Mothering Forum banner

1 - 8 of 8 Posts

·
Registered
Joined
·
405 Posts
Discussion Starter · #1 ·
I will preface this by saying I have been in a MAJOR funk lately and any little thing is irritating to me. I am sorry if these are really petty issues in light of many other people's horrible stuff happening at school. I need an objective opinion.<br><br>
DS (4 in January) has a mitochondrial disease, significant developmental delays, epilepsy, g-j tube and a host of other stuff. He is on an IEP at school and up until a month ago was getting home bound services. I have always stressed to his team that I will fight for home based services, as he gets nothing (IMO) from being around other kids other than overstimulated. I've also seen too many situations in which kids like Reese are in school because someone is telling someone they should be in school because they are three, not because it is the best placement for that child. Because I want to make sure that it's not just me being overprotective, I agreed to let him go to preschool (in a room with "typical" kids) for 1 hour a week during circle time and art time. His ECSE teacher is a friend of mine, so I *think* I can trust her to tell me if he's not tolerating school. Quite often he will have more seizures and we have not seen anything like that.<br><br>
The first day of school (which was several weeks after the other kids started) I was treated as a 3 year old when the program director came over and stumbled horribly over trying to tell me that I could not take pictures during class. I totally get the privacy thing and these were NOT pictures that I would want to post anywhere and they were not going to get put anywhere but downloaded onto the computer, but this may be Reese's only first day of school EVER. I was not informed before hand (no note or posting on the door saying no pictures), she did not introduce herself initially or make me feel like Reese was welcome in the class, and I know for a fact that other kids got their pictures taken on the first day of preschool, in the classroom with all the other kids there (a friend's daughter is in the same class) and no one said anything. The director did call the next day and apologized, horribly so, but she apologized.<br><br>
So yesterday, a "homework" assignment got sent home. It basically said that R needs to go through a magazine with his parents and pick out his favorite food and bring it to school next week. R hates everything we put in his mouth. He is exclusively tube fed (which he is hooked up to when he goes to school). I understand their need to make him feel included, but is it too much to ask that they acknowledge or ask if that would be an appropriate thing for him. Even a note that says "I know that Reese is tube fed, but was not sure if there's anything he likes to taste. If not, have G (his brother) pick something out and Reese can bring that back." My friend, the ECSE, teacher got angry at me for being upset about it, saying that I need to cut them some slack, they want to make him included. I am left feeling like they don't know him and don't take the time to think about him and what HE needs or what he is capable of. Kind of like the "token disabled kid" in the class that no one takes the time to really talk with the kids about, he's just there some of the time. Their attempts at making him and us feel included feel like a slap in the face about things that he can not do.<br><br>
According to our ECSE teacher, he is tolerating the class well. He "participates" in circle time sitting in his medical stroller, not on the floor with other kids, and art activities where they do hand over hand to make things (which by the way, he usually hates). Today I was told he did fine until he almost started crying when they made him hold a paintbrush, then they stopped.<br><br>
I am trying really hard to make sure that my discomfort is not because I don't really want him there because if he is okay with it, I DO think it is important for him to have experiences that are new and sometimes that means I may not be that comfortable with it. He is not in any danger or being neglected and maybe, just maybe, someday will notice the other kids. I am not quite sure what to do to make me feel more comfortable with the situation. I just can't shake the feeling that he is there because he "should" be because he's three. He will be going with a new caregiver in January who I know will tell me 100% truthfully if he is tolerating or enjoying it or not. The caregiver that brings him now says he likes it all the time, but she is the ECSE teacher's sister (which I know can cause issues, but we're working on those).<br><br>
Help. I feel stupid that I feel this way and am getting riled up about a simple little homework assignment.<br><br>
Again, I know that many of you are dealing with much more serious issues when it comes to school. I'm sorry mine seem so petty. I value your opinions on these kind of matters. Thanks so much.
 

