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.

School Update

Things have been going very well!!!! On Monday she was pretty tired when she came home..and at school too but most kindergartners are the first day of school…When I went to go drop her off on Wednesday the assistant teacher told me…”Avery is very smart. We were playing bingo yesterday and she knew every single picture. I was impressed. She is a very independent little girl.”  That’s my girl!!!  She is shining!  I feel like I truly made the right choice in where I put her. Yesterday the teacher called me and told me that she has enjoyed having Avery in her class and she has never taught anyone with special needs. So she asked If I would send her some links about Down syndrome. How awesome is that!!!  I believe that maybe in the beginning she was just really nervous and didn’t know what to expect and she is seeing too that she can “hang” just like the rest of the kids  Today was the last day I could drop her off..bc Monday is Independence Day…but Avery knew right where her classroom was..she eats breakfast with her sisters in the morning and then they usually take off before she is done and she sits there and finishes eating by herself and dumps her tray..no problem..and I followed right behind her and she knew right where to go..She goes into the classroom and knows to take her folder out where to put it and hangs her backpack up..and goes and sits down in her spot…and starts to work on her morning work. Just like everyone else! The teachers told me today that there are a few girls in her classroom that love helping her and playing with her…They showed me a sheet of paper that they did yesterday and there was a spot where u could put a friend and so the teacher told me that Avery wanted Alexis..and then another girl pipes up and says  I'm her friend too..  They have worked out her resource time so that she isn't missing anything important. She gets two 30 min sessions of resource a day. She is getting OT for 30 min once a week..along with PT too…and Speech therapy twice a week..one 30 min session by herself and one 30 min session with kids her age. I am going to work up a communication sheet today..something where the teacher can just quickly circle what went on in the day…so I can kind of know…bc she comes home and ill ask her but we don’t understand or if we ask her she answers yes…but she likes to answer yes to everything..but is quickly learning that she don’t want to answer yes to everything…For example..last night we had tacos..and I asked her if she wanted salsa on her taco..she said yes..so I went to pick up the bottle of salsa and said Avery u wanted this on your taco and she looks at it then looks at me and says “No..ewie..” So then I explained to her that she said yes though..so we have to say no then…They have started to show her and work with her using a communication board but apparently Avery don’t like it much..she pushes it away some of the time..
They read a book with the class about being the same and being different too..and paired up and let them see how they were the same and how they were different from others…and they never really zeroed in on Down syndrome and Avery..which I think is ok… bc the kids are young enough and totally accepting..but if they start to ask questions or want to know more the teacher will read “Hi My name is Ben…and I have a secret” (that’s the book that I gave them to read) so I'm ok with that for now. As far as the letter goes it got vetoed all together. The principal was going to come up with something and she said no parents or anything have even asked anything..So I’m thinking its not necessary but just because the parents aren't asking anything to her doesn’t mean the kids aren't coming home and asking them.  And I just would like the parents to have the right information about Avery and Down syndrome  to tell there kids about..what are your thoughts on the letter for the parents??? Should I just let it go or push for it more????

