A New Member - Advice Please

[beachlife]

I am so glad I found this site today during a search for advice and guidance on the Internet. I am in search of and in need of advice related to my daughter. She has awful outburst that are most of the time out of my control. Let's just say I have my hands full. I've tried everything possible and I am feel like I am going to lose my mind. I am a single mom and divorced my ex husband soon after my daughter was born. I'll list some background on my daughter, the extent of her evaluations and her diagnosis.

My daughter is eight years old and was diagnosed last year with ADHD, Sensory Integration Disorder (SID) and NonVerbal Learning Disorder (NVLD). The road to diagnosis was not an easy one and this was due to the difficulty of finding healthcare professionals that didn't brush me off or think my daughter's issues were related to being spoiled. From a young age she was diagnosed with milk and soy allergies and was placed on a special formula. She had colic and her sensory issues were over the top. Giving a bath, washing up, tags, socks, brushing hair was all a nightmare. She had god awful temper tantrums that would last hours on end. Sometimes she would just tear up my home. I took her to doctor after doctor. I was told she is fine she just needs discipline or I was told she is just plain spoiled. I was told she had CD and was BiPolar (BP). From the outside my daughter appeared as normal as any other child. I think it baffled doctors that she was very verbal and bright and had NO issues outside the home. She was a complete angel in school and never had an issue with other children. Once she hit kindergarten the problems really started to get out of control and in 1st grade I was at my wits end. One day I was driving and she was having a melt down and threw a plastic drink bottle at my head. Thankfully I have an excellent job and healthcare benefits. I called my pediatrican and said enough is enough find me the best doctors psychiatrist and child psychologist and I don't care if I have to pay out of pocket.

Fast forward almost a year and the evaluation process was complete. Her psychiatrist had ordered brain scans and psychological and educational evaluations. Her child psychologist ordered evaluations from the Occupational Therapist (OT). Results:
1) Brain Scans normal - no seizures
2) Psychological/Educational Exams - ADHD and NonVerbal Learning Disorder (NVLD). Her IQ tests showed a difference between the verbal and non verbal components to lead to a diagnosis of NonVerbal Learning Disorder (NVLD). Due to my daughters difficulty during the IQ testing the doctor did not feel the scores were a true representation. She scored VERY high on the achievement scores very often in the superior range.
3) Occupational Therapist (OT) evaluation revealed Sensory Integration Disorder (SID).

My daughter went through therapy with her child psychologist and Occupational Therapist (OT) and she is now completing 2nd grade. She was placed on medication almost a year ago for ADHD. Her school is WONDERFUL. She was placed with an awesome teacher that really embraced her areas of opportunity in math and she worked with an educational specialist. She really had a great year and I am SOOO proud of her. In addition she is back to her passion of dancing. She is taking four dance classes a week and LOVES them. It's great therapy for her especially for the Sensory Integration Disorder (SID).

Now for the problems. I have extreme difficulty discipling my daughter. She often becomes violent with me. She will hit me throw things at me at curse at me. Often because I ask her to do something she doesn't want to do. Like tonight I told her she needed to shower and OMG she let me have it. The worst part is I have no control over her. I've tried the bear hugs, the soothing voice etc. nothing works. Her behavior issues at HOME only rear their ugly head when I tell her no or its transition time and her routine ends. She can't let go of things. If I tell her no she goes on and on and on asking but why mommy but why mommy even though I give her an explanation. She can't turn if off. In terms of transition sHe is about to leave me for almost two months for her dad's. Last week I had to take her to an emergency visit to her psychiatrist since she came after me with a violence I have never seen. The psychiatrist said she is not in danger of hurting herself or anyone else. Her neurological impairment makes it difficult for her during transition times and difficult to control her frustration and anger. He placed her on another short term medicine to get her through the transition. The problem is she won't take it. This morning she cursed at me and just flat out refuses to take it. How do you force an eight year old to take medicine? How do you manage the outbursts and violence? How do you help yourself from getting so angry when you devote your life to a child you love and do everything in your power to help her and she curses you out and wants to hurt you? The worst part is each day I am told "your daughter is so sweet, so wonderful, so well behaved etc" and I can't enjoy that part of her. It is true that there are times when she is so wonderful and sweet and gentle and its a gift its peaceful. She is so very up and down. It is very hard to parent this way and I feel like an awful mom even writing this stuff. Does anyone have advice from experience on getting through this? I want to have fun in my home and I want it to be a happy place. Instead I feel like it is a constant battleground and tense. Help please....thanks!