·
Registered
Joined
·
11,576 Posts
<img alt="" class="inlineimg" src="/img/vbsmilies/smilies/hug2.gif" style="border:0px solid;" title="Hug2"><br><br><br><div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>gsmom</strong> <a href="/community/forum/post/14698711"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">I will preface this by saying I have been in a MAJOR funk lately and any little thing is irritating to me.</div>
</td>
</tr></table></div>
Reading through your post, I think that you are stressed and unhappy about the situation, so as little things happen, they are more irritating to you than they would be if you were in a better place to start with.<br><br>
That's not to say that the school is handling everything well. They aren't. But the degree to which it is getting under your skin is affected by the other things going on with you.<br><br><div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">I am sorry if these are really petty issues in light of many other people's horrible stuff happening at school.</td>
</tr></table></div>
You are going through major stuff. There's no need to apologize.<br><br><div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">I agreed to let him go to preschool (in a room with "typical" kids) for 1 hour a week during circle time and art time.</td>
</tr></table></div>
I think it's great that you agreed to try something new and different just to see how it is for him. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/thumb.gif" style="border:0px solid;" title="thumbs up"><br><br><div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">The director did call the next day and apologized, horribly so, but she apologized.</td>
</tr></table></div>
this sounds like it was messed up, but they realized after the fact that they screwed up.<br><br><div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">So yesterday, a "homework" assignment got sent home. It basically said that R needs to go through a magazine with his parents and pick out his favorite food and bring it to school next week.</td>
</tr></table></div>
Have they ever met a kid like Reese before? May be they really don't know how to modify things. Even though it seems obvious to you, to some one not familier with him (or other kids with similar issues) it really isn't obvious. On one hand, since he is safe while he is there, then given more time it seems that they will figure things out better -- that may be there is a learning curve. On the other hand, I can see why you wouldn't want to leave your 3 year old with people who are so clueless about what is going on with him.<br><br><div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">My friend, the ECSE, teacher got angry at me for being upset about it, saying that I need to cut them some slack, they want to make him included. I am left feeling like they don't know him and don't take the time to think about him and what HE needs or what he is capable of. Kind of like the "token disabled kid" in the class that no one takes the time to really talk with the kids about, he's just there some of the time. <b>Their attempts at making him and us feel included feel like a slap in the face about things that he can not do</b>.</td>
</tr></table></div>
<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><br><br>
I think part of the question is if you believe things will get better. How long has he been in the class? What seems obvious to us when we know our kids so well it can be difficult for other people to understand. In taking time to really get to know him and think about what would work for him, it sounds like you want them to do that Today! but the reality is that it will take longer.<br><br><div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">I feel stupid that I feel this way and am getting riled up about a simple little homework assignment.</td>
</tr></table></div>
I think that if you decide to leave him there longer, you need to find a way to let stuff go.<br><br>
As far as what you *should* do, I don't know. I'm often fuzzy about what is best for my DD with mild special needs. I'm not sure if I've made the right choices in the past. My DD homeschooled for a long time and now attends school. At first when she started school, it really hit me how different she is from her peers. I already knew (that was part of the reason she homeschooled for so long) but it really hit me in the face.
 

·
Registered
Joined
·
307 Posts
I didn't want to read and not offer any support. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"> I am sorry that you are going through a funk right now I hope the holidays will cheer you up. On the school note, I used to be an aide in a MH classroom. I think or hope at least they were really just trying to include him in the activity. The kids are probably going to present them too the class, maybe even during circle time and they just didn't want to exclude him. I would be more angry if he was purposely excluded. Maybe you could use it as a time to teach the kids what Reece does eat. I really have no experience in tube feeding but you could explain what is in his feeds in a simplified way. good luck
 

·
Registered
Joined
·
2,583 Posts
Oh Nena... <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><br><br>
I think I would feel the same as you. Hurt and frustrated that they did not seem to be aware of how that would make you guys feel. But... I do know that when I am in a place similar to what you describe as being a funk that everything seems like a slap in the face when if I were in a good mood it probably wouldn't feel the same. So I'm wondering if this might be a situation where there really isn't a good, or at least easy, answer? I know I can get into a place where no one can say the right thing and maybe even if it is the "right" thing I still don't want to hear it because sometimes no matter what a person says or does ultimately they just don't understand and that's what it comes down to for me.<br><br><br>
When Emeric goes to school there are a lot of things they expect of him that I know he doesn't understand and I always end up annoyed but I think I would be annoyed if they didn't expect things out of him too so for me it's always that balance that is so hard to find. Basically I just want him not to be the kid they have to deal with because they HAVE to and I don't want him to be the furthest behind and I want to stop being sensitive about it and feeling guilty that I'm being sensitive about it and gosh, there are so many emotions that are difficult to sort out!!<br><br>
Hopefully once January rolls around things will change for the better and I think if Reese is enjoying it for the most part and you aren't worried for his safety that I'd let him go. I think it's good that they stopped when he was not enjoying it and I don't know about the teacher but maybe she just truly does not understand how to deal with a special needs kiddo, especially since he's in the "typical" class and not special ed. Because unless she has an extensive history working in special ed since all kids are soooo different she may just not know what to push and what to leave alone.<br><br>
This is getting long and I'm likely talking in circles. Just know I think of you guys often and I am hoping for things to work out!
 