Avery’s second IEP meeting

I know a lot of you are eager to find out how Avery’s second IEP meeting went that we had on Monday of this week.  I can honestly say it went a lot better then the first one. We all agreed to Avery starting K4 in the morning next year and then after that she will go into a kindergarten class for the rest of the day with two pull out periods of resource time for 40 minutes each at her home school where her sisters will be at. I did not get an aide/shadow for next year as of right now. we are going to see how it goes..Part of me just wants one in place bc she will need one later but as of right now there is two teachers in the class and so they think she wont need one. and I am afraid that Avery would be glued to her/his side too and become dependent on them. This way she has the independence. We added a few more goals that I wanted and now we just have to figure out all the pull out periods and stuff like that.
Sadly they were completely different I think bc I had an advocate with me. I asked for the notes again at the end of the meeting and they tried to not give them to me but my advocate wasn’t having it. so I got a copy of them. Im not sure the kindergarten teacher really realizes that she was at a IEP meeting and what we set for her is what she NEEDS to learn and be taught bc she kept commenting on and showing me stuff that the kids are doing and what she EXPECTS them to know bc this time and so on..and I made one comment about how something was going to have to be accommodated and I swear I could of dropped dead by the look she gave me..so next year might be very interesting. my advocate noticed eye rolling a few times over some things I was saying..and at the end of the meeting when I brought up an aide..everyone made themselves perfectly clear how they really felt..that basically they all feel like I am setting my daughter up for failure and I am going to make her fall between the cracks!
So fast forward a couple of days to the award day..and I ask the principal if there is going to be an all day K4 program bc I was told there was not going to be..and then her teacher told me that there was going to be..and anyways the principal told me that we wont know for sure until the beginning of July but they are going ahead like they are going to have one. So  I said well I think I would like her in K4 all day instead if there is going to be a class..and she said well we can just start it next year the way we have it and can always pull her later and put her in that class if we need too..and I said well I don’t want to start her on one routine and make her learn that one and then a couple weeks later change it up and make her learn a new one..and so then the principal says..well  I want to make sure we are challenging her too…Umm SAY WHAT???? What did you just say??? I think my mouth hit the floor..bc just a couple of weeks ago you wanted to put her in a self contained classroom and then at the beginning of this week you made it clear that I was setting her up for failure by putting her in a general education classroom and now you are worried about challenging her..I think she may be bipolar..not sure…doesn’t make sense to me…so either she is starting to see the light OR she wants to leave her where she is so they can come back and tell me Oh well we tried it and it didn’t work..bc they think she is going to fail..not sure..im still not sure about what I am going to do for next year..I might want to change it again.after this comment..I am thinking all day k5 instead but I want the summer ot think about it…
Oh all the decisions..I need a break..my head needs a break..all of this is exhausting..just plain ole exhausting. So for now I am just going to take a break and think about it all..

