Static Encephalopathy is all I have to go on... - Mothering Forums

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Old 08-14-2009, 01:12 PM - Thread Starter
 
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New to this board so please bear with me. My son was born at 43 1/2 weeks following a rather uneventful pregnancy. I had the usual bouts with placenta previa and first trimester bleeding. FAP test came back elevated risk for spina bifida. Had an extensive ultrasound done, where they said his spine was closed and he would be fine. Flash forward to when he was six months old. He couldn't hold his head up and had his first CT scan. Eyes had started crossing, and doc said there was nothing to worry about. By the time he was a full year, his eyes were completely crossed (strabismus in both eyes) that we had surgically repaired at age two. Still I had to fight with the doc, who kept telling me that I had a happy healthy baby and I needed to quit pushing my insecurities off on him. I enrolled him in EIP and followed with those services until the school district took over at age three, yet his doc would not admit that there was something intensely wrong with him. He received PT, OT and speech through EIP. I still fought with doc to get a referral to a specialist, and all the while doc told me there was nothing wrong with my son. At around age three, he began having screaming fits, vomitting, and ended up in ER countless times. This continued over two years, and each time I followed up with regular doc, same thing. Nothing wrong with son. Quit looking for problems when there are none. Finally, around sixth birthday, a RNP was filling in for doc, examined my son, and gave the referral to specialist we were looking for. The first appointment was with Child Development, who sent us to neurology. We have been following with them for five years now, but all I have is a diagnosis of Static Encephalopathy. I don't have a class or subclass, and all I have found out is that this is the "umbrella plan" that CP and fetal alcohol poisoning go under. They have been unable to tell me any other things that I question, such as how much of the problems I have with him are from his "disability", and how much is refusal. I understand that we had a late start getting him the proper services, and referrals for such help. I have found references showing that children stop learning (as far as changes with the disability and not learning in general) around the age of eight, and we did not have much time before this age when he was diagnosed. We have been to see endocrine and genetics specialist who have not found a genetic or chromosomal reasoning for the defect.

My problem is that the specialist we see are 100 miles away. As far as I know, these are the only pediatric specialists in my state, and normal specialists will not even LOOK at my son. Everyone near me refuses to see him, talk to him, or offer any kind of advice for us. I have tried looking for support groups, or anyone who can answer my questions. The ones that the specialists recommend are in the city they are in, and it is not feasible to try to join these groups or have my child interact with other children in this group because of the distance involved. He misses so much school already because of various appointments, and it wouldn't be wise to push the issue with the school for the sake of having my son around other child who are like him.

I do not know anyone else who has a child with special needs. I attempted to join a support group when my son was young, and I was told that it was for autism. At that point, we did not have a diagnosis, but one of the women in the group stated that my son read more like a head trauma than autism, even though he had several of the "classic" symptoms. It was at that point that I changed from seeking an autism diagnosis to head trauma. I have so many questions that I need to ask, and no one who seems to be able to help me. I am a single mother of two children, and a live-in boyfriend with a child. The other children in our home are "normal" by all standards, and do not pose the problems in child rearing that my son does.

Here are my questions: How can I find other people in my area who can commiserate with me and swap advice on how to deal with every day life? Is there any way to know how much of my daily struggles are from the brain defect and how much is just normal, preteen anxiety or refusal? Is there any way to work on my patience, as I have seemed to be losing it more and more lately? Any advice that someone could give me in raising a preteen with special needs, who knows no one else who is like him (even in school)? Any advice anyone has is welcome. I appreciate it in advance, and thanks for listening to me rant!
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Old 08-14-2009, 03:31 PM
 
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You're in the right place! A lot of us here on this message board don't have much support in real life, a lot of us have distanced ourselves from our previous "mommy friends" because they just don't understand what it's like to have a child with special needs.

But every single one of us on this board understands! We're here to offer our virtual support to you, here as a sounding board when you need to cry/vent, here to encourage you when you're feeling overwhelmed, here to share our experiences in the hope of shedding some new light on your own.

SO...ask away!!! Get to know us, and we'll get to know you!!!

