Avery's 2014 Kindergarten Graduation Video

 I realize it has been over a year almost since I last posted...you can blame FB for that:) Anyways  I did want to put this on my blog though so It was here for future reference..and so my mom could see it. Today was Avery's kindergarten graduation and I can say with out a doubt in my mind that she is ready for first grade next year!!!!  We cant wait..I think its going to be a GREAT year for her!!!

Avery’s Kindergarten Graduation

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..

IEP for 2013-14 School Year

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.

A couple videos

So I have an IEP post in the brew too bc we had Avery’s IEP last week but I just wanted to post these videos on here..One thing they said in her IEP was that she only knew ONE sound out of all the letters..and I could not believe my ears..bc that girls knows most of her letter sounds…so I came home and made a video…two actually…so you listen and tell me if she only knows ONE letter sound bc it sounds a lot more then ONE to me 

In the second video I had it so she could see herself just so you are warned bc there are a few spots that she gets distracted by herself….LOL!!!

They also said that they thought she knew her sight words when you flash them to her on flash cards but when you actually put the words in books and on paper she isnt able to read them…soooo  I went home and gave her a book to read…after you look at the video let me know if you think she is reading her sight words on paper and in books or not..Kind of looks like it to me but once again I could be wrong:/ So  I am going to take the videos in and show her teachers bc maybe she isnt showing them everything she can do…Im not really sure but if she isnt then we need to figure out how to get them to get her to show them.

FYI- Groupon has a really really good deal on Preschool Prep videos right now!!!!  Avery LOVES these videos..they have a set of numbers, letters, colors, shapes for 15.99 and free shipping too!!! They also have the sight word video set..and the phonic set..I just ordered the phonic set for Avery..we have the sight word ones..and as a matter of fact the book she is reading in the video is a book from Preschool Prep..its Meet the sight words easy reader books level 1. Love them all so far!!!! They make it really fun and engage them. I swear the numbers, letters, colors ones are the ones that taught Avery them. and they also have apps too that are worth every.single.penny.I think we have them all!

Avery’s 6th Birthday

Avery wasn’t able to go to school on her birthday bc she was sick..she was really sick..she had been battling the stomach bug..(back in march..im trying to play catch up while im stuck on the couch..theres a post coming for an update too) So out of all the birthdays we are 4 for 5 for something bad happening on them this year So my plan was to have a big tea party with Avery had some of her friends over Spring break but guess what…we got hit with another bug and so I kind of just brushed it under the rug and said forget about it…bc it had been just one sickness after another then my procedure.

We started off the day going to the dr. I wasn’t sure if she had an appendicitis or if it was a stomach bug. we were on day 4 and she wasn’t improving at all and she would grab her stomach and start crying owie..when she cant communicate to me it becomes rather difficult to figure out exactly what is going on. Its always a guessing game. So I was tired of guessing and I wanted to make sure it wasn’t her appendix. anytime she gets sick or gets a little tummy ache..she will say.. doctor..and I ask her you want me to take you to the doctor..and she says. yes.

dr figured it was just a virus..bc he numbers were right were they should be. that is one thing I like about her doctor..he will instantly check her WBC to see what her numbers are and then we go from there..and then she was ready to go home and take a nap…

But we still celebrated her birthday. Her life is worth celebrating..and as time goes on and years go by I don’t feel like I need to reflect so much on her birth anymore. Instead I want to reflect on the bright positive girl she is becoming. But a part of me will always have her birth day in my head and it will always be brought to the surface on her birthday. But I sure am glad that God blessed us her!

If you ask Avery how old she is she still will say FIVE…and I will have to remind her no…you had a birthday remember and now you are SIX!!!!!  You are getting to be a big girl..she just giggles..

 

The neighbor girl whose a 6th grader and who is also  Destiny’s friend  brought Avery a birthday present for her birthday… a bag full of goodies which included bubbles..Avery’s favorite…Avery loves her too..everyday when I drop her off at school she says…Cassidy bc she thinks Cassidy is going to be there to get her out of the car bc she has been there in the past..

and she took another nap.

Avery’s supper of choice was chicken..and so I asked her what she wanted with her chicken..and she says…hmmmmm potatoes..so chicken and potatoes is what we had..shes pretty easy to please She also wanted white cupcakes..hmm I don’t really want to look at you mom I need to keep an eye on this fire..

Nope sorry mom I just cant do it I don’t feel that great..and she didn’t really eat her supper either..

But she seemed to find a little bit of energy to open her presents 

 

Brielle reading her card that she made to Avery while she opens Brielle's gift..some stickers…and a noisy music toy..that she repurposed..I think it was Brielle's and it was a tan color and I know she painted it red for her

Brielle asked Avery what she wanted for her birthday before and she said bubbles. a balloon.(which brielle made sure to get for her). a bear. and a doll like Brielle she said..so in other words she wanted a American Girl doll..which worked out really good in my favor bc before Christmas American Girl had ran a special on 2 dolls for $50 each. That is unheard of..American Girl hardly ever runs specials and so I jumped all over them before they were gone which they went pretty fast..I actually have a couple more up in my closet for when the twins get to be a couple more years older but I kept on to Avery’s until her birthday so I was happy to hear that is what she wanted too.. 

