Update First Neuro Appt.

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Registered: 10-03-2003
Update First Neuro Appt.
10
Mon, 10-08-2012 - 12:56pm

We had the first Neuro appt. Friday morning.  The doctor and the hospital were reassuring.  She was very comprehensive and when ds acted up infront of her, she told dh and I that we are in a lot of problem, but she will do all she can to help.  She did a physical and motor exams and measured all of our heads.  I have the biggest head in the family, lol.  She said that a damaged brain doesn't grow, but I'm not sure about that.  She gave us a prescription to take to the school for a formal pediatric neuro-psychologic evaluation.  She knows a lot about the state law for special education; however, she is not too sure about the school system in my town since it is on the other side of the state.  She has been doing this for a long time and will coordinate everything all his care.  Once she receives the report for the neuro-psychologic evaluation, she may do an MRI if required and other medical tests including genetic testing, she said.  I'm please to have found her, but I'm sad that at 7 years old my poor child has to be subjected to all this.  He kept asking me why he wasn't in school  and if he could go to school after the appt.  Then he asked me if there is even a cure for his "problem" as he calls it.  I never anticipated this when I was trying to get prenant or during pregnancy -- I'm the youngest in family.  All my siblings have children and no one in my family or dh's family have ever had to deal with this, so sometimes I get numb and wonder if it has been a bad dream or if I ever did something bad to someone that I can't remember.  Thanks for reading.

Grace.

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Registered: 10-03-2003
Tue, 10-23-2012 - 2:48pm

Hello Mom_ladybug,

I had the same problem accessing the message board too.  To reply to posts, I have had to re-register.   I had given up and happened to just check again moments ago.  I read a notice that the site was undergoing a platform migration, I guess they are still in the process. Thanks a lot for your kind words and for all the examples and resources you have provided me.  Yes my son is having a hard time accepting who he is and we are trying to help him but I don't think we are doing a good job and the condition is not making it easier for him to fit in either.  He has been melting down a lot lately and over the most silliest of things, like not finding a toy that he doesn’t need or a piece of clothing which he has 20 others similar to, but insists that he wants the one he can't find and will scream, hit or destroy something.  Then when it is over he will ask me why God hasn’t healed his brain yet and where is God himself anyway. 

My husband is at his breaking point; I find myself refereeing between them because they are always struggling with each other -- I'm trying to keep it all together, but for the first time, I must admit that it is very very hard.   I assure him everyday that he is very special and that God has a plan for him, but he wants to know why he has lost friends or not making friends with the kids in the neighborhood -- some of them like him, but they have seen his wrath and don't always want to deal with it.  I know we will get to the right place some day, but he must believe it too.  He will be 8 years old this Saturday, so we have a lot planned and he is looking forward to it.  He doesn't have the best teacher this year, so that doesn't help either, but I intend to share some of the strategies that you shared about your son's school/teacher by making him a teachers helper; I'm hoping that will help with focusing and over self esteem -- he likes playing teacher at home anyway.  He is quite an actor and likes reporting the news, doing weather, DJing and interviewing candidates, lol, so I'm going to find a theater group/program for him.  I'm trying not to stress out too much, but I find myself worrying a lot.   

Thanks again,  Grace.

 

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Registered: 10-03-2003
Tue, 10-23-2012 - 2:20pm

Hi Redcows, I'm not sure; I gave the school the request from the doctor,however, we have a PPT meeting this Friday, so I will ask.

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Registered: 02-17-2004
Mon, 10-22-2012 - 8:51pm

Oh Grace,

My heart breaks for your son.  Sorry about how long it has taken to respond.  I have just been able to open the post.  It sounds like your DS is coming to grips with who he is in this world and it sounds like he doesn't like it much.  I really hope you find some positive things for him soon.  Maybe some positive role models as well. 