Avery’s first IEP meeting

I know I should of posted something earlier to let you all know how the school meeting but honestly I needed time to think about everything that happened..but I do apologize for not letting you all know sooner. So here it goes…
I went to Avery’s IEP meeting with a mom of an 18yr old who also has down syndrome. We all introduced our selves and then we were getting ready to discuss the proposed IEP and I just basically said that there was no need bc I did  not agree with the proposed placement for next year.  I had stated that I was asked about before hand about that classroom and I had told them that I didn’t like it and I wouldn’t put her in so I had no idea why they drafted up the whole IEP on her being in that classroom. On the IEP there is a spot for them to check was parent involved in the IEP..and they checked yes…LIARERS bc I was not involved in any way! The whole meeting just kept going down a downward spiral slope..it just kept getting worse and worse..I told them that I wanted her in a regular classroom about 80% and they said was not going to happen and I said well im not signing that IEP and so they told me that the school will still be able to offer therapies to Avery next year but that was it..and we would have to meet again and have another IEP meeting when Avery was 6. So in other wards as of right now she is not going to school next year..Do you think they are in violation of FAPE (free appropriate public education) hmmmm I belive so! 
I walked out of that meeting in SHOCK!! That other mom that went with me was in SHOCK! She had never seen anything like it before..I was bullied..and I had no rights..Avery had no rights…there was no table talk of even coming to an agreement..it was either I was doing it there way or Avery wasn’t going to school. I was LIVID!! I don’t think I have ever been that mad in my life! I was ready to reach across the table and slap every single one of them and punch the door on the way out! Her teachers who say that they love her and want what's best for her…and have always been so nice to me..and helping..well all bets are off when it comes to IEP meetings..one teacher didn’t say one word..not ONE word..the other teacher that did say a little well she basically put a nail in Avery’s back and just twisted it in..it didn’t help her..it hurt her way worse. The principal…well she didn’t say ONE word either..which totally blew me..bc we had a different principal last year and he was awesome..he didn’t even hardly know Avery and he stood up for me at last years IEP meeting..he was all for LRE. (least restrictive environment) But not the new principal who has had a chance to get to know Avery and claims to love her..did she stick up for me..nope …did she stick up for Avery..nope…not one word…
Well if they would like to play this game..BRING IT ON!! I am not backing down..I started it and I'm going to finish it..and I'm not going to back down until my child has a free appropriate public education in the least restrictive environment as possible..why..bc IT’S A FEDERAL LAW!!!!! Do I like it??? Nope.I HATE this..I am not this kind of person..I HATE being confrontational. I hate stepping out of my comfort zone..but I HAVE to for my daughter. IF I don’t stick up for Avery no one will. Everyone else does not have my child's best interest at heart..they have there job at there best interest they don’t want to say anything that will get them in trouble or fired. So they keep quite.
After  I walked out of the meeting I asked for a copy of the notes..They told me that I couldn’t have them. They told me that the parents usually take there own notes and the ones that they take are for the school’s copy. WHAT??  So you are saying I cant have a copy of them?? Yeap that is what the special education director told me. Ok I said..and walked out..couldn’t believe it..that is not legal at all. Its illegal! and they knew it bc when I had to go drop something off at school the next morning for Destiny they were handed to me by the principal..very short and to the point. Its an awkward situation..really I have to be nice and not say anything bad around them about any of the officials at there school bc they have to go to school still there and they still have to respect there principal. They kind of know what is going on but not to much..and I would rather leave them out of it.
So I actually went to talk to another school in a different district that is closer to us.. My sister in laws sisters little boy goes there and he has autism and she has good luck with the school. At first she thought it was a charter school..but its not..but anyways I am glad that I did..As I was walking up to the school there was a little boy on the front steps with down syndrome with his therapist. Anyways it was awesome..he tells me hello..and my heart just melted..So anyways I went in and talked with the asst principal of that school and they were awesome…Even SHE the asst principal of another school in a different district was SHOCKED at what just happened at my IEP meeting..I asked her what that little boy was doing..and he said that he is in a regular kindergarten classroom with an aide and is doing great..they were unsure of how it was going to work last year but agreed to it per the parents request and they have been surprised. They have made accommodations and modifications to the kindergarten curriculm  but it can be done!  maybe just not in my district. Apparently it hasn’t been done before so I have to pave the way. But anyways after a really long talk with the asst principal..she gave me some great advice…and I asked if I could write a note to the parents of the little boy that I seen outside and if she would put it in his backpack..and she said she would..so that is what I did..
I talked with another mom who has a child with ds in third grade and he has been in a regular education classroom since the beginning and is pulled out for two periods..and is doing great too..it can be done it just takes some time and work to make it work.
I called the superintendent of my district and informed him of what was going on too..I have a meeting with him and the special education director on Thursday morning of this week. The special education director was at the IEP meeting..I don’t much care for her.
I have talked to so many other people..other parents..advocates and ALL of them said what they did was crap!! and they cant get away with it. So I am happy to inform everyone that I have an advocate for me..and I really like her..she is awesome..she is apparently very good at her job..and don’t back down and she told me that she has contacts at the next level if we need to go there.. I just wish she would of came with me to the first one. but I have called another meeting and our second IEP meeting is on the 21st.
whew did you make it all the way to the end of this???  Hope so…So what do you think??? 

2 days before Avery’s IEP

This post is going to be straight up the truth.its going to be me venting bc its my blog and I can do that..I want to have record of this so I can look back at it too so I can remember everything I had to go through and how I over came it..…its going to be about school… about IEP’s..the dark side about raising a child with a disability…have to say that some parents are very lucky and blessed to have the school on there side so they don’t have to deal with this CRAP..bc frankly that is what it is..C.R.A.P!!!!!!!!!! Not going to sugar coat it one bit. So if you aren't up for reading about that today..I suggest you just click that little red x up in the corner right now and close the window..I wont be offended!

Well Avery’s IEP meeting was suppose to be on Thursday this coming week…the BIG one about Kindergarten placement..but they call me on Friday to tell me that it has to be moved up to Tuesday..ummm hello that is two days less to prepare..I wanted to say NO so bad…but part of me just wants to get this done with…but I'm not ready bc I hadn't even received the rough draft of the IEP yet..so I kindly asked the teacher that I get that right away so I can prepare for the meeting…secretly I wanted to see where there heads where  bc since I told them that I hated the self contained classroom that I went to go and visit I haven't heard anything from them..not one word..it never came up again..IF you remember before Avery’s surgery I went to tour a self contained classroom…there are several reasons why I hated it..but my main reasons why I hated it..its not FULL INCLUSION…She would spend all day in that classroom and only come out for PE, art, music and library with a regular education room…the school is 30 minutes from us..its not her home school where her two other sisters go…there is not ONE..not ONE I will repeat kid in that classroom that is her age..there was about ten other kids in that classroom and she would be the only kindergartener..there was one other first grader..and the rest of them were all over third grade…

