Please read and offer any help!!!!!!!!

[Thinking Outside the Box]

You may be the closest I ever get to Australia; is it as wonderful as I think it is? Australia has always been the one place I've wanted to go! Well, you saying that you feel it is also in your family, makes me feel so much better! I have honestly been frustrated that doctors don't seem to be interested in taking a closer look at what is in the immediate families; to me, its like a giant flashing sign saying look over here, we know what's wrong!! Looking forward to hearing ways to help me work on my husband. He and I need to be on the same page, when we are not, it feels very much like being a single parent. I appreciate your information and advice on IQ. It was all new to me and made feel better about my son's score. Your difficult child is much like mine in the sense that Brenden too has the most difficulty with the retrieval process and the speed in which it comes to him.
I will be getting my hands on Explosive Child on Monday. Like your husband, my husband will not be able to get into it. My mother in law is much like yours and both her son and her grandson seem to totally normal and she fights us all the way when working with Brenden. Her famous line to me is, "everyone has fruits and nuts in our families, we just have to find a way to live with them" and she gets upset with me because I want more then just "living" with Brenden. Brenden deserves the chance to have a real life, not just get through it. Thank you for your "mud pie recipe" or "meeting him where he is at". Maybe one day, a bubble will float over here and pass over Brenden and he too, will be outside blowing bubbles! He can blow bubbles for hours! Well, I have a lot of work cut out for me and after a 2 days of being on here, I can again see a glimpse of that light I used to be able to so easily see at the end of the tunnel. Thank you. Mel

 

[Thinking Outside the Box]

Your advice on the girlfriend/CF diet was very helpful! I have been quite hesitate to do more investigating on it because of my other children. Meaning that my other children are so deeply impacted by Brenden and the issues he faces, I was afraid (as stupid as it may sound) that they would like, "great, now we can't eat food either because of Brenden!" Brenden's 2 younger sisters seem to almost resent him and finding a way for them to live as normally as possible seems just as difficult as helping Brenden find a way to have a "good day". Do you ever feel like you are always giving to the child with challenges and taking away from the others? I do, very much so. Maybe with changing this one thing, it may help all of my children. I am more excited then ever to finish his food diary, see his pediatrician nutritionist and get the information I need for the diet. If he responds to it, how could I take it away from him?! Thank you and enjoy your night.

 

[Thinking Outside the Box]

I absolutely agree with you regarding interventions coming mostly from the schools, but getting them is another story. Brenden was release from speech because they said he had met all of the goals they had set for him. It wasn't until I found an advocate who read the IEP, who asked me, "So, Brenden is able to start and engage in conversations?" She explained to me that Brenden answering a question was not "engaging" in conversation. Conversation is back and forth between at least 2 people and if Brenden couldn't talk about what he wanted to talk about, he refused to listen. The advocate said that he had not infact reached his speech goals. though the school said that he was able to 80% of the time start and engage in conversation. Needless to say, we are working on getting him back in. PT and Occupational Therapist (OT) they say he doesn't qualify for because he can safely get through the school day. He can climb a slide ladder, carry his lunch tray, use a pair of scissors (though he is a little heavy on the trimming he isn't falling out of his chair, etc. I've been repeatedly told that a child doesn't qualify if he can make it through the day without a great deal of assistance. You are right about the therapists; I never could figure out why Brenden HATES going, maybe the talking thing is the reason. I will have to work on getting to the bottom of that. Brenden was seen by a neuropsychologist, but neither Brenden or I really cared for her; I didn't put too much weight on her reports. Do you think children like ours should continue be put through evaluations, etc.? My son is so tired of going; he gets mad that his sisters never have to go anywhere like he does. Medical tests, evaluations, IQ testing, being observed in school, therapy, etc., leaves me feeling like I am doing more harm then good. In saying that, I also can't ignore the feeling that there is something still physically going on with him that is adding to everything else. Take care and thank you for taking time to share with me; the support on here is wonderful!!

 

[busywend]

Welcome! With the sudden change to violence at 10, be sure they test for Lyme Disease as well while they are at it.

Everyone has given you great advice. Your first priority is to get the medical team in place. Drop any that tell you it is your parenting. I would request a Multi-Disciplinary Evalution at a Children's Hospital.

 

[BusynMember]

Yes, I think our kids should be put through evaluations until we get the right diagnosis. As you see, without one you can't get ongoing services which can hurt the child in the longrun. Is he really tired of going or are you tired of taking him? (No offense meant, just food for thought). Is there some reason you don't want to consider he may be on the autism spectrum? You seem to be avoiding it, and he really sounds like that could be a big part of his problem. Without the interventions (and the label) he can't get better. Kids don't normally outgrow their differences. They just get more frustrated.

