lUVmYkIDS1983
New Member
I am looking for parents I can relate with and get some advice from. I have a 4.5 year old daughter with O.D.D/A.D.H.D
New to the Site- looking for parents of O.D.D/A.d.h.d children my daughter in 4.5 yr
- Thread starter lUVmYkIDS1983
- Start date
Hi, and welcome.
Can you give us a bit more background?
It helps us find pieces we can relate to... we're just other parents with challenging kids, but between us, there's a raft of experience.
Is she your bio-child? or adopted/step/other?
What was she like as a baby? toddler?
When did the behaviors start? what are the extreme behaviors?
ODD is a strange diagnosis. Most of us around here don't treat it as a primary diagnosis, because... all it does is describe problem behavior. And lets face it, if you're on this site, your child has problem behaviours. But the diagnosis doesn't provide any guidance on how to deal with it, no therapies, interventions, accommodations or medications.
Personally? I consider ODD to be a "placeholder" diagnosis. Acknowledgement that something is definitely wrong, but we don't quite know what is going on yet.
Who did the diagnoses? When?
Any medications?
Can you give us a bit more background?
It helps us find pieces we can relate to... we're just other parents with challenging kids, but between us, there's a raft of experience.
Is she your bio-child? or adopted/step/other?
What was she like as a baby? toddler?
When did the behaviors start? what are the extreme behaviors?
ODD is a strange diagnosis. Most of us around here don't treat it as a primary diagnosis, because... all it does is describe problem behavior. And lets face it, if you're on this site, your child has problem behaviours. But the diagnosis doesn't provide any guidance on how to deal with it, no therapies, interventions, accommodations or medications.
Personally? I consider ODD to be a "placeholder" diagnosis. Acknowledgement that something is definitely wrong, but we don't quite know what is going on yet.
Who did the diagnoses? When?
Any medications?
keista
New Member
Welcome! You found the right place. Although, you'll find that many of us don't "believe in" the ODD diagnosis. That diagnosis seems to only describe a set of behaviors but doesn't explain them. Upon digging deeper into our children we usually find other issues. Once those issues are addressed, the ODD just seems to magically fade away.
Please tell us more about your daughter, yourself and your family. Types of behaviors, primary issues, bio family, any diagnosis on family tree, etc.
Please tell us more about your daughter, yourself and your family. Types of behaviors, primary issues, bio family, any diagnosis on family tree, etc.
lUVmYkIDS1983
New Member
She's the younger of my two children, (My son is A.d.h.d) I am married to their father, both are my bilogical children.
When she was 1 I noticed she was different then my Son at that age. Constantly pushing my buttons, very wound up, found hurtful things funny. I thiought maybe terrible two's, and I was in for it, but she never grew out of this behavior, it kept getting worse. I had her in daycare since she was 15 months old, lots of problems there. When pre-school time came, had problems every day, pulled her out class sev times for hitting, kicking, biting, spitting disobeying the rules and finding it funny, this is when she was 3.
Her moods before diagnosis- Jeckle and Hyde is how my babysitter and I described it. She would be sweet as pie one min then devilish the next and u could see the "flip" in her facial expressions. (My babysitter always expected her head to spin around) My current babysitter has grandchildren with A.d.h.d and o.d.d so she has experiance. She was my 4th babysitter last summer.
Diagnosis 4 years old by A genetic counceling center in FTW, Indiana.
Medication- Respiradone 1 mg/daily
She is doing fairly good now, but still has her moments. I just got her back into pre-school 2 months ago, but they will only allow her to come 1 day a week. Next school year will be Pre-K and they are not sure she is ready for it yet. I Don't want her being any more behind then she is.
When she was 1 I noticed she was different then my Son at that age. Constantly pushing my buttons, very wound up, found hurtful things funny. I thiought maybe terrible two's, and I was in for it, but she never grew out of this behavior, it kept getting worse. I had her in daycare since she was 15 months old, lots of problems there. When pre-school time came, had problems every day, pulled her out class sev times for hitting, kicking, biting, spitting disobeying the rules and finding it funny, this is when she was 3.
Her moods before diagnosis- Jeckle and Hyde is how my babysitter and I described it. She would be sweet as pie one min then devilish the next and u could see the "flip" in her facial expressions. (My babysitter always expected her head to spin around) My current babysitter has grandchildren with A.d.h.d and o.d.d so she has experiance. She was my 4th babysitter last summer.
Diagnosis 4 years old by A genetic counceling center in FTW, Indiana.
