I want a diagnosis

[ML]

For a long time I was comfortable with having floating diagnosis; including the one that it's just bad parenting (I know better). It was adhd, Obsessive Compulsive Disorder (OCD), three kinds of anxiety (Generalized Anxiety Disorder (GAD), Separation, Social) etc. I also see signs of bipolar with sugar addictions, hating the "no" word, manipulation. I see this as possibly maifesting in adolescense or teenage years. He doesn't meet it fully now. I understand that it's an inexact "science". But, lately I've been feeling the need to have a *reason* to explain to difficult child why he might feel different. On the other hand, he HATES being perceived as different. But maybe if he had a reason, it wouldn't bother him so much. Does this make sense?

Now I can't afford a neuropsychologist full on evaluation. I have to stay within the insurance system. He's been through the autism research clinic in Denver (very respected), a psychologist and 2 psychiatrists. One of them thought I was crazy for thinking anything was wrong (my parenting implications), the other wanted to take away the adhd and just leave anxiety.

I think the reason the autism site missed spectrum is because they looked more for AS and I think maybe he is PDDNOS and so high functioning as to be missed. He certainly has social deficits but I think he's learned to fake "normal" in most situations that the pros miss it.

The thing is, he IS different. I think it is better to be open about that and teach more that different isn't bad, just different. I need to have that honesty with him. But how can I tell him he is on the spectrum if the pros haven't backed me up on this?

I wonder if anyone has any ideas.

ML

 

[BusynMember]

Hi.
I just wrote about how hard it is to diagnose kids and even adults. If you suspect Pervasive Developmental Disorder (PDD)-not otherwise specified however the child doesn't have a psychiatric problem, although it can look like bipolar. He would need a different sort of treatment if he has Pervasive Developmental Disorder (PDD)-not otherwise specified and medications are not the first and only treatment of choice for that, nor is talk therapy. Bipolar is a completely different animal from Autism Spectrum Disorders (ASD)--it's a brain disorder--a chemical imbalance, in which case the main treatment for stability is medications, along with talk therapy for some. For Autism Spectrum Disorders (ASD) you really do need a neuropsychologist. Psychiatrists routinely overlook it. This happened to my son, and he was put on tons of medications that we now know he didn't need. I wish you luck. The diagnosing part is very difficult and tricky and often wrong. The difficulty is because many of the disorders have the same symptoms. With childhood bipolar you can be phobic, have high anixety, even panic attacks (I had panic attacks as a child). But if you have Autism Spectrum Disorders (ASD), you also usually are phobic, have high anxiety, and panic attacks. Bipolar kids are usually more social than Autism Spectrum Disorders (ASD) kids, at least when they aren't depressed. They also make better eye contact and often are early talkers rather than late talkers. However Aspergers kids (high functioning autism) also talk early. They just have trouble with normal conversations. Both can have Obsessive Compulsive Disorder (OCD) traits, although Autism Spectrum Disorders (ASD) kids tend to like their obessions (and rage when told to stop). Bipolar people don't like their obsessions, but can't stop them.
Wish I could help you more.

 

[Steely]

In both of your posts you sound like you are searching for answers. I am not sure if that quest ever goes away as a parent of a difficult child. My son is 17, and I am still thinking - well maybe.............

The point is though, at some point you just have to look at who he is as X, and accept that as the answer. He is unique, different and does not follow the main stream protocol for most other kids. He is X. Period. He could have a million different diagnosis, but unless medications are involved, it is not so important. What is important is that he feels loved and validated for just being X. (Which I am sure you do.) He does not need long and complicated answers as to why he is this way or that. He just needs to know that he is awesome in your book.

I have tried a million times to explain to my son his dyslexia, BiPolar (BP), and NonVerbal Learning Disorder (NVLD) - truthfully it seems he does not care. He just wants to feel normal. So instead, I have just tried to accentuate his strengths, minimize his weaknesses, and play down the fact that he is different.

It is hard for us moms. Really hard.

 

[ML]

Thank you MWM and Steely,

I know you are both right. I guess Steel is right and I have to go back to being comfortable in that place of not having answers. I just can't help but feel it would make a difference to have a solid diagnosis like AS. There is a lot of support out there for that, ya know. There's only this place for "X". I wish I could clone all of you and make my own village here in real life with you all as neighbors and friends. I guess I'll have to work on accepting what "is" and just be grateful for having you here. Hugs, ML

 

[ML]

d's anxiety has not gotten much better. The Celexa has helped reduce the meltdowns and the emotional frustration to a large extent and I am grateful for that. BUT, the fears have not gotten any better. At 9.5 he is still afriad to be in a room by himself. If I go upstairs, he has to follow, or his favorite trick is to yell for me to come back down for something. I've talked to him about this being an area we need to work on, that he needs to know he is safe in his own home.