Destiny being silly and putting Marie Grace (think that is her name)hat on Avery...and I would say she LOVES her doll!!!!!

A couple days later when she went back to school then she celebrated her birthday at school.

Pictures from Avery’s last Surgery

The minute we walked into the hospital she knew…the girl just knew what was going to happen…She was starting to get cranky too bc they were taking forever and going way past her time to go in the operating room…and She hadnt eaten anything since midnight. apparently the dr was running behind with the operation that was scheduled before her.

Aww George..Her and George have been on quite the wild adventure together…He is always right there by her side..and she loves him!!!!!

She told me George wanted the hat on too 

Getting rolled to the operating room

Here we goo…and im a little nervous mom….I asked to go back with her while they put her to sleep..and no matter how many times you do it it never gets easy..

and it never gets easier to see them like this…when she was waking up u see the oxygen mask next to her..well she didn’t need it but she thought she did..she would nuzzle right up into the mask..it was kind of funny..

When she did wake she kept a very close eye on the nurse as you can see!!

Here are the screws that were in Avery’s hip..the last time when she had the screws removed up in Boston the dr accidentally threw them away..and so this time I made sure I told her dr here that I wanted them..and so when he came out to talk to me he brought them out to me…I was kind of shocked to see them that long!!!

Hopefully this will be my last post on her hips for a very long time!!!!

Avery’s Surgery

Just wanted to let everyone know that Avery will be having surgery on Friday. She is having her screw removal from her hip that she had surgery on in September. Her ortho dr here in South Carolina will be doing the procedure so we don’t have to go up to Boston. Whew!

It should be an easy procedure. SHOULD being the key word. but anytime she goes under its always more riskier bc of her sleep apnea. But if everything goes ok she will go home the same day just be a little sore for a couple of days. Ive already warned this dr that I WANT the screws..the other dr threw them away from the last one.

Luckily she is over her stomach bug…We have had the nasty stomach bug at our house and it has lasted forever..it stays around for 4 days at a time..so far we are 4 for 5. and Jared and I haven't gotten it yet.whew.

It has been a year since we have started down this journey with her hips and it is coming to an end..I cant wait for this to be all behind us. So far everything that we did seems to be working so we are thankful we went through with it..no looking back.no regrets.

6 month post op from Avery’s surgery

 

Avery went back to orthopedic dr that is here to check her hips..and had an x-ray done and they both look AWESOME…PTL!!!!!   I am always so nervous when they check bc I'm afraid he will tell me they are out or something bad. But they did x-rays and both look great and are in..so do you know what that means??? That means that a year later the one side is still in..that means it was a success!!!!  Thanks be to God!! and it has been six months already on the other side and so far so good. But since it has been six months that means its time to take the screws out. So Avery is scheduled for surgery March 29 to get her screws removed. IT should be an easy same day surgery. But it is still a surgery and it still is never easy to see your child go through that and with Avery having sleep apnea things are trickier when she is put to sleep. But I will be sooooo happy to put this all behind us and be done with it. It has been a long year and one I don’t want to repeat.

Avery was/is popping her knees out too but she isn't doing it as much anymore since she isn't in the cast. So we are just going to watch it for now and  I am comfortable with that for now. So no surgery on her knees right now..Wooohooo!!! Hopefully over time she will stop completely and then they will just get stronger and stay in place. The doctor couldn’t pop them out him self while she was just laying on the table all relaxed so that was good too.

Avery Reading

 I was planning on sharing this a while ago as i did on my fb page...but never got around to it..This was actually taped at the beginning of December 2012. I started this new reading program with Avery..and WOW...she is doing awesome...Terry Brown is awesome and i am soo happy to have found her. She has a great school out in California but since i am in SC that wasnt going to work..i contacted her last summer and she said she was working on putting something together for everyone that wasnt in California...but then i never heard back from her..so i contacted her again...she says i gave her that extra push to start/finish it up..so me, along with a few other parents are going ot try it out this year and see how it goes..and so far...ITS AMAZING......She is very expereinced in teaching children with ds especially children with ds to read.

I am soo proud of her and how far she has come this year. .Cant wait to see where she is at the end of the year....anyways trying to track her progress this was only working a couple of weeks with her..i need to do anther video..She loves her school at home ..and is always asking me to do it with her..a good sign..

Updates

Sorry it took so long to update on Avery’s dr appointment..