I really like Helen Keller's story.  She had strong challenges and no one believed in her.  But then she got a teacher who did believe she could be different and it was good.  The lack of vision, hearing, and inability to speak did not mean she could not learn or be a significant contributor to society.  She took all those challenges, met them, then did something positive and helped many others.  She was different.  Thank goodness.

Another good one is Christopher Columbus.  He was the only one that believed the world was round.  Everyone else believed the world was flat.  He had the confidence to believe in his thoughts and his ideas.  By proving the world was round, he changed the way people thought about the earth.  If he had listened to everyone else when they said he was crazy, we may still think the world is flat.

Alexander Fleming was notoriously messy.  A complete slob.  He went on vacation and left a bacterial experiment sitting in the corner.  Some bread crumbs contaminated the petri dishes (which were not washed before leaving).  When Fleming returned, he noticed something different.  Complete accident.  But he was confident in his powers of observation and ideas.  He accidently discovered penicillin and revolutionized modern medicine.

Did you know that the woman who invented Spanx hated the seam on the toes of pantyhose?  So she'd cut out the foot.  Multimillion dollar industry.

If he needs white noise to calm down, put some on an iPod or whatever you have with headphones/earbuds.  If he's doing it for the sensation, it may be an anxiety thing.  Find a destressor to see if it becomes less common.

It sounds like he is concerned about his future.  He needs you to let him know he can be ok.  Then show him how to be himself and use it as an advantage.

Maybe some theater classes will help him figure out how to respond in social situations.  I've heard many say they learned so much by liteally given a script of how to stand, what to say, how to move, how to dress, etc.  And quirks are usually more readily accepted there.

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Registered: 01-09-2003
Mon, 10-15-2012 - 2:14pm

When will the school be doing the formal pediatric neuro-psychologic evaluation?

iVillage Member
Registered: 10-03-2003
Mon, 10-15-2012 - 1:26pm

Thanks a lot for the resource information.  I'm going to get the surperflex books for him.

iVillage Member
Registered: 10-03-2003
Mon, 10-15-2012 - 1:24pm

Thanks a lot mom_ladybug. You are truly a comfort and a wealth of information. I appreciate bluntness; I don't appreciate it when people say what they think I want to hear.  To be helpful always be blunt; even if it turns out wrong, I know your heart was in the right place and you made the best decision at the time based on the information you  had.  Looking back now, I know people were trying to tell me things, but they were not clear and I followed the side that said don't worry he is young yet and would out grow these behaviors.    I have read sensational kids and found it very valuable; I actually think he may have some sensory issues with delayed response because sometimes he can completely tune you off, so these days I tell him to do something or call him and wait a few seconds for him to respond instead of repeating it over and over again and I see that it works, plus he hates the silence.  Also he likes to make noises (lately static noises) which can be very distressing to the people around him but it seems to satisfy something in him and he tells me that he wants to stop, but he can’t seem to be able to stop.

DS has a similar problem that you stated; "The problem is many times the kids are mean to him and he thinks he is part of the group".  He wants to be so much a part of the group that they get him to do the bad things.  However, after we had a talk with him, now he doesn't want to play with them anymore -- by us pointing things out to him now he is distrustful of them completely to the point where sometimes he is mean and rude to them. Thank you for the information on theABAprogram, I will definitely look into it. 

