View Full Version : Can't do it anymore

June 22nd, 2004, 08:15 AM
Let me first apologize in advance for any miss spelled words or confusing sentences as I am typing with tears in my eyes...
As most of you know Seth started Kansas State school for the Blind summer program last week. with the exception of a couple of days, Seth screams and cries when the bus pulls up and says "I hate my new school the kids are mean to me" the days he doesn't cry he is still reluctant to go but still goes. Yesterday I talked to his teacher about how he is doing with playing, and acting happy she said "they all do parallel play and don't really play with each other and Seth seems happy when he is here, he doesn't usually cry at school" It has been a week and still he screams and cries whenever we talkk about school. At first he was saying " I can't go to school because I can't see the kids" or "I can't go to school because I not feeling well" as well as a hundred other reasons why he shouldn't go to school. I talked to him about it last night and he was very stressed out and told me that the kids don't play with him and asking me "if I get sick at school my teacher will call you and you come get me and take me to the doctor?" Whenever Seth tells me he's not feeling well and I think he is fine and he just doesn't want to go to school I always tell him "I will call your teacher at 9:00 and if you still aren't feeling well then I will come get you and take you to the doctor" thats where he got the whole if "Im sick you will come get me from school" idea.
:cry: I am so sad right now because I have to force my 5 yr old to go to a school that he hates and is stressing him out majorly. So I am seriously thinking that today will be his last day at KSSB. He is used to kids playing with him and having fun at school and even when he tried the excuses last year when he was in preschool he NEVER had so much emotion behind his words and when I would go check on him he would be laughing in his classroom and having fun. Not with this school. I went up to see him on Thursday last week and stood in the hall way and just watched for a minute and (they were all sitting at the table getting ready to color) he was just sitting there not talking to the other kids just sitting looking tired. :( when I went into the room he wasnt excited to see me he smiled but not a Seth smile. Just because he doesn't cry when he gets to school doesn't mean hes happy and if hes not happy (at least a little) then its not worth it. Here in our town if he goes to regular public school they will give him braille and oreientation/mobiliy therapy 2-3 times a week instead of every day all day at KSSB. Thats a big difference BUT he is only 5 and maybe we shouldn't stress to much on braille right now. With the MPS whos knows how long he will even be able to read braille anyway. If he is close to a big print book he can see the letters well enough to learn to read, for now. So maybe KSSB isnt the "best" place for him right now...maybe later when he is more mature.
The question I keep asking myself is "what do I do?..KSSB is the BEST place for him educationally but a regular school is best for him emotionally" I hate this it is so hard to watch him scream as the bus pulls away and knowing that he doesnt play with anyone or have fun (like he used to at his old preschool). Mybe the somber attitude that he comes home with everyday and the increase in aggression that he has everyday are my warning signs. Seth is, like all MPS/ML kids, is a fighter and lives with stress everyday so why should I add this school if I don't have to keep him there it is obviouly stressing him out way to much. I don't expect him to run to the bus and laugh all the way to school BUT I do expect that after a week of the new school that he would atleast find something he likes there. Is that to much to expect? So just as I named this post.......I CAN'T do it anymore. there are so many times in an MPS/ML childs life that he will have to "cowboy up" (as my family calls it) and be a big boy when he has to do things/medical tests that he doesnt want to do that may stress him out. So if I can relieve some of the stress by taking him out of KSSB then maybe I should, that is one of very few things I can do as an MPS mom to help make my sons life easier.

:frown: Am I being to emotional? I just don't know what is the best thing to do for Seth. I love him and it hurts so much to force him to get on the bus and go to a school that he hates (sorry I think I already said that in this post :roll: ) Maybe I am over reacting and I am sure you all will be honest enough to let me know :) and I need that right now. Maybe it would be better to wait till he's bigger to make him deal with the reality of being visually Impaired.....I know he doesn't see himself as a VI kid, that is the emotional outcome of being an MPS child. seems like this post is getting long and I need to stop :cry: and get over it. I have had my 20 minutes of emotional breakdown now its time for me to Cow girl up" :) and look at this with out emotions (well try anyway). Thanks for reading me cry like a baby I am feeling better now I just needed to write it all out to my MPS/ML family.
Misty :)

June 22nd, 2004, 08:55 AM
this may not make a whole lot of sense, because i did just roll out of bed, but i do have some thoughts for you, just as someone who themelves i visually impaired.