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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Old 08-14-2009, 07:21 PM - Thread Starter
 
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I think my biggest problem is that no one around me understands what I am going through. It's hard to raise a special needs child, and it's only getting harder the closer he gets to puberty. He tries so hard to be "normal" but is far from it. Most of the problems that I have with him are that I have to teach him over and over every day all of the things that we have done before. Bathing, washing his hair, getting his dirty clothes in the hamper. Stupid things like that. I think if I had someone tell me "yes, this is something you have to deal with every day, and it's unlikely to get better", then I might be able to make concessions with it. Lately he seems to be regressing and I have to tell him nearly every step to make. Yes, he is in school. Yes, he has inclusion. (And I wonder if they have the same problems I do, or if they just have better training on how to deal with it.) But from the time he walks in the door to the time he goes to bed, I have to tell him every step I expect him to make unless he has free time and is choosing to do as he wishes. I have enlisted the help of my boyfriend, thinking he may have some influence on my son wanting to be clean and smell nice, but to no avail. Neither of us know what to do or where else to turn. And it's just getting harder. Probably that it's on my nerves more and more, and I have no one who even moderately understands. I don't know, but I am going to continue to look for my answers.
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Old 08-15-2009, 06:22 PM
 
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You sound like you desperately need both information and support.
What do you mean by you feel he is regressing. In self help areas only or in other areas as well?
Has his situation been stable/unchanging over the years?

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Old 08-16-2009, 04:43 PM - Thread Starter
 
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mostly it's his self-help. where yesterday he got a shower, and I had to go in and check to make sure he washed everything, today when he gets out he may have forgotten to wash under his arms or his boy parts. where yesterday he may have remembered some of his math facts, today he might need help. in all areas, it may be forgetfulness, or it may be regression. I'm really not sure. and being that he is my oldest, and I'm not sure if this is a general pre-teen issue or if it's something that is specific to him. I have people who tell me "oh, he's just being a boy!" but I'm not so sure this is what the problem is. also, it may be parenting techniques that differ from parent to parent. it usually seems worse when he comes from his father's or grandmother's house and gets better throughout the week. it may be that they baby him (against my wishes and ultimately to my chagrin) and I am more firm. generally, he is a bit slower than other children when catching on to ideas, following directions, and understanding concepts, but I know that he is not completely incapacitated. sometimes, threatening discipline for not doing things that he knows to do will fix some of the problem. other times, it's like he doesn't even understand what he is being asked to do or why. and I think that may be one of my ultimate problems. is it normal for these children to vary from day to day in their understanding of what is expected of them, or do they generally stay the same once they grasp the concept of any one specific thing? most times I feel like I am being overbearing on him because I want him to be the best he can, and I don't allow him to use his "disability" as a crutch. I stress that he is capable of learning anything that he wants to learn, it just may take him a little more help. I want him to be able to tend to his personal needs, such as bathing and dressing himself with little or no help. (this week was our first week in the new school year, and four different days he couldn't pick his shoes out and ultimately tried putting my boyfriend's on. also, he put them on the wrong foot three times whereas he didn't do that more than three times all year last year. could it be that the new shoes didn't look the same to him as the ones we use as his everyday shoes, and he couldn't LOOK at them and visualize what foot to put them on? does any of this make any sense?) I am beginning to wonder if I should resign myself to the idea of caring for him for the rest of my life, where before I had tried to teach him to be a contributing member of society who could make his own choices. it's getting to be that time where I need to start thinking about these things seriously because he will have to transition either to high school or vocational school within the next couple of years, and he just seems to get further and further behind in academic areas. sometimes, it's really hard to explain exactly what is going on and how I feel about it, and I wonder if anyone really understands what I'm trying to say amid all my rambling. and keep in mind that I've been told for so long to quit pushing my insecurities off on my son, and my sister has actually told me that I need to be glad that I have it easier raising my son than she does with an ADHD child. I mean, what the ....? I find myself between a rock and a hard place, and even getting my thoughts across to people who might understand seems to be a feat in and of itself. thanks for listening to my rant!
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Old 08-16-2009, 05:18 PM
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Some of the stuff you describe sounds like "normal pre-teen boy stuff" - the washing, the putting clothes in the hamper, etc. I have an 11 and 9 year old who are not special needs and they are bad with this stuff too.