I looked over her last IEP from last year to see how she was doing in her current situation…right now she is going to a regular education classroom until 1030 at her home school..then she goes over to another school that is about 10 minutes away from us for a dd (developmental delay) preschool classroom with four other kids that have some kind of developmental delay..from 1130 until 130 then ride the bus home..and gets home about 300..why cant she do what she is doing right now you ask???? WELL apparently she is phasing out of the afternoon classroom..she would be ahead of all the other kids entering the classroom this next year..UMMMM HELLO??????  That should tell them something right there..but anyways back to her goals from last IEP..she has met alot of her goals…no not all of them..but a lot of them…Yes she has met them so what we are doing right now is obviously working otherwise she wouldn’t be meeting her goals..right?? so since she is meeting her goals and has phased out of the  dd classroom…they find it ok to put her in a self contained classroom….a little backwards if you ask me…but oh yeah obviously my opinion didn’t matter to them bc they still preceded with there plan.

What's there plan you ask???? I got the IEP in the mail on Saturday and I was mad…no I was FURIOUS!!!! There plan is to put her in that classroom..the teacher of that classroom was listed on the last page where everyone is listed that is going to be there..along with ten other people or something..they had checked the box on the first page that said 0-39% in a regular education classroom…my blood just got pumping…and the further I read on the more it got pumped up….I was ready to explode by the time I got to the end…it’s a good thing I got a copy before hand or I probably would of just walked right out of that meeting on Tuesday…but they have 10 hours to be exact in a regular classroom..and 20 hours in a special education classroom…and they did not check the spot where it talks about assistive technology..they checked no its not a concern…Ummm hello???? The girl is non verbal and cant express what she knows and her needs and all they ever say is if only she could talk..if only she could talk..blah blah blah…and they go and check that its not a concern….Id like to smack them right there if I could…well maybe but I felt like I could! Ha. She NEEDS to be evaluated for assistive technology by a person trained to evaluate her in it..she needs a device or something to help her communicate her needs. They also put “Avery’s current levels of  performance requires modifications to the current curriculum that can not be provided in a regular classroom.” Crap..crap..crap..that’s what that statement is…I just want to scream…cry…some of everything..

Avery knows 36 out of 52 letters..all of her uppercase letters..she can recognize them all..working on lowercase..she can recognize her numbers from 1-10…she knows her basic shapes..she knows most of her colors..she mixes two up…she can write her first name…and most of her last name..she gets stuck on the w. and she can recognize her name. you can read her name when she writes it too…big plus..she needs help with playing along side of her peers I guess..according to the teacher…but when she is with all of her cousins she doesn’t have a problem playing with any of them..but I guess she doesn’t parallel play so they say....tell me she is behind going into a regular k4 classroom all day..that is what I am going for..and if they try to tell me that there is only two teachers and 25 other kids..and she is going to fall through the cracks and not get the one on one attention she needs..well I'm going to simply say I understand what you are saying but it sounds like to me that you might need to hire a one on one aide to help her then. I have been working many scenarios in my head..I need to write it all down that is what I'm doing tomorrow..They gave me there plan but now Im going to put together my plan..what I want for her..what she needs to succeed. right now they have not put any proper supports in play..and according to the IDEA law…and LRE {least restrictive environment}it says LRE with proper supports..I just have to prove that being in her home school in a regular k4 classroom is just that..the least restrictive environment for her..

