New Mom, same story

Pumkinpie

New Member
My son is 9. He was kicked out of daycare when he was 5. Suspended every yr several times a yr for his violence. His diagnosis. . . wow where do I start. Possible brain damage due to hypoxia at birth, specific learning disorders, ADHD, Sensory Integration Disorder (SID), ODD, severe migraines, and the school put an educational diagnosis of autism on him, oh forgot the behavioral problems they diagnosed him with before. He was institutionalized for 2 weeks this summer for sending a teacher to the emergency room and hurt 2 others in the process. They had him on suicide watch the first week because of the horrible stuff he was saying. After he came home they had him on Risperdal and Focalin. The behaviors at home were worse. The depression was worse (he does not have a diagnosis for that). The talk of suicide and saying he should live here with me and his baby sister because of fear that he will hurt us. Of course my response was the only place he should be is where he is loved and that is with me. This yr he has been suspended 3 times sent his teacher to the Emergency room again. Got moved to a modified day where he only went to school 3 hrs a day. He has been urinating and soiling the floors. I have to check his room daily for wet spots or worse. I dont invite my friends over anymore. I told my husband that when I wake up it seems as if Im battling just to keep sanity. Two weeks ago the school called social services on accusing my husband and I of abusing him. I told them what happened. My son was in a foul mood the day before and My husband told him to pick up sticks out of the yard for a punishment for being so rude. My son attacked my husband in the kitchen. Well My husband tried to restrain him but trying to hold down a child that is. . . being savage is hard to do and he got bruises. The same day the school even told me they had to have 3 teachers restrain him in the hallway. Needless to say the case was dropped. I cant work anymore. Constant phone calls from the school has cause many problems. I am afraid I cant help him. I am also afraid for my 16 mo old daughter.
 

nvts

Active Member
Hi! I can't give you a lot of insight, but it really sounds like you've got your hands full

When you get a chance, update your profile with all of the pertinent info. Ages of difficult child's & easy child's, diagnosis, medications. Are you in the US?

You picked a great site, they are a great group of people here!

Beth
 

busywend

Well-Known Member
Oh my! Your son sounds severely violent and should not be living in your home. I am sorry. No mere mortal could handle that kind of violence. Nobody should have to live in that abusive household. Especially your 16 month old baby.

How on earth has he sent 2 teachers to the hospital? What was wrong with them? Maybe not my business, but seems pretty dangerous if they had to be treated. Why did they release your son? What was the discharge plan? Who is supporting you and your family? Do you have in home help? Please tell me there is a discharge plan???
 

Pumkinpie

New Member
No discharge plan they just gave us the medications and sent us on our way. My pediatrician isnt comfortable prescribing the medications but cant get a specialist to see him. We live in a rural area and services are over 2 hrs drive away. I am willing to drive it but I cant get him in to see anyone. One teacher he almost broke her thumb by forcing it backwards as two others teachers were trying to to get him to stop kicking and biting. The second time the teacher has heart problems and he head butted her in the chest hard enough to bruise but it caused her arrhythmias so she had to be put on an EKG and be monitored for several hrs. Support is little to none. The school doesnt want to deal with him.

Can anyone tell me why he soils and urinates in the carpets and his bed?
 

SRL

Active Member
Welcome, I'm glad that you found us.

I agree with busywend that your son needs some intense, more long term treatment in a setting where he isn't a danger to himself, you parents and especially your little one. Public schools simply can't deal with violent children and honestly they shouldn't be expected to. I am concerned for you all because if he's doing this much damage at age 9, it's only likely to get worse unless some very intensive, appropriate treatment is found. If you arrange that yourselves, you may have choices. If child protection gets involved, you won't have any say.

There are longer term therapeutic residential treatment centers which can provide safe environments with staff to help children with this level of problems. Did the hospital talk to you about those at all?
 

Pumkinpie

New Member
Read up on Encopresis several times. One problem its not involuntary he knows he does it. Tells me he just doesnt care to use the toilet anymore. We moved his room to one closer to the bathroom and have night light all over the house. Didnt make a difference. Then I noticed the living room started smelling really foul. Started moving the couch he has been soiling behind them and urinating between the cushion so we would recognize wet spots. Its also became apparent that he had been standing on the couch and urinating down the walls. One obvious location of fecal matter there was a stain but no feces. I moved the couch and it was located under the couch where he had moved the majority of it (what could be moved) and put it under the couch so it wouldnt be noticed. The soiling started in July the urinating has been a problem for over a yr. He has the attitude that i he wasnt caught in the act he didnt do it. Im ashamed to say that about 2 and half months ago I got so upset I started yelling about it. He attacked me. Normally Im the only who is "safe" from physical violence. When I was 8 mo pregnant though was the last time he got physical with me. Then I received 2 hard blows to the stomach before my husband managed to pull him away. He can be such a sweet boy but its like a flip of the switch and he is someone else. The hospital here doesnt deal with psychiatric matters for pediatrics. I feel as if I have been backed into a corner and I dont know where to turn to for help. I love him but dont know how to help him. When do you get to a point where a line has been crossed and you cant help anymore?
 

smallworld

Moderator
What kind of doctor is treating him? Can you talk to that doctor about getting more intensive help? Are you near a children's hospital that has a pediatric psychiatric department? Has your son had a full neurological workup and neuropsychological evaluation?