Medication- Respiradone 1 mg/daily
She is doing fairly good now, but still has her moments. I just got her back into pre-school 2 months ago, but they will only allow her to come 1 day a week. Next school year will be Pre-K and they are not sure she is ready for it yet. I Don't want her being any more behind then she is.
lUVmYkIDS1983
New Member
Also, my husband's family is full of Bi-polar, and my children are the some of the youngest of the 16 grandchildren, 9 of these 16 have Ad.h.d, bi-polar, O.d.d and A.d.h.d. My daughter was the last to be diagnosed in Sept 2011. I forgot to mention that she can't handle crowded places, she starts to act out them to. ie. grocery store, family events,
Please consider getting more detailed evaluations. There is more going on - you see that.
Until you know the rest of the picture, it will be hard to get good solutions.
An Occupational Therapist (OT) evaluation for sensory and motor skills issues would be a good idea. Sensory issues can drive a kid right around the bend. They get "overloaded" easily, and overload leads to that "out of nowhere" behavior... but its only "out of nowhere" because we don't know what the triggers are. Motor skills issues can appear minor now, but snowball when they hit school. As half the kids with ADHD have motor skills isssues, you might as well find out.
She's too young yet for a full Speech Language Pathologist (SLP) evaluation - some of the potential issues they can't test for until the child is 7 or 8. But... auditory processing disorders are another potential issue. Try researching "auditory figure ground" as one example...
And then... somehow... find a way to get a comprehensive evaluation. Neuropsychs seem to be an option in the US (not where I am), children's hospitals often have a team approach (we had that for one round), some child psychologists are known to be good at this... but you need somebody who can look at the whole picture. It takes TIME to get in to see these people, so usually you start the booking process (referals, etc.) first, then start collecting data...
Until you know the rest of the picture, it will be hard to get good solutions.
An Occupational Therapist (OT) evaluation for sensory and motor skills issues would be a good idea. Sensory issues can drive a kid right around the bend. They get "overloaded" easily, and overload leads to that "out of nowhere" behavior... but its only "out of nowhere" because we don't know what the triggers are. Motor skills issues can appear minor now, but snowball when they hit school. As half the kids with ADHD have motor skills isssues, you might as well find out.
She's too young yet for a full Speech Language Pathologist (SLP) evaluation - some of the potential issues they can't test for until the child is 7 or 8. But... auditory processing disorders are another potential issue. Try researching "auditory figure ground" as one example...
And then... somehow... find a way to get a comprehensive evaluation. Neuropsychs seem to be an option in the US (not where I am), children's hospitals often have a team approach (we had that for one round), some child psychologists are known to be good at this... but you need somebody who can look at the whole picture. It takes TIME to get in to see these people, so usually you start the booking process (referals, etc.) first, then start collecting data...
lUVmYkIDS1983
New Member
I honestly do not thing its a Auditory problem. While on medications, she does what she is told 90% of time, she comprehends and responds. I am still figuring out all her triggers. As for the Pshyc evaluation, the older kids in my husbands fam are evaluated at 8, 90% of the 5 who are old enough are diagnosed with bi-polar of some kind.
buddy
New Member
HI there, sounds like you are right to be concerned, as we all here are for our kids, so welcome to the club! I agree with the others. Sounds like there needs to be more done. My son would laugh when people fell etc. at that age and it is seen in several kinds of disorders including autism and my son has a brain injury. Kids with bipolar and these other issues dont really understand how other people feel, it doesn't really mean the same thing to them. It sure gets people worked up though and that is hard to deal with.
My son has clear, obvious, medically testable diagnoses and STILL if we go to a mental health facility they add ODD....folks are right, it simply describes behavior and often can lead esp. places like schools (in my humble opinion) to think they are kids who are simply choosing not to obey or that there is poor parenting so for sure if you can use it to get into services (since at least it is a diagnosis of some kind) work on finding what the real issues are.
My son has clear, obvious, medically testable diagnoses and STILL if we go to a mental health facility they add ODD....folks are right, it simply describes behavior and often can lead esp. places like schools (in my humble opinion) to think they are kids who are simply choosing not to obey or that there is poor parenting so for sure if you can use it to get into services (since at least it is a diagnosis of some kind) work on finding what the real issues are.
You'll be tracking the MH stuff, obviously, given family history.
Still might want to check out sensory. Its a set of issues that can occur along with all sorts of other dxes... for some dxes, it's considered part-and-parcel, but you don't need to be Autism Spectrum Disorders (ASD) to have sensory issues.
And... as far as Auditory Processing Disorders (APD) goes? if she gets it most of the time, watch for two things when she doesn't...