·
Registered
Joined
·
405 Posts
Discussion Starter · #5 ·
Thank you all. I know I am overreacting to little things and need to find a way to let it go. As always with Reese, nothing is ever easy, I should have anticipated that and prepared myself a bit more. It is important that Reese has experiences beyond what we can provide for him at home, as long as it's not endangering him, I'm fine with it. In part, I do think it's the overprotective mama bear coming out. He has NO way of telling us anything, including if he likes it or not and there are some people in his life that can do that better than others. All in all, I DO trust that those involved have his best interests at heart.<br><br>
Thanks for the gentle reality check.
 

·
Registered
Joined
·
2,149 Posts
I am so sorry this is so hard for you right now. If I might offer a slightly different perspective, until I knew several kiddo's that were on tube feeds, I assumed that the could/would still have small samples of foods, maybe just tastes, but something oral or at least a sucke ror something. My only experience had been with people who needed the additional nutrition, not that they could not eat orally at all (like my oldest, who had an ng tube for a few weeks after birth and then was considered agin when he was about a year/18m when sensory issues kept him from being able to eat enough). Could you pick a food that is a color he likes and talk about that aspect of it? Or I really like the PP suggestion of using the opportunity to explain to the class in simple terms about tube feeds.
 

·
Registered
Joined
·
405 Posts
Discussion Starter · #7 ·
<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>queencarr</strong> <a href="/community/forum/post/14700346"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">If I might offer a slightly different perspective, until I knew several kiddo's that were on tube feeds, I assumed that the could/would still have small samples of foods, maybe just tastes, but something oral or at least a sucke ror something. My only experience had been with people who needed the additional nutrition, not that they could not eat orally at all</div>
</td>
</tr></table></div>
Excellent perspective. Reese was originally an oral eater. He went from breast feeding to bottle/solids to syringe feeding to tube. We've tried many times to give him food orally (I am a pediatric speech therapist and work with many tube fed kids and have gotten them "off" their tubes). Reese really, truly HATES to eat orally. We've tried many different things (he gets many tastes of many foods) with the hope that something, anything will be enjoyable for him and he hates it. The funny thing is that I don't think it's the food, it's purely the act of eating that he doesn't like, so we can't get beyond that to even figure out of there's something he really likes. I think that because of the neurodegenerative piece of his condition and his GI issues eating orally is really something he associates horrible things with. He knows that eating is hard and uncomfortable for him, so he just chooses to not do it.<br><br>
I may call the teacher and see if I can have a little chat with the kids about Reese's tube. That would be a good idea.
 

·
Registered
Joined
·
2,149 Posts
<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>gsmom</strong> <a href="/community/forum/post/14702621"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Excellent perspective. Reese was originally an oral eater. He went from breast feeding to bottle/solids to syringe feeding to tube. We've tried many times to give him food orally (I am a pediatric speech therapist and work with many tube fed kids and have gotten them "off" their tubes). Reese really, truly HATES to eat orally. We've tried many different things (he gets many tastes of many foods) with the hope that something, anything will be enjoyable for him and he hates it. The funny thing is that I don't think it's the food, it's purely the act of eating that he doesn't like, so we can't get beyond that to even figure out of there's something he really likes. I think that because of the neurodegenerative piece of his condition and his GI issues eating orally is really something he associates horrible things with. He knows that eating is hard and uncomfortable for him, so he just chooses to not do it.<br><br>
I may call the teacher and see if I can have a little chat with the kids about Reese's tube. That would be a good idea.</div>
</td>
</tr></table></div>
Although not to the extreme of Reese's dislike, I have two kids whose uncomfortable associations with eating made it very difficult. My preemie had extreme oral sensitivity and oral motor issues related to CP--it took 5m to get him to bf after ng then bottle. I truly believe the only reason he wasn't tube fed was because he continued to nurse and I didn't night wean until he was over 3y. My youngest (adopted at 1y) had undiagnosed dysphagia, aspirating or penetrating every.single.swallow of thin liquids on the swallow study. He also has trouble with nonbinding solid textures--his swallow gets disorganized after just a few bites. He was taking only formula and a few single bites of rice at 1y. We are up to soft bindable solids after 15m of work <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/joy.gif" style="border:0px solid;" title="joy"> but he still gets about 1/2 his calories from pediasure. I have 2 classes plus my year of externship before I graduate as an SLP and I have decided feeding therapy is NOT what I want to do <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/lol.gif" style="border:0px solid;" title="lol"><br><br>
I hope talking with teacher works out for you. I do know what it is like to just constantly have to deal with something and be overwhelmed! <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 
1 - 8 of 8 Posts
Top