dvr – The Happy Typist

My last post was a lengthy one, so I wanted to give you a short list of resources and words to say to get the eval you need to get the diagnoses that give you the help you need. (Also, if you are already covered by insurance please go straight to #3.)

Your Local Sliding Scale Mental Health Clinic: I know this is a frustrating one. Funding is tight, so resources are tight. Scheduling is hard and generally brief and your therapist is likely overworked and overwhelmed. Be your own advocate, ask for the eval anyway. Use words that explain why you need the eval, not why you want the eval. For example: “I am really struggling with concentration and I believe it’s more than depression. I was researching ADHD and I have shown (insert symptoms described) my whole life. Do you have a psychologist on staff that could do a neuropsych eval with me, or one you could refer me to?” And if they say no…
Your Local Sliding Scale Health and Wellness Clinic: Try the same thing as above, with a little extra something about that your mental health clinic did not have the resources or connections available to refer you to a specialist.
The Health Insurance Marketplace/Medicaid: If you are lucky enough to be in an expansion state, you may likely qualify for medicaid. If not, and you don’t already have insurance, please go to healthcare.gov and apply for coverage. There is a phone number on the website that you can call if you’d rather apply via phone. They will help you through it. Please beware of imitation sites, only use healthcare.gov. Once you qualify, call your insurer and ask them where the nearest psychologist is in your area and what their rules are for specialists (do you need a referral or can you make an appointment on your own, for example).
Your Local Health Department and/or Dial 211: If you are still struggling, nothing so far has worked, and you are at a loss for where else you could turn, call your local health office or dial 211. You can visit their websites here: http://healthfinder.gov and here http://211.org. (I find that 211, for me, can be frustrating only because I am very adept at researching and finding services, so I tend to be more aware of the services still active in my area than they are. If this does not describe you, 211 can be a fantastic resource.)
Your Local Department of Vocational Rehab (DVR): Nothing is working, you can’t hold down a job, and you’ve tried everything above. Or maybe you did try some of the things above and they are working, but you’re still having trouble maintaining employment. Then call DVR. Not only can they help you get the evaluations you need to identify what is getting in your way, they can also assist you with accomodations and a plan for your future. You can find your local office by searching department of vocational rehab with your city and state. Or call your local department of family services or department of workforce services office and they can get you pointed in the right direction.

You don’t have to stay stuck. You have a choice. “No” is just your next stepping stone to yes.

Warning! This is going to be a long one. I hope it helps you! However, if you find it TL;DR then please know I have some breakouts coming. I love lists! 😉

On Tuesday, I told you where my relentless pursuit of diagnoses for my children, my spouse, and myself has brought me. However, I didn’t tell you what that journey looked like, or even the actual length of time I’ve spent in that relentless pursuit.

Let’s talk first about time. I am still in the process! In particular, for my children. This pursuit is constant, and requires vigilance, a lot of research, social support from peer parents, and being your child’s unrelenting advocate. Your children are still developing, and so things are constantly changing. Unfortunately, many things like ADHD and ASD present differently in girls, making these diagnoses even harder to confirm. I will delve more into these issues in a later post.

I am going to assume that you are here because you are an adult who knows there is more to your story. You’ve struggled your whole life. You’ve been told you’re depressed, then you’re anxious, or maybe it’s bi-polar, etc., etc., etc… Those of us who have been on a journey to the proper diagnosis know that your diagnosis is this evolving monster that seems to change with each new professional you see.

I have been under the care of mental health professionals in some form, most commonly the combination of a regular psychiatrist in conjunction with a regular therapist, since I was fourteen. I acquiesced to their 45 minute assessment = diagnosis model for about fourteen more years.

When I was in my early 30’s my son was diagnosed with severe, debilitating, ADHD–like please get your child on some medication or he will not be able to attend to learn. Like now, please. And also, he is considered high functioning on the autism spectrum disorder. And he has anxiety, and sensory issues, and delays, and dyslexia, and and and. And once I swallowed all of those terms I did what I always do with my anxiety–I researched. When I researched, I began to recognize, and like so many parents who seek help and diagnoses for their children, I began seeking my own.

At that time in my life I was uninsured, and was under the care of a sliding scale mental health clinic. I started to chirp at them that I felt that I needed some more in-depth testing. They chirped back no, we’ve known you for years, we know. As often happens with clinics like these, funding is cut, changes are made and there is an exodus of staff. I followed my therapist, she’s fantastic and I’m keeping her! I am blessed to have insurance currently and so was able to do that.

As I worked on my mental health I also began to advocate for my physical health. Discovered I had narcolepsy. Got narcolepsy treated. I’m still irritatingly, overwhelmingly, it pisses me off how much it robs me sleepy. But I am not depressed. And when I try to think, it’s easier than it used to be. (Qualifier–that does NOT mean it’s easy! Just that it sucks less than it used to!) And so then I thought, why in the hell have I been prescribed so many sedatives?! Pushback again, for the diagnoses that support what I know are issues.

I applied for social security disability. They denied me after their psych spent the requisite 45 minutes to get to know my whole life story and how life affects me, and his response was I’m not that anxious. Good frickin’ grief. Sigh… But quitting is not what I do. If I did, I would not be here to tell you this story.

And so they said no, I got a lawyer, we’re still fighting. Whatever. I still needed the answers I needed. I have insurance now… I’ll get my own damn eval. I called local psychologists (we have two). Made an appointment, got my eval. I believe that was the time that PTSD and ADHD were actually finally qualified. But he still said I’m too social, I can function in society. Head:desk. Seriously dude, I freak out on people in line at the grocery store because they’re too close to me! I avoid errands and phone calls because the pretending is exhausting and then I have a people-ing hangover. Ick.

I still can’t work a regular 9-5 because of the laundry list of physical and mental ailments. Finances suck… and so next. Next, I went to my local Department of Vocational Rehab office. And I signed up. And they’re helping me start a business that accommodates my disabilities while simultaneously supporting the fact that I have disabilities and need some damn stabilization! I asked for a more thorough eval and stated my case. I told them these mental health issues affect me in such a strong way and I need to know what they are so that I can get the help I need to make things better. And they listened! And they helped me obtain that grueling eval. And I got seven diagnoses. Seven answers. Seven validations that it’s not me, it’s me. As in my mind, beyond my control, me. Not lazy-ass, what’s your damage, get your shit together, girl, me.

I have been told by three different people this week that they’ve never seen anyone so happy, so joyful and abundant, so excited, about receiving all of these mental health diagnoses. And I told each one, it’s because he saw me! When I was given the report information, and saw that the doctor said that I am not social, I almost cried. I get misty eyed still, just thinking about it. Why? Because he SAW ME! And after all, don’t we all really want just that? For someone to see us for who we really are and get us the help we really need? That is tailored to us, as the individuals we are? Many parents of children with special needs get really good at advocating for their babies, however they often forget to advocate for themselves. Adults without children may be even worse offenders of not seeking the help that is needed. There is still a child inside of you. They need you to see them and listen, please don’t give up on finding someone who will.

Oh yeah, and quantitatively, about 6 years is how long it took from me first really asking for a neuropsych eval, to actually getting one that benefitted me and my future.

Tag: dvr

5 Resources to Find A True NeuroPsych Eval (and other medical help you may need)

Relentless Pursuit–The Diagnosis Journey and How You Can Get There, Too.