Sunday, April 29, 2012

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 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 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 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… 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 one told me how alone this walk was going to be at 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… 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 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 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 stomach is in knots..I woke up all shaky..been shaky all 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 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 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 least two months post op...but will update the rest maybe later this week..after i can breath..

Friday, April 20, 2012

This last week

So the last two weeks we have had a few dr appointments for Avery..we arent done yet but I thought I would update on the ones that we have done…
Avery had her hearing rechecked and everything checked out good. It was actually great..No signs of fluid in the ear and no signs of even a slight hearing loss. woohoo!! That is such great news..especially since she has had her tubes out since last October and still she hasn’t had one ear infection since.
Avery also had a recheck up with the eye dr. We are still just going to closely monitor her left eye. It turns in sometimes but he feels like it only does it when she is looking up towards something..well it mainly does it when she is looking up. So we just go get it checked on every six months to see if it is getting worse or better but it has stayed the same. Her sight is good too..still borderline for nearsighted.
She also had an appointment with her orthopedic doctor. He did some x-rays and will send them up to the doctor in Boston and we will wait to see what he has to say but he had told us to expect at least another three weeks in the cast. The bone was growing together very nicely he that is good news. Another three weeks is not so much good news. Today marks the one month mark..She has been in the cast for four weeks already. In some ways it has gone by fast but mostly it has went by really slow! Her one incision has healed very nicely but the other one must of ripped a stitch or something on the it keeps breaking open and then it will scab and then break open again..the dr said that he wasn’t worried about it..most scars heal from the outside in..but since this one broke open..he has to heal from the inside out now…hmm..interesting. We don’t know when we will have to go back up to Boston…he is going to ask..I don’t think we will have to again from my understanding until the next surgery but I could be wrong. We are going to try to get the other side done before the end of the year to cut down on our costs. Once when we meet our deductible and pay our maximum out of pocket expenses then we are done for the year so this surgery is going to put us there and so we are thinking if we get the other side done then we wont have to pay anything for that one since we have already met our maximum.  We shall see if it actually works out. We do have to wait six months from her first surgery date to do the other side he did tell us that.
Avery also had a dentist appointment and everything looks cavities and no growth from the teeth that she was missing so she obvious will not get them baby teeth I guess..strange! but you could never tell she is missing teeth..they are all full on the top and bottom…its going to be a mess when her permanent teeth come in I think.
Avery also had an appointment/ follow up with her sleep doctor. Everything is ok.not great just ok. She isnt doing as good as we were thinking on the CPAP machine. I thought she was doing good since we got back after being used to wearing it all night in the hospital..but I apparently she is pretty sneaky..and is taking it off shortly after I put her to bed..I usually check on her before I go to bed and then we put it back on..and she is swiping if off then too..I have a swiper on my hands…lol! He brought up medication again and im not comfortable medicating her…but we will just keep chugging along and see if she improves..maybe I do need an alarm on her machine so I can put it back on all night and get no sleep…but at least one of us was getting a good night sleep..
whew…that is it for now…next week she has her regular check up with her pediatrician and also with the dietician and feeding doctor…the one that has been monitoring all of her aspiration issues in the past..
We got hit by a HUGE hail storm a couple of weeks ago..we have lots of damage..Our house needs a new roof, new gutters, one side of siding, and some drywall repair in our house because the roof leaked. About 13,000 in damage. Both of our vehicles were almost totaled out by the insurance adjuster…couple hundred away from that.. Im just thankful we have insurance on all of it and will cover it all. But here are some pictures of the storm..I did video tape some of it too and we watched it back the other day and you couldn’t even hear any of us talking bc the hail was hitting the house so hard. I thought for sure it was going to break a window. All of my outdoor plants/ flowers are damaged. We even took cover once because I thought for sure it was a tornado..I couldn’t see anything and all of a sudden I see leaves just whipping around..It is almost like it stalled over us…and then came back again..
Don’t worry this was after the storm…;)
Golf ball size hail…
this was my hydrangea which I was all excited bc it was coming up good this year..but nope not any more!
This is our pool box on our deck…

