IEP... One Without Tears

Last year our IEP was TERRIBLE. I ended up in tears and refused to sign and left. I ended up doing a visit to a school that was not very much further than our house and his home school. I liked what I saw at that school and know that the state law says that he should go to the closest home school. I was pretty confident when I went back into his IEP. I told them what I expected. The teachers still told me that their recommendation was life skills class. I refused. I wanted him in a mixed classroom.

A few weeks later we got a letter from the district saying that he was going to be BUSSED clear across the county. Literally. He would be on the bus for more than 45 minutes. If he were to have a seizure he would be transported and it would take me 45 minutes or MORE to get to my son. As opposed to the school less than 3 miles from my house. To say I was pissed was an understatement.

Soon our landlords decided to be jerks and so we did a little checking and off we left. Back to a state that we got what he needed. We did some research as to what district we wanted to be in. We were fine with the area we lived in before but I REALLY wanted us to be in Higley district. They were smaller and I felt they were able to offer more. And I was RIGHT!

We didn’t have a redo of our IEP when we moved to Arizona because Ty’s was barely done. So I signed on the dotted line and let them use Utah’s bench marker. We had to change and update stuff throughout the year to work for what Ty actually was at, and I was happy with the changes we made.

IEP rolls around and I get ready to go in. Except I know there will be no tears. His team is amazing. We have made a lot of choices this year and have really gone with him getting an education an actually learning. His “team” last year made me feel like I didn’t know my child and so having someone ( and multiple someones) that truly wants what is best.

SO.. What are we doing next year?

NOTHING!! We are staying and doing exactly what we are doing. OK, we are doing a few things different but I think they are for the better.

So, for the new things.

• We are adding more keyboard training. We are teaching him to type out his sentences instead of trying to put the flashcards into sentences. He can’t use his arms the way he needs to so why are we forcing something that isn’t there and letting him be behind? We won’t, so we will teach him something else.
• He is going to start Cane training. It won’t be immediate that he gets it all down. So it will be a gradual thing. He has to figure out left and right and directions. But he can and does maneuver around his school very well and pretty much on his own. He, apparently, just walks around and through everyone where he says "excuse me" and keeps going. So his O & M is going to be in full swing next year. 
• He struggles a little in math and in money especially. Money is so visual, that he has a hard time not manipulating whoever is helping him. He is GOOD. So we have an activity every night of coins and what is it. (I think he also gets a little confused because his brothers name is the same as a coin! That is the only one he gets right!)

He will still be in the cross category class next year and he will be ( hopefully) in the same class. He LOVES his school and his class. He goes to all the specials, in regular but he gets to play with the same ten people. He likes his little world. I like his little world. 

Meet the Teacher

Everyone started school this week.

But Tyler......

Ok, but the whole school district's kindergartners. He didn't care much UNTIL the bus came to make their route and get times. I took him out to met the drivers and he climbed on, sat down in a seat and when we tried to get him out he cried and cried and cried.

As I got him off the bus he told me that he was so sad because he wanted to go to "cool." He was devastated. I carried him in the house and he sobbed and sobbed. He said he wanted to go see Miss Melanie ( his teacher) and that he was suppose to ride the bus to "cool." That his note told him he could ride the bus.

Wednesday was our day to meet Miss Melanie. She needed to do some testing and see where he was and see how much of our day would be in the transitional kindergarten and how much would be in the traditional. Ty did really well and will be spending most of his social time in the regular class. He will also be in for a few other subjects as well.

Ty did a great job with his letters and numbers. I was glad that he did so well. He is funny and had everyone in there laughing ( as usual) and he was ready to stay and be at school. We headed to the office to sign papers and fill out regular registration papers. This is always an ordeal when we have to hand over a birth certificate. I always get asked if his weight is a typo.

After papers we went to the store. Ty was so upset that we couldn't go to the merry go round. He thought we were going to go see a merry go round. Poor kid, just can't catch a break. I mean really.. A merry go round.

School is going to be good for Ty this year. He will have all the therapy he can at school and we are making some major changes to his braille options. We will be keeping the therapy private as well. He really needs the PT. Poor kid.

As the mom: I can't wait for a routine and only one kid to drag to the grocery store.

Education with Special Needs

Sometimes having a kiddo with special needs has no perks. I do have to say close parking and door to door bus service can really rock. But what doesn't rock is that people don't expect much even if we as parents do.

"Normal" parents don't worry about IEP's, hitting milestones and the social aspect for kids that have extra needs. It generally comes easily and naturally as they grow and progress and get older. Kids that have delays are lacking something. They seem to advance in one area and fall behind or stay the same in others.

This year Tyler has done exceptionally well and he has exceeded his goals for MOST of the year. Apparently after our Christmas break he regressed in his gross motor skills. He stopped doing a few things that he was doing and even has gone as far as to not use one of his arms.