I wouldn't listen to mother-in-law. She is obviously in denial. As for hub, if he has any form of Autism Spectrum Disorders (ASD), that would make it hard for him to see how different his son is. Six is very late to speak, even if he had hearing problems. Example: My brother had a 50% hearing loss because his adenoids were growing into his ear canals, but he talked early, although his speech was a bit hard to understand. My oldest son had chronic ear infections and spoke on time, albeit a bit hard to understand. Nothing explains not speaking until six. That's awfully late.

Blowing bubbles all day (repeating one activity ad nauseum) is also an Autism Spectrum Disorders (ASD) trait. Most kids get tired of doing the same thing. ASDers can do the same thing forever if it fascinates them. One thing that tends to fascinate ASDers, and this is BEYOND the normal kid fascination, is computers and videogames. They could mess with tham all day long and often have very narrow interests. Or they can have one other area of intense interest, such as maps, trucks, trains, train schedules...but they don't have a lot of interests and most of them don't play appropriately with toys or have good imaginative play. Has he ever lined up his toys? Although not all ASDers do that, it's common. My own son didn't do that. He just was disinterested in toys other than watching them drop to the ground or taking them apart. He also could remember a television show verbatim, another common quirk. He'd repeat entire shows and shock everyone.

Sometimes my son seemed in his own little world, especially in crowds, but when comfortable at home he almost seems like "Is there REALLY anything wrong?" Also very common. They are uncomfortable in unfamiliar settings. And they don't know how to mingle and socialize so they often sit in a corner and look down or try to fade into the background. Also, they have low frustration levels and some ASDers act out rather violently when they are frustrated because they don't know how to tell you what's wrong, even if they have words, and they get very upset because they don't "get" it.

Again, all ASDers are different, personality-wise, yet there are similarities. If this sounds familiar, please give it a look.

Whatever you decide to do, I wish you luck, but in my opinion he needs a different neuropsychologist evaluation. There are lemons in all fields. find one that does 6-10 hours of testing and has a good reputation.

Anyhoooo, have a good day

 

[Nomad]

Melinda,
It so good that you are taking careful note of how B. reacts to his medications and also what the teachers are seeing. This is good information for the doctors. No doubt additional testing needs to be done and changes in dosages or perhaps an add on medication might be needed. It takes time, but finding a caring intelligent and patient psychiatrist is a real blessing.

How wonderful that you are going to therapy and perhaps in time, your husband would consider couples counseling if you feel it would be helpful.

Please do your best to socialize...just get out of the house now and again. Honestly, it will strengthen you personally and strengthen your marriage. Sure, you wont be able to do as much as the next person and it will take extra work, but it is still very much worth it.

Love that you are getting that book! It's a keeper! Read it carefully!

You might want to see if there is a CHADD group meeting in your area. Your son might not have this exact diagnosis, but mom's with kids with ADD/ADHD know about children who struggle in school and the support would be really helpful for you. When you are certain of a diagnosis, perhaps you will look for another group. However, you can get some really good general information and support here.
http://www.chadd.org/

Also...are there any really nice, patient, bright high school students in your area? You might consider paying one of them to come to your house and tutor B. one or two hours a week to relieve you of the job and to help him feel better about his school work.

Visualize yourself going to Austrailia...buy yourself a calendar with- photos. Might not be for 10 years...but make it a goal to get there!

 

[emotionallybankrupt]

As far as the educational testing goes, don't forget that you have the power to deny consent for any test you believe not to be in your child's best interests. My younger child has a severe language impairment which, as already stated in an earlier post, naturally brings low IQ scores, since the testing is language based. So far, my child has been able to receive appropriate educational services for 5 years without further IQ testing. My point in the IEP meeting was that the result of any IQ test would have no bearing on determining appropriate services and would only build a more negative file upon which she could be judged. As long as she is able to receive appropriate services, I am going to continue to deny consent for testing I believe not to be in her best interests. My my opinion, testing that shows current skill levels is the testing upon which her IEP should be based.

It's so easy to forget in these processes that you have significant power in the decision-making and to be intimidated in the processes involved. As a teacher myself, it has given me a totally different perspective to be on the other side of that table as a PARENT. I became keenly aware of my role as my child's advocate, as others who had not met my child were judging her solely based on the scores in that file. If I was intimidated, I can only imagine how the parents less aquainted with the educational processes must feel. Good luck with all.

 

[Marguerite]

Another quickthought on IQ testing - we bought a number of cheap software packages when we first pulled difficult child 3 out of mainstream. One item in te package screamed from its label, "IMPROVE YOUR IQ!!!!"

I played with it. It's basically a simplified IQ test you do on the computer, multiple choice. It keeps score of every time you log in to use it, and keeps graphing your scores each time. But the number of questions programmed into it are limited. A standard IQ test in this 'game' is qoo questions, I suspect the total number available to be less than 200. So after doing the test a few times, you have already encountered all the questions and you've been given the correct answers. SAo over time, I found my score increasing from an initial 130 to a perfect score of 200. Now, I do believe I'm smarter than the average bear, but I do not beleive I have an IQ of 200.

I think the last time I saw this particular computer CDROM, it was being used as a drinks coaster...

Marg