Wednesday, April 11, 2012

Avery update

How is Avery doing?? That is the question I have been hearing from everyone lately..and I just realized that it has been a long time since I have updated you all on her..and I'm sorry for that..She is trying to adjust..she is watching some tv..and playing with her Ipad..but a girl can only handle so much of that. She gets frustrated that she cant run off with the other kids and play with them. The last time we all got together she kept saying out..out..out that was hard..
Her teacher came by yesterday to paint with her and she really enjoyed that. She will be getting 5 hours a week of in home from the school. So between her teacher, speech therapist and her resource teacher they will split that.
She is off of her pain medicine so that is really good…especially since it made her a little loopy..I was worried that she might get addicted to them or something for being on them for so long but nope..She is still getting the colax and the miralax daily. We really don’t want to let her get plugged up bc that would be a bad thing. So we try to keep her pretty regular every day.
She isn't a fan of the wheelchair..she would way rather sit on the couch…I'm not either..the thing is a pain to lift up into the back of the car…when we HAVE to leave…She doesn’t leave the house too much with just me I don’t have to lift the chair..We moved her into her own room again for awhile since she doesn’t have to get up for school when the other girls get up…she is sleeping in a little bit longer that way.. but she still seems very tired..She must still  be recovering from the surgery..apparently it really wiped her out. She likes to take a nap during the day..Likes to..yes..I ask her everyday if she is ready to take a nap..and she says “yes”…and so then I get her all comfy on the couch..and she falls asleep right away..For the time I try to leave her down stairs for the most part and let Jared do the major carrying her up the stairs..really wish we didn’t live in a two story right now but we are making it work. But while she is sleeping the twins usually nap at the same time then so that leaves me running around like a mad woman and cram as much stuff as I possibly can in the little about of time that I have..its not long me! I have piles of piles of clothes that need to be folded..Im lucky just to get them washed we are doing’s a switch and dump thing we have going on..Where is my mom who loves to do laundry when I need her:-) Destiny needed some money yesterday…so what did she do to earn some money…well fold lots and lots and lots of clothes..without ONE complaint!!! Yes..score! Win win situation!!
Our first outing as a family was to Good Friday church service..which didn’t end up very good..Avery didn’t last through the whole church service..Jared ended up taking her out in the middle bc she was crying..not sure why…But Easter Sunday did go better..but just challenging..especially the bathroom..The whole bathroom situation is just tricky all around any where we are at..whether it be home or out in public..and I still cant get her to use that funnel I bought along time ago..little stinker..She can sit on the toilet but u have to have some place to lay her down so you can take of the GIANT diaper then sit her on the toilet just right..and we have to shield her with a flushable wipe so it don’t spray out..and that way it goes down in the toilet.  We have lined the back of her cast with bright pink duck tape to help protect it from getting any pee  it..that way  it just wipes right off and it wont sink into the cast.  Then lay her back down to put the diaper back on her..why the diaper you ask??? Well she has to have something to protect her down there and cover her up..bc underwear don’t fit on her..and she just cant go naked down there..the girl don’t know how to leave her free leg down..she's not very lady like yet!!!Winking smile
This month is also just happens to be Avery’s check up month which means we have at least three appointments a week for the next three weeks..every six months its like this…so I will up date as we go to them…This week..we have sleep dr. and hearing. But it might be a good thing bc that way  I can get out of the house for a little bit..otherwise it is IMPOSSIBLE for me to leave..with a wheelchair and two little two year olds..but then that is a lot of lifting that stinkin chair by myself..which I hate to do..the back of my car needs a ramp…haha! I  cant reschedule the appointments either bc we wait months for these appointments and if I rescheduled them then I would probably be waiting six more months for anther appointment.