I went to public school my whole life. even in settings where there were other special education kids in my classes that were considered "adaptive", i was usually the only visually impaired child. We had a few times a year when they had something called the star program and all of the special education kids from the county would go in groups to places like the circus or bowling and have county wide special olympic days and such, but that was th only time I ever "saw" (to be figurative here), any of the other visually impaired students.

I dont know how my life would have been different, if i had learned the things everyday, but i know that the public school was awesome still, while frustrating at times, but still good at providing the services required in my IEP. I wasnt surrounded by the culture of being blind, but at the same time if i had had that, i'm not sure what it would have done for me or against me.

I went to a high school of 4,000 students in inner city Atlanta. there were 70 different nationalities represented there. I was surrounded by diversity everyday. sometimes when they took me to the school for the blind just for a show and tell or when my vision teacher took me there to teach me how to use various devices, i wondered if those kids ever saw kids that werent visually impaired. when i went to the lions camp the kids there were sometimes the same way, they had these attitutdes sometimes that spoke volumes of never having seen or been around anyone that didnt have the same disability as them.

I dont know what the right thing for anyone is, because everyone is different. i know that even though i was surrounded by kids who had multittudes of problems, i leafned that everyone has disabilities, and abilities, strengths and weaknesses. i learned that being different doesnt always have to be bad things, i also learned that the real world is cruel, that not everyone is going to understand and is sometimes going to act in ignorant and harsh ways to things that make them uncomfortable.

I guess I just wanted to put those thoughts out there for you. I'm not saying one way or the other, I'm just tell you my experience, because thats all i do know. life has many opportunities and sometimes they look better from the outside, but when it all comes down to it, you have to weigh it from the inside, and take a good look at what is really important.

**smiles and skitters off before i scare people off by talking too much**



June 22nd, 2004, 09:12 AM

You are not emotionally overreacting. This is the piece of you that you have loved since you knew he was coming.

The new school on top of the new blindness may be overwhelming for Seth. It sounds, and in my view perfectly normal, as if Seth has not quite accepted or come to terms with the blindness. Since he can still see large print books, he may think, hope, that his eyes will become fixed and will get better.

You told how Seth was acting during the table coloring. How were the other kids acting. Were they talking to him, or engaging him in their group. Does the teacher have any sessions of directed group play, so that everyone plays together or works together on something?

My Christopher had to be brought into a group in the beginning. He could see, but he would not initiate anything. He would stay on the edge of the group and watch until he was comfortable enough to participate except he was still a follower. He is still getting the confidence to initiate.

Could you arrange to view Seth's whole day at school without letting Seth know you are coming? Maybe that will give you a clearer idea of what is stressing Seth. Maybe because of the class program, Seth feels the kids are mean to him because they don't play or interact with him. Maybe the teacher needs to ask a slightly older student who has been with the school for a while and has a kind spirit to act as a Seth Friend. Instead of the teacher guiding Seth into the activities, the student would do the guiding. It might feel to Seth more as if the students want to include him instead of the teacher forcing them to. It will also give Seth someone to relate his new blindness to.

With Seth being five, and maybe not accepting the blindness yet, a step back to public school and away from the stressor he is feeling may be what he needs until he is more comfortable.

You will make the right choice for Seth. You are a wonderful mother Misty. :group :flowers

P.S. I just read Keara's post. It was very well said. There is no perfect solution as everyone is different. You will make the right decision for Seth.

June 22nd, 2004, 09:34 AM
:cry: Thank you Keara, It helps me have a view of this from a VI person with experience.

Seths teacher told me this morning that they don't do group play and I know that is what he is used to. the kids in the class were just sitting at the table, not talking...except one girl was talking to herself in a repetitive way, one child was moving around and messsing with everyone elses papers. the classroom doesn't have many toys (its normally a big kid room) and it is set up like a 4 or 5th grade classroom.

