A new member with an overwhelming week

[lovinmama]

Hello! I just found this website while trying to research my daughters diagnosis...it has been a rough couple of days.

My daughter is a 7 year old in first grade. She was given a referal to be tested for A.D.D. I received the official report in the mail yesterday. She was given a diagnosis of a ton of learning disablities. The four main disorders that are large at the top of the page are A.D.D......A.D.H.D.....Anxiety Disorder and O.D.D. I had no idea what odd was and starting doing some research and I just broke down and cried. I am exhausted and very very overwhelmed. I keep asking what did I do wrong. I feel very guilty and I feel like everything is my fault. I will be calling her peditrician on monday to see where we go from here because as of right now I do not know what to do or what the next step is...I have a 2 year as well. I am a stay at home mom but I feel so exhausted by the end of every single day I feel like I have just worked 20 straight hours. I really hope that I will be able to be strong so I can help her in any way that I can...

 

[soapbox]

Hi, and welcome.
As we so often say around here... glad you found us, sorry you needed to.

First, take a deep breath. Slow down.
Lots of us have been there.
And you have time on your side - she's only 7.

Now... mind if we ask a few quesions? It helps the rest of us understand your situation better, and those who have been there, can chime in.
Who did the referral, and who did the testing and diagnosis?
What behaviors led you to seek that referral?
How were her early years.... as a baby, toddler, etc.
Is she your birth-child, or adopted?

It is unusual to see both ADD and ADHD as dxes (diagnosis = diagnosis). Basically, ADHD is ADD with Hyperactivity - so, you are one or the other. On top of that, there are other dxes that have symptoms almost identical to ADD/ADHD... some would be "instead of" and others would be "on top of" an ADHD diagnosis.

ODD is... well, lets just say lots of us don't put a lot of stock in that one. For myself, I find it useful as a "placeholder" - a way of acknowledging that there are serious behaviour issues when the docs really don't quite know what is going on. But ODD, as a label, gives no guidance on how to fix things. Usually, there are other problems, and addressing those will also address the ODD.

Anxiety... is a VERY common secondary diagnosis. When kids have all sorts of other problems going on, and the adults don't know how to help, they can become anxious, depressed, detached... If these are indeed secondary, the best solution is to solve the other problems. (been there done that)

You also mention learning disabilities (LDs) - which ones?

Tell us more. Maybe we can help you sort through some of this.

 

[crazymama30]

Welcome. That feeling of exhaustion? That is one many of us can sympathize with.

I am wondering about her Learning Disability (LD)'s also.

 

[buddy]

Oh my dear! I know that feeling of mental exhaustion that just makes you feel like you moved plus ran a marathon.

You will likely hear some repetitive things here... first, the ODD thing... I will second what soapbox said.... it simply describes the behavior that you probably described to the doctor on forms or tests... But most of us have that issue with our kids. It means nothing except she is oppositional at times and defiant at times. OK, so now, WHY... you have some major neurological issues going on here. THAT is what you can work with! THIS IS GOOD NEWS!!! Well, that is if they have given her the right diagnosis. NOW comes the many questions. NOT to be nosy but because many of us have been down the multiple wrong diagnosis road and end up with, finally, the one that fits (or several that fit).

YOU did nothing more wrong that a parent who has a kid with diabetes or cancer or any other medical condition. But moms always wonder what they did or could do better... just think if you were talking to your best friend, would you hold her accountable??


Who did this testing. You will find that often times, if it is done by a psychiatrist or mainstream psychologist, you will get diagnosis more on the lines of mental health labels as the primary issues. IF you read thru many many threads here you will see people come saying that their very young children are being labeled ADHD/ODD/Anxiety or some combination of those. Often it ends up that they have ADHD plus other diagnosis such as Learning Disability (LD), auditory processing, motor disorders, sensory integration disorder, or a combination of those.

Some have bipolar disorder and need mood stablizers... I will let other parents more familiar with that talk....

Some actually fall on the autism spectrum.

Why this is important is because these bigger issues have treatments, and have as symptoms....of..... ready??? ADHD, ODD, Anxiety, etc.

Did you see a neuropsychologist? IF you did what tests were done??

Have you seen a speech/language path to check for processing and other communication or language issues??

Have you seen an Occupational Therapist (OT) to look at her fine motor and sensory integration status?

These three do a nice job of giving you a much better picture of what is going on. If a child is perceiving the world in a different way than what we or typical kids do then they end up acting out because they simply dont have the skills to do better.

Again, I have to say.... there is a TON OF HOPE in this!!!

(and dont think I didn't cry my eyes out and I already knew part of my son's issues.... he had a brain injury but when I found out the rest?? yeah I felt like a truck hit me...and get this... I WORK in the field... I even worked where he was diagnosis with autism!)

Can you tell us more about her early development??

