for her going to school is for that very reason right there. Socialization.
One more story…Avery has to go get another girl in the morning to go to resource room with her..so she will go and knock on the door and tell the teacher Madison please. and then Madison and Avery walk hand and hand til they get to the resource room. and they walk that way on the way back too..no words need to be exchanged. They just have that kind of friendship!! Pretty neat! Aw the things she is learning I cant even begin to tell you.
But Inclusion works. and I believe that whole heartedly. I am part of an awesome FB group for Inclusion for kiddos with down syndrome. and everyone there is a wealth of information. They are there to help, they are there to say they just understand, and they share stories if there children are older..they share pictures, they share so much information its unreal and its all inspiring to read them. We all have the same ultimate goal in mine and we are all there to help everyone reach that for our kids! So someone just posted this story that I would like to share bc its just awesome.
“There have been questions about full inclusion. I guess this could be considerd Jessica's story and why I think it is important to consider this option. Please understand that I think there are strengths to every education option out there and as a parent we do what we think is right for our child and family.
I have a daughter that has been fully included since kdg and is currently in 4th grade at CHIME (schools expertise is full Inclusion…they have no pull out programs). She is academically low… reads, writes and does math basically at the kdg/1st grade level. She also had behavioral concerns when we started too…runner, too physical (hitting, kicking, and biting). Essentially very limited oral language…really thought she was going to end up being a life time signer. I am giving all the details so that you get the total picture on who my daughter was/is. She has additional adult support and yes this person is responsible for facilitating a lot of the modified curriculum, with supervision of both her gen ed and sp ed teacher. Her modified curriculum is created by a sp ed inclusion teacher in collaboration with her classroom teacher. The kids in the 4th grade have been with her since the kdg...they learn that everyone is unique and learn at a different pace. What she gets out of it is exposure to curriculum that is frequently overlooked in SDC…for example this year they read Island of the Blue Dolphins. The kids read the story at home and then discussed it in class…we read her the book in the evening and the modified version that was created for her was studied in class. She participated in group/class discussions, did short modified assignments in class on the story similar to her peers and created art like the rest of her class about the story. She may not get out of the curriculum what her peers do but she does grow and learn from every experience. If she had been in SDC I doubt she would have had been exposed to this significant story that is part of our area history. She has typical peer role models who help guide her by learning to treat her like they would anyone else…if she would hit them they were taught to confront her and let her know how it made them feel and let her know they did not like it. I can say at this point the behaviors are essentially resolved and only surface now in instances of extreme frustration…and yes we still have a behavior plan that is modified annually and when needed. Verbally she blossomed at the end of kdg and during first grade and I think the fact that she was surrounded with positive verbal role models that were always around her and interacting with her…peers, had a significant impact in this. What better motivator can there be then to want to communicate with someone who is your friend in a way they can understand. I know this is lengthy but hope this helps…you should also know she has multiple diagnosis (DS, Aut, ADHD – hyper type have been diagnosed…I also suspect she has oppositional defiant disorder, but figure she/we have enough diagnosis and can’t handle any more) . PS- There is no way to know it her reading, writing and math skills might be higher if we had chosen a different ed environment for her....” Isnt that a very encouraging story..especially when we start doubting ourselves. So I wanted to post it on here so I always had it so I could come back and read it any time I start doubting myself!
One other thing we have to work out at the IEP was a good communication sheet. We have been using a basic one but I wanted one where everyone was involved.. I want to know what is going on in her day. When you have a child that cant come home and talk about there day you just feel lost. really lost. Well I think we figured it out and so it started this week and I LOVE it…it goes with her everywhere she goes..if she goes to resource room it goes with and they write about what they did..if it goes to PE they write about what they did..and I can sit down and talk to her about her day and she gets it..and we talk/communicate back and forth. and it is music to my ears. and she gets sooo excited if I ask her something like..so you played Bingo with Mrs.Summers. and then she goes on and tries to tell me all about it. I really really hope they keep it up. You don’t realize how much you take that for granted until you have a child that cant come home and talk about it.