When I had Avery no one told me that I was going to have to be a lawyer..no one told me I was going to have to be really smart and remember so many words and what each letter stood for like IDEA, LRE, FAPE…etc....no one told me that I was going to have go through the ringer every single year once when she entered school. No one told me that the school would not have my child's best interest at heart. no one told me that such issues would cause problems between me and my husband..no one told me how alone this walk was going to be at times..no one told me I was going to have to fight like tooth and nail just to get my child a fair and free appropriate education..This isnt fair..this sucks..I hate this…I can handle the down syndrome diagnosis..I can even handle all the medical stuff that comes along with the diagnosis..but the school stuff..well that is where it breaks you..just breaks you right in half..a person can only take so much and they just break.. Why does it have to be like this..why are there are so many people out there…school..family..friends that are stuck in the old way of doing things…the one class fits all solution.. even talking to friends or family on the phone..I can hear it…they don’t get it..not one bit..they just agree and say yeap…to be nice.. but what are they really thinking ..you always ask yourself that..are they thinking that im crazy and just need to put her in the special education classroom..bc honestly that is what Jared used to think…until I showed otherwise..and when you and your husband do not agree where she should be…well lets just say you are tried but if you keep calm and communicate you will prevail…and he is slowly starting to see it my way.but will he go to the IEP meeting..no bc mainly he doesn’t have time to learn everything…so he doesn’t want to go and say anything that will hurt her..and he is intimidated by sitting in front of all the people..very uncomfortable…he says lets just hire a lawyer to go with me..well I am very uncomfortable about the whole situation too..I don’t want to do this..but if I don’t do it..who is going to stand up for Avery…no one..we have to advocate for her..for the rest of her life.and that is the honest truth...We don’t have a choice. The normal way is not inclusion…most of the world sees her as a fit for the one class fits all classroom. The stuff that I am put through with school makes me think long and hard about pulling her out and homeschooling her..wouldn’t that be so much easier to never have to go through this..but I don’t think that is the answer either..

Today all day I felt like puking..my stomach is in knots..I woke up all shaky..been shaky all day..got a migraine after church…cant imagine why…just cant relax..Jared told me to take one of his anxiety pills but I didn’t..but tomorrow or Tuesday I think I am going to have to.. I need it..I need to relax and just be able to breath..The last couple of days have been spent doing nothing but research...research.research and more research...and plainning and preparing..my house looks like a tornado hit it..but every waking minute i feel like i need to prepare..while i was eating cereal this morning i was reading a book about understaning the IEP process better..."From Emotions to Advocacy" realyl good book by the way..totally recommend it..my laundry well you should see the clean piles and the dirty piles..but what do i have to do tomorrow..well more planning and preparing..figure out my game plan so to say..that is what the IEP process is like for most parents out there that have a child with a disability. It’s a situation that we shouldn’t be put in. period. So if you could say a few extra prayers for me in the coming days…id appreciate it.

Really quick update on Avery...talked to dr..she has to be in cast at least until May 20th...at least two months post op...but will update the rest maybe later this week..after i can breath..

School Ramblings

So we are approaching Averys annual IEP meeting and that means we need to start thinking about all of her options for next year. She should be starting kindergarten next year but I don’t think she is ready for that so I am hoping that holding her back this next year she will be more mature and ready for kindergarten the next year but that still leaves me with next year.  Do we leave her where she is at?? Which is in our home school in the morning in a typical classroom and then in the afternoon she is in a dd(developmental delay) classroom with 5 other kids and two teachers..or do we put her in a special education classroom in another school that is about 30 minutes from us? So they wanted me to go and tour the spec ed classroom..so yesterday I went…I was not impressed at all!!!!!!!!  I do not feel like that is the best thing for Avery. This classroom had about 7 other kids in there with two teachers. They were kids of all ages..and all of them except ONE were way older then her. One was in kindergarten this year. which means he prob wouldn’t be next year. So right there makes me not like it. Avery THRIVES off of other kids. Just to give you one example……At the beginning of this year all she could do is write a circle…but she went into her typical classroom and seen other kids writing her name and sure enough she was writing her name BY Christmas time!!!!  bc she was modeling there behavior. She would only get to be with the regular classroom if she went to the special education for art, library, pe, and music. Im sorry but that is not enough for me! That is not enough for her to have the socialization that she needs..that is not enough of her to see them modeling academic wise…Is she behind though??? Yes I know she is and needs a lot of one on one time but I guess that is where I will come in and I am going to bust my butt off and work with her…But it is a special education room and the teacher knows how to teacher her…right??? I am sure you are saying that to yourself..well not necessarily..I asked that teacher how they were going to teach Avery….what they were going to use…I said kids with DS need to be taught differently…for example when it comes to reading..they learn by sight words and not by phonics. So I asked her how they were going to teach her to read..and she said that they use phonics in there..so she really don’t know how to teach my child any different…I am pretty tempted to just pull her out and homeschool her just so I don’t have to deal with this school CRAP!!!!  Bc really that is what this is…its crap…If you talk to all moms that have a child with ds that goes to school we all have one thing in common….WE ALL HAVE HAD SOME SORT OF SCHOOL ISSUE!!!  Why does it have to be that way??? Why is everyone sooo stuck on what they did in the past and not looking forward to making a change for the better for the future.. WE have come along way and we have a lot more to go….Check this video out…it makes my heart smile….If given the right chances they can do soooo much….they just need to be givin the opportunity!!
http://fox4kc.com/2012/02/20/down-syndrome-doesnt-end-dreams/#ooid=tzdXFqMzrdr7dbzfwrrv23ax-UaOgUAq

