New Here.......Don't Know Where To Turn...

[Dreamee]

My youngest son will be 5 in August. I don't know where to begin.......

From the time he was a few months old, I thought something was different. He didn't like to be held or rocked or cuddled. He didn't speak at all until he was 3. Now his speech is perfect but around the time he began to speak his behavior started to spin out of control.

He killed our pet hamster. He wasn't sad he just said he "smooshed" him and smiled. He hits hiself, pulls his own hair, and breaks everything. He is very cruel to his older brother. He tries to hurt him.....

He doesn't listen or follow any rules. When I'm angry he either laughs hysterically or tries to fight me. I have tried spanking, time out, taking things away....nothing works.

He licks everything and everyone. His pediatrician referred us to a specialist who said he didn't believe he was Autistic but did suggest ODD and Static Encephalopathy. We are going to family counseling starting Monday.

He picks and annoys to no end. In my face shrieking, spitting, etc. Sometimes I just cry and sometimes I have to leave the room.

Someone please tell me I am not alone. Please tell me there is something I can do to fix this......

 

[SRL]

Hi Dreamee, I'm glad that you found us. Static encephalopathy isn't a diagnosis we see commonly so I've been here so I'm including a definition for other posters.

"Permanent or unchanging brain damage. The effects on development depend on the part of the brain involved and on the severity of the damage. Developmental problems may include any of a range of disabilities such as cerebral palsy, learning disabilities, mental retardation, autism, Pervasive Developmental Disorder (PDD), speech delays, attention deficits, hearing & vision impairments, oral motor problems, etc."

I'm assuming it was a pediatric neurologist who gave this diagnosis based not only on behaviors and developmental history, but also on an MRI? There's a lot of range with this diagnosis--did s/he give you any idea about severity?

Family counseling may be helpful for you but the specialist also should have made sure that you have a team of specialists in place for your child. The licking and not wanting to be rocked or held are classic signs of sensory integration processing problems and should be diagnosed and treated by an occupational therapist. A doctor who can manage medications such as a child psychiatrist should be in place because if the diagnosis is correct in all likelihood that will be needed for issues such as aggression.
A team should be assembled at school to address placement and therapies. His speech may sound perfect, but you also need to know through assessment if what you are saying to him is being processed correctly and for that a speech/language pathologist should be involved. You didn't mention any of these areas, so let us know if you need direction there.

Hang in there--There is always hope! You will need the right professionals on your team though. On the homefront you'll want to get a copy of the book "The Explosive Child" as well as read the thread on it at the top of this board--I think that will help you especially in adjusting expectations and discarding discipline methods that don't work. Until he's stable I'd also recommend removing any other pets from the home and never leaving him alone with siblings. I realize this is a great hardship on families, but many of us (myself included) have had to do it for a time in order to keep the little ones safe.

 

[Dreamee]

The doctor was a neurologist. No MRI. He didn't tell us much at the visit. I got alot of papers in the mail from the doctor after the visit and at the bottom it said Diagnosis: Static encephalopathy and ODD.

He did go last week for a speech evaluation. The speech therapist agreed that his speech is perfect but he shows delays in areas like when asked "Tell me 2 things about your shirt" He didn't really understand.

My son can be very loving now. He will cuddle. When he was a baby was when this was a problem.

He behaved almost perfectly at the doctor visit. He is very shy to people he first meets and very nervous. I wish I had a video camera to show the doctor how much of a problem this is at home.

He recommended we enroll him in school this year. I'm so worried about this. He said he thought it would be challenging for us but good for him.

He also told us to stop spanking. (I rarely spank anyway) but the time out does not work. They did want to do a swallow test? He has problems swallowing some foods....noodles.

 

[LovingAbbey]

Hi!

I just wanted to say a video camera could really be benefical in getting help for your difficult child. If you can borrow one from someone for a day. It can really make an impression to see the behaviors that a child is displaying instead of just hearing a parent. If possible I would recommend a neuropsychological evalution conducted by a pediatric neuropsychologist. I'm a little concerned that they could make that type of diagnosis without an MRI. If you want more information from the specialist, you could call the office and request a follow up visit to discuss the results.

Was the speech and lang. evaluation done by the school or privately? If it was not the school, I would recommend that you submit a letter in writting to your local special education department requesting a full team evalution. Also provide them with any testing reports that you have. It's always better to send the letter through certified mail, it costs more but it's best to have the proof that they signed for the letter--just in case.

As for the spanking, I think most parents of difficult children have tried at one point or another. And I've found it just results in the child be more aggressive. And it teachs the difficult child that if someone doesn't do what you want them to do, than you hit them.

This place was a life saver when I found it.

Welcome, glad you found it, sorry you had to be here!

 

[Dreamee]

The place his pediatrician referred us to has everything in one? His speech evaluation was done there by a speech pathologist. He saw the neurologist there. We will attend family counseling there. It did concern me that I received those papers in the mail. The doctor didn't mention any of those things in the visit. He just said he didn't believe him to have Autism but that something was going on.

