This is why we fight so hard…

This is just a small sample of Tyler over the years. Enjoy. 

THANK YOU!!

I want to thank everyone for their prayers and good wishes. I spoke with the advocate today, or parent support specialist as she like to be called, and she is totally to board to help. She is very firm and doesn’t like to be told “no” like us so this should be good. We spoke for 45 minutes today and she had me and my personality nailed to a “t”. She was just so wonderful to talk to. She did mention the reason we keep getting resistance from school is because most school districts do not like parents like my husband and I. So basically the more involved you are, the more knowledgeable you are, the more the school district resents you. They like the parents that sign the IEP’s right on the spot and then take word for word what is presented at the meeting. They don’t like to be questioned or put on the spot so to speak.

I cannot stress enough how that is so NOT how you should be. Go to those meetings with questions. Go to those meeting with a binder with all the materials you have received. Go to those meetings with a notebook. Go to those meetings ready to fight!  We have done this twice now by ourselves and like I mentioned, I felt it was time we looked at getting help. Something she is going to help us with is writing a vision statement for Tyler. I looked at his current IEP and what they have in there is basically pathetic. But this is not something we knew to pay attention to. 

Once I meet with her, I will put up examples of his current vision statement and what she wants his statement to be for next year so everyone has an idea. I cannot tell you all how excited I am that this is going to work out. I had a girlfriend over who is a special ed teacher and she was excited for us too. She said how mad the team is going to be when we walk in with this woman. but we have to. Tyler needs us too! 

So thank you all again. This has been one of the best days in quite a while! Please keep us in your thoughts and prayers though. We still have a long road ahead.

Our walker debut

As promised, here is a quick video of Tyler in his Gait Trainer this weekend.

Started the walker

We started using the new walker with Tyler over the weekend. It’s from school until we get our own. What it is, is basically his Rifton Pacer Gait Trainer stripped down. I tried it with him last weekend and failed miserably. I, of course, was also trying to have him use it without the seat. Silly Mumma trying to actually make him work! So we tried it with the seat and he was in it for over an hour each time we put him in!

Now, was he using it correctly, not really. He would sit and only push off on his right foot. So we did have a bit of a battle as we would make him walk forward. He would scream and scream with no tears so we know it wasn’t serious . He would also throw a complete fit every time he became stuck in a corner. I would try and explain he needs to problem solve but to a raging 4 year old that just wants to move, that wasn’t sinking in.

Like we told the teachers today, we will keep doing the “Tyler’s way/Mumma and Dadda’s way” for a bit until he gets used to it. Slowly we will work him harder and harder. I am just THRILLED that he doesn’t resist it like he used to when it was the Gait Trainer. He did not like being strapped in. Maybe we are turning yet another corner, we will see.

Ended on a good note.

Tyler is sleeping peacefully right now and I am not too far behind.

I am happy to report that Friday he had a great day in the classroom. He did have one small episode during circle time but the rest of the day seemed great according to his sheet. The teachers actually put his prone stander in the classroom and he did AMAZING. One of his little classmates came over and played bubbles with him in the stander. I couldn’t have been ANY happier to read that last night! I knew he would be ok in the room while in the stander. It gives the kids another way to play with him! 

Keep it up sweet pea! This will only help our battle that will be coming up in a month! We are so proud of him.

Small Advocate Update

Well good news is the advocate called back. Unfortunately she left a message as I wasn’t home. So I will try calling her back today. She did say she would be willing to help

So thank you to all for good thoughts and prayers. Hopefully this will get us in the right direction!

On a side note, Tyler was so happy to go to school today. Laughing and giggling. It completely melts my heart when he is like that. I told him he was going to have a good day today and he smiled. Here’s hoping!

And the saga continues…

I keep telling myself that SOMEDAY life will be just a bit easier for us. I left that message 2 days ago for the advocate. Still haven’t heard anything so I am going to call again. And school CONTINUES to be a thorn in my side about daily communication.

They have come up with a spreadsheet for certain activities during the day. They want to monitor the number of head banging incidents, biting incidents, etc that take place and during what activity. Everyone is trying to help him out which is great. What is COMPLETELY frustrating is they are trying to tell me its too hard to write down notes and monitor his behaviors when its one person with him. We like to have small notes if someone plays with him, or if he was particularly good/bad. Just little snip-its of his day so we can talk to him. We are not asking for the moon. I am having the hardest time trying to wrap my brain around their lack of cooperation.

