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inmypjs
11-17-2011, 09:47 PM
Hello, I am new to this forum. I have been feeling a little down and overwhelmed lately and could really use some support.

I have a 7 yo first grade DS who we think has some special needs. We suspect he may have a learning disability. He has a really difficult time with writing. He tries hard but often his letters and numbers are illegible. He is on the lower end for reading and seems to have difficulty staying on task at school. He is extremely curious and notices everything about his environment, no matter how small. Often he finds other things in his school environment more interesting than what he is supposed to be doing. He is well-behaved and not disruptive to others. His talents seem to be verbal expression, vocabulary, abstract reasoning, mechanical/scientific things and general problem solving. Often if he hears an adult discussing a problem or an issue, he will offer a workable solution. He seems uncoordinated with gross motor skills. Socially he is a little tentative but generally interacts well with other kids. He doesn't have a best friend or anyone he is really tight with. Emotionally he is very sensitive. He has good control of his emotions but just feels things very deeply. He was late to choose a dominant hand. He currently has an IEP that provides once/week OT for handwriting.

He goes to a public school and we've been very pleased with his teachers and the staff there. His current teacher has told us how bright he is, but that he just isn't able to put any of his thoughts or ideas down on paper. He has made progress with reading since the beginning of the year but is still below grade level. Sometimes I wonder if Montessori would be a good fit for him, but there isn't one that is very close.

Dyslexia runs in my family and DH and we think that may fit him. We just scheduled private testing for mid-December with a psychologist who specializes in learning issues. I am really scared though, and I can't even articulate why. DH is calm and reminds me to take it one step at a time, but it is like I am scared of what the tests will say and what it will all mean. I doubt we will get the results before Christmas, so I'll probably be worried about it during the holidays, which is normally my favorite time of year. I know that having more information about him will only help, but I feel like my insides are just anxious and agitated.

Thanks for listening.

elliput
11-17-2011, 11:01 PM
:hug::hug::hug: Whatever you find out from the psychologist will not change who your son is. Identifying why he is struggling in certain areas and being able to bring that information to your son's school will help him. Make sure that once you have specific diagnoses in hand from the psychologist that you insist on an update to his IEP as soon as possible.

JTsMom
11-18-2011, 09:39 AM
:hug::hug::hug: I think that's a very normal response. What Erica said is right on the money though. This is just giving a name to an issue you already know is there, and making it easier to address it. Nothing is going to change who your son is, regardless of what name they give this challenge. Sometimes it takes a while to really know that deep down though, even if you know it intellectually. This really is a good step that you're taking though, so just try to keep that in mind, and enjoy the holidays with your family.

mctlaw
11-18-2011, 12:26 PM
I have not posted on this forum, but I've been lurking here a bit, because my DS has some issues we are on the beginning of trying to figure out. He sounds an awful lot like your son. Unfortunately, his kindy teacher is at a loss how to handle him and he is really struggling. He did not have a lot of the issues he seems to be having in pre-K, the issues he had there were quite subtle, and I think a lot of it is due to the public school ratios as well as his current teacher's disorganized style.

I don't have any solutions to offer yet but wanted to let you know there are others like you/your DS out there! :hug:

inmypjs
11-22-2011, 01:58 AM
Nothing is going to change who your son is, regardless of what name they give this challenge. Sometimes it takes a while to really know that deep down though, even if you know it intellectually.

This is how I feel. In my head, I know we need to do this, and obviously we are doing it. But in my heart, getting an actual diagnoses is scary to me.

The attention issues that were brought up recently have really caught me off guard. I've always loved DS's curious and observant nature, and now it seems like these things that I love about him might be causing a problem.

I also worry about how I explain the testing process to DS in a way that doesn't make him feel badly or self-conscious. He obviously knows he's getting extra help for reading and writing, and he's had some moments of being down about it, but so far his self-esteem is quite good. I plan to talk with him about it when it gets closer, so I have some time. I was planning to talk about how we're all different and we want to get some more information about how he learns.