So right now I am in the process of reading up on as much inclusion as I can…and I am going to find as much information on how they learn…so I can start to teach her at home too!! IF I have to I will homeschool her and just take her to school for the socialization part…there is actually a kid that does that in our school..He is a fifth or sixth grader….he has DS and his mom has home schooled him since he was little but he has started going to the school for half the day I think probably for the socialization and all the kids just love him…I might need to look that mom up and give her a call!!  Inclusion is soooo important for all the other kids too..it really is a win win situation!
Avery is LOVED at the school…Everyone knows Avery and they all love her..teachers. kids. older kids..younger kids. Just the other day when I was dropping them off a older kid opened up the door at the drop of line and said Hi Avery…and Avery gives her a big huge..and later that day I asked the girls who that girl was and they said that they didn’t know…and I said well she knew Avery..and they both go..oh well EVERYONE knows Avery…lol!!  I wonder how my shy girls like that….lol!!
Yesterday I went to bed with a migraine..I cant imagine why…I hate this stuff and it sucks that I have to do all this extra research and reading on laws. just so my kid can have a fair education. But I will give them the fight of there lives. I hope they are ready..bc this mama is not backing down!
As I was getting ready the other day I was thinking about how Avery is almost five..I cant believe it…really..how can it be?? I started thinking about what other “typical” kids her age would be doing…and it hit me…She is behind..like way behind in some areas..ex…Other “typical” kids would be starting to learn how to ride a bike without training wheels..and Avery well she is still learning HOW to ride a bike with training wheels..she cant figure out the pedals for the life of her..every now and I again I get hit..and have a little pity party…ive convinced myself that it is ok though..and it is normal…and then I think about that sweet little girl that God has blessed us with and she doesn’t care if she can pedal that bike or not…she just moves on to something else she can do…she doesn’t let it define who she is..she doesn’t let it stop her from just being a kid….and I know Avery will do things on her own time.
WEll I know this post is all over the place..but I guess that is where I am at right now..my head is just spinning with everything…