However, if your son's difficutlies go beyond the normal boy stuff (and from your frustration, they probably do), you should consider getting an eval from a neuropsychologist. This type of specialist can do testing on your son to pinpoint where his areas of difficulty are with learning, memory, language, visual, visual/motor, auditory processing, etc. This information will go a long way to determining what your son is capable of and what he truly needs help with.

The report you get should also give you a list of recommendations of things to help him both with everyday functioning and at school.
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Old 08-16-2009, 06:56 PM - Thread Starter
 
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Really? they can really do that? I've taken my son to nearly every specialist at the children's clinic, and I've never heard of neuropsych. would it be in with the neurologist, or would it be somewhere else? and how do I go about finding out? thanks for the input!
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Old 08-16-2009, 07:16 PM
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A neuropsychologist is most likely going to be with a psychological group or with a large hospital/clinic. (We went to one at the Kennedy Krieger Institute in Baltimore which is a large children's hospital specializing in brain based problems). Perhaps you could ask the neurologist or ask the special ed department at your son's school. Neuropsych testing was very helpful to us in understanding where our son's difficulties are. We also did get a list of recommendations to help him.
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Old 08-16-2009, 09:18 PM - Thread Starter
 
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this is the one problem I have with living in a small town. the hospital where our specialists work out of is a children's hospital, but I don't know that they have the resources that a large city would. our children's hospital serves the entire state, and since I'm from Mississipppi, that's not saying a whole lot. I wonder how much trouble it would be to get him in to see someone somewhere else.... I'll look into that. thanks for the input!
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Old 08-25-2009, 11:06 AM
 
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I have a daughter with static encephalopathy so I can relate to so much of what you said. I'm sorry this has been such a frustrating journey for you. My journey is hard, too, but at least I've always had good support from doctors.

Our neurodevelopmental ped says that the only consistent thing with kids that have brain injuries is that they are inconsistent. It drives me batty though! LOL

I agree with the recommendation to find a neuropsychologist. We did testing at age 5 with my daughter and are going to try to do it again this year (when she's 7). We use Cincinnati Children's hospital.

If you need helping finding a place, you can PM me and I'll be glad to help you.
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Old 08-25-2009, 03:09 PM
 
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DS is 6.5, and I don't really have advice on specialists, but here is my experience. My son is on the autism spectrum, and sometimes forgets things like that or is just so busy concentrating on what he is into that he is not paying attention to what he should be doing. He is very visually oriented and I have found in the past that having a visual reminder really helps. Maybe you could try having a picture chart or checklist of all he needs to do in the mornings and evenings to get ready? Like one for brush teeth, comb hair, wash body in shower, wash hair, get clothes on, put shoes on, etc. Maybe he also needs some help in laying his clothes out the night before or being better organized so he can find things. I am constantly having to remind DS to put his shoes on the shoe rack so he can find them next time, hang up his jacket or backpack, etc. Is your DS into routines? Mine most definitely is and I find if we do things the same way every morning/evening, he remembers things better and it goes more smoothly for him. I hope you can find the services and support you need!

Jill stillheart.gif Chris (7/96), mommy to 3 sweet redheads: jumpers.gif Matthew autismribbon.gif (12/02), Michelle (8/05) and Marissa (1/10). Nursing since 2002.
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Old 10-16-2009, 02:40 AM - Thread Starter
 
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Sorry it has taken me so long to get back to this. Life has been crazy. I went back to work after surgery, only to find out that the other person in my department, the department manager, would have to be out for eight weeks after having a major emergency surgery. My time has shrunk to nothing. The update is as follows: Since my last post, we went back to the endocrinologist, who I requested a neuropsych eval from. We had a sleep study done that had been scheduled since mid-June. Next week we go for the eval, and here's hoping that they can give me some answers. It gets to be so irritating to hear "he may or may not" to every question I ask. "Will he progress?" Well, he may or may not. "Will he go through puberty like a normal child, and will I have to explain his body to him?" Well, he may or may not. It's too soon to tell right now. Now, he may or may not begin having seizures. If this happens, give me a call right away. Don't be alarmed if it does happen, but it may not.... UGH!!!