Darla,I shed a few tears when you said:

he may think, hope, that his eyes will become fixed and will get better.
Because he has asks me everytime we go to the dotor for any reason "is the docotr gonna fix my eyes" so I am sure that is a big part of him feeling like he doesn't belong there. One of the latest changes in Seth the past few days is he is not eating much of anything....THAT is NOT Seth. He has skipped breakfast the past 2 days and hasn't been eating snacks....that was the last straw for me. The teacher agreed that her room is not structured like a preschool/kindergarten class and she said "He seems happy her, I mean he doesnt laugh alot but he smiles" I said "thats not Seth seth laughs and actual looks like he is having fun, the fact that he smiles doesn't mean he is happy" The teacher normally teaches the bigger kids so she isnt an energetic/vibrant preschool teacher. She is very nice but not really animated like his previous teachers. :frown: .
I am going to get Seth in a little bit because I can't leave him there.....The only reason I sent him in the first place is because the bus was outside waiting and I wanted to calm mysellf down before I made a final decision about taking him out of the summer program. Now I am regretting sending him. I am trying to find someone to watch the other 2 kids so I can go up there (its an hour drive) and watch Seth for a little bit through the hall window when he doesn't know Im there, just to see how he acts when he doesnt know I'm there and so I can talk to his teacher without the baby fussing the whole time cause he can't get down and run around.

June 22nd, 2004, 10:32 AM
:( Misty I'm so sorry Seth is struggling with his new school. In my opinion (and it's just that...my opinion), it would kill me too. Kaity was not happy in her preschool. I hated it...it broke my heart. Once she got into public school where her needs were met she was so much happier.

I say you do what is best for Seth! You know what makes him happy and when all is said and done you will be glad you did it.

A mother's sense of what is best is always right. I'm a firm believer in that! If you are getting the sense that something is not right then make it right!


June 22nd, 2004, 11:29 AM
:kiss: Misty. I think you need to do whatever will make Seth happy. You are all just learning to deal with the VI on top of the MPS dx. That's a whole lot to deal with in a short amount of time. You know Seth better than anyone. (((HUGS)))

Paulina Jump
June 22nd, 2004, 12:33 PM
I agree with Kris, you have so much coming at you at once. I have a very hard time sending Andrew to school, in fact we put him on home bound school last year. Alex starts pre-school in Oct., I was thinking about sending Andrew back when Alex starts and get a job at the school so i can watch their every move. Don't get me wrong they are great with Andrew, but i have a hard time dealing with it. ((((((((Misty)))))))


Laura Brodie
June 22nd, 2004, 01:05 PM
Misty- Your instincts are right-you are his mum follow them once you have checked it out one more time. It doesn't seem right to me that its set up for an older more formal age group -some special schools over here do that too -it makes me blaze :mad: :mad: it means it set up for the Teacher not the child(soz The teacher comming out in me)
I know your first priority is that Seth is happy -stick with it you can't go far wrong love and :group Laura xxx
PS Keara your an inspiration :kiss:

June 22nd, 2004, 03:19 PM
:cry: Misty,
I too am crying reading about the obvious change in Seth's demeanor. You know how he acts when he is happy and content. Even with the changes he has gone through and the possible hope he holds onto, he is still the child that he was with just more challenges. If he does not seem like that child to you then you need to listen to your heart and do what you think will make him happy again. Holding onto hope is good for everyone, until it makes it impossible to live today. If Seth can't be happy in this fairly VI only setting then maybe it's not worth it, the extra advantage will serve him nothing if he is not happy with who he is. I can't tell you which way is right, I can only say follow your heart and love him the best way you can!!! That is what made Seth the Happy boy he usually is. You are such a wonderful mom Misty and Seth will never be unhappy with you in his corner!!
Good Luck and let us know what happens.
All my love!!! , Brenda

June 22nd, 2004, 06:45 PM
Misty I am just :cry: for you. I had a couple of random thoughts. One was that school is very tiring for a five year old. Almost all of them are worn out by Friday and that is in the school months when the days aren't so long.

I remember having school issues with William and also having a baby in arms.

Could Seth be missing the summer fun at home with the family and the issue will resovle itself when the regular school year resumes?

Finally I think he is a very brave little man for putting on a good face in school when he really thinks he's in some sort of prison camp. :kiss:


Anne Cairns
June 22nd, 2004, 07:25 PM
Talk about :cry: :cry: :cry: while reading
I feel so much for you and Seth right now
they only thing I would like to say right now is follow your heart ,your instinct you are a great mom and somehow you will figure out what's best for Seth
Lots of :group to both

June 22nd, 2004, 07:53 PM
Like everyone one I'v been :cry: about this since this morning! I have thought about you all day. :? And everyone said it best! YOU know Seth! Do whatever you need to do to make him happy!