 

[nvts]

Hi! First of all welcome to the crowd. We're a pretty good group of people with a vast amount of experience with a vast number of issues. You'll find quite a few with a lot of common ground, so don't feel like you're in it alone!

You're far from an awful mom - we all write a lot of this stuff - it's an exhausting undertaking - I know how you feel about the constant battleground - it's like Freddy Kreuger lives here, a total nightmare.

Has anyone looked into the Autistic spectrum? My oldest son and daughter (difficult child 1 & 3) present almost identically to your daughter except they didn't keep it together in school. Aspergers Syndrome is their primary diagnosis. If a neuropsychologist is done, you may get some input in that regard. How is her eye contact with people (not necessarily you - people in the store, teachers, administrators, etc.)?

Also, I would suggest reading the Explosive Child by Ross Greene. Some people like it, most take something away from it. It helped out here significantly!

Keep coming back and post, post, post. It really helps and like I said, it's a very good group of people - you form attachments!

Talk to you soon!

Beth

 

[Wiped Out]

Welcome beachlife!
So glad you found us-you have truly found a soft place to land. While I never experienced my child being great in one place and not the other many will tell you that it is very common. They work hard all day at holding it together at school and then come home and melt down with the ones they know are here for them no matter what.

One of your questions was how do you get an 8 year old to take medications? We had this problem (and sometimes still do) with my difficult child. It has always been one of the things we refuse to bend on. His whole world stops until he finally takes it. Believe me it isn't always easy but he knows he gets nothing, no tv, games, computer time until he takes it. Sometimes if he continues to refuse we have to tell him computer or tv will be gone for even longer periods.

I'm sorry you are also dealing with the violence. I've lived with it with my difficult child and it is very difficult. I'm surprised the psychiatrist says she is not in danger of hurting anyone else when she came after you. That part is confusing to me.

One book many of us like here is The Explosive Child by Ross Greene-it's a good read and offers many ideas on how to parent our difficult kiddos.

Again welcome to our corner of the world.

 

[Marguerite]

Welcome to the site. There is help here.

A few questions - with your daughter's current list of labels, it seems to me to be heading for alphabet soup. Sometimes there can be ONE disorder that is an umbrella over the lot. For example, Sensory Integration Disorder (SID) is something you find in a few other disorders. If I listed difficult child 3's labels, we would have ADHD, Sensory Integration Disorder (SID), Obsessive Compulsive Disorder (OCD), hyperlexia, ODD, language delay - probably a lot of others. But they all are explained, in him, by autism. difficult child 3 is now 16 years old and has adapted well. We do have behaviour issues, but frankly a lot of them are because his brain learns differently and the usual discipline methods that seem to work acceptably well on us when we were kids, and which other parents use - these are disastrous for kids like ours.

If you spank a kid like difficult child 3, all it does is teach him that physical attack is what you do when someone does something you don't like. Similarly - if we shout at him, he then sees that shouting is what you do in that situation. For him, there is no distinction between him, and anyone else. To his mind, we know what he is thinking because inside his head, those thoughts are loud enough for anyone to hear. So when we fail to understand him, it's clear (to him) that we are choosing to ignore him, rather than simply not understanding. He's a lot better with this now, but it was a rough ride there for a while.

Discipline - read "The Explosive Child" by Ross Greene, it explains this a lot better as well as gives you strategies to use in your situation. But you need to change your mindset - this child cannot be expected to learn to follow the usual methods/rules. You need to work with the child to find a more effective way. However, that more effective way can actually be a short-cut to maturity. It also can work with "normal" kids too, so you don't have to have different rules for one kid and not others.

The explanations - that worked for us, but sometimes you have to answer the question the child is not asking. I suspect your daughter is expecting you to be able to read her mind, and is frustrated when you stubbornly fail to (from her point of view). We found that we needed to explain to difficult child 3 exactly what is his diagnosis, and to also involve him in his own management. A kid who doesn't want to take medications - we ask him why. We listen to the answer. We then explain why the medications were prescribed and if we have to, we get the doctor to explain this. We say, "If you have a problem with this, we need to find something to help you, because the medications are important.