I don't know if my problems are worse these days, or if my fuse is just getting shorter and shorter. I find myself yelling most days. It's not just him, it's the girls too. Maybe it's just that I'm overwhelmed. I feel like my son doesn't hear what I say to him. So he keeps pushing until I'm yelling my response to him. Just this afternoon, after I got the kids into the van and was driving away from after school care, my son hands me two pieces of paper. I glanced at both, then slid them under my leg so they wouldn't get lost in the mess that is my vehicle. "Well, what do you think?" I don't know, I didn't look at it. "Yes, you did. I saw you look at it." Well, I didn't read it. I just looked at it. I can't read it and drive too. "Well, read it." I can't read it while I'm trying to drive. I'll read it when we get home. "Well, why didn't you read it?" BECAUSE I'M DRIVING! I CAN'T READ IT WHILE I'M DRIVING!!!! I end up yelling because I don't feel like he hears what I say when I talk in a normal voice. This morning, we ended up yelling at each other because he was convinced I was lying about not having any cash. He wanted a dollar, and I told him I didn't have any money. Then he wanted me to write a check for $1 so he could get an ice cream at lunch. But when I tried explaining to him that I wasn't going to send a $1 check to the school for an ice cream, he got upset because he KNEW that I had the money and I just wouldn't give it to him.

Our after school time consists of getting everything that they put into the van that day out (book bags, papers, toys, shoes if they have taken them off...), taking shoes off at the door, and taking your own stuff to your room. The kids are allowed to play or watch tv while I begin cooking dinner. After we eat, it's time for homework. My son isn't even bringing his homework folder home so that I can know what he has for homework, much less the books that he would need if he did have homework. He has an inclusion/study hall period at the end of the day where his inclusion teacher is with him and works with him on any school work he didn't finish that day. And when he does bring his homework folder home, he hasn't written his homework for the day in it. We end up having the discussion about writing his homework down and bringing his homework folder home so I can help him with his homework and make sure it gets done. About 730, we start showers. I have to make sure that he has bathed properly, washed his hair properly, and at least twice a week I have to send him back to finish rinsing his hair or body. Right before bed, he gets his growth hormone. In the morning, I pull the clothes he will wear out of the closet and lay them on his bed. (I should probably mention that he doesn't see very well. He's mostly blind in one eye, and can't see the broad side of a barn most of the time. Again, is this a true problem, or "I just don't care"? His vision is fine in the good eye, so fine in fact that he doesn't even have corrective lenses.) He will ask me where his clothes are, where his socks are, where his book bag is. I have to remind him to put on deodorant (to which his reply this morning was he will be glad when he's grown and he has his own house and he won't have to wear deodorant, and I told him that he would stink and no one would want to be around him...) and tell him to get his shoes on. I let him go back to wearing his every day shoes, and that seems to have fixed the problem with not knowing which ones are his and what foot to put them on. But after more than nine weeks of school five days a week, he still asks me where his clothes are. I walk into his room every morning, turn on his light, pull his clothes out of the closet and lay them on the foot of the bed. Three times a week, he asks where his pants are. Under your shirt. I laid them on the bed under your shirt, just like I did yesterday, and the day before that and the day before that.

Lately, I just feel like I need a break. My mom keeps offering to keep him for a while, but I don't think that would be best for him. He started a while back about wanting to go live with his father. I agreed that if his father could get it together and do the things he should be doing before Christmas break that my son could move over there until the end of the school year. His father isn't even trying to do what he should be do, much less possess the capabilities of transporting him to and from the doctors we see. I think he finally got that idea out of his head. Mostly, I just want answers. I may be on the verge of getting those next week. I hope I hope I hope!!! We'll just add this psychologist to the growing number of specialists we see. And maybe some day soon, I'll have the information I seek, a game plan, and a little more patience. I'm really trying to work on the patience, but I feel like I'm spinning my wheels. I just don't want to be the mom that yells at her kids. Thanks for listening to my vent!!!
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Old 10-23-2009, 06:46 PM
 
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Hang in there mama. It sounds like a really tough situation, you're doing a great job. Your kids are lucky to have you.
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Old 08-22-2013, 08:56 PM
 
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It is now 4 yrs later.  I feel for you and wonder if you still contact this thread. 

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