I have said this in previous posts, what if this was their child? They would want the same thing or something similar. They would want to know what was going on with their child daily. Until he can fully communicate with us, we need something to talk to him about. I am not just going to pick him up from school, and not ask how his day was. I am not going to just ignore the fact that he was somewhere away from home for 3 hours. This really isn’t rocket science!!!!!!

I am starting to question whether this is the best place for him. Our other option is Perkins which is well over an hour from our house. This wouldn’t work on so many levels for him. He would have to get up so early to eat breakfast and get ready to get on the bus. Traffic to that school is horrendous and he doesn’t do well in traffic. He would be there much longer than he is currently and would be unproductive after a certain amount of time, especially given how early he would get up. And the list goes on and on. But I don’t know how much more of this daily bantering I can take.

I have to be strong for him and I know it is in his best interest to be there. I know that typically developing children can help him. I know that he isn’t the first nor the last non verbal child to go through an integrated preschool. I know everyone just needs to come to a happy medium and this will all pass. But we really need to find that sooner than later. My patience is running quite thin. And they do not want to see the angry Kelly. I may have a bit of an Irish temper that can get ugly if pushed too far. I am focused on him though and will try my damnedest to not let it get the best of me.

Oh Tyler, if only you knew what Mumma and Dadda go through every day to try and help you. I know how frustrated you get yourself because you can’t do things and you can’t get your point across all the time. My hope is that someday you know that we are trying our very best to make life easier for you. We want you to live up to your fullest potential and prove to everyone that you can. You have endured WAY too much in your 4 years. School and therapies shouldn’t be an added stress for you. We love you sweet pea. We will reach a place where life will be simpler and easier for you. I know we will. Until then, have patience with Mumma as I am frustrated people can’t see how important these little requests are that I am asking of them. I am frustrated that they can’t remove themselves from their jobs and see how these things can only help you. I am frustrated that they can’t see you are making strides slowly but surely. I am frustrated they can’t see how truly wonderful you are and that you aren’t a difficult little boy (all the time ). Keep being you sweet pea. Leave the fighting to Mumma and Dadda as you have fought hard enough.

Swimming party update…

Well as suspected, my little fish was just that, a fish. The party was 2 hours. The first hour the kids were in the pool and he 2nd hour was pizza, cake, and presents. Tyler stayed in the water the whole hour! He fussed at first but that would be because he didn’t know where he was and the water was cold. But once he figured it out, he was off and having a great time. He didn’t have the cake and pizza after because he had already eaten. But he enjoyed playing, walking and hearing his friends. Enjoy the pictures!

 

Tyler and the girls

 

Loving the water

 

Group Shot

Fingers crossed please?!?!

I just left a message with a woman to see if she can become our advocate for school. Tony and I have really taken on the whole school/IEP (Individualized Education Plan) portion of Tyler’s life ourselves. When we were entering this phase we had heard a lot of horror stories on how we would need an advocate, how we wouldn’t get everything we needed for Tyler, and that it was always going to be a battle. When we went to his very first meeting, we said we needed PT, OT, Speech, vision therapy, and services from Perkins from their deaf/blind program. And never once was an eye batted. We thought it went too smoothly and was too good to be true. But he has had these services.

As you can see though, even in these early weeks of the new year, we are getting more and more frustrated. His next IEP review should be coming up in a month as his run from November to November (birthday to birthday). We want to have someone who knows the laws, knows what Tyler should and shouldn’t be doing, knows what Tyler should and shouldn’t be receiving, and who doesn’t have an emotional tie to him. This woman that I left a message is supposed to be one tough cookie. I am hoping she calls me back….soon. I want her to come meet Tyler. I want to give her all my notes and binders to review. I want to go in ready to this next meeting and feel like I don’t have to do the brunt of the work.

So say an extra prayer for us tonight and send good vibes our way. Tyler needs it!

Welcome to Holland.

Many of you may or may not have read this short story before. I have received a couple copies of this from friends who also have children with special needs. As I was getting a box and wrapping paper for the party last Saturday, I saw this on the shelf and reread it..especially since we were headed to a party where the birthday girl also suffers from special needs. It can be a tear jerk-er, so have tissues ready. This is a beautifully written story about being a parent of one of God’s little miracles:

Welcome to Holland

by Emily Perl Kingsley

“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandt’s.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”