In time, maybe he will do better at the "new" school. But he has been dealing with so much. That's alot for anyone and especially a 5 yr old! Maybe "baby steps" are better. He needs to have fun and bond with other kids and get use to his new vision (or lack of). If he is not doing that at the new school, then maybe the old school is better. I will be praying for all of you!!!! Your a great mom and you will do what is best for Seth!!! :group :group :group

June 22nd, 2004, 08:06 PM

I guess there is no other teacher or class where Seth can be placed at this new school? I'm wondering if this teacher is just way too structured for Seth. He is soooo young and he is a child that has a NEW visual impairment, not a congenital one. Can this lady not cut Seth some slack? I am yelling "Boo! Hiss!" at her in my heart. My kids were called the yo-yos because of all the yanking I did with them. Their happiness ALWAYS comes first. You already know just what to do, and you are absolutely 100% right about everything.
Now look what you've made me do. I've gotta go and put my hankie in the washer again! Forum friends...


June 22nd, 2004, 09:25 PM
How did I ever cope without this forum???????you are all so awesome I hope I can someday return all the support you all have given me.

It has been a long day and I have had alot to think about. When I went up to spy on Seth today he was sitting eating crackers with butter that he had just made (kinda cool) but it was not a group activity, each child made their own butter one on one with the teacher. He noticed me a bout 6 feet away from him and he was happy to see me :) and was showing me around his room. I was there for the last 45 minutes of school and it was all "free time" where the kids just did what they wanted. 2 of the kids were on the computers, one was roaming around the room (not playing just walking) and the other child was sitting at the table watching the para cut out shapes and seth was making the butter with his teacher and eating a cracker with some of the butter on it. It was very quiet and not much going on, not noisey or much talking.

I have talked to his teacher and there is another class (in the preschool room with the normal preschool teacher :)) that has a few more kids and is more "busy" the teacher of that class as well as the classroom itself, will be his class/teacher next year. Actually the teacher, principal and the preschool teacher were the ones who brought up switching him to the other class. I thought that was a pretty good idea and told them to try it and I would be up to "spy" on him in an hour. Well they tried but Seth threw a HUGE fit screamed, cried and said "I want to talk my mommy" they knew that I wasn't home cause I was on my way there and I had told them not to tell him because I didnt want him to be watching for me (sort of a way for me to test his vision like I do a million times a day....yes I know Im crazy) or be upset more if I don't get there when he thinks I should be there.SOOOO The first issue to deal with is getting his shunt tapped tomorrow (wed) to rule out a pressure issue. Then if thats ruled out I think :? We will "make" him go for the rest of the week which is 2 days and tell him school is over....that way IF he is just testing us he will not feel like he "got away with it" and try it all again next year :hum: that his behaviour is acceptable and he will do it more often. With that said I will also point out that my inital feeling is that he is not "messing" with us. So I think if the shunt is fine then it is stress related OR he's tired, the bus picks him up at 6:30, picks 2 other kids up and arrives at the school at 7:50 so an hour and 20 min is a long time on a bus. There are a million different reasons for why he could be stressed out and If I tell him school ends this week (really its next week so only 7 days left anyway) he will understand that it is not the fact that he is dealing with stress that school has ended but it just ended because it was time. I don't make it a habit to lie to my kids but I feel like ths little white lie is in seths best interest. And I will just hope that when the regular school year starts he won't have any issues, well minimal issues. Can you tell that almost everyone is telling me they think he is faking and just wants to stay home? I also was thinking of asking if Seth could take 45 min or so in the middle of the day (in the regular school year) to rest and look at a book so he can have quiet time to gather his thoughts, kinda like a nap time. They do have nap time but only one child naps and he goes into a seperate room to sleep so maybe seth could go in that room also and just relax.

We WILL figure this out we almost (no thanks to the MPS) always do it is just hard geting to the conclusion :)

Cynthia Anhalt
June 22nd, 2004, 09:59 PM
Hi Misty, I've just read everyones post on this topic. I know you will find the answers in your heart, it sounds like you are doing all the right things. You are such a great mom and such an inspiration. I love that you post from your heart. Follow your gut instinct with this one. Seth's happiness is the most important issue.
Thinking of you. :group :flowers


June 22nd, 2004, 11:01 PM
I cried when I read your post this morning. I couldn't post then, but I wanted to add a hearty "AMEN" with the others who know as I do...you are a great mom!! :kiss: And you have a wonderfully brave little boy, who has been through alot in the past couple months. Hang in there, dear Misty! We all love you! :group