What makes me mad? We had parent teacher conferences a few weeks ago. NO ONE SAID ANYTHING. Christmas was MONTHS ago. I have NOT noticed anything. I am so mad that no one told me until today.

Apparently with his regressing in that one area he would qualify for summer school. While normally I would be totally stoked for it there is a catch. He can't attend for the other activities because he is only showing issues in one area. But what really gets me is that I asked to met with them in a week from Wednesday *( I have an appointment for Grayson that day) they have waited so long to tell me about it that they are coming up on the papers needing to be submitted.

My HUGE problem is that even though has made amazing progress he is going to be six. He is going to be in kindergarten this year. He can't write. It isn't possible with his hands the way they are. But he is suppose to be doing "regular" school? He doesn't talk like a 6 year old ( though today he told me he was sassy!) but he isn't going to get speech because he advanced this year.

How is he suppose to be in a Typical classroom with out the extra help when he isn't "really" up to par? I have accepted that he might not ever be "Typical" ( Please do not think that I don't push him or that I am degrading him in ANY WAY!) He can and will do EVERYTHING. It just is on Ty time. But give him the chance.

If he has to go for summer school and not be able to go to the other stuff, then I want to know what they are going to do to get him up to standard. I feel like he will just be blown off because he has disabilities. This isn't a chronically ill child that GETS better. Not as he gets bigger he will get better and stronger.. This is HIS life. This is how it will always be. There is no magic transplant, therapy, pill, long regime of drugs to fix this. His disability will always be there and will always be something that they look at and say " He is crippled, he is blind, he has brain damage" YES we know he has all those things. But he has a WILL to do it.

So in momma bear fashion we will be back at Shriners next week for some evaluations, starts of therapy and just MAYBE get in to have surgery that was due in October. We have another appointment with the Eye guy and with his physiatrist because we don't know where to go next.

I feel like I failed my son.

PS if anyone needs rides up to the city in the next 3 weeks we are going EVERY single day :(

IEP 2010!

Tyler's IEP ( Individualized Education Plan) recently expired so I had the chance to sit down with his education team and come up with new goals and things to work on for the upcoming school year.

Last year Ty was really new to the school and we didn't know how he would do in a classroom setting like the one we had him in. In Arizona, Tyler was in a class where there were only 3 other kids. 2 were a lot more severe but had physical challenges. He was not in a "almost typical" class there when we moved.

In Utah he was back in a typical ( as typical as Special needs preschools can be) and he was not doing as well last year as he was this year. So the goals were made and he did really well. This year, his goals were made and I am excited to see how they will pan out.

To start the year Tyler has made leaps and bounds progression. When we left the school year there was no words. He was making some sounds but nothing that really resembled words. With a new speech person she is really wanting to push Tyler to make the leaps and bounds that she wants him to make. She wants him as close to kindergarten ready and she can get him.

Educational goals for Tyler are SMALL!! He is doing what he should be doing as far as cognitively as he works toward kindergarten. He is basically caught up. Including his ability to count by ten to 100!! So the goals that we have for him are all social. Getting him to play with others, initiating play, talking about what they are playing so that he can be more social with other people that he needs.

Other people involved in our IEP is a Physical therapist and an adaptive PE teacher. They are going to work on Ty's core strength. They are also wanting to get him in the habit of walking in a straighter line instead of a drunk straight walk.

The best and most exciting news is his vision. They want to teach him how to use a CCTV. It is a pretty cool device that is going to help him learn to read. By Christmas they would like him to be able to sight read 20 words. I totally and whole heatedly agree. I KNOW he can do it. He is a very smart kiddo.

The CCTV is small, lightweight and quite cool. I think my mom could use one. She is almost as blind as a bat!! The cost of the device is quite minimal so it is very cost effective for what it will do and he can use it for a while.

The OT and Vision people will coordinate some of their efforts and work on his writing skills and if writing isn't going to be an option then they will be teaching him how to type and utilities the abilities he does have and keeping him up with the rest of the kids his age.

I was pretty impressed and the only change I requested was that we don't automatically write off Summer school for next year. So in December we will be reassessing the goals to see if we can get him the socializing.

First day of school 2010

Ty had his first day of preschool ( again!) today. This is year is year number three for Ty. He missed the Kindergarten cut-off by about a month. I am super glad we have one more year to try and "catch up." Since he is talking this year I am hoping that we are able to advance a lot this year.

I love having Tyler home with me. I love being his mom but I love when he goes back to school. He THRIVES on having a schedule and having other kids around. He didn't have a ton of therapy this summer so school is amazing for him.

This year we got a new bus driver and a new aide. She was great today and got all the way off the bus and up to the door both times. She seemed really nice. Ty is on a bus seat by himself but we will see how long that lasts.

He does that when I ask him if he will hold still. He says he "see" the bus. Notice his cute book about the beach. OBSESSED!! Mickey Mouse HAD to go to school with him.