We spent all day at the oncology appointment..and honestly it is somewhere I don’t wish to return to anytime soon..I had to go to the cancer center here in Greenville for the appointment..and as we were walking back into our room we seen kids siting in chairs getting treatments..I just wanted to go over there and give them all a hug..and I kept thinking is this going to us pretty soon???? Please God no..I don’t want to be that family..I don’t want my daughter to suffer anymore..but if God decides that is a storm we must walk through we will do it and we will do it with him as our guide.. and trusting in his perfect plan.

We had to do paperwork..then we had to get blood work done..which they were awesome…but then im sure they do pediatric blood work A LOT..just guessing…and then we went upstairs..and waited for ever..the good thins is the waiting room is all set up like something you have never seen before..kids spend a lot of time there playing and waiting..and they know how to accommodate them…then we seen the nurse and then we had to see a resident..can I just say that I know they have to train but I really really hate going through the hoops..I don’t want to beat around the bush..I don’t want to have to explain everything more then once..but anyways so I explained everything to this resident dr for ever and he says well I think its scabies…what?? im sorry mister but I don’t think so..but ok whatever you say…so after he said that I got very distant and kept everything short…then the dr came in and said that ALL of her blood work came back normal..he was expecting certain things to have spiked or dropped numbers but they were all normal..so he knows no explanation for her petechiae  rash. She still has it..but is just not as dark as it was..So he said that he isnt worried right now about it and he has no explanation right now either why she has it. But since he isnt worried I shouldn’t be either..He told me the next time it gets dark again to bring her in that day…and then she will probably get more blood work done then..to see if anything is elevated or what her numbers are…

So right now we are relieved we didn’t hear the cancer word at all..and we can ease our minds right now….Thanks be to God for the good news!!!

Other dr appt updates..

Eye dr- Patching is working..he said he seen improvement..and so have I so we will continue to patch for one hour a day.

GI dr- Everything is looking good…in fact he said we can even just go once a year..we will continue the fruit-eze or even fiber bears for her constipation and if we see any problems we can go back sooner if we need to..

Special Needs dr/nutritionist-  She is doing AWESOME!!!  and the dr is VERY impressed with where she is as far has her weight and height…its so hard to believe that at one point in her life she had such a hard time thriving and gaining weight..you would never know that by looking at her now..but yes at 10 months the girl only weighed 10lbs. she was all skeletal…We have come a LONG way!!!

We go to sleep dr on Friday and then on Tuesday we go to ortho dr..so will have more updates then..I know the sleep dr wanted to perform another sleep study which I HATE but hopefully it will tell us that her sleep apnea just miraculously disappeared. 

Well that is it on Miss Avery for now…

As far as me…blood work all came back normal..waiting on the hospital to call back with date for my brain MRI.

Jared- he will be quitting his job that he has worked at for the last 11-12 years. Its going to be a new chapter for us. He will be just doing his own thing..he has been doing his full time job plus getting a business started for the last five years..and it has just gotten to be too much so he will just be working for himself now but its going to be a BIG change for us…especially health insurances…

Destiny- well ill just say this..she is 11 going on 18 I swear..if anyone has ANY advice on dealing with a ticking time bomb let me know…that’s all im going to say about that..bc I know they read this and I don’t want to say any more.

Twins- they keep me on my toes…still not potty trained..work in progress..

Brielle- she got terrific kid..and well that’s about it on her..

I have many bday posts to catch up on..the twins turned three at the end of december..Brielle turned 9 and Destiny turned 11.

Well that just caught everyone up in a nut shell of half of what's been going on.the other stuff well I would rather keep that to myself...Sorry for the lack of posts but its been kind of rough lately…not how I wanted to start out 2013. Trying to stay positive that things are going to start looking up.

We are cast FREE!!!!!!!!!!!!

Wooohooo!!!  We are cast free!!!  The x-rays looked great and dr said take it off…so we happily took it off…Avery was super excited to get it off..she kept saying whoa…as she first started to walk..She will still have to sleep in it for another month..but I can handle that and so can she..This is pretty much behind us and we couldn’t be happier..We do have to go back in six months to take the screws out of the side we just did..but dr said it is a very simple procedure and is an out patient procedure. Thanks be to God for carrying us through this last year.

Here is a video of her walking out of the dr.s office..

Afterwards I took her out for a celebration lunch..she chose Chick-fil-A…

We also got a knee brace that we have to start wearing..She pops her knees out of place..and we are going to try to brace it..We cant do ligament surgery for the same reason why we couldn’t do it with her hips…it will more then likely not work and over time just go back to the same way…other option is bone structural surgery but we cant do that until she is around 10 or 11 he said..so for now we have to wait..so while we wait we figured we would try bracing it..Bracing it might work bc its suppose to keep it in place so it cant slide out..I am thinking if we wear the brace for awhile maybe she will get out of the habit of doing it so we don’t have to do any surgery..For the most part it doesn’t cause her any pain but there are times where she pops it out and cant get it back in and says owe..so then it does hurt her.. so she will wear one brace on each knee for most of the day...right now though I'm giving her a break from everything for at least a week…I think she deserves that!!