What do you wish was out there the most? Update....

[Citrusheights5]

I've been at school, filling out my gen ed courses going 3/4 time. I've decided to go into cognitive sciences/ neuropsychology. The UC has already guaranteed my admissions, based on my course load, classes at my community college. It's a Terrifying prospect, but I am at a crossroads. Research, or client therapy. I'm trying to get a grasp of what parents/ people are looking for. Information, research, intervention, testing, etc. What I would like to do is soooo far from reality at this point I need to reevaluate. Short of taking over the educational system, I dont think I could be happy within the school system, I'm just too jaded.
So just out of curiosity what do you wish there was more of??

Edited October 14, 2016 by Citrusheights5

[samba]

I, too, am jaded by the school system, both as a former teacher and as a parent seeking services. I guess I would lean toward client therapy. We've had the most growth and forward movement with private therapies (mostly speech but also physical). Maybe our situation is different...no one ever discusses testing. My son has Down syndrome and no one seems to care about anything else. I'd like some testing to see where we stand and what other issues we may be dealing with (suspected CAPD). I do a lot of research. I think I'd like some help with interventions and testing. 

[Crimson Wife]

Clinicians who are really skilled at correctly diagnosing complex kids.

[GoVanGogh]

Clinicians who are really skilled at correctly diagnosing complex kids.

Yes. This.

Our pediatrician kept brushing off my concerns. When I finally put together a portfolio of my son's school work and test scores and pushed for a new OT eval, the pediatrician laughed in my face. Laughed. In my face. Said I would be wasting their time.. I got the OT eval. Within one minute with the OT, OT watching DS struggle to write his name, she asked if my son had ever been screened for CP because she was sure he had it. I let out a few choice words, as DS was screened by state early intervention program as a toddler and we were told he didn't have enough symptoms to warrant further CP screening.

We were fast-tracked to a neurologist and (finally!) got the MRI we had been asking for which confirmed DS had CP. it then took a long time to work through the system and therapies to get a full diagnosis. Because of DS' age, we had to work backward. They would diagnose one piece and we get therapy for that before we could move further in to get another piece of the puzzle/diagnosis. It was awful. I wish there was a more streamlined process. More education about neuromuscular issues. I was shocked that DS was diagnosed with clonus and - while looking for a new pediatrician - we would find doctors that had no clue what it was or what it meant.

Another thing: I think there should be an automatic, "this is the diagnosis and here is a referral to a mental health doctor because you will likely need it." It took us several years and a very scary experience to realize that I needed mental heals assistance.

[Crimson Wife]

 They would diagnose one piece and we get therapy for that before we could move further in to get another piece of the puzzle/diagnosis.

 

This is the story of my SN child's life. It's the blind men and the elephant where every eval brings a different diagnosis that helps to shed some light on her challenges but nobody's got the full picture yet.

[Heathermomster]

Yes. This.

Our pediatrician kept brushing off my concerns. When I finally put together a portfolio of my son's school work and test scores and pushed for a new OT eval, the pediatrician laughed in my face. Laughed. In my face. Said I would be wasting their time.. I got the OT eval. Within one minute with the OT, OT watching DS struggle to write his name, she asked if my son had ever been screened for CP because she was sure he had it. I let out a few choice words, as DS was screened by state early intervention program as a toddler and we were told he didn't have enough symptoms to warrant further CP screening.

We were fast-tracked to a neurologist and (finally!) got the MRI we had been asking for which confirmed DS had CP. it then took a long time to work through the system and therapies to get a full diagnosis. Because of DS' age, we had to work backward. They would diagnose one piece and we get therapy for that before we could move further in to get another piece of the puzzle/diagnosis. It was awful. I wish there was a more streamlined process. More education about neuromuscular issues. I was shocked that DS was diagnosed with clonus and - while looking for a new pediatrician - we would find doctors that had no clue what it was or what it meant.

Another thing: I think there should be an automatic, "this is the diagnosis and here is a referral to a mental health doctor because you will likely need it." It took us several years and a very scary experience to realize that I needed mental heals assistance.

GVG, how are you and how is your DS doing?

 

OP, I would like to see more people specializing in EF disorders.

Edited October 13, 2016 by Heathermomster

[sweetpea3829]

So many things!

 

First, I wish we had more answers and insight into the actual true nature of the various LDs. I feel like so many things are labeled dyslexia or dyscalculia, when actually, it's something different that has some symptoms that mirror dyslexia and dyscalculia.

 

So I wish research was further along and more clear.

 

Second, I wish there were better interventions for dyscalculia. I know Ronit Bird is out there but her material doesn't address my daughter's needs and there isn't much else out there.

 

Third, I wish flex schooling was a legal option in every state. I wish I had the option to use the school for certain classes and programs without having to enroll completely.

 

Fourth, I wish the education world would take a student customization approach for EVERY student in elementary. Imagine how much learning would occur if each and every elementary student had an individualized approach that met their unique needs.

 

Pipe dreams, I know.