Sorry for all the questions, but we want to point you in the right direction for help.
 

Pumkinpie

New Member
He used to see a Pediatric neuropsychologist in Memphis (3 hrs away). We havent been to her in about 2 yrs. (scheduling issues on their part) The Hospital he went to this summer is called Center Pointe its North of St Louis which is about 2 and a half hrs away. That is also the closest Childrens Hospital. Right now my Pediatrician is prescribing the medications because the school is forcing his hand to. He has stated to me several times he is uncomfortable doing it because he isnt studied on these medications or the outcome. It took 3 mo for the Pediatrician to get a diagnosis from Center Pointe and the school is still waiting on the records. They didnt talk to me when they released him. It was a nurse who told me he was going home when I went in to visit him ( which I did daily having to stay with some friends that lived near by). Most of his outburst are at school just because he doesnt want to be there or do the work. If you ask him to do something that he doesnt want to do he gets explosive. I always remove my daughter from the room so she doesnt get caught up in the "storm". He has been like this since 4 yrs of age. When he was smaller it was easier to control. I talk to agencies at least weekly trying get help. Chasing my tail most of the time. I get #'s for this place or that but so far all I get is well we arent taking new patients or we dont deal with "those" types of problems.
 

smallworld

Moderator
Are there any child psychiatrists in your area who can evaluate and prescribe the medications? I agree that a pediatrician isn't the right person to be handling such a complicated case.

Even though the children's hospital is 2.5 hours away, you might want to call there and see what help they could offer your son there.
 
F

flutterbee

Guest
Do a google like this: autism: state (using your state) to see what kind of resources you have locally. I did a search based on St. Louis and found that Autism Speaks is located in St. Louis. Since your son has an autism diagnosis, that should open up a lot of doors for you. Even if it's just the school that gave him the diagnosis, it may be a way to get started with some services.

Hang in there. You certainly have your hands full.
 

Pumkinpie

New Member
I tried that since its not a medical diagnosis he doesnt qualify for any services. Went through an agency here (actually called them again today and got the same thing) They told me they dont deal with psychological problems just developmental like autism or chromosomal disorders or an IQ 70 and below. Once again asked for a referral to someone who could help. Nothing they can do.
 

SnowAngel

New Member
First off, Welcome!! Glad you found us.
They didnt talk to me when they released him.

Next time ask to speak with the charge nurse, house supervisor or hospital social worker if you are lacking the info or have unanswered questions.

I am not in your area, but I found the following places who might be able to direct you better. If they say they can't help you, ask if they know who might be able to. I got these off of
http://www.parentcenterhub.org/resources

State Mental Health Agency
Virginia Trotter-Betts, Commissioner
Department of Mental Health and Developmental Disabilities
Cordell Hull Building, 3rd Floor
425 5th Avenue North
Nashville, TN 37243
(615) 532-6500


Protection and Advocacy Agency
Shirley Shea, Executive Director
Disability Law & Advocacy Center of Tennessee (DLAC)
2416 21st Avenue South, Suite 100
Nashville, TN 37212
(901) 458-6013; (800) 342-1660 (Toll-free in TN only)

Programs for Children with Special Health Care Needs
Dee Hitz, Nursing Consultant
Children’s Special Services
Tennessee Department of Health
Cordell Hull Building, 5th Floor
425 5th Avenue North
Nashville, TN 37247-4750
(615) 741-2703
Web: http://www.tennessee.gov

Dawn Doak, Respite Project Coordinator
Tennessee Respite Network
1315 8th Avenue South
Nashville, TN 37203
(615) 269-7751; (800) 670-9882

I too had to quit my job. It stinks!! Please dont give up. Help is out there. I wish I could direct you more.
 

Pumkinpie

New Member
Had the pediatrician call to try to get an appointment. He called St Louis, Memphis, Little Rock, and Nashville (plus places in between). I cant even get on a waiting list. I feel like Im just whining now. lol Really I hate feeling like this but I guess today is a "bad" day for mom. Ive had two IEP's this month. He has been put on more restrictions at school. No recess with the general population. He isnt allowed to eat in the cafeteria anymore. Partially due to sensory issues and plus he feeds off the chaos. He gets bused to school and he is the only child on it now.
He starts his school day 45 min before others to reduce contact and most stressors that may cause problems through out the day. During breakfast and lunch he eats in a classroom. I gave his medications to the school for the nurse there to administer to him because they kept calling me saying my son told them I dont give him his medications. He does work in blocks of 15 min. This is new and I hope it helps. Also he has an exfootball player now as a companion at school who I am told is about 6'4" and can run faster then my son (been known to try to run from school grounds or run down hallways creating chaos). As for the soiling and urinating he doesnt do it anywhere else just home.
 

Sheila

Moderator
Definately a bad situation for everyone with difficult child hurting others.

In that he is prone to violence at school, I'm surprised they haven't tried to kick him out. I strongly suspect his age is the only thing that has saved him so far. After he turns 10, you may find he'll be charged with-assault even though his behavior may be beyond his control.