A friend of ours (a classmate of difficult child 3's at his after-school drama class for local kids with disabilities) has been put on Concerta. They found it caused rebound problems, but he did realise he liked it when he was medicated; he felt he was coping better and the teachers were nicer to him. But he didn't like how he felt at the end of each day - always in trouble, never being able to sit still, feeling upset and teary. So they've taken him off Concerta and are trialling dexamphetamine. When we saw him two evenings ago, it had all worn off but without rebound. He was bouncing off the walls, but not teary, not overly aggressive as he had been after Concerta. His mother involved him in the reasons and the information, because she said to him, "These medications are to make it easier for you to cope; there is a switch in your brain that isn't working properly, these pills are to flip that switch for a little while. This medication wears off in a few hours so if you don't like it then it won't be staying in your system, you will have it right out of your system by nightfall." So he has gone from being very resistant, to being cooperative, because he now realises this will help him.

So a quick answer (because I have only a few minutes now, I will post more later) - how do you force a kid like this? You don't. You mustn't. Instead, you need to become the helper, the facilitator, and not the driving force. The child needs to see you as someone to call on for support and help.

This won't fix the underlying problems, but it makes things easier to manage and can help you find your way out of the forest.

A quick look at Pervasive Developmental Disorder (PDD) - go to www.childbrain.com and look for their unofficial Pervasive Developmental Disorder (PDD) questionnaire. Run the test, print it out whatever the result, then see what the doctor says. Organise a neuropsychologist assessment (because people like OTs and Speech Therapists can only report on their own special area, however valuable that is) and see if you can get a more comprehensive (and therefore more globally helpful) label.

I'll be back later when I'm at home and not piggybacking on someone else's network!

Marg (at difficult child 3's school, in the library!)

 

[BusynMember]

I am wondering if she ever saw a neuropsychologist. To be honest, her hodgepodge of diagnoses sounds a lot like high functioning autistic spectrum disorder. Does she have the proper social skills with her same age peers?
Sounds to me like she is acting out out of frustration. I'd see a neuropsychologist. I don't know what a PsychoEducational Specialist is, but I'd trust a neuropsychologist more because they are looking for everything...and they do 6-10 hours of testing.
I wouild disregard any professional that mentioned the words "spoiled" or Conduct Disorder. Something else is going on and in my humble opinion they haven't quite nailed it yet. If she's on the spectrum she needs some very specific social skills interventions or s he could be handicapped forever by her lack kof ability to read social cues and to interact normally. My son is on the spectrum and he got the usual hodgepodge of diagnosis. first too...including Sensory Integration Disorder (SID).

A big question: Can she TRANSITION from one activity to another without raging??

Welcome to the board!

 

[SRL]

I am wondering if she ever saw a neuropsychologist. To be honest, her hodgepodge of diagnoses sounds a lot like high functioning autistic spectrum disorder.

Non-verbal Learning Disability has many overlapping symptoms with High-Functioning Autism (HFA), including transition problems, and is usually harder to get a professional to recognize. Children with either can have the behavioral aspects. I believe that many of the treatments are the same, the primary difference being that kids on the spectrum tend to be highly visual-spatial. Personally if her evaluations were recent I would consider the diagnoses working dxs--live with them for awhile and see how things go. If they don't seem to fit on down the road or if she isn't able to get the school services she needs then revisit the assessments. The only thing I might add is a speech-language evaluation if that hasn't been done already to make sure she can handle things like multi-step instructions, and to help her with social speech tasks.

Have you and the school staff been using strategies specifically for kids with NonVerbal Learning Disorder (NVLD), and if so, are they working? Is there much different in the way that she responds to auditory input as opposed to written language?

Some medications are available in liquid form and can be added to foods or beverages.

I'm honestly getting really tired of professionals being baffled by children acting differently at school than at home. We see it all the time here.

 

[susiestar]

It sure sounds like your hands are full! Welcome! Put your load down for a few minutes. Have a cup of coffee (or whatever) and get to know us! You have given us a lot of important info on your difficult child (gift from God, aka child who brought you here). This is an amazing group where you won't be judged, ignored or pestered and you can be darned sure that we won't tell you that there is nothing wrong!!

Many, if not most of our kids start out with an ADHD diagnosis. If further testing is done, sensory problems and NonVerbal Learning Disorder (NVLD) are also often there. My daughter's neuropsychologist told us recently that there is some debate as to whether or not ADHD is part of the autistic spectrum of disorders. Don't get too wrapped up in the "OH NO! AUTISM!!" school of thought. Autism is a spectrum where some are greatly affected and are the typical severely autistic people who don't interact with the world. then there is the other end of the spectrum, where people are quirky and have intense interests and abilities.