My son has not been in school yet. He is due to start Kindergarten this year.

He also lies about everything. I don't know if this is a part of ODD or the other.

I'm just so tired and feel like a failure. I broke down in my doctors office recently after my surgery. She started me on anti depressents. I haven't noticed a difference in the way I feel. I have so much stress in my life right now. My mom was diagnosed with a terminal illness, then she was in a car accident and in ICU for 2 weeks, I was in a car accident, I had surgery, my oldest just had surgery for his appendix, my landlord is selling so we have to find a new place to live, my neighbor upstairs has called Social Services on me who came to my house at 11 at night, they did an investigation and found everything okay.

I'm so sorry to spill my guts out like this I'm just at my wits end......

 

[SRL]

Oh you poor dear! Parenting these kids is never easy and you have a huge load on top of it. Many of our moms do turn to antidepressants and/or counseling. Mom needs to be able to function or the whole family falls apart.

The lying can be due to ODD but it can also be at least in part due to misunderstanding. There are some understanding aspects of speech that are easily misinterpreted as bad behavior by parents and other adults. I agree to stop all forms of discipline that aren't working, including spanking. Focus on prevention and keeping everyone safe for now.

I'm with LovingAbbey on this one: I'd want an MRI, neuropsycholgical evaluation to determine strengths, weaknesses, etc. as well as a full occupational therapy workup including swallowing test. What you have had done is a very skim the surface evaluation and you want "the works".

I am extremely uneasy with this diagnosis given without an MRI being done. Sometimes there are neurological things going on that can only be determined or ruled out by an MRI and EEG. I would make a call to your own pediatrician and tell him/her that you feel this neurological appointment was incomplete and that you would like have those scheduled.

 

[SRL]

Also, have you got the ball rolling for an evaluation through the school district so an appropriate classroom setting and therapies can be determined?

 

[Dreamee]

We had family counseling this morning. It went okay. We had taken the boys to see Pirates of the Carribean yesterday and the counsler said we should not have done that. I don't know if I agree with that or not.....we have seen all of the Pirate movies.

He also told me my son enjoys breaking me down. He said there are kids who get a kick out of making people cry or upset said it gives them a feeling of empowerment. He told me to try and be as emotionless as possible when disciplining him.

He said the diagnois of Static Encephalopathy was made because when an evaluation was done at age 2 my son was delayed in the same areas he is delayed in now at almost 5.

I told him he would not stay in time out and runs from me or tries to fight me. He told me to hold him there if I have to. He also said to quit trying to explain everything to him. He said he doesn't understand. Just to tell him what I want. Example: I can't play with you right now cause you hit me. We can try tomorrow., Or pick your toys up you have 5 minutes, etc.

I haven't talked to the school district but I do plan too. We are not sure at this point which district we will be in. We have to move by the end of July.

 

[smallworld]

I agree with SRL and LovingAbby that you need further neurological testing to "prove" (or disprove) the diagnosis of static Encephlopathy. This is not a diagnosis made solely by behavioral or developmental observation. Until you know exactly what's going on with your son, there is no way you can put the proper interventions into place (including the family counselor, who may or may not be offering helpful suggestions based on a diagnosis that has not been nailed down).

You should also get a copy of The Explosive Child by Ross Greene. It has helped many of us on this board parent our extra-challenging children.

Sorry you're having such a rough time. Hang in there.

 

[Dreamee]

How do I go about getting more tests? Do I talk to his pediatrician? Or the doctors whom he is seeing now?

Is this something I can just pick up the phone book and call one? Do I need another referral?

Thanks so much for all your help

 

[SRL]

"Static" means not moving so if developmentally he was the same at 2 as he is at 5, then that is reasonable but it's not a very informative diagnosis. What we are suggesting is that you want to go further and find out WHY. I'm definitely not an expert on this disorder (or any other for that matter) but if this was my kiddo and there was an underlying cause then I would want to know what it was. SE looks as if it could be the result of a number of different neurological issues including fetal alcohol syndrome, Cerebral Palsy, various genetic disorders, etc. It's possible you could find out the answer and find yourself already on the correct treatment path but it's also possible that changes could be in order. For instance, children with some genetic disorders require dietary changes to minimize the effects.

I would call your pediatrician to discuss the diagnosis. Tell him/her that you want more answers: determine the reason for the SE, confirm/rule out sensory and motor skill problems, and get a thorough grasp on strengths and weaknesses. S/he could order an MRI, but I'd also suggest asking for a referral to a pediatric neuropsychologist as well as a complete Occupational Therapist (OT) evaluation including a swallowing test and get your pediatrician's suggestion on the best route to go (which might be where you just were).

About the movie, personally I feel very strongly that children with aggressive/violent tendencies should be sheltered from aggressive/violent/imitatable activity on all screens. It's not an easy choice to make but it made a huge difference for my difficult child. We had a total ban for a good number of years then eventually we were able to gradually allow him more of the kinds of things his peers could handle, but only if he could keep his own aggression in check.