New Here...some backstory

[LauraK]

Greetings!

I am new to this site and haven't spent much time yet reading through posts. But thought I would do a quick intro...

Seems wonderful to know that we are not alone in having more than one child diagnosed with ODD. The family therapist that first brought that term to our consciousness didn't actually write the diagnosis anywhere (to my knowledge)...said he wasn't a big fan of labels. I'm ok with that.

We are the exhausted, burned-out, disillusioned, disheartened parents of four beautiful, wildly creative, intelligent, mouthy, disrespectful, beligerent, frustrating, heart-breaking girls who are all ODD to one extent or another.

I asked my husband tonight if he just felt like crying after run-ins with the three youngest (about supper and a trip to the mall, nixed because the rule of a clean room before going shopping), he said, 'No. Not really.' I DO!!!!!!!!!!! I just feel like we are NEVER going to have a nice, connected family life!

The therapist that we saw (how we ended up in his office is a whole other LONG story!), helped us come up with Rules, Consequences and Rewards to implement. Unfortunately, we caved in on each other as I ended up with a dianosis of severe depression (on top of a host of other frustrating ailments and diseases that I have been battling for the last 7+ years!). I am the one who has always been the most consistent of the two of us and when I fell apart, so did the new way of parenting. (And this was not the first thing we have tried, nor the first professional we have seen! We actually started searching for answers since difficult child #1 was 2 - she is almost 17 now!)

One of the things I am supposed to be doing as I attempt to treat and heal two of the major health issues is 'remove stress.' There is absolutely NO WAY to do that while parenting these four girls!!

I know we can't give up, but I sure want to!!!

That's all I have time to post for now....
Thanks for reading!
LauraK

 

[aeditha17]

Welcome!
This is a great place to share your experiences and gain some wonderful insight.
Hang in there!!
B

 

[smallworld]

Welcome! I'm glad you found us.

ODD rarely travels alone. It is generally of symptom of an underlying disorder. When the underlying disorder is identified and treated, the ODD behavior typically subsides.

Which leads me to some questions:
Have the girls ever been evaluated a child psychiatrist or neuropsychologist?
Do they have any dxes besides ODD?
Are they taking any medications?
Besides you, any history of mental health issues or substance abuse in the family tree?
How do they do in school, both academically and with peers?
Any developmental or speech delays?
Any sensory issues (sensitivity to clothing tags, loud noises, food textures, for example)?

I highly recommend picking up a copy of The Explosive Child by Ross Greene. It has helped many of us parent our extra-challenging children.

Again, welcome.

 

[trinityroyal]

Hello Laura, and welcome.

Smallworld is right. ODD is often the behaviour that results from another underlying problem that hasn't been addressed yet. Getting a comprehensive evaluation for your children by a neuropsychologist will help to pin down what's going on with them, so that you can provide the right sort of interventions for them.

Even with the right supports in place, it's not easy.

One thing that you really must do is take time to take care of you. If you're not well, then you don't have the strength to look after your family. Don't neglect your health, especially if you have known health concerns that worsen with stress.

Others will be along soon with insight and wisdom to offer. I just wanted to take a moment to say Hi and Welcome.

All the best,
Trinity

 

[LauraK]

Omigosh!!

You have NO IDEA how incredible it feels to be acknowledged so soon after my original post!! Thank you, thank you, thank you!! (I am a new-ish member on a few boards that relate to my health issues and I'll be danged if I can get a reply to my posts! Was beginning to think I was doing something wrong!)

I will try to answer the questions you asked, smallworld:

difficult child #1 was seen by a psychologist for the first time as a 3rd grader (8 yrs ago) and diagnosis'd with a learning disorder. As a fifth grader, a counselor loosely diagnosis'd her with Attachment Disorder. (The therapist we saw this past summer - who diagnosis'd the ODD - 'poo-pooed' that diagnosis.) She was also diagnosis'd just a month or so ago with mild depression.

None of them are on any medications, nor have they been. husband just reminded me that our family dr told us to use Benadryl to get them to relax and go to sleep about 13 yrs ago. (Needless to say, we tried that for a while, but are not currently doing that! )

husband has had mild depression on and off since adolescence. Had MAJOR anger issues until 2005. Still struggles with anger sometimes, but handles it much more appropriately. Is in recovery for sex addiction. My mom, I believe, suffers from and undx'd eating disorder. My dad is a raging alcoholic/sex addict. husband's parents are fairly dysfunctional,as well. (I hesitate to label them and husband has a hard time with that, too.)

