<p>So the newly dx ADD S1 revealed last night that he “forgot” to do one , or maybe two, or maybe more, of his correspondance assignments last week, so he thinks maybe he isn’t doing so well after all. (Those of you with ADD 20-somethings are nodding your heads). Assume all the usual evasion, diversion, frustration, depression.</p>
<p>He has been working with a divide-and-conquer daily breakdown of the assignments, but it turned out he didn’t use it faithfully and …well, again, those of you with this kind of child (as opposed to the ones worried about Yale or Harvard, a B or an A in Advanced Wonderfulness) know all this stuff. </p>
<p>Student psych services had given him referrals to 4 local therapists who have ADD expertise. One is the doctor who didn’t format the original testing reports to disability office’s requests, and they were rejected. He does not see patients. One is from the same practice, so I was wary. Of the other two, one is on vacation through mid July, and the other office can’t see him until September “at the earliest”. Psych services testing branch has him on a waiting list and “will call you” when/if an opening appears, which might not happen until September. All of this information was garnered with arm twisting, a million phone calls, and because since he is an adult, I can’t be involved in this. EVEN THOUGH all these people freely admit that he can’t be tasked with this and he needs an advocate. If he could, HE WOULDN’T NEED help. And yes, he can sign a HIPA release, but only AFTER he’s been through intake. </p>
<p>It’s like a bad dream you can’t wake up from. Everyone agrees he needs help, nobody is able to provide it, and I’m supposed to stay optomistic. I intellectually understand the need to be a cheerful coach, but it’s like watching someone drown. Every time this happens I feel more and more like the world is just a big fat lie, making promises and never keeping them.</p>
<p>Don’t be surprised that a bureaucracy is acting like a bureaucracy. Think of it as a force of nature. </p>
<p>Does the school have an Ombudsman office? They may be able to advocate for your son within the system. </p>
<p>There is also an appeals process that has to be part of Disabilty Services. </p>
<p>As you no doubt know, students with disabilities are entitled to services as defined by federal statute. Schools are required to provide services. Here’s an overview of Section 504 from the US Department of Education</p>
<p>I am sorry, and I do know how you feel. Big, big hugs. When someone you love has disabilities, if that person cannot deal with the option and opportunities out there to give him a chance to enter the “real” world and become self sufficient, loved ones have a tough decision to make. One has to decide how much of one’s own life you are ready to give up in order to become the Anne Sullivan to your Helen Keller. Yes, that is an extreme example, and I give it to make the point. I know a number of people who function only because they have a constant companion. Usually, if not always, it is a family member who has decided to make that what s/he will do in life. The fact of the matter is that NO ONE is going to stay on top of someone else’s needs unless paid directly to do so and is monitored to make sure this happens or the person cares enough about the needy person to do this.</p>
<p>Here is something that helps me so i don’t forget (ADHD):</p>
<p>Make a list and hang it somewhere where he can see it. When he gets one assignment done, cross it off. Also having the hw in the same area as said list helps too.</p>
<p>Yeah, that’s what he does. Except that he’s been crossing off things he hasn’t finished yet, and telling himself he’ll finish those tomorrow. So I have to check the list, and then verify the list against the actual homework given and logged in as done (the classroom system does that, it’s pretty awesome) In general, he finds lists very confusing and anxiety producing. And he hasn’t been taking his meds. The prescribing PA has left on a medical leave, so now he has a new one. That he won’t see again until late August.</p>
<p>My friend has a son who has had these sort of issues for years. She told me last year that she is beginning to think that he will never be self sufficient. THere are not enough safety nets in the system, and when left to himself, he could be dead in a short time. So she and her husband have to take care of him. They have found some work for him that he can do that does pay something and have worked hard at getting him as independent and out of trouble and risks as possible. That is the stalemate they have reached. Every single time, they try to do less, a big crisis arises, sometimes life threatening and very bad. Their biggest concern is what will happen to him when they can no longer provide the umbrella that they do. The mom is getting counseling herself to deal with this, and hopefully get ideas and find opportunities as they may arise.</p>
<p>You speak for every parent of a child who falls outside the range of “average”.</p>
<p>The parents I know who have kids who need special services, particularly mental health services, all seem to be swimming through syrup to find answers, services, and a way to step aside when their children reach adulthood.</p>
<p>And the rest of us, who are all closer than we think to being in a position like yours, should be required to read your post. Daily. Especially when tempted to gripe about our child’s “B in Advanced Wonderfulness” that may keep him out of Yale or medical school.</p>
Speaking as a parent of an ADHD college kid, it seems to me that this is the issue much more than the availability of therapists. Therapy can’t “cure” ADHD. At best, he will be guided on strategies to organize and prioritize his life. But it’s likely that proper medication will be key to success. Frankly, if my kid wasn’t taking medication he needed, I wouldn’t be paying for therapy or for college. Your son has to be committed to the process or nothing will work, and failing to take prescribed meds is opting out of the process completely. But I’ll also mention that finding the proper meds for an individual’s ADHD can be very much a hit or miss proposition, and since he’s newly diagnosed, it’s possible he hasn’t been put on the right stuff yet and is avoiding his meds because they are ineffective or causing unwelcome side effects. He needs to be working closely with the prescribing physician to monitor results and tinker with medication options and dosages. It may best for him to take a semester off while this is all sorted out.</p>
<p>Best of luck in navigating this rocky path.</p>
<p>Sending hugs. Very, very tough. I came to hate HIPPA with a passion given the roadblocks thrown in my way by Medicare and the various insurers despite POAs and releases. </p>