My question to you all is this: Have you dealt with this? how have you dealt with this? Is this an area that medications might be needed?

Thanks. I know I've posted a lot this weekend but I am searching again as Steely mentioned and I'm working towards some level of understanding and acceptance so I can move on.

Thanks so much just for listening.

ML

 

[smallworld]

My son exhibited behaviors like this, although his diagnosis is different. He did outgrow it in time.

Have you considered Cognitive Behavioral Therapy (CBT)? I recently attended a lecture by an NIMH doctor who is an expert in childhood anxiety. He said CBT is the single most helpful intervention you can do for a child with anxiety. Coupled with medications, axious kids who undertake CBT make excellent progress.

 

[ML]

Thanks, Smallworld. CBT is something we intend to try. I'm looking for a therapist locally. We were seeing one but it was too far and caused problems with logistics.

I'm so crazy with all this. When you said your difficult child had similar symptoms I immediately clicked on your profiled to see what diagnosis he had to see if it would fit.

Thanks for your thoughts.

The reason I want a diagnosis is so that I can take him to support gatherings and he won't say "why are you bringing me to hang out with these (aspies, mood disordered kids, etc)" unless I can say "this may be you too". He knows I think something is different (because it is). His self esteem is so fragile already. I think talking about it honestly would help. I just don't know how to do it.

I guess I can say "d, you are different, we just don't know why". No, that wouldn't work for him. He's a black and white person and wants answers he can wrap his brain around. I guess I do too.

Sorry for the long answer to your response. I do thank you for allowing the opportunity to think outloud and brainstorm about this.

ML

 

[smallworld]

Michele, I go to support gatherings of other parents with kids like mine. I don't take my kids to support gatherings of other kids with mood disorders. My kids want, above all else, to be like everyone else. So we work on their issues -- and talk about them openly at home -- but we also try to have them participate in as many normal everyday childhood activities as possible.

For example, my two older children have had Bar/Bat Mitzvahs. We scaled down the requirements of my son's Bar Mitzvah so it wasn't overwhelming to him. But we did it nonetheless because we didn't want him to say someday that his disability prevented him from participating in a rite of passage for a Jewish boy.

In spite of her challenges, my daughter played on her middle school soccer team last fall, ran for 7th grade class president and won (!) and plays the piano in recitals. We have worked very hard over the last few years to help her function at the highest level possible for her.

I don't know if I'm making sense or hitting directly on your concerns, but I think you need to figure out ways to help your difficult child function to the best of his abilities regardless of whatever diagnosis he eventually ends up with. Is he getting interventions in school as well as what you're pursuing privately?

 

[ML]

He has a 504, they mostly have organization stuff in them, lists, etc. Also, he goes with some other kids once a week to a social group with the staff psychologist.

I do hear what you are saying. Maybe getting together with these moms with similar kids with the kids themselves isnt' a good idea. You might be on to something. Lightbulb time! Thanks SW.

I just saw a cute movie last night about a bar mitzvah. Something like "Keeping up with the Steins". It was really good. It help me understand the ritual better and it was a really beautiful story. My good friend's son just had his last year but I couldn't make it to Difficult Child; I wish I had.

Thanks again for conversing with me about this.

xo

 

[Steely]

You know, the one thing that you have not had is the neuropsychologist evaluation, correct? This is the one test that would rule out Autism Spectrum Disorders (ASD). You said you had him evaled at an Autism clinic - how did they evaluation him? Perhaps for your sanity this is the one test you could start pressuring the professionals around you with its importance. Insurance would have to pay (I think) if the professionals treating your son demand that this would be in his best interest.

As far as anxiety, cognitive therapy is probably the best route for that because it sounds like his anxiety has manifested itself into some compulsive soothing rituals, like always needing you by his side at bedtime.

FWIW my son has had every test possible.........including 3 neuropsychs...........and every time they were able to see that he has a NonVerbal Learning Disorder, but was not quite AS! He had many of the characteristic, just not enough to make a full diagnosis. So I was left, basically, with where I started - just knowing difficult child is a quirky, moody, angry child.

I have explained many times the details of his brain chemistry and what causes bi-polar and what a NonVerbal Learning Disorder (NVLD) is. I think he understands all of that, but it does not really help make him feel better. It is like a diabetic child. They understand what it is in their body is going wrong, and why they have to take medications - but that does not take away the pain that they feel different. That pain has to be addressed completely separately from the education of the illness.

It is all very frustrating - I am with ya!!!
Try to take many deep breaths, and try to find some peace in life this weekend. I know, for me, I start to get really obsessive about things like this, and get tunnel vision, which only makes me more crazy and unhappy.

 

[BusynMember]

Boy, your son sounds like me. NonVerbal Learning Disorder (NVLD), but they won't say Aspergers. I went through a stage when I just wanted to be like everyone else, but I have learned that being different isn't bad. And maybe he will too ((((Hugs)))