Anyways this got to be way to lengthy but its done for the year and don’t have to think about next years until next year..i m sure that one will be a fun one. So ill take the easy one this year and start preparing for next years!
Over the summer we are going to work like crazy on math. A lot of people have had success with touch math so I want to try that with her. and keep working on her reading and sight words so she can kill it next year!!! Hard work pays off..sometimes it sucks how much I have to work with her a day but I know it pays off so its worth it.
Saturday, May 4, 2013
Here was my FB status after a week:
Ok so we are almost a week out and im still not back to myself...im getting very impatient....Talked to dr yesterday she said to give her a MONTH...a MONTH i said..and she said it was the least i could do since i have been suffering for the last 3 years..she is soooo optimsitic that this is going to work...really wish i could be too..i have my doubts. if im still really out of it by Monday call her and then we will take some next steps..but she said it will take time. everyone recovers differently and I just have to remember that:( So baby steps it is i guess....
Today has been a pretty good day for the most part...but hurts to do anything streneous. So i walk around like a litttle old lady;)
Here was my FB status on Tuesday of this week:
Well I woke up thinking today was going to be a great day.. Was feeling a little better so decided to go find me some cough medicine( been battling a cold too) and get a few necessities at Costco. Shortly after that it went downhill Fast. My head pain just kept escalating and it got to the point of explosion!!!!! I lost it... I couldn't handle the excruciating pain..i was making it worse by cryin..., my coughing attacks weren't helping at all either. It even hurt to talk. All I wanted to do was just start banging my head on the wall to make the pain stop! It has been one of the roughest nights in a long time. Called Jared at my breaking point. He was tied up at work for awhile and couldn't come home so he called my neighbor. Soo thankful for a great friend/neighbor that could take the kids. Called the dr. Up at Duke. Couldn't get her at first was ready for Jared to take me in to hospital. She finally called back and told me exactly what all I could take from the prescriptions she gave me. Told me to take a little extra of diamox, Pain pills, relpax. I'm kind of on cloud nine right now though but thankfully the head pain has subsided for the time being. Dr figured it was from me not taking the diamox today(didn't take it this morning bc I was feeling good). So apparently I have to come off of the medicines that she prescribed for me slowly so this doesn't happen again. Its been 11 days already and I'm soo ready for a turning point. Tomorrow is a new day and hopefully it will be a better day!
Here was my FB status on Thursday of this week:
Well yesterday was another rough day... So I called the dr again and she called me in another prescription so when we went to go get it... Found out it had sulfa in it ( my mom has always told me I'm allergic to sulfa but don't know what happens) so I called my mom and she told me that I just broke out on a rash when I was 6... So I decided to try it anyways bc I was desperate... Turns out all last night my body wanted to get it out of me or something bc I was hovered over the toilet all night throwing up....:( so I'm really hesitant to take another one this morning. So here I lay again flat on my back all stinkin day and cant do anything.....Here comes the vent bc quite frankly I'm done.... I'm so SICK of my head explosions, I'm so SICK of laying flat on my back, I'm so SICK of not being able to take care of my family. I'm just SICK of being sick..its been two weeks of this constant high pressure headache N everything else and I'm sorry but it is soooo wearing on a person and i cant take it anymore!
Dr said that we have to get the head pain/pressure under control on the new medicine first and then we could switch to the other medicine. Bc I think the new medicine is what is making me nausea. The nausea is really bad too..if I move a little bit I'm over the toilet either puking or dry heaving.
So this last Friday I was still really nausea and had to lay down and hardly move but the head pressure was coming down some.
Today i m not really that nausea but if I move around a lot I do get nausea but I can sit up on the couch so that is a huge move. I still have pressure in my head but its not near as bad…but if I move around a lot then it gets worse..so I fell like finally we are starting to see progress a little bit. Maybe over the next couple of days it will only keep improving FINALLY!!!!!
So whats a person to do when they are stuck on the couch all day long....update there blog..sorry for all the posts but it feels good to be sort of catched back up now!!!!!