<p>On the med front: Is he CHOOSING not to take his meds, or is he FORGETTING to take his meds? They are two very different problems with very different solution possibilities. If it is just forgetting, there are a number of electronic medication reminder systems available. If it is choosing, that’s something that he should work out with his doctor(s) – but it might be appropriate for you to be clear that college is a privilege, and if he is choosing not to take medication then paying for college at this point is simply pouring money down the drain, and he really might benefit from a medical leave of absence to get time to get this worked through and an effective support system figured out.</p>
<p>I must have very leniant doctors. I’ve always been able to call the doctor and say that I authorize them to talk to my mom, and then hand her the phone. </p>
<p>It might help if you coach him through phone calls, or write a script of how to open the conversation. I’ve had my mom on another phone before, listening to the conversation so she could write down what to say next. Of course, he’d have to be willing to deal with this and accept your help. The current mess aside, this is a skill he needs to develop to the best of his ability-- whatever that means for him. The need for it doesn’t ever go away, I think accepting that he can’t do this without your help and letting it lie without pursuing it would be a critical mistake-- he will experience situations in college and in life where he needs to advocate (ADD related and completely unrelated things) and you know from his history that he probably won’t call you for help. If he’s not willing to let you help him learn to do that the best he can, then I would throw that into the same category as refusing to take meds. Learning to independently navigate ADD to the best of his ability needs to be an integral part of his treatment. I am not saying that I know without a doubt that he can totally handle this without help someday, thus the “to the best of his ability,” I obviously have no idea what he’s capable of, but I would make finding out just how far he can go and helping him to get there priority number one. He’ll be helpless without you otherwise no matter how much progress he makes.</p>
<p>There was a time where I was too timid and disorganized to so much as make my own routine medical appointments, but I am an excellent self-advocator now… a lot of improvement is possible, even if it doesn’t seem like it now. You won’t be able to see how much until he really commits to it, but that doesn’t mean that potential isn’t there. Don’t despair.</p>
<p>He forgets to take his meds, he’s not deliberately avoiding them. He doesn’t see a doctor, only a PA who manages meds for many patients, and he saw her 3 times and now they’ve switched him to another PA who will see him again in 10 weeks. Everything we know about ADD we’ve read in books or advocacy sites. There is no “working closely with the physician” because there isn’t a physician. S2 has a life-threatening, chronic illness so I am familiar with advocating and comfortable with it, but there is no leverage or information or support. We are all he has right now. </p>
<p>He is committed to the process – the difficulty of course is that commitment cannot always overcome how he is wired. It’s not about wanting to. He has already taken a semester off, which followed the sorts of crisis and interventions typical to ADD students in free fall. At least he is not much into risky behavior! He is currently working p/t in his field, very successfully and his colleagues think the world of him. He is paying his tuition for this summer class, and will pay for the fall, but that’s mostly to make him feel capable. I would never, ever, hold it over his head again. It doesn’t work. It only makes him feel more guilty, more stressed, more anxious, more depressed about his situation. I get that for some students that is an effective strategy. </p>
<p>There is no appeal for disability; his paperwork has been rejected due to a lack of required documents that, in his case, do not exist. Yes, I have pointed that out, to no avail. Yes I know that isn’t completely legal. We are just not going to tilt at that windmill for the sake of getting extra time on a test. As if that were our biggest problem right now ;)</p>
<p>Ema, you always make me feel better. He is better on the phone now because I did figure out what you describe – he needed to know what to expect, and what to say. We’re working really hard to be a compassionate source of support for him, while helping him be independant, but not pushing him into anxiety. Makes for a long day for everyone ~</p>
<p>Ema – My HIPPA issue was that I was either not in the same city as the parent/elder who granted the approval, or it was my mom who was unable to speak full sentences subsequent to a stroke. Much easier when you can ok it and pass the phone over.</p>
<p>Greenbutton – is there any way to get him into at least a primary care physician who will provide some continuity of care? Perhaps his pediatrician? (Who many times deal with kids until the end of college.)</p>
<p>Your S and I are a lot alike in some ways, it seems. He is lucky to have you in his corner.</p>
<p>At one point in time, before I made the improvements I’ve made now, I was a phone canvasser for a political organization. You can imagine how THAT went.</p>
<p>I would have your son sign a release to you, and fax it to office of first psychologist. Tell them you want an explanation of why the psych tester’s report was not adequate. This could be flaw of the school, not the tester. Honestly, most therapists are freer I summer than any other time of year. Does other referral take LONG vacation? In sum, be the squeaky wheel. </p>
<p>Do you have a local therapist? They could look thru Nat Registqer and find someoneone appropriate, make. A direct re feral.</p>
<p>The therapists I speak of are local, and we directly referred ourselves to the testing psychologists. The college gave us a detailed list of the many things they did not like about the psych report, I hand-carried it (again-- I had given it to him in the first place) to the psychologist and expressed my profound disappointment that he hadn’t done what they wanted; he tested my son some more and we have yet to see that report, although S1 was in to get the verbal summary. Some of the things the college wants simply do not exist in his case. Some of the errors are omissions of particular test this psychologist will not administer; the school’s psychiatric center will, but they are waitlisting people out to September. They also continually say “even if the report is accepted, that doesn’t mean you will be accepted for services”. </p>
<p>The suggestion of going to his primary care physician (the same guy DH and I see) is a good one. I will have to find out after S2’s graduation is done this weekend.</p>
<p>arabrab: Can you expand on the names of electronic medication reminder systems available or how they can be found. I haven’t heard of this before and it sounds like it could be very useful!</p>