I'm assuming your child has an IEP in the USA. FYI, if the school district can not educate him without him hurting others, and obviously they can't, you may want to call an IEP meeting and attempt to get his placement changed to Residential Treatment Center (RTC).

The school district will not likely want to do Residential Treatment Center (RTC) because it is very expensive. However, they are mandated to educate your child in the least restrictive environment. If that's an Residential Treatment Center (RTC), that's the LRE. Further, if they do not have the ability to educate, they must contract with an entity that does.

As a preemptive measure and strategy for success in the future (assuming they will fight your request for placement now), I strongly urge you to write a letter to the sd asking for an IEP meeting to discuss a more restrict placement due to safety factors. It is imperative that you put the request in writing and send it via Certified Mail. In the event you need it in the future, and if things don't change you will, the Certified Mail is your "proof" you recognize the danger and asked for help.

I live in a rural area and I understand how very hard it is when you have a special needs child and competent medical care is so far away. A regular pediatrician may very well be out of his/her element when dealing with-a special needs child. These days, however, doctors can consult via satellite, telephone, etc. I'd try very hard to get a complete evaluation and see if your child's local doctor would be willing to "consult" with other pediatric professionals on medical, psychiatric care, and medication management.

Welcome aboard. :smile:
 
Hi Pie,

I have very limited experience with what you are going through, I just wanted to extend hugs and prayers and welcome you to the board. You found a soft place to land, and there are many seasoned mommies with words of wisdom.

Welcome~~
 

Sunshine1966

New Member
Wow, I was reading through your post and it just brought tears to my eyes. I don't know what else to say other than I will be praying for you and please remember that there are many here on this site who understand what you're going through. Do you have others in your support system around you? I don't think I would have made it this far if I didn't have those that I could confide in and vent with.

When you wonder if you're going to be able to keep your sanity I can relate so much to that. Through the experiences I have had with my difficult child there have been plenty of times that I saw a side of me I didn't know was there, in good things and in bad. I'm much more patient that I ever thought I was. I'm capable of much more love than I realized. But I also have to learn what my limits are, how to relief some of the pressure just to keep my own mental health in the vicinity of 'normal'.

Reading your subject line I just wanted to reply by saying, yes you are a new mom with the same story, but YOU are the one living your story and it is very real to you, not just another similar story.

Take care and I'll be praying for you and your family.

Debbie
 

smallworld

Moderator
I had a complicated situation getting my son appropriate care at the children's hospital in our city. Our pediatrician called the Hospitalist, a specialist who coordinates different departments within the hospital to get the child appropriate care. Maybe your children's hospital has a similar specialist . . .

If you can't find it within your children's hospital, PM me the name of your children's hospital and I'll dig around on its website to see what I can find.

You can't go on like this. You need to get your son appropriate care.
 

Pumkinpie

New Member
Well just got off the phone *again*. The Lady from the Regional Center who told me yesterday that there is nothing they can do for my son since he doesnt have developmental problems just psychiatric called me. She reviewed his case file and was floored. (Since nothing has changed in the past few months since I saw her last my eye brows raised). She says with the Sensory Integration Disorder (SID) and Central Auditory Processing Disorder he has all the signs of Autism are you sure he isnt Autistic? My response Mam I dont know he has been diagnosed with ODD and a slew of other things. The only time I know for certain he was tested was through the school. So I read her the reports of his new IEP and his test scores. I told her that she told me since it was an education diagnosis that it wouldnt hold water.

She reads her reports and tells me well his IQ is in the 90's he is well in the normal range. (I mmhmm to this) She asks me well can you get a Dr to test him. (Big Sigh) Can you find me a Dr who will see him? So now Ive called the two #'s she gave me of course atm there is no answer but it seems as if there might be a light at the end of the tunnel after all. Then she asks me about my daughter. She remembered her from when we did my difficult child's assessment. Well I go on to tell her that my daughter still doesnt talk not mom or dad or anything. That she has been terrified of strangers since an infant. (Her turn for the Big sigh) Well with an older sibling with autism studies show the younger ones have a 50% of having it themselves. *fear racing through heart now* She says they can start test for as young as 18 mo. Well tomorrow my daughter goes for her Audiologist appointment. From there I guess Ill have to chase tail too so I can figure out whats wrong with my easy child. Hoping she is just wanting to remain the baby and sees no need to talk to us. Hopefully chasing tail with my son will leave me with help and not just overly dizzy.
 

SRL

Active Member
Well, at least you have someone's attention!

You might want to check out these screening tools--they can be very helpful at the point that you are at:

The one most frequently mentioned here is Childbrain. Important note on this one--it isn't accurate if there are no early speech delays so it often doesn't pick up kids with higher functioning Asperger's Syndrome.
http://www.childbrain.com/pddq6.shtml

This is a great developmental checklist, designed specifically to monitor for Autism.
http://www.cdc.gov/ncbddd/autism/actearly/

I know this is hard but hang tight--we're here for you. There's a lot of kids on this forum with Autism who have shown good progress once they have been identified and proper placements and therapies were put in place.
 
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