[MyLittleBears]

People that specialized in EF disorders would be great. Ideally all teachers should at least know what they are and be able to recognize them in their students. There seems to be a lack of knowledge about this topic in particular. Also, kids with HF autism seem to fall to through the cracks. It seems everyone is aware autism in general but there seems to be very little help for the unique challenges and splintered skills of HFA. This has been our experience anyway.

[MeaganS]

This is a pipe dream but I wish there was more help for the complex, but high functioning kids. DD was diagnosed with SPD and Autism at 3. Not diagnosed as such, but it is certainly high functioning. But she also has Turners Syndrome and who knows what else going on. She just had an eval that will probably tell us she has ADD too.

 

I feel like HFA in girls is incredibly tricky. We know very little about how it is different than in boys, and it is definitely different. To this day I still question the autism diagnoses because it doesn't look like the autism I've seen in anyone else, but I've rarely seen it in girls. I hate that I question that and feel almost like we are posers when I say she has autism, when she certainly has something going on. Her TS diagnoses gave me a lot of comfort if only because it was a blood test and completely for sure.

 

I feel like most pediatricians miss most of the more subtle kids. I have a place in my heart for doctors and know how hard they work and care (DH is a resident right now) but without better screening tools and parents being their child's advocate this will continue to be the case. DD would never have been referred for any therapy or eval if I hadn't pushed (outside of my comfort zone). We probably wouldn't have known about dd's TS until she was 15 or 16 without having gone into puberty, if I hadn't pushed. I knew she was shorter than she should be for our tall family. Her pediatrician thought I was crazy and dd was just fine but humored me with a referral to an endocrinologist.

 

So yeah, basically I wish there was a magic doctor who could help me figure out my kid. We're getting there, but it is slow going. Thank heavens for homeschooling, though. DD would have been completely lost in the school system and I'm just glad we can opt out of that whole mess. 

Edited October 13, 2016 by Meagan S

[Lecka]

I wish more people knew about positive behavior supports and fba.  I am really, really into fba when it is done in a good way -- it is so good for my son! 

 

I just skip over talking to people who don't know anything about it, it is like talking in two different languages.

 

And then, I am suspicious to make sure people are not punitive or overly controlling, just because people have to prove to me that I can trust them.  Some people are too much concerned with their agenda and not with trying to see things from the child's perspective. 

 

I have also been very frustrated with people who do not know much about language delays and how/why some language skills can be so hard, or what the orders are.

 

I really like the Verbal Behavior approach -- so if there is a class offered in Verbal Behavior I would say to take it!  I think it is so good! 

 

I wish there were more people "in the know." 

 

 

[PeterPan]

GVG, just as a total rabbit trail, have you been watching the new ABC series Speechless?  It's on Wednesday nights at 8:30 and you can stream the back episodes on the ABC app.  At least in our house, we SO identify with so much of what is going on there!  And it's just plain fun.   :)

 

Citrus, as far as your question, I guess I don't really understand.  This is a BS, masters, or phd?  How far do you want to go with this?  I think people have what they're good at, what they're gifted at, and that has to kind of drive the answer.  The university near us has one of the top psychology programs in the country, and I've gone to see some of the displays for the research their students do.  It's really amazing.  I think it just depends on what interests people and what their gift is.  I think getting a degree that helps you move into BCBA work could be laudable.  I think evals are INCREDIBLY important.  Personally, I think neuropsychology right now is the most overpaid, over-depended on, least accountable, least responsible, most RECKLESS, arrogant, sticking pit of unaccountable whatever I've had to mire through.  People pay thousands and thousands of dollars for those neuropsych evals (we have, lots here have) and we have NO recourse when the arrogant, phd (pile it higher and deeper) gets it wrong or outsources half the testing or uses old tests or diagnoses under DSM4 instead of DSM5 or blows us off or blames things on homeschooling or...  Oh no, none of that would EVER happen.

 

I think be anything you want, but only be it if you plan to become EXCELLENT at it and passionate about it and thorough and honest.  Cuz I'm really tired of $300 an hour practitioners who deserve to be on dartboards. Of course I'm also tired of $100 an hour practitioners who could be on dartboards.  Psychs aren't exclusive to that list.  

 

Hopefully when you get in the program, you'll try different things (research and therapy and...) and let your professors give you feedback on where your strengths are.  :)

Edited October 13, 2016 by OhElizabeth

[GoVanGogh]

GVG, how are you and how is your DS doing?

.

Thank you for asking.

DS is doing well. His communication skills have improved so much since we started speech therapy for aphasia portion of diagnosis. He still has a long road ahead, but we are hopeful.

I have, just in past month, come out of the fog of past four years. I have an incredible local support system, with great therapists and specialists for both DS and myself.

[wapiti]

I have my own pipe dreams that mostly boil down (1) to more research into the biology behind symptoms and (2) to more connections between existing research, i.e., not just the big picture but the middle picture as well as the details of course.  It's fascinating but unfortunately super super complex.  I am frustrated with the lack of connections between medical specialties and likewise diagnostic symptom lists that mirror those boxes and that I think one day will seem archaic.

 

I could go on and on, though that doesn't answer the question of what area there will be a market for.  Both research and therapy probably have opportunity, but funding for either will always be an issue.  Do you prefer working with clients or scientific thought (for lack of a better term)?