Margeurite can explain that better.

Has the Occupational Therapist (OT) taught you how to do the brushing therapy and the gentle joint compressions that go with it? I was shocked at how well it worked for my youngest. Often as he was getting upset going from A to B when he wasn't done with A there would be a giant meltdown. Then the Occupational Therapist (OT) taught me how to do the joint compressions and brushing. It was amazing. Now if he is getting upset because he has to change something or do something else, I will do some gentle compressions on his shoulders and arms. It really mellows him out. If you are not doing it, you should have the Occupational Therapist (OT) show you what to do. If the brushing is done in the wrong order or on the wrong place it can cause real problems. The brushing is so simple and easy. I was shocked by how simple it was.

Another thing that will really help is for you to prepare a Parent Report. It is a report where you compile ALL the info about your difficult child. Some years ago the wise women here created an outline for it. It is an excellent tool to share with doctors, etc... and it also helps you keep everything organized. The outline is in the FAQ/Board Help forum. It is well worth the time to prepare, even if all you ever use it for is to fill out all those questions and forms at the doctor's office. The thread is titled "Parent Input/MultiDisciplinary Evaluation" or "Parent Input/MDE". I can't remember which one, sorry.

It would be very helpful for us if you would go to the My Profile space at the top right corner of this page. Click through the profile and create a signature. It will help us keep your family's details straight in our brains. It is also a good idea to make sure you are set to receive private messages. We don't name names here, but we can pass them along via PM. Because we often discuss sensitive info about our kids, we do not use our real names, or put phone numbers, home addresses, etc... in our signatures or anywhere else on the board. (Just FYI because many people here forget that.)

Anyway, welcome to our little corner of the web!! It is a nice place to sit and relax for a bit, catch up with some friends, vent, ramble, and even work to figure out how best to help the whole family.

{{{{{hugs}}}}}

 

[idohope]

Welcome. I dont have advice but I do have understanding and empathy. We have had people tell us that they wish their child were more like our difficult child. I smile and say thank you and I my head I am thinking " Be careful what you wish for". She can be so amazing in some situations and then raging and hitting me at home. Medication has been recommended for our difficult child and we are facing the same issue. She will refuse to take it. We have gotten varied advice. Some professionals have condoned sneaking it to her. The say that should be done on a short term basis and that if we go that route our priority needs to be discussing medication with her and getting her to accept it willingly. It is a catch-22 as they say the medication could make her more receptive to taking medication...Other advice has been "stop the world". If we go that route I will have the number for crisis intervention ready as she will get violent. However the possibility of going to a hospital might be enough for her to take the medications. It would be ideal if we could work with her but our difficult child has been resistant to therapy for years and maintains that she does not have problem so why would she need medication.

I wish you luck. How were you able to get to her go to the evaluations?

 

[Josie]

Since you said she was allergic to milk and soy at a young age, I am wondering if she is still avoiding those. My now 14 year old daughter was an out of control, violent difficult child until she completely eliminated milk and gluten. Now, she is fine, as long as she doesn't cheat on her diet.

My daughter was 10 when we discovered this. She was taking an SSRI at the highest dose and we were about to add Seroquel to control the violence. Now, she takes no medications. It was a miracle for us.

If you daughter is already not eating milk or soy, you might look into avoiding gluten since you already know she has some food allergies.

 

[KTMom91]

Welcome, beachlife. For years, I was told that my daughter acted that way because I was a single parent. Nope. Miss KT would (and still does to some extent) get something in her head, and just wouldn't let it go. The nagging would drive me nuts! Letting her know how much more time she had before transitions seemed to help. Refusing medications was not an option. The world stopped. Eventually, she realized that she did not get in trouble at school, people were not always ticked off at her, and there was no longer a problem with it.

Is her father on board with her medications/therapy, and will he continue for the two months she'll be with him?

 

[flutterby]

I haven't read all of the replies.

A lot of people consider NonVerbal Learning Disorder (NVLD) to be a form of High-Functioning Autism (HFA). In fact, my daughter receives services from the County Board of Developmental Disabilities because of her NonVerbal Learning Disorder (NVLD) diagnosis.

You need to look into specific therapy and interventions regarding NonVerbal Learning Disorder (NVLD). For problems with transition, try letting her know ahead of time. For example, in 15 minutes it will be time for a shower. Then reminding her at 10 minutes and 5 minutes.