BMA award finalist here

[PamE]

At the rate I'm going I'll win hands down. :\ I know we're not all June Cleavers here but this is one of those weeks where I can't stand myself and I'm not sure what steps to take to change.

Ds1 is driving me up the wall. Most of it is me trying to work around/with his disabilities but I still shouldn't be reacting the way I am. Communication with him is sketchy at best, you never know if he's really communicating what's going on in his head or if he understands what you're trying to tell him. He has become very obsessive and demanding lately, talking on and on about plans that he has made (from doing something as a family to inviting friends over, to going camping, etc). It's hard for dh and I to know with him where his imagination ends and where real desires begin and we've been letting this slide, thinking it's just his version of imaginary play. Well, it's not. So now he's disappointed that his "plans" aren't working out and we're losing our minds trying to get across to him that just because he has these really cool ideas in his head doesn't mean that they're going to work out in reality.

My big thing in all this is it doesn't seem like I really know my son at all. I can't seem to get around his disabilities to find out what he's really like. Conversations with him end up frustrating on both sides because asking him any questions backfires. He takes cues on what to say from what is said to him. So if I ask him a question he tries to tell me what he thinks is the "correct" answer, whether it's true or not. He doesn't understand the concept of give and take conversation. Granted, he's much better than he used to be, but nowhere near "norm" for a nine year old.

Dh and I both end up frustrated with going over and over a concept that we thought he'd mastered long ago and that frustration registers with ds. That's the one thing I wish he didn't understand... that we get so frustrated with him. :( We've asked the teacher group at school, but you know, I think they're as puzzled with him as we are. He doesn't fit into any molds, as far as norms, even norms of different disabilities. He's got his own set of oddities that no one can seem to pinpoint or work with. I think his frustration level is higher than any of us realize and that worries me too.

Sorry for making this such a book. It scares me that the people who are in contact with him the most don't have a clue what he's all about (dh and I, grandparents, teachers). Where do I go for help when it gets like this when no one really understands the situation (especially me)? My poor kids are tired of watching me pull my hair out and bang my head against the wall and are tired of having a grump for a Mom. I am so overwhelmed with it all right now and don't see a light at the end of this tunnel. When I try to be more invovled with ds and be a better mom I think I get a closer look at how things really are and don't like what I see but don't have a clue how to make it better.

[BevJ]

Originally posted by PamE
It scares me that the people who are in contact with him the most don't have a clue what he's all about (dh and I, grandparents, teachers). Where do I go for help when it gets like this when no one really understands the situation (especially me)?

What about a doctor? For both you and ds?

Great big HUGS. I don't have any wisdom or advice to offer, but I can give the hugs and prayers that it will all work out for you. You sound like you're at the end of your rope.

[KarlaB]

{{{Pam}}}

I don't have any answers for you either, but like Bev will send big hugs and keep you in my prayers!!

[Fern]

((((PAM))))))

[JAK]

(((Pam )) I really feel for you all. Can you see a therapist? Maybe they could come up with some answers. Or a dr? Good Luck to you.

btw... I can't believe he's 9 already! I remember when he was 4 or 5!

[Mickey]

Aw, Pam...I'm so sorry you're having a difficult time!

Maybe Bev's suggestion to talk to his doctor will help in some way? Or maybe s/he could point you in the right direction? Maybe to someone who specializes in working with kids with his disablities could make suggestions on how to help you communicate with him more effectively?

I know it's not the same as what you are going through, but I have found that with my ds, just when I think I'm starting to figure him out, he moves on to a different developmental stage and changes the entire game on me. It's hard to regroup and figure out effective ways to approach new challenges.

I hope you can find something that helps you and your family. And you are NOT a BMA contender! You are a normal mommy who is having an understandably tough time!

Mickey

[Amy]

Has he been diagnoised with anything? It sounds as if he has some Asperger's tendencies. Can they run tests for him to help pinpoint what it wrong?