- background noise - is this in a noisy environment? or even in a quietly-noisy environment? Paper rustling, water running, all sorts of noises that most of us filter... some people can't.
- tired - "listening" takes a lot of brain power if there is even a MINOR impairment at any point along the line; therefore, at some point, there isn't enough brain power left. All sorts of things contribute to this - how much listening they have had to do today, how much noise to filter, how much sensory overload, hunger, not sleeping well for other reasons...
Still might want to check out sensory. Its a set of issues that can occur along with all sorts of other dxes... for some dxes, it's considered part-and-parcel, but you don't need to be Autism Spectrum Disorders (ASD) to have sensory issues.
And... as far as Auditory Processing Disorders (APD) goes? if she gets it most of the time, watch for two things when she doesn't...
- background noise - is this in a noisy environment? or even in a quietly-noisy environment? Paper rustling, water running, all sorts of noises that most of us filter... some people can't.
- tired - "listening" takes a lot of brain power if there is even a MINOR impairment at any point along the line; therefore, at some point, there isn't enough brain power left. All sorts of things contribute to this - how much listening they have had to do today, how much noise to filter, how much sensory overload, hunger, not sleeping well for other reasons...
lUVmYkIDS1983
New Member
I chose to go to GENETIC COUNCELING CENTER to have her evaulated, instead of typical specialist. My Son who is 7 was diagnosed by a specialist, I really feel there is more there then ADHD, but with his medications he went from a troublesome child with poor grades, to a honor roll student who is a grade level ahead in reading, he's on Vyvance 30mg, Intuniv 3mg and Clonidine .2 mg.
My daughter is on just the resperidone currently, and it did make her gain weight, which she needed, But they are not treating her for the ADHD just the O.D.D right now, then want to do the Genetic testing first before adding any other medications to her regiment. Our insurance doesn't cover these test because they are quite expensive. So I am thinking I might have to downgrade to a "specialist," in fear that we have gotten as far as we can with the Genetic behavorial doctor.
What I am looking for is "others" with experiance, and listen to their ways of dealing with a child with O.D.D/A.D.H.D I do realize that I didnt cause this to happen to my children, and the chances of having 2 children with behavioral problems is not as uncommon. I really feel if I could find some kind of playgroup for children like her, that may help. My babysitter just watches my kids and thats it. My daughter can handle small groups, the larger the worse she gets. I look at her, and want to cry because I am in fear that she is gonna be treated differently her whole life because of this. I am having problems with schools now, what is it gonna be like when she finally makes it to Kindergarten?
My daughter is on just the resperidone currently, and it did make her gain weight, which she needed, But they are not treating her for the ADHD just the O.D.D right now, then want to do the Genetic testing first before adding any other medications to her regiment. Our insurance doesn't cover these test because they are quite expensive. So I am thinking I might have to downgrade to a "specialist," in fear that we have gotten as far as we can with the Genetic behavorial doctor.
What I am looking for is "others" with experiance, and listen to their ways of dealing with a child with O.D.D/A.D.H.D I do realize that I didnt cause this to happen to my children, and the chances of having 2 children with behavioral problems is not as uncommon. I really feel if I could find some kind of playgroup for children like her, that may help. My babysitter just watches my kids and thats it. My daughter can handle small groups, the larger the worse she gets. I look at her, and want to cry because I am in fear that she is gonna be treated differently her whole life because of this. I am having problems with schools now, what is it gonna be like when she finally makes it to Kindergarten?
lUVmYkIDS1983
New Member
I will watch her, see how she is reponding to loud enviorments, If I notice something I will mention it to her doctor. She doesnt go bacl for a another medication evaluation till the end of July.
buddy
New Member
Have you contacted the public schools yet? (are you in the USA??) If her behavior is having an impact that is causing social delays she can qualify for early intervention and then you can have her in preschool classes (even with transportation if you want) for free. They can develop social goals (you are part of that). Just a thought. I think it is pretty hard to just treat one diagnosis and not affect another. but I am understanding that you are saying they are not officially calling it adhd or using traditional medications for adhd and just trying to help out with the behavioral challenges? I hope I am understanding it right, anyway...
One thing I did with my son when that little (besides that he was in every therapy I could get him in and also in Special Education) was to change how I consequenced things. He did not learn as other kids learned. I got the book The Explosive Child and tried to apply it to a younger child like this the best I could. I also used 123 magic and it actually did help a little bit. Much of what helped my son was doing sensory things like when he was really not cooperating that was the time to roll him up in a blanket (we called it make a hotdog, some say taco etc...) and have the blankets give pressure, we also put weighted blankets on him. I had a big red ball (one of those exercise balls) and would sit him on my lap and bounce him at night every night for years. Did it during the day when he needed calming. He had one chair in our house that was perfect for him to rock in and bounce his back into (had a fluffy back) so he could get that deep pressure feeling of smashing his body into it.