In school, they are well-behaved. They do not apply themselves academically...at most, they do so sporadically. When they do, they get awesome grades! Socially, none of them - with maybe the exception of difficult child #4, who is a social butterfly - have any real friends outside of the school walls. difficult child #1 is on staff of her school's newspaper and does fairly well socially with them. She has always struggled, though.

No real developmental or speech delays. If anything, they were always right on track or ahead of the curve as tots.

They ALL suffer with what I have coined Twisted Sock Syndrome - my way of trying to use humor to diffuse their screaming sensitivity to tags, seams, smells, sounds, tastes. Actually, difficult child #1 and difficult child #3 were the most screamy (that is an understatement). difficult child #2 and difficult child #4 were more subtle in their protests. As they have all gotten older, they are all less vocal about it, but it is still there. And the emotional scars inflicted upon my psyche still remain. :frown:

I don't really want to think about them having to be on medications. Are there really medications that treat ODD? I thought it was treated with behavior modification.

Thanks again for the warm welcome, all!
LauraK

 

[SRL]

Around here we call Twisted Sock Syndrome (love the name, by the way) by the name of Sensory Integration Dysfunction. For the kids who have it, the sensory world is a very real, very terrible assualt to their systems. Here's a few articles on that:

http://www.tsbvi.edu/seehear/fall97/sensory.htm

Thinking back from birth through childhood,

Did any of them develop speech that sounded very adultlike, even when they were pretty young? For example, use big words their peers didn't know or talk about subjects or interests most kids wouldn't have been interested in?

Did you see much lining up of toys or other household objects, either in straight lines or intricate formations?

Anyone into unusual collections such as sticks, rocks, etc?

I'm glad you found us. Hopefully you can find some answers and get some direction.

 

[LauraK]

Thanks, SRL, for those links. I will check out those articles. I have read stuff on Sensory Integration Disorder (SID) before, but it was a VERY long time ago!

They all have had HUGE vocabularies since they were very little! And difficult child #2 said to me, clear as day, when she was 10 months old, in response to my asking her, 'What are you doing?' as she pushed a chair to the sink, 'Washing dishes with you, Mom.' (I am curious as to why you would ask that....)

K and C (#1 and #3) are both fairly neat - at least able to organize their rooms well when they want to. S and A (#2 and #4) are SLOBS. S always had to dump out ALL the toys in order to play with something when she was little.

K collected rocks, sticks and bugs when she was little.
S collected rocks and sticks and now collects defect candy. (The odd-shaped pieces that come in, say, a bag of Skittles, etc)
C collected rocks and still loves sticks.
A collected rocks and also still loves sticks.
(Again, I am intrigued by the question...)

Thanks so much for the welcome!!
LauraK

 

[SRL]

Laura, do some digging into Asperger's Syndrome. It's the highest functioning of the Autistic Spectrume Disorders. It's often missed by specialists, passed off as bright with- behavioral issues, or covered up by medications. It frequently runs in family lines--once parents recognize their child may have AS they often start seeing traits in the extended family.

http://www.aspergersyndrome.org/

 

[SRL]

I should mention that we are only parents here--we're glad to poke around with questions and give some directions, but diagnosis is left up to the professionals.

 

[Hound dog]

Since you've already received some wonderful advice, I just wanted to pop in and after you a warm welcome to the board.

Hugs :flower:

 

[DDD]

Welcome. I, too, was going to suggest reading about Aspergers.
It's an "odd" disorder that "odd" kids seem to have. LOL
My Dad used to refer to one of my daughters as "hearing the beat
of a different drummer". Oddly, that pretty well describes an
Aspie to varying degrees. DDD

 

[BusynMember]

Have you ever thought to take these kids for a different type of evaulation, like a neuropsychologist or a Psychiatrist (with the MD)? As others have stated ODD rarely stands alone and is not really a useful diagnosis. It doesn't explain WHY the ODD and doesn't get to the bigger disorder that is causing it--often mood disorders (which do need medication) and run in families or autistic spectrum disorders, which need very specific interventions and therapy doesn't help much as it's not a psychiatric issue. It does manifest as such, but it's neurological and hereditary. I wouldn't accept that the girls just have ODD. And I'd try somebody else to treat them. You don't have to live this way. With the proper diagnosis and treatment the ODD behaviors can literally disappear. I'm not a big fan of therapists--they never really helped me or diagnosed me right (I have bipolar) and they also missed the boat with my son (he has high functioning autism.) I'd take it to a more credentialed professional. Did any of your kids have speech or developmental delays?