Every little thing seems like a BIG chore to do..a sponge bath..that pretty much takes two hours….she doesn’t like the top cast part off while she is getting a sponge bath so she cry's pretty much the whole time…and then we have to change her dressing which she really don’t like..just to comb her hair…at least an hour…she sees me coming towards her with the brush and her head takes cover..she is no longer visible..she gets a big ole rats nest in the back of her hair EVERYDAY….and I have no idea how to make it go matter what I do it still happens. Unless I want to cut her hair really really short and I'm not ready to do that!!! and I know it really hurts to comb through hurts me just combing it..
Her therapists have mentioned that she seems to have went back some..a lot weaker..Yesterday they came and she didn’t want to do I went in there to try to get her to do some of the stuff that she was suppose to be doing and she just started crying..not screaming…heartbreaking something was the matter..I think she is just so confused and not sure of what is what anymore..Its hard! Way harder then what I thought…Last week was actually really nice with my older kids home from Spring break but they had to go back to school this week..and that’s when things changed..that’s when things got crazy..really crazy. For Spring Break we didn’t do anything..we had a picnic the one day..and the girls helped out and went swimming in cold water..the water in the pool still isn't warm..we had a very lazy week at home..and that was ok with all of us…we all needed it..
Since she is not going to school while she is in the cast I  have started to work with her a couple hours a day…bc that is a long time to miss we have school every morning.. {its not EASY at all with two little stinkers!!!!}  This is what we do with her letters..I found this big board at Walmart..its actually an oil drip pan..and then I went to the dollar store and found all the flash cards and made them magnetic..and then she has the magnetic letters..and we go  through all the letters..and what sounds they make..she knows almost all of the letters not the sounds..I was shocked..but proud!!! Maybe she will be ready for kindergarten next year..
Same thing with numbers..she knew most of them too
and shapes..I name a shape and then she gets it and matches it up to the picture…she knew them all except one..
For the colors they are all laid out and I tell her a color and she picks it out and sticks it on the board..she still messes up orange and purple..but knows all the other ones and signs for the colors.
The dollar store also had some great window clingy things…so I got some animal ones..and also some color ones.. {check out the picture..exactly what I am talking about..her not being very lady likeWinking smile}
I also got weather ones..we are just starting to work on them..bc in school they always seem like they have a weather picture for there calendar..
We also are working on one letter a day..and so we started at letter A then the next day will be b and so on..and one number a day too..that way the letter and the numbers get enforced a little more too.I found a couple of great websites to print off worksheets off to help..I'm sure there are other great ideas out there too..but as we get used to this..we will do more.and maybe more crafts or making things too..but i need to learn how to balance it all out..ill learn I'm sure..
I miss not being able to run to the store if I need something..I have to do all my running at night when Jared gets home so he can stay with the the kids and Avery..I hate doing all my shopping at night too bc it makes for a long day!

Tuesday, April 10, 2012

Happy Easter

Hope everyone had a blessed Easter and remembered why we really celebrate Easter. He is RISEN! He is RISEN indeed!! 
I try to get a family picture every year..and every year I have to always twist Jared's arm practically but do you think I could get a really good smile out of him???!!! Nope!!  This year we had to include the wheelchair too..not ideal But I guess these will have to do… …here are some pictures from the day..
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Yeap that would  be Jayla trying too look up my dress..but this was the only one that turned out half way decent of us this it just adds characterWinking smile
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All the girls in there Easter dresses that I made for them…this is the second year that I have been making all there Easter dresses..and I really enjoy it..this time I gave myself WAY more time to get them done…last year I was up until midnight the night before Easter…this time I had some of them done before Avery even had her surgery..
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Destiny-10, Brielle-8
Jianna & Jayla-2
Some of the cousins playing statues…
Quick..act like you are throwing a basketball..
a couple cousins..
Lining up for the egg hunt…ready..set..go!
hmmm what do you have in your basket????
yummy candy..the best part..