[Daria]

I can't choose!  Here are two things I wish for

 

1) Well thought out, evidence based, assistive technology supports for adults, particularly around communication.  There are so many adults out there who either left the school system before things like speech generating devices or apps with dynamic display were invented, or acquired their disabilities after they left school.  Helping connect those individuals, particularly individuals who don't have family members funding intervention or advocating for services, with communication systems, would be a high priority for me.

 

2) Leadership in mathematics education for students with significant disabilities.  As a teacher, I feel as though there is are so many people doing amazing work in communication and literacy.  I have a clear vision, based on research of the skills I want my students to develop, and the sequences and methods to get them there.  I know how to connect it to the general ed curriculum, and how to make difficult choices when it's clear that a kid can't learn everything.  For math?  Nothing comes close.  

 

 

 

[mom of 2 boys]

- Better respite care / trained workers. 

- Community 1:1 aide support programs. 

- Social groups for very high functioning adults with autism (have jobs / houses / kids, etc.) 

- More social groups for children on the spectrum. 

- More parent support groups. 

- Training programs for churches. 

[Citrusheights5]

This is a complicated issue.  For those going into psychology, fairly early you need to decide whether clinical or research. BA or BS.  I'm at a point where I need to decide.  There is no sampling of both worlds before deciding.  Schools tend to focus on either Reseach or Therapy, and so the school you go to will also strongly influence which way to go.   Here is what I have learned so far, from talking to 3 different Universities, A med school and a Med school with a Dyslexia Unit. 

 

1)  Everything is disjointed because there has never before been a reason to unite these issues.  Education has nothing to do with dyslexia, neurology, medicine none of it.   Everything is literally in its infancy, so there is no cross over.  In order to pursue my degree, they will have to MAKE ONE UP.   How insane is that?

 

2) The most likely path I will take will be A.A. is psychology, A double major of B.A and  B.S. is Cognitive science, with the BS is neuroscience and the BA is in cognition.(This is already "done" with the guaranteed transfer agreement" So I will be going to UC Davis for that ) Then I would either decide to get my Ph.D . UCSF Med school in neuroscience, or Ph.D. at another university in neuro psychology. 

 

3) Every field I want to do, and pretty much everything you guys have asked for (with a few exceptions) require multiple degrees.   There is absolutely no CROSSOVER!!!   It is insane!!!  That is pretty much what I've discovered, but  I figured I would ask and see if I could avoid the degrees but it looks like no.

 

4) I WAS TRYING TO AVOID THE MATH!   seriously I could do it, but I just wanna be a whiny brat and NOT do it. I will have to suck it up and just do it. 

 

Ultimately my dream job would be here, http://dyslexia.ucsf.edu/

But I want to do MORE than just dyslexia.  I want to deal with cognition as a more holistic thing, but I just don;t believe I can pile another degree on what is already up above, BECAUSE THEY ARE ALL SEPEARATE !!!!   

 

It makes no sence that it is all seperate but it is....  I think even if i stop after the BA and BS it will be the closest to holistic as I can get within even the college educational system.   (They may even let me tripple major with neuropshycology, because the BA and BS are so similar, but they want to wait until I attend classes before approving it)

 

Essentially thank you, for confirming that this really crazy path, is the path that is needed out there and honestly what I want to do...And as more work is done in cogitive science, hopefully it will not be such a crazy path in the future!!! 

[Crimson Wife]

I've been to some of the UCSF neuroscience seminars and while they've been very interesting from an intellectual standpoint, they're not very practical in terms of actually helping people. They're studying mostly lower animals and it's going to take a LONG time before what they learn translates into improved treatments for humans.

 

UC Davis MIND Institute, OTOH, is doing a lot more practical research in neuroscience. They are the NorCal site of the LEND program. I'm hoping to become involved in LEND during my grad school but it depends where I get accepted.

 

UC Berkeley I believe has a doctoral program in neuropsychology.

[Citrusheights5]

Crimson, the problem with Davis Mind Institute at the moment is they are turning away from most standard LD. And focusing primarily on Autism, and I'm looking for a different focus, leaning towards learning, memeory, and EF. My son's were all diagnosed there and they have the best testing clinicians, we had to go elsewhere for treatment and actually had to follow a doctor who left due to the change of focus. I am going to look into LEND as I had somehow missed it in all my searches.

I would love to work on some of the research going on at the dyslexia center at UCSF, but that is a ways down the road!

Edited October 14, 2016 by Citrusheights5

[MistyMountain]

I like the research side of things personally and that is what I feel I would be better at. I am not a good people person. I think personality comes into play if you would enjoy working with people or working in research. One thing I do not like about clinical is that some families cannot get the expensive evaluations. I want to know more information on what different profiles mean and what type of curriculums work best for them. I would love to see more research on dyscalcula and more curriculum targeted to that. There really is not enough math program out there. I would like them to describe more learning issues that do not fall under the bigger umbrellas like dyslexia and what they mean and what causes them. I would love it if more teachers had access to this research and had to take classes on it.

[MistyMountain]

That does sound like a very exciting field to get into but yes that is very frustrating everything is separate.