Updates on Avery

I just realized that I never updated you all on how Avery’s school meeting went…It really couldn’t of went any better then what it did!!!  Avery will be going to her home school..{the same school that the other girls are going to} and she will go to the full day typical k4 classroom..at first I just wanted her to go for half a day but then after talking about it in the meeting I really feel that she will get more one on one attention so it will be better..she will get in classroom resource at the beginning which means a teacher will come in and work with her on things that she needs more help with and then towards the end of the year they will pull her out of the classroom and give her resource..and in the afternoon the teacher works with each child one on one on areas that they need more help on!!  She will get pulled out for her speech therapy and her occupational therapy..Everyone was on the same page as to letting Avery showing us what she can and cant do…whew!!!!  Avery’s EI figured we made history in the school district that we are in…ha!!
I also met with the teacher that she will have later bc she wanted to get a feel of where Avery was and what she was all doing and what she all knows…it went sooooo good too!!  I walked out of there so impressed and feeling so good!!!!  She told me she has never taught a child with down syndrome so she has been reading up on how they learn and she doesn’t know signs so she said that over the summer she is going to be learning some so she can communicate with Avery..or be able to know what Avery needs when she is signing something..she is also going to take some pictures of the classroom over the summer and then drop them off to us so I can show them to Avery so she can get acquainted with the room and know what everything is..so if the teacher needs to hold up two pictures Avery will know what they are and be able to point to one of them as to what she wants!!!  I am hoping that we have this much luck with the rest of her school years
We will also be starting Avery on the gluten-free diet too bc her blood work came back saying that she has Celiac’s  disease.. I wanted to wait until we came back from our trip so my mom didn’t have to worry about what she can eat and what she cant..I have been reading and reading up on it to get a good feel of it….wish me luck:) I have had so many people tell me…oh I could never do that..that would be soo hard..Yes it is going to be really hard but if it was your child and your child was hurting bc of it you would do it..and God would get you through it. It is so amazing at how much u can really handle..There are many times where I'm like nope I cant handle that or think I'm not strong enough to handle all of this and God shows me that I am strong and I know he will never  give me more than I can handle…At times he knows I'm a lot stronger than what I think I am..I have came through so many storms/hurdles in the past few years and it has only strengthen my faith. So I have to thank God for sending me the storms and hurdles…This gluten thing is a yet another bump on our journey but we will manage and we will get through it..just like we have become/are becoming accustomed to the sleep machine with Avery..it is the new norm for us;) I realized it could have been a lot worse…her other blood results could of came back worse. Sometimes it is so hard for us to see any good when we hear an ounce of bad news but if you really stop and think about it..there is so much we should be thanking God for in the midst of our bad news.. So we Praise God for the other positive results that we got on her blood work!! 
Avery’s sleep machine is we are still battling too..she is not on it all night yet..we had another check up and the dr feels like we are making progress bc we have had a hard time finding a mask that fits her properly..and we backed back  down on the pressure a bit until she gets used to then we can bump it back up more..we just went from hardly any pressure to a ton of pressure and I think it was to much for her to handle so we kind of went in the middle..we also start the machine at a low pressure and then over the first twenty minutes it is on it gradually works its way up to the right pressure amount..in hopes that she will be sleeping by the time it gets to the right pressure amount. We are still going in many times and putting it back on after it falls off. The dr did bring up medication but Im not ready to go there..sometimes they have to use medicine to make her more sleepy so she will sleep harder so she will leave it on but then sometimes they are still kind of groggy in the morning from the medicine..been there and that stinks so I have been really dedicated to making the mask stay on as long as possible..we wont go back for another month so then we will see how much she averages with the mask on..so far she is averages still 2-3 hrs on a night.
(sorry I don’t have any pictures..I dropped my camera and broke it so I had to send it in to get fixed..its killing me too!!!)

Happy Birthday Avery

Did everyone have a good April Fools this year….we sure did and we have a hole in the ceiling to prove it..super long story but  I did succeed to trick Jared and Destiny with the ole kitchen sprayer trick and I almost got myself on my own trick more then once…HA!!  Well then the girls were on a mission to try to trick us so they almost got Jared with toothpaste on the toilet seat…and they got me with toothpaste in the wipes container..I reached in to grab a wipe and pull my hand out bc it is covered in tooth paste..urgghhh!!!  We tried tricking them with there toothbrushes too but they caught on to that one too..and it kept going on like that for the night it was pretty fun..next year I think there will be some kind of food trick for them at supper…lol!!!  We then tried to get them with many verbal tricks like we are moving to SD and it is suppose to snow tomorrow but they really are to smart for there own good…
Wow my little “Dolly”- Avery turned four a couple of weeks ago…I really cant believe it..



Its been four years already since the dr walked into my room to tell me my little baby has down syndrome (still remember it like it was yesterday and probably will never forget it)..its been four years of some struggles/frustrations of raising a child with down syndrome…its been four years of lots of medical problems…its been four years of doctors and more doctors..its been four years of therapies..its been four years of major milestones that she has accomplished and we have celebrated each and every one!!!…its been four years of love that I cant even describe..its been four years of  pure JOY!!!….its been the most wonderful four years of my life and she has taught me and this family so much about love, life and joy that I would not trade for anything…We love you Avery…Happy Birthday Dolly!!!!
So if you all have been around you all know that Avery has been pretty picky when it comes to food/sweets..so I really have had to think outside of the box every year for her birthday..last year  I did a circus cake so she could have the sucker bc then she didn’t like ice cream, cool whip, cookies, cake, cupcakes, frosting..pretty much anything sweet…Well in a year we have improved a little bc she will eat certain cookies and ice cream but that’s about it..So I decided to make a giant chocolate chip cookie like they have in malls..at the Great American Cookie..so this is what I came up with…I couldn’t go all out on the frosting I had to make sure to leave some with out frosting so she would eat it…