The new bus driver. (I WISH I had thighs like that!) He was JUST fine with having her help him. He was OFF. He even for got his backpack which was coming with Dad behind him.

After he got on the bus I went to his school to see how he was doing. He was having so much fun. You could hear him talking to the teachers and counting and being a good kid.

He didn't have his glasses on and I had put them in his back pack. So I went into his classroom. Generally, I wouldn't go in because he has a tendency to not stay on task and then cry when I leave. I went and got his glasses and offered them to him and he said " nope!" So I left them next to him. I guess at some point they got them on because he came home wearing them.

When he got home he said he had fun and played. He was in need of a little down time. We had a picnic and watched barney. He wouldn't even kiss me or hug me.

After he destressed we went and played outside. In the afternoon we went over to play with Pey pey ( our cute little neighbor) and Tyler was in love with the bikes. I so wish he was able ot ride one! He had a great time.

We were out till just after 8 and after his bath he went into bed and during prayer covered his head up and was ready for us to go. For the past few days he has cried and cried when we put him into bed.

It was a great night. I can't wait to tackle my secret housekeeping list tomorrow.

An now a word from your Cervix

The preemie world is full of mothers who bodies failed them. Their cervix didn't stay shut and out came their baby. Some came too early.. Some came early but were able to be saved. Some they don't know.

We fall in the category of we don't know for sure. So, google and lots and lots of questions have been asked and looked up. I am horrified that when we get pregnant again that it could be my cervix and that baby is put at risk.

To combat some of my worries our OB and his team of Perinatologist that we have will be working to do a Cerclage ( or stitching my cervix closed) around 13 weeks, in hopes of getting us much closer to the 34 weeks. ( 34 weeks because we are at increased risk of Uterine rupture)

A new "thing" that has come out in the OB world is a cervical revolution of sorts. It is called CervoCheck.

Cervocheck is a device that "accurately detects the signs of Preterm Labor that both avoids unnecessary intervention and promotes timely diagnosis of treatment."

It is a device that is inserted into or around the cervix that will send signal to your doctor when movement and shortening is detected. They can then go forth and monitor more closely allowing what could have become a very early birth to continue on to full term. It is a wonder scientific breakthrough for those who have suffered through a Micro-preemie birth or problems associated with the cervix.

Coming soon- Book Review

I am an avid book reader. I will pretty much read whatever I can get my hands on. I don't have a genre that I stick with and I don't limit myself at all. But most of all if there is something that I don't know much about I turn to reading and researching to find out all I can about the subject.

Recently I became friends with a women who just happens to be a OBGYN and a Author. She recently released a brand new book on a subject that I am VERY interested in.

Prematurity

So, coming soon a Review on the Preemie Primer.

The appointment

We finally made it to the orthotist today. We had to reschedule because of our sad run in with Mister Crabby and Sick pants. They gave us a good hour because Ty is their "Houdini". He is the ONLY patient of our wonderful orthotist, Brett, to be able to pull out.

We got their and we looked at all the options for Ty's feet. He has grown SOOOO much. He is now almost grown out of his 2nd pair of braces in less than a year. Brett thinks he has grown in the last few months. Because of his growing he is noticing where his spasticity is. He is NOT a tight child but the spastic part of his leg is making it so that it is misfiring and making it so that he is pushing his arches down. He is having a hard time getting his walking down. He doesn't use his tippy toes like he use to. That is REALLY good. So now we are facing a much larger challenge.

We took off the top part of his braces and he is only going to use the bottom shoe part. He needs a graphite brace ( the picture is what they look like, and they don't usually have little little kids like Ty wear them) but no insurance covers it and it is a few thousand dollars. So we have to go see another kind of Doctor. This doc is book out till Feb. of 2009!! He needs the braces before then and this doctor is the only one that does Botox. So we are looking at doing all we can to get him in sooner.

We go back to Shriners in November and see what they orthopedic doctors say about his growing muscles and his legs as they get bigger. Unfortunately we are on a path that we thought we would "outgrow." They are still projecting walking independently and without his walker around 4.

I am so proud of Tyler. This can't be an easy thing for him. It also makes me more aware of the things that are said by others. Especially ones that are innocently said. It is a hard path that we were shoved down and we are entering a new territory that I have never been on and I am at a loss as to where to go from here. I am more aware of the limitations that we will be facing. It is a very new and real thing for us. For me. Something I will have to learn to do.

My education had paved me a way to help Tyler. But it seemed to have ended around three. I don't know how to help my baby. I have no way to shelter him any longer. He has to face the world.

So, ( I made it all night without crying and being sad) we are on the journey that we don't know where it will take us. I can't bubble wrap the world. But I am trying to share our knowledge with others.

Please be kind. Think before you say things, stare or make jokes. Ask questions if you don't understand. Ask what the parents need in your ward, church or work place. Most of the time they need a friend. They need someone to share their sad times with. And most important, to share the good times with.