I'm with you about frustration. My 5 year old has been diagnosed with mild Asperger's even though he is not a clear cut case. He has improved a lot at school, but there is some concepts that he just can't get-mostly language related. It is so hard for him to grasp comprehensive language. My gosh, teaching him about rhyming words is near impossible. I also think he is getting frustrated now that he is more aware that he is different. What is wild is that he is a pro at Rote Facts (easy memory facts). He can memorize sight words in an instant, can read 3 letter words, numbers and etc, but anything more subtle or comprehensive is really tough on him.

Can you take him to a specialist that majors in learning disabilities? Even if he was diagnosed, a second opinion with a specialist in the city would help a lot.

[BevJ]

Mickey and Amy both said it more effectively than I could have...as you can see, all I said was "see a doctor". Good luck!

[SpeechMom]

Aspergers was my first thought, too. Amy, who diagnosed your son?

[RCT]

(((((((((((((((((HUGS)))))))))))))))))))

[MaryL]

Originally posted by SpeechMom
Aspergers was my first thought, too. Amy, who diagnosed your son?

Ditto!

[littlesista06]

((((((((((Pam))))))))))
You're getting some good feedback here -- I'll send my hugs and support your way.

[Amy]

Originally posted by SpeechMom
Aspergers was my first thought, too. Amy, who diagnosed your son?

A school psychologist back in Colorado. He has come a long way on his own, so his current therapist thinks he has mixed receptive-expressive language delay that is high moderate to severe.

[Judy]

I know how frustrating it can be when you're working with kids with disabilities. I worked with a child that has autism and his language and communications skills were the pits. He was extremely bright, but had not way of getting all that knowledge out.

So how do you figure out how smart a kid is when he virtually says only three words at age 7 (mom, bus, apple)......totally by accident. We were walking through the halls of the school and he stopped and looked at a poster of the solar system. Damn if that kid didn't start naming all the planets! You had to listen carefully to what he was saying, but sure enough it was there.

So now you know there's a world of stuff inside of his head, but what do you do with it. You try everything under the sun to figure out a way to get that information out of him.

That's true with any child with a disability...parents and teachers have to spend time....sometimes a lot of time.... trying to come up with ways in which the child can communicate with us. It's a hit and miss style, but the only thing that work. And it's frustrating spending so much time figuring it out, but once you hit the nail on the head it's all so worth it.

Because he was so bright, we had him in a regular classroom for part of the day. This meant that the would take the normal tests that others were taking, but I noticed that he didn't understand how to answer questions correctly. He knew the answers, but when you sat him down with a pencil and paper he'd answer one way, look at my face for clues as to whether he was correct or not, and then change his answer over and over again.

This prompted me to start focusing on him answering question. We worked intensly on this skill. I used rewards which helped a lot. I've always hated food rewards, but in this case (and in teaching him not to masturbate in public) it was necessary. I walked around with a hot pink wrist pouch with quarted skittles in it and I would hide my face when we worked on this skill so that he couldn't read clues from my face. After about two weeks of 'training', it finally worked.

I don't know of your son's disability, but maybe there is a way you can use rewards with your son to help him communicate better.

As for keeping your sanity, remember....even people trained to work with kids with disabilities don't always have the answers. Especially when you're child in out of the mold. Most times you just have to try one way of approaching it and if that doesn't work, try another one. You can also ask the child study team and your child's teacher for suggestions on how to work with him on this skill at home. Also ask them to work on it at school and to let you know what practices they are using so they can be reinforced at home.

[PamE]

I'm not sure how to express my gratitude in words. You all have been here for me through all of my problems with ds and have always been willing to pull me up by my bootstraps when I hit bottom.