On another note, the agency we have chosen for the testing offers a reading program which I find fascinating. It's called the Davis program and it's a reading program for visual spatial learners who don't learn well with phonics based instruction. It was developed by Ron Davis who wrote "The Gift of Dyslexia." I've read the book and it really describes my DS (and my Dad and to some extent my DH). Has anyone else heard of this or experienced it? DS's reading specialist is really interested in learning more about it with me, so that is a plus. It's not well researched but there seem to be a lot of stories of improvements.

inmypjs
11-22-2011, 02:02 AM
I have not posted on this forum, but I've been lurking here a bit, because my DS has some issues we are on the beginning of trying to figure out. He sounds an awful lot like your son. Unfortunately, his kindy teacher is at a loss how to handle him and he is really struggling. He did not have a lot of the issues he seems to be having in pre-K, the issues he had there were quite subtle, and I think a lot of it is due to the public school ratios as well as his current teacher's disorganized style.

I don't have any solutions to offer yet but wanted to let you know there are others like you/your DS out there! :hug:

Thank you, it is nice to know that. I do feel alone in this sometimes. I'm sorry to hear your DS is having some issues. Feel free to pm me if you want.

JTsMom
11-22-2011, 09:42 AM
I also worry about how I explain the testing process to DS in a way that doesn't make him feel badly or self-conscious. He obviously knows he's getting extra help for reading and writing, and he's had some moments of being down about it, but so far his self-esteem is quite good. I plan to talk with him about it when it gets closer, so I have some time. I was planning to talk about how we're all different and we want to get some more information about how he learns.


Our boys sound very different, so I'm not sure how much help I can be in this area, but what has worked for us is saying very little, and acting like it is not anything out of the ordinary to be goi8ng to all of these appointments. When I tell him things, I try to be very matter of fact. I try not to let him hear me discussing appointments with others, or making it seem like it's a big deal in any way.

We've read a couple of books about different learning styles with him, and he has enjoyed those. One I've heard recommended a few times is All Kinds of Minds, but I haven't picked that one up yet.

I've struggled a lot with Jason's issues over the years. On top of his learning/behavioral issues, he has a cardiac condition, and that's the issue that has been the most difficult for me to handle emotionally. About a month before every check up, I start feeling my stress level climb, and by the time we get to the couple days before, I'm a bit of a wreck. He's getting to the point now where he's asking more questions, and grasping the concept of his own mortality, and I'm dreading the day he makes all of the connections.

One thing I've been told many times is that it is ok to grieve the loss of that "normal" childhood you'd envisioned for your son. Give yourself some time, and try to find supportive people who really get it.

inmypjs
11-24-2011, 01:31 AM
Our boys sound very different, so I'm not sure how much help I can be in this area, but what has worked for us is saying very little, and acting like it is not anything out of the ordinary to be goi8ng to all of these appointments. When I tell him things, I try to be very matter of fact. I try not to let him hear me discussing appointments with others, or making it seem like it's a big deal in any way.

Thanks for these suggestions. That makes sense to me. I like the idea of making it sound like nothing is out of the oridnary. I also try very hard to make sure he doesn't overhear me discussing it with others, but he is emotionally very sensitive and so I suspect he feels my worry.

I've thought of presenting it like a learning check up - something we do every so often to get more information about how he learns. I'm worried about questions though - he usually has A LOT of them, and I've never really had to lie before. I could see him asking if everyone does this, if his younger sister will, etc.

Gena
11-24-2011, 02:52 AM
Thanks for these suggestions. That makes sense to me. I like the idea of making it sound like nothing is out of the oridnary. I also try very hard to make sure he doesn't overhear me discussing it with others, but he is emotionally very sensitive and so I suspect he feels my worry.

I've thought of presenting it like a learning check up - something we do every so often to get more information about how he learns. I'm worried about questions though - he usually has A LOT of them, and I've never really had to lie before. I could see him asking if everyone does this, if his younger sister will, etc.

My perspective is different because my son's issues are different from yours and because we have been doing evaluations and specialist appointments since he was 2 (he's 7 now), so by now he's used to it.

But personally, I would not lie to him about the process. Especially since he is emotionally sensitive and socially aware. Such children often can tell when their parents are hiding something and very often they imagine things much worse than the truth. Plus there is the possibility that he might talk to other kids and find out that they do NOT go through this type of testing. Then you would have to deal with him realizing you lied to him and possible mistrust.