This was a very emotional weekend for him for some reason that I'm not entirely sure.  DS watched his baptism video yesterday (he has been asking about how he was as a baby) and after he watched the video, I found him crying.  I asked why he was so upset, he said that he wanted to go back and be the baby in the video because that baby was so calm and well behaved unlike him.  The baptism event last over six hours including the reception and he didn't cry once -- he went to any and everyone who wanted to carry him that day; he was playing and smiling with everyone and at some point he fell asleep amid all that noise; we both started crying -- I miss that baby too -- part of it is because he is growing too fast and also because he was so perfect and still is.   Also on Saturday we were on our way to a kids fair and ran into a teenage kid -- It was cold and raining, but this kid had a single sock on, no shoes and an unbutton jacket.  He was walking across the street completely spaced out and not paying attention to our approaching car.  My dh made a comment that this kid is not ok and I foolishly said, without thinking and realizing that my ds was listening, that this is what scares me for the future for ds.  Well we got to our destination and ds was in tears.  He asked if there was something wrong with his brain and is the kid really like him?  He wanted to know if the kid would be ok, where his parents were and why he didn't have shoes on.  DS who is always touching things and moving around didn't want to participate in anything at the fair.  They put him in a fire truck to look around and he just sat there.  He insisted that I take him back to the place that we had seen the kid to make sure that he was ok.  He only felt a little better after we were able to convince him that the kid just forgot his shoes and that he went home to get them.  He was quiet for the rest of the day; didn’t have much of an appetite and was the calmest ever without being sick.  I really don't know what to make of this.  Sorry for being so long. 

Bye for now.

 

iVillage Member
Registered: 10-03-2003
Wed, 10-10-2012 - 12:46pm

Hello mom-_ladybug,

What happened to the rest of your post?  I read it yesterday, but couldn’t response right away because I had a doctor’s appt. and was working from home which is always challenging.  I know you were concerned that you may have been very preachy, but please know that I appreciate you for taking your time to "walk" me through this process.  You gave a link for an ABAprogram that I had meant to check out today, but you took it away; could you please give it to me again.  It is funny, but when I go to the office, I have more time to research than when I work from home.  Your post brought tears into my eyes because it was so true and inspirational.  You said something like "an expert who comes highly recommended may not be highly recommended for you”, I’m paraphrasing here.  I was shaking my head in agreement so hard that I thought it might fall off.  You sound just like me the way you put things to the point and I appreciate that very very much.  Everyone is so carefully in what they say and will not tell you when you are leading the wrong way, but they will sympathize with you when you fall, I don’t like that at all.

Highly recommended experts have caused me so much trouble and I can honestly say that, that is what got me here, but I will not go into it because I can't change what has already happened.  You are right, I haven’t finished mourning yet, but my mourning will not be for the perfect parenting; it is for the happy childhood that I had planned for a child whom I wanted sooooo much and worked soo hard to put my life and now his in danger to get.  I feel sorry for the school he can’t go to, for the programs he can't participate in, for the friends he has lost or couldn't make because of behavioral issues, for the isolation by other kids and for not being able to give him a sibling.  He has fulfilled my dreams for being here and being my child, but I couldn't protect him and I'm scared for his future not mine.  I have never really mourned; I never did when both my parents died back to back suddenly.  I have always been able to fix things and rationalize things away, but for the first time, I can't fix something that hurts the person I love the most in this world and no amount of prayers seems to be helping and I feel alone and scared out of mind. 

Thanks for waking me up.  I think I'm getting to the point where I'm getting tired and when I get tired I relinquish control and that is what is happening.  In terms of the testing, I want to make sure that there is no medical condition which could be overlooked.  Thanks to you I will ask more questions before subjecting him to any testing at all.  I will stop him and myself from using the word "problem" to describe his behavior.  Actually, it came about because last year he started wondering why everyone in his class is always telling him to stop this and that and some of the girls, bless their little hearts have taking to advising him on proper behaviors.  He told me that "mom they think I do it on purpose, but I can't help it; do I have a problem"?  I should have said no, you are different, but I said yes and he has been praying to God to heal his brain ever since -- he says Lord please heal my brain so my problem will go away.  I'm sorry for rambling too long.  Please restore your post; it may help not just me, but someone else.  I know that others read, but don't always post and I have learned so much from other posts.  Is a neuro-psychologic evaluation necessary at this time?  Does it yeild good information?  Is it better for the school to do it or doing it privately is best?  I have tried and could find a private neuro-psychologist willing to take a new patient without some kind of referral.

Thanks Grace.