We've been given so much information on ds, with most of it being guesswork. The symptoms of his disabilities are so widespread among different "labels" that no one has been able to pinpoint anything specific enough to diagnose it. A lot of people (teachers, doctors, etc) have mentioned Aspergers and I tend to agree, but there are symptoms that don't fit that either. Communication and social skills are his main problems (to me anyway). We've been to so many different doctors. There are doctors in the city that have been recommended but our insurance won't cover. So there's no way that's an even remote possibility at this point. :(

He has been diagnosed definitely with adhd and we've started the meds again for that. His teachers are noticing a bit of a difference. He's tolerating it well this time so we'll be continuing it. (In the past the side effects of the meds were worse than the symptoms of his adhd.) So hopefully we've removed one of the stumbling blocks to his learning and social skill probs and that will be one more step in the right direction. He's had "tentative" diagnoses of autism, PDD, SID (which I can see), Aspergers, etc. We've tried the reward system thing, but that backfired because he became obsessed with the rewards, lol!

We had him examined and tested by the school district psychologist a couple of years ago and that was devistating to us. He did an IQ test (among other things) and it showed ds with an IQ of approximately 58. :\ That's NOT his true IQ, but that's how it manifests because of the way he is. The special ed director wants him tested again next month with the same battery of tests, by the same man, to see that he's not regressed. I didn't realize what his scores were at the time and when I found out later I was crushed. When we enrolled him in Early Intervention we were so grateful that we got him in when we did, that it would be the extra nudge he needed to get him up to "par" for his age. It must have been total denial! He's never going to be "normal" and after all this time of thinking he would be, it's pulled the rug out from under my feet to realize he's not. I've stopped expecting his IEP meetings to be encouraging and to brace myself before I go so I don't fall apart in front of his team of teachers.

I'm not sure I could get dh to agree to a therapist again (we went to one in the city for a dx and that got us nowhere pretty fast) but we should at least discuss it. I'd love to be able to get him to a child specialist neurologist even. Hopefully the school psych will have more answers for us this time. Last time he couldn't give us much hope at all and I was still in so much denial I thought he was nuts and just didn't know Andrew well enough to know how to test him!!! Anyway, I'll keep you all posted on the results of that, if he has any more ideas for us. He's also recently been evaluated by the occupational therapist (which I've been trying to get them to do for a couple of years now!) and I don't know what that turned up.

Ds2 is hollering because I've been on here so long trying to word this just right. :) Thank you all again for your support. I can't begin tell you how much it means to me. You've picked me up from the depths yet again and I think I can go on again without being a basket case. It helps to have friends who can put things in perspective. :)

[Judy]

Keep in mind that your school dristrice has "an obligation" to have a program in place for your son to get the very best education that he can. If your current school isn't up to par, you can seek help in getting him into another program and the state must pay for the transportation and the out of dristrict expense.

I HIGHLY recommend to you that you talk with some of the other parents in his class and I'm sure you'll be able to find at least one who understands all the laws and can direct you to some online sites to help you understand your rights regarding your son's education.

Educating yourself and being truthful to yourself about your sons condition will prove to be the most powerful things you can do for yourselves and your family.

[Ryleigh S.]

No new advice to offer just a big{{{{HUG}}}} ! Don't doubt yourself - you're a wonderful Mommy. All little boys should be so lucky to have a mom that will do all you do.

[PamE]

It may not seem like I'm very involved, but honestly I have been... from day one. It may sound stupid but I really believed that ds would get better and function like a "normal" little boy. They are doing a good job with him (as far as I can tell) and are willing at any time to re-vamp his IEP and meet with me to update me on his progress. Each of his teachers/therapists, etc have specifically told me to call them at any time if I questions, suggestions or problems with what's going on. The delay in getting him his OT evaluation and services was partially my fault for not making myself clear enough and part a problem with overcrowding at the school (two schools in one for six months of this school year). The only other district in this area does not have as good a program as ours does (this is from the teachers in that district). I hate the thought of moving him now because he has worked with these people for six years and knows and trusts them all. I also don't like the idea of moving him from the familiar school setting and making him adjust to things as simple as a new building layout!

Supposedly there is a school in the city (hour and a half away) that is geared for children like ds, but I can't see how we could manage that.

I am calling the director in the morning to schedule his tests for asap. Hopefully it will be a quick thing and ds will cooperate. Hopefully that will give new perspective on what he needs from them.