WELCOME!!!!!

 

[wakeupcall]

Hi Laura

ODD is extremely difficult. Many on the board think it is an underlying disorder, but for me, I'm not so sure. My difficult child has been defiant since birth.....never sleeping, throwing things at me, poor eater (constant conflict), mouthy, makes faces, resists all authority. Now that he's twelve, I have to say it's a tad easier and all I can think is that my child is SO different that the hormones of puberty are HLPING him! Hehe

difficult child has had extensive behavior mods, but it won't even begin to work unless both you and your husband implement. The therapy he/we hace had....I dunno, I'm not sure it has done a thing, but we wanted to be sure we covered every intervention possible. He's been in therapy since the age of four, and on medications that long also.

My difficult child has other diagnosis, but by far, the ODD is the worst to deal with. He has no learning disorder yet he's so defiant he's in a social development class at his intermediate school all day and doesn't move from class to class with the other students. For now, it's working.

I feel for you having four with ODD. I can barely make it through one. 'Glad you're here; most of us have lots and lots of experiences and day to day solutions that might give you a hand. Welcome.

 

[Marguerite]

Welcome. I'm with the others:

1) Get a copy of "The Explosive Child". It should help. It's not a cure, it just give you something different to try, that personally I found easier than the previous struggles.

2) Consider Asperger's. It can also run in families (it gallops in ours). It can be a useful diagnosis also, in explaining things.

3) ODD - Pamela's experience is worth noting. I am one of those of the opinion that maybe not all, but a lot of ODD-like behaviours are secondary to some other disorder, which, if treated or at least managed better, can bring an improvement in the ODD-like behaviours. But yes, it is possible to have a child who has been apparently oppositional since day 1. I still believe that even in these cases, an underlying problem needs to be considered.
easy child developed severe behavioural problems at about 6 weeks old. Previously a seemingly perfect baby, she began screaming, almost raging, all day every day. She was just impossible. But I was lucky - because I saw that change, and was able to find what caused it, I was able to change her back.
In her case, the problem was related to a food colouring. She was purely breastfed, but I was taking Vitamin C to dose her through my milk. I was taking a pure ascorbic acid powder, mixed into a glass of orange juice. But one day I ran out, and found a bottle of Vitamin C powdered drink at the back of the cupboard - mix it up and make a litre of pseudo-orange juice. Well, it was still Vitamin C, so I made it up and drank it. Within 8 hours, my angel had morphed into a hellcat. This change in my diet was the only change, so I immediately stopped the coloured drink and easy child slowly changed back over the next three days.
We later had the same problem when she was put on medicine which had the same colour in it - tartrazine.

Now, if I had been taking that particular supplement from Day 1... or if her sensitivity had been to something more universal in my diet... how would I ever have known?

Pamela, I'm not saying that this is your problem - only that there are so many factors with our children, it really is hard to know. I am so grateful that I was lucky and able to pinpoint a cause, fast, for easy child. And maybe your difficult child just happens to be one of those for whom it is a primary disorder. I hope this current medication range which seems to be working, can help you get a grip on it all at last.

Marg

 

[wakeupcall]

Oh Marg, I hear you. There are so many different, yet same, facets of our children. I get very frustrated...daily. Just this morning, oh my, I don't know what keeps me from running away. I fight the urge over and over. difficult child pushes my every button and now it's not only in the AM, but PM is getting unbearable. I keep wondering if he IS bipolar and this is a manic stage. I've never been around a bipolar person, I wish I had some way to gauge it. Nonetheless, his defiance is almost more than I can tolerate and with all his treatments for eight years, I wish it was delivering better outcome. We've tried it all, honestly.

 

[Josie]

I have also found diet to be the cause of bad behaviour in my oldest difficult child. She was diagnosis'ed with ODD. It turns out she is allergic to gluten (in wheat, rye, oats, and barley, malt) and milk. Talk about universal! There is no way most people would notice this. My other daughter had more classic celiac disease symptoms and when dealing with this, discovered difficult child's problem.