Avery blowing out her candle and then clapping for herself bc she did it…

She is a little excited to open her presents..you cant really tell though can you????:)

This girl wants to ride a bike so bad with her sisters but she cant figure out how to pedal it and gets pretty frustrated and then gives up.…we have a little bike with training wheels from the other girls and that is the one that she tries to ride so I seen this “bike” and thought maybe she would be able to peddle it..well she couldn’t figure out how to peddle it but she made it work for her so she could ride bike with her sisters!!!  Love that smile on her face..I would say she is pretty happy to be riding her bike!!


Pure Joy!!!!

She got a baby from Grandma that moves her eyes and cry's real tears and will quiet down when you put a bottle in her mouth..She was pretty excited when she seen that baby!!!



Destiny and Avery looking at her picture book that Destiny made for her..Destiny found some of her pictures that she had that she knew Avery would like looking at with certain people in it…and put it in a little photo album that she had…examples: wedding picture of me and Jared, a picture of all the girls, a picture of me and Avery, and Jared and Avery and so on…..

The hat is from Brielle…she wanted to give Avery a present too so she went through her stuff and found something that she thought Avery would like and wrapped it up..These girls are so awesome with Avery I love it!! Makes my heart just melt and I'm really glad that God blessed us with all girls bc really is there anything better then having sisters…especially later in life!!! Sisters share a special bond…



It seems like just yesterday that Jared and I went to this down syndrome camp and we went to a parents meeting there, where everyone just kind of talked about problems they were facing and most of them were problems with schools and I remember Jared and I talking later saying We have plenty of time to worry about that right now we just have a little girl  so lets just enjoy that before we have to deal with all of that..…Guess what I have coming up in a couple of weeks..Avery’s first official IEP meeting and I'm a stress case!!  I have knots in my stomach bc I am so nervous. I cant sleep…I toss and turn bc I'm just dreaming about how all of this going to go..What's an IEP???? ..it’s a meeting with all the big dogs (like 10 of them to me and only me)
where we set out goals for Avery..”Any child who falls under the Special Education umbrella in the school system has an IEP which means that their education in school should be tailored just to them and to them only.” Here is a blog that I follow where she kind of explains IEPS…go here..as you will see that’s where I found the comics..
They wanted to put Avery in school last year but they wanted to put her in a DD (development delayed classroom) with four other kids that were barely verbal and I said no way bc I am actually trying to get her to talk more not less so I don’t see where that was going to benefit her bc she gets all the socialization she needs right now from her cousins (there are a lot down here) and as far as working on preschool things well I can work with her on that at home still..Well now another year has gone by and here we are..I really don’t want to put her in that DD classroom again which I have a feeling they are going to push it bc it where you go when you are in k4 I guess with development delays..the school isnt even our home school…She would probably be with the same kids who are non verbal..so we are going to try to push for a regular k4classroom..
I am going to let Avery lead her own pathway and she is going to let me know what she can handle and what she cant. and I'm surely not going to let them tell me where to place my daughter when they don't even know her!!!!! Am I in for a battle?????

Well we will see in a couple of weeks…right now you can find me buried in a pile of papers..learning everything..and boy oh boy is there a lot of information to learn…like federal laws that were written to protect Avery..and all these letters for these laws that you have to keep straight…like LRE and IDEA and that is only the beginning..I have to be honest I started to sit down with the SC handbook for special education in front of me and  my laptop had IDEA law in front of me and as I start reading..I just loose it..cant control it…just bawling like a baby…I'm just thinking this is soo much crap yes crap… to learn and I cant do this. I'm not smart enough to keep all of this straight.. How am I going to learn all of this??  I am going to let Avery down…just feeling very overwhelmed/frustrated….but I HAVE to do this bc I am Avery’s only voice and I am her only advocate..she NEEDS me to do this for her!!!  It is just sad that parents are put through the ringer like this bc we shouldn’t have to fight for the best education for our children ( not that I'm saying that I have to fight yet..but just guessing we will have to from others do)  so I am asking begging for prayers of peace and understanding from you all..This is HUGE my first IEP meeting and I just need to feel peace that the Lord will get me through this with the best possible outcome for Avery.