I had to teach my family that we might be very late for things and we were not being rude, transitions take longer for us. In fact we may need to cancel at the last minute or leave early. Sometimes I turn my car around on the way. Family and friends just had to learn to understand.
I used a lot of pictures and schedules. So for example if we were going to McD's for the play land with cousins, I had a "rule" sheet (didnt' call it that) that showed a picture of be quiet, or our symbol for hands to self, or sit down etc.... if there were issues I would not get into a big talking match, would just show him the picture....my family is still amazed how much that helped (people tend to think non verbal kids need that only but not true, kids who get overwhelmed and really unable to attend do well with this too, especially if they are more visual learner types)
UMMM...lets see (I'm reaching back).... We also had a wallet filled with different pictures of my son in different moods. we had talked about them often. THEN when he was upset or too silly or whatever, we could use those pictures to help communicate.
Sometimes he woudl grab it to say how he felt, sometimes I used it to say Q is angry...etc.
Much of what I learned was to NOT TALK, threaten (if you dont do X then no Y...causes big meltdown), breathe, and lots and lots of redirection. People even now will say well he needs a meaningful consequence. THEN he will learn. OK if that was true he would have learned LONG LONG ago. but not saying no consequences, I just never never do it in the middle of a rage or other oppositional behavior. First goal is to get back into a "ready" state... ready to sit, ready to listen, ready to eat, ready to play...whatever that state of a "good place" is for your child. Once there for a while you can review the situation. If your child is too young to remember that far back you might have to let things go but if you have a broken toy right there to show, since you broke brothers toy....X will happen (whatever is appropriate for the developmental level of your child).
I am not saying these will work for you but you asked what others have done and I am trying to remember some actual real things I did, not what books or counselors told me to do, lol.
I will try to think more....
One thing I did with my son when that little (besides that he was in every therapy I could get him in and also in Special Education) was to change how I consequenced things. He did not learn as other kids learned. I got the book The Explosive Child and tried to apply it to a younger child like this the best I could. I also used 123 magic and it actually did help a little bit. Much of what helped my son was doing sensory things like when he was really not cooperating that was the time to roll him up in a blanket (we called it make a hotdog, some say taco etc...) and have the blankets give pressure, we also put weighted blankets on him. I had a big red ball (one of those exercise balls) and would sit him on my lap and bounce him at night every night for years. Did it during the day when he needed calming. He had one chair in our house that was perfect for him to rock in and bounce his back into (had a fluffy back) so he could get that deep pressure feeling of smashing his body into it.
I had to teach my family that we might be very late for things and we were not being rude, transitions take longer for us. In fact we may need to cancel at the last minute or leave early. Sometimes I turn my car around on the way. Family and friends just had to learn to understand.
I used a lot of pictures and schedules. So for example if we were going to McD's for the play land with cousins, I had a "rule" sheet (didnt' call it that) that showed a picture of be quiet, or our symbol for hands to self, or sit down etc.... if there were issues I would not get into a big talking match, would just show him the picture....my family is still amazed how much that helped (people tend to think non verbal kids need that only but not true, kids who get overwhelmed and really unable to attend do well with this too, especially if they are more visual learner types)
UMMM...lets see (I'm reaching back).... We also had a wallet filled with different pictures of my son in different moods. we had talked about them often. THEN when he was upset or too silly or whatever, we could use those pictures to help communicate.
Sometimes he woudl grab it to say how he felt, sometimes I used it to say Q is angry...etc.
Much of what I learned was to NOT TALK, threaten (if you dont do X then no Y...causes big meltdown), breathe, and lots and lots of redirection. People even now will say well he needs a meaningful consequence. THEN he will learn. OK if that was true he would have learned LONG LONG ago. but not saying no consequences, I just never never do it in the middle of a rage or other oppositional behavior. First goal is to get back into a "ready" state... ready to sit, ready to listen, ready to eat, ready to play...whatever that state of a "good place" is for your child. Once there for a while you can review the situation. If your child is too young to remember that far back you might have to let things go but if you have a broken toy right there to show, since you broke brothers toy....X will happen (whatever is appropriate for the developmental level of your child).
I am not saying these will work for you but you asked what others have done and I am trying to remember some actual real things I did, not what books or counselors told me to do, lol.
I will try to think more....
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