Language, motor, play levels, friends, family structure, etc...???? Others will ask more questions.... we do that a lot around here so please know it is in an effort to support you. If at anytime what we say doesn't fit it is because we only see a glimmer of your life and only have our own perspectives to share so just pass on what does not fit and take what helps.

This is a journey. You are just at the beginning and those labels, they change a lot over the years. Just take a deep breath and relax as much as you can. It really will get better.

She is your same little girl. Just because she has a report, does not change who she fundamentally is. There is nothing magic about people who do this work. They may only be saying what they see now but in the end... I bet you anything you get lots of opinions and labels. I have never even listed here all the ones we ahve burned through... I just ignore it now. Once you get waht fits best you just ignore what others need to say to get insurance to cover things etc.

by the way how is school??? that is a whole 'nother post....LOL

HUGS to you! Keep checking in, ok??

 

[lovinmama]

Thank you so very much for responding. Em is not adopted I am her birth mother. My husband and i were together when she was born. She was refered by her family doctor to seek testing at special needs preschool because she was very very behind in her speech she knew over 200 words in sign language that her daddy and i taught her but she did not verbalize much. She was tested at 3 1/2 and her delays qualified her for special needs preschool..it was half a day..She was given an IEP to work on these issues. at 4 she went to all day special needs preschool and her speech improved greatly. She also had PT and Occupational Therapist (OT) services bc she could not do tasks like string beads and cutting very well. Her gait was not very good and they said she did not walk normally..? She was a very late walker almost 2 before she walked. At 5 she continued to have her IEP and was in special needs preschool again and did awesome that year. She learned all of her letter numbers colors and could write them well. I thought she was improving wonderfully..She had to be told several times to do simple tasks and two tasks such as go hang up your coat and wash your hands she would do one of them and totally forget the other..The teacher had me test her hearing 4 times this year because when asked to do something it seemed like she would look right through them...Then at 6 she started kindergaten...her teacher would tell me constantly emilee is very distracted she cant hear me...Her hearing was tested 6 times that year all normal with her teacher telling me she must have hearing that comes in goes which is laughable....It was even tested at the Bell School in which that is a school for the deaf with no problems noted...She was in special needs kindergarten. Finally she said i am not allowed to tell you if i suspect your child had a disorder but you really she have her tested for add. It took me forever to get her referal the school told me they could not give us a referal..her dr would not give me a referal because she said she was not with her enough to see the symptoms...made no sense to me...Emilee is in a program called healthy weight and nutritian through childrens hospital due to her being overweight for her age...At one of her visits a psycologist was accidently scheduled to see her...When she walked in and seen Em was only 6 she said um this was a mistake i dont see kids to they are older and may have emotional issues due to their weight but is their anything you would like to talk about. I brought up the ADD her father had it when he was younger as well as my sister. She said well actully I work with children with ADD and I can see she has symptoms of it I will give you the referal. FINALLY>>> So right before her 7th birthday she was sent to Childrens Behavioral Health for testing..I have been waiting for this report since September I have called begged and pleaded saying I need this report for about 3 months now..so it took about 5 months to get these results.
I honestly do not see the adhd part with em that is the problem she is not active...i do see the add she gets very very distracted easily...Every single day since she has been 3 has been an constact strunggle in the morning to get her dressed for anything..i spend my whole moring going em get your underwear on em get your socks on em shoes r on the wrong foot em put on your shirt em please please please put on your shirt..it does not take 10 min to put on a shirt please hurry u r gonna miss your bus..she actully has missed the bus...When asked why I didnt ask to have her tested earlier or did i think something was going on i just always thought em was a little behind..i thought she was more immature than the other kids..i thought she would grow out of it or catch up..she has two cousins that r 4 months younger than her and 2 months younger and she has always seemed more whinner more needer and less mature than them but i just chalked it up as that emilee...thats just her personality and she is a little delayed every child is different...so maybe her father, nana and i has used that as an excuse...when she was 5 we had another little girl so ave is now 2 she has really had no use for her sister and is just now acknowledging her.. And i guess sometimes i do feel i have two 2 year olds...i do have to tell emilee to do things over and over she does whine quite a bit and if she does not get her way she will say i hate you i want a new mom or you dont love me...but she is not so extreme tht she screams and yells about every little thing she does lie quite a bit but i always chalked that up to her being behind and being diagnosed in her IEP as special needs and she may not understand as much as the other children...She is now in her first grade she is in a regular classroom but is pulled out for about 3 to 4 hours a day for her special education resource room... Emilee has always hated new situations and it does not help that she has been sent to a different school every year since she has been 3...5 different schools not because of us bc of the school system. When she was a year old she would cover her face when going to the store and cry when others spoke to her. I have been a stay at home mom since she was born but I did preschool in my home with about 6 kids till she was 3. Emilee wears depends at night bc she wets the bed almost every night and has bever slept in her own bed since 2 thats when she started having screaming fits if she was not in the room with us she now sleeps on a twin blow up mattress in our room...she was given a diagnoses of anxiety disorder adhd primarily in attentive type developmental coordination disordermixed expressive receptive language disorder mathematics disorder then it says ODD overweight birth complications allergies eczema some sleep problems----she was a csection due to cord around neck and placenta.....i just really dont understand the ODD one maybe i just dont understand it since its new to me...I just got this report on wednesday so have not talked about treatments or medications yet she was reffered to counseling and the first one is monday at 4;00 which my sister has me scared to death because she is a juvenile correctional officer and she said dont worry they will blame all her problems on something you did...she is so comforting