It turns out, my whole family is gluten intolerant. Even husband is reluctantly seeing it in himself now that he has mostly eliminated it. Some celiac experts believe 30% of the population suffers from this so it might be fairly common but rarely recognized.

We have eliminated gluten and milk from our diets and my oldest daughter is actually a pleasure to be around, even at age 12, most of the time. Diet mistakes happen and she sometimes cheats and then it is awful.

I think you should explore every possibility suggested above. In the meantime, you could experiment with diet to see if it makes a difference. Be aware that this is not something that most doctors believe in. That doesn't mean it doesn't work for some people.

 

[LauraK]

Thank you all so much for making contact here and making me feel so welcome!!

I have looked at some of the Asperger's stuff that has been mentioned and, while some of the symtpoms match, others do not correlate to my girls. For one, they all have always made GREAT eye contact and LOVE LOVE LOVE hugs, kisses and cuddling! (Sorry if it seems like I latched onto a couple things, but those really stood out to me.)

K (#1) and I have been talking recently (and have talked in the past) about doing an elimination diet for her. The trouble with her is that she really wants a quick-fix and to not have to work at/for anything! The times we have had her in to see nutritionists, medical professionals she has NEVER had any compliance to what they told her to do. (She did think it was 'cool' and 'funny' to hear them all tell her to do the things that husband and I had been telling her and encouraging her to do all along!) We have given her pretty much full-reign over her schoolwork, grades, sleep (ie - have to be in your room by 10, but we know we can't make you go to sleep). I just told her 2 days ago that for 3 weeks, she needs to take breads, cereals, etc and all dairy out of her diet (since those are the most frequent offenders) and keep a journal of how she feels. Then she can slowly add back in, while watching and keeping track of symptoms. BUT I WILL NOT fight with her about this! I learned A LONG time ago that I need to limit fields of battle with her. She has to want to get well herself! She will be 17 in 3 mos....needs to take more responsibility for her life and health. (Or do you think I am off base on this?)

I have been on many restrictive diets myself in the last 7 years. I have never been able to get everyone to go along with me. husband is MAJOR sabatouer!! And he seems unwilling to do anything to address his own overweight (70+lbs!!)

Anyone have any tips for me about how to try to implement a family-wide elimination diet? Or should I be posting on the the Natural Remedies forum?

At any rate, thanks again, everyone, for the wonderful welcome!!
LauraK

 

[SRL]

Just a note to consider while you're doing your research--

Kids sometimes will be atypical on some of the symptoms. Others will be borderline and fit most of the symptoms but in milder forms. I have one of those so I was always left scratching my head on whenever I saw a symptom list.

There's a lot of variation with a lot of gray area because it is a spectrum disorder.

I wouldn't jump into an elimination diet for a child with sensory issues before getting sensory supports into place. Kids who have sensory issues relating to foods and food disorders can really suffer emotionally and physically by changes in diet unless the new foods don't assault them. I'm not saying not to try, I am saying you need to understand the sensory implications and have those bases covered first.

 

[Josie]

All of your kids are old enough that they will have to agree to try any elimination diet you do. If they don't agree, they will just eat what they want at school and then you will never really know if it worked or not.

You might want to just start with one allergen. We saw fast results with just gluten at first and then realized the blowups we had were due to milk. If you see improvement and think you are on the right track, and then have a problem, check your food carefully to see if you made a mistake. Clear out all of the restricted food from your kitchen. Eat whole foods not processed foods to make it easier. Read all labels.

My oldest still has terrible eating habits. She doesn't feel any different if she eats fruits and vegetables so she doesn't. She can tell the difference if she eats gluten or milk so she sticks to it pretty well. This child was the poster child of ODD before so if she didn't believe in this diet, I'm sure she wouldn't be doing it. One thing I did in the very beginning to encourage compliance is let her have whatever she wanted to eat if it didn't have gluten. This was just so we could see if gluten was the answer.

My husband mostly goes along with the diet but he will eat things that I won't. This is not a regular diet, where occasional cheating is expected and allowed. For me, if I have any of the food, I feel tired and irritable for days. I can even have mood swings of depression and rage. It just isn't worth it to me. So I would let husband worry about his own diet and you just do what you need to do. If you are talking about an elimination diet for you and it works, you will not even want to cheat.

 

[Coookie]

I have absolutely nothing to add but a Welcome. :smile:

As you can see this is a group of well informed and deeply caring people. :smile:

Hugs