It sounds like your son has started to realize that he is somehow different from other kids. So I would suggest taking the approach that everyone has things they are really good at and things they need extra help with. Use personal examples of both adults and kids he knows. Then talk about the things he is really good at. And then you can talk to him about the things he struggles with and let him know that these appointments are to help you and the teachers learn ways to help him make these things less hard. Try to explain to him ahead of time what will happen at the appointments.

I am of the personal belief that kids deserve our honesty in these matters, especially if they already have an idea that they may be learning differently from their classmates. But no one approach is right for every family and you know your own child best. So I'm just throwing this out there as something to think about.

It's a really hard issue to deal with. Hugs. :hug:

crl
11-24-2011, 10:10 AM
When ds was little there was no need for explanations. We recently started getting an up to date evaluation for ds. I was anticipating lots of questions but he had virtually none. I told him we were going to the doctor and there would be no shots (is first question for every doctor's visit). He asked if the new doctor would be his regular doctor now. I said no, this was in addition. That was it.

I was prepared to tell him, " you know we have have been talking about how important it is to do your work carefully? And how hard it is to pay attention in class when A tells jokes? And you remember what a hard time you had at the dentist's office? This is a doctor who helps with those kinds of things."

Since he never asked, I never gave him that info. When we got there the doctor asked what I had told ds about the appointment and I said nothing really, just that there would be no shot. The doctor told ds, that's right no shots here I am the kind of doctor who talks to kids. That turned out to be enough info for ds.

My general approach with ds is to answer questions as simply and minimally as I can while still telling the truth. I figure he will keep asking questions if he wants more information than I have given.

Catherine

Catherine

inmypjs
11-25-2011, 12:35 AM
Thank you for all of your perspectives. The points of view you've all described are exactly what I have tossed around in my mind, and I am just not sure what is best for him. I'm going to think about it some more. I really do appreciate all of your thoughts since you have been through this before.

inmypjs
12-11-2011, 12:00 AM
Just wanted to provide an update about a number of things...

I ended up discussing the testing with DS quite openly, and it went pretty well. In the past several weeks, it has become clear to us that he is not always feeling so great about himself with school. After Thanksgiving he was not very enthused about going back. One evening last week he was telling me about struggling through math. His math concepts are just fine for his age, but he really struggles to write numbers and was pretty down about this. He is also very aware that he is getting reading assistance. Of course he is not the only one getting it, but he knows.

We ended up just having a very honest discussion about how his brain seems to be wired a little differently, making him really good at some things, but making other things more difficult. We talked about how his grandpa has the same wiring too. Then I told him that we're going to some learning doctors who want to learn more about how his brain works so they can give us some ideas about how we can make school more enjoyable for him. He visibly brightened when I told him this. He kept saying, "Wow, I'm so glad they could help me!" I felt really badly for not telling him sooner. I think we thought we were helping by being his cheerleader and telling him how great he was doing, when we should have been validating his difficulty a bit more.

On another note, we've added another assessment on the schedule. In addition to the testing by the educational psychologist next week, I've scheduled him to be screened for Irlen Syndrome (aka scotopic sensitivity) - which is an eye sensitivity that can cause reading difficulty and can be helped by the use of color tinted overlays and lenses. My Dad shows signs of this as well, and it tends to run in families, so they are going to be screened together over the holiday break.

Finally, I had an awesome conversation with DS's reading specialist at school recently. We were touching base about his progress, and since we last talked she did tons of research on dyslexia. She admitted that she's never researched it, but after talking with me about DS she decided to. She was utterly fascinated and wants to learn everything she can. She is aware of his testing and is on board with whatever is suggested/recommended. Her support brought tears to my eyes - just knowing that school is on our side.

So I guess this is all good news. I'm just anxious for all of this to occur as it's hard to see DS get down on himself.

crl
12-11-2011, 09:53 AM
I am glad to hear your good news. :hug:

Catherine

Gena
12-12-2011, 12:23 PM
What a great update! I hope the assessments go well and give you some answers.