 

[lovinmama]

thank u so much for the ones posting it helps to hear an actual parent (buddy) say u know what been there and they may not of gotten it right if they are right great we can get working on something but she was seen by one psch for like a 4 hour test and he received a connors report from me her dad and her kindergarden teacher and that is what the diagnosis was based on... and she has always had developmental delays so im am unsure if that is the source of some things and she does get anxious when she can not get her point across and he kept telling me how anxious she was during testing well she has a nana and me and her father she does not have a ton of family and i am a stay at home mom..the psch was a very very large man and she was taken into a small room by herself....to me i thought of course she was anxious they also came up behind her and banged a pan..she jumped i would of too...then they started the testing....

 

[buddy]

Well, if the do that, if they blame you... get a new counselor.

In fact, I am sorry to say this, but if it was me... I would nto even go to a counselor YET.

Can you tell us the exact profession of the people that did the testing??? that will help us a lot.

Can you also tell us the names of the tests they have listed?


From your description, again...cant see her and obviously this is from two little paragraphs..... she does not sound ODD and I mean even as a place holder or anything. This is a girl with serious neurological deficits and delays. OF course she is going to have issues when she is not able to hear.

NOW, here is what is really important to understand. There are different kinds of hearing problems. It sounds like she was tested for acuity which is ... can she hear sounds and at all? probably they checked to see what level she can hear different pitches of sounds. Maybe even asked her to point Occupational Therapist (OT) pictures of words.


Another issue is whether or not she can tell differences between sounds. Whether she can sort through different sounds in the environment. Whether her brain, when it hears sounds can actually make SENSE of the sounds... There are many kinds of issues with how the brain can interpret sounds and or speech/language.

Many kids who have auditory processing disorders can look very adhd because they can't sort thru it all.

I believe the ODD is simply because you may have reported that she refuses to do things, well does she refuse or maybe she CANT. I think this was a psychologist and really, dont sweat it. It is really obvious in your case (to me, and in my opinion of course but probably to many here too) that this little angel has many other things that are the real issues.


Has anyone checked to see if she has autism? she has so many delays and features of that. Kids with autism will seem deaf to many people. They tantrum and fuss and wont share and can't play nicely because they dont get it. theyre not processing information around them in a typical way. many many many kids with autism are first diagnosed with adhd/odd/anxiety disorders those three things in particular

Does she have any sensory issues (picky about food, clothes, smells, noises bother her, puts thing in her mouth or avoids such things???) Does she play imaginatively??? like does she create play schemes using a characters or play back and forth with other kids sharing materials. Or does she play more alone or use materials next to otehr kids but nto really going back and forth.... not makig up role play etc???

Does she have any problems with going from one activity to another? Any sleep problems? any toe walking? Any things she fixates on like has to have and shake or rub or certain shows on tv that she has to watch over an over and talks about all the time etc.????


There are other parents here who will tell you about the developmental coordination disorder and how that can really look like adhd.

I think you will be happy when you find the right professionals to really help sort thru this... if you give us mroe specifics on the report it will help us guide you.

maybe sleep tonight and go thru it tomorrow. I for one promise to look for your post, okay???

Ignore yoru sister, she is not in this position. She is right that they may not understand it fully and may not know how to best help, but dont worry, we get it... we will help you and they will not say it is all your fault when they see all the neuro stuff.

 

[soapbox]

Lets see...
- adhd primarily in attentive type
- developmental coordination disorder
- mixed expressive receptive language disorder
- mathematics disorder
- anxiety disorder
- ODD
- overweight
- birth complications
- allergies
- eczema
- some sleep problems

First off, I'm impressed with your diagnosis team. This looks like a really thorough evaluation!

It's usually a long hard fight to get a Developmental Coordination Disorder (DCD) diagnosis. Most people just get Occupational Therapist (OT) evaluation and Occupational Therapist (OT) therapies, and never get the diagnosis. But... 50% of kids with ADD/ADHD also have Developmental Coordination Disorder (DCD). This diagnosis explains the motor coordination issues. Do you have access to Occupational Therapist (OT) now? if not, could you? Do you have details of the actual Occupational Therapist (OT) testing done? Occupational Therapist (OT) therapy is the biggest help with Developmental Coordination Disorder (DCD), after that its a matter of accommodations. No medications.

Mixed expressive receptive language disorder - I don't know all the details on this one, but... red flag for auditory processing problems (more later).

ADHD inattentive type, is what was formerly known as ADD - ADHD without the hyper. I'm not sure about the research details, but it is commonly understood that the inattentive type is more common in girls and the hyperactive in boys - but it CAN go either way. However, ADHD symptoms (in particular the inattentiveness) can also be caused by auditory processing disorders. Add to that, 70% of kids with ADHD and a Learning Disability (LD), also have APDs...

Mathematics disorder is often called dyscalcula - a classical learning disability.

Sleep issues - a bit of a catch-22. Sleep problems can directly cause all sorts of other problems - from inattention to behavior issues to mental health issues like anxiety and depression. However... anxiety and depression, extreme fatigue, and other things, can also cause sleep problems. Either way, its going to be important to get to the bottom of this.

More questions...
1) Did the testing include Occupational Therapist (OT) evaluation for motor skills AND sensory integration? If not, this can be an add-on, but will be important. If they only did the motor skills half, then get the sensory done. Both sets of issues benefit from Occupational Therapist (OT) therapy.

2) Did the testing include Speech Language Pathologist (SLP) screening for Central Auditory Processing Disorder (CAPD) and other lesser-known APDs like auditory figure ground? Given the number of comments about her hearing - and the repeatedly clear hearing tests - they really need to be screening for auditory processing.

Trust me. ADHD + Learning Disability (LD) + Developmental Coordination Disorder (DCD) + Auditory Processing Disorders (APD) = kid going insane. been there done that. (we couldn't get the diagnosis list completed until highschool...) Especially if you don't have all the accommodations, interventions, and if necessary medications. You're doing good to have the dxes you just got. Push for Auditory Processing Disorders (APD) on top of it... and then really, really push for the accommodations, interventions... Don't let that feel too heavy yet, there's lots on this board who have tons of experience with IEPs and 504s and everything else you can imagine.

{{hugs}}

 

[TeDo]

I want to welcome you also. Buddy is 1000% right!! It does sound like the delays are at the root of all the issues. Language processing could be a HUGE issue. She can hear just fine but maybe she can't process what she "hears" properly. All the delays also signal Autism Spectrum Disorder to me also.

My difficult child 1 had social and communication delays as an infant/toddler and was a late walker. He was just conpletely content to stay where he was so wasn't eager to get anywhere else fast. He was given the ADHD diagnosis at 3 years old. ODD was added in 3rd grade. When other things started going wrong and "typical" punishments didn't work with him. I had him reassessed a year ago and it turns out he's been on the Autism spectrum all along. That explains his inability to put his thoughts into apporpriate words, his sensitivity to many things, his behaviors when things don't go the way he wants (or thinks they should), his understanding of what is being asked of him (it just doesn't make sense to him), his extreme anxiety, and his insecurity.

I am also curious what the evaluator's credentials are. I also agree that counseling should be put way on the back burner for now. Do you know if the school has access to an autism specialist? I think your daughter should be evaluated using autism testing...if nothing else than to rule it out. In order to help her properly, you need to get to the bottom of things. ODD fits all of our kids most of the time but that is not a diagnosis to me, it is a description. Wrong help can do much more damage than no help at all. The way difficult child 1 was treated because of the ODD diagnosis was horrendous and increased his anxiety 10 fold and made him severely depressed. Now that we know the REAL problem, he is doing much better because he's getting the right kind of help.

You've gotten some good advice here. Stick with us and we'll get you and em through this. The wise women (and some men) here have been my sanity and are smarter than any professional I've ever dealt with or worked with.

 

[BusynMember]

Hi, sweetie. Welcome to the board, but very sorry you have to be here.

Many labels on one kid usually add up to one big umbrella diagnosis. I would take her to a neuropsychologist for more clarification. ODD, by the way, is not seen by many of us as a useful diagnosis. It just means "defiant." It does not explain why t he c hild is defiant. To me, it sounds a lot like this child could be on some part of the autism spectrum, from the late walking and talking to the acting out in frustrating. I have posted an online test that can rule in or out PDDs. It is not official, however people I chat with on another site (Pervasive Developmental Disorder (PDD) site) feel it is quite accurate as long as you give very honest answers. My son was a lot like your child. And when he caught up in speech, I thought, "Eureka! HE CAUGHT UP!" But other problems perissted, included "different" ways of learning and social issues. His first diagnosis was ADHD/ODD, but that was not his problem. Here is t he test if you decide to use it. Good luck with whatever you decide to do! Getting the correct school interventions is the only real issue right now. Later, the diagnosis/label will make a difference in the amount of help/supports your child can get.