Friday, March 4, 2011

no longer disabled

   As y'all know, all three of my boys have various special needs that range from "quirky" to "prognosis uncertain." My oldest had to have an extra digit amputated as a toddler, has a benign brain abnormality that scared the pants off us until a neurosurgeon looked it over, bleeds easily, and takes medication for ADHD. He's also what some people would refer to as an "Aspie," but (and I mean no offense to any of you who may feel differently) I hate that word like poison. I wouldn't change my nine-year-old for anything because I love him just the way he is, but I also don't feel like bestowing a pet name of any kind on him as a result of something that makes his life harder than I'd like it to be.

   My middle child is also on ADD meds, has a more serious developmental delay (currently classified as PDD-NOS) that causes him to be in special education (although he is primarily mainstreamed right now), and has some neurological oddities that have caused more than one "is this a seizure or not?" appointment with various specialists (his EEG, praise Godiva, is clean). He also, as of a hospitalization last month, has a new (we know it's new because he USED to have an "innocent" or pulmonary flow murmur and all of my boys got a full cardiology workup when Genetics diagnosed them--and me--with a heritable connective tissue disease; that had gone away and no one had heard it for two years and now there's this) heart murmur that we're looking into.

   You wouldn't necessarily look at either of my older kids on a playground with a group of their peers 99% of the time and be able to pick them out as the kid in the class with special needs is what I'm saying. They can "pass."

   My youngest one...well, I've written about him here before. He's still doing MUCH better than ever before and we're all very optimistic (which I am still getting used to), but the road to where we are now with him hasn't been easy. He has received SSI and Medicaid based on his "disability" (which I recently found out was officially classified as "malnourishment;" I find that both inaccurate in that we were pumping him FULL of calories and also the understatement of the century in that the poor kid couldn't seem to ABSORB any of them for a while there) for most of his short life, and just recently his "case" was up for review. I had mentioned to my husband that I was starting to feel odd about accepting the SSI on Little Child's behalf given that he was doing SO VERY WELL, and when the three-year review arrived I considered just waiving further services (which NOBODY thought was a very good idea). In the end I decided that I would just fill out all of the paperwork as thoroughly and honestly as possible (which one should, in theory, always do although I am continually astonished by how many people do NOT) and leave it up to the Social Security Administration to decide.

   I waited for their decision with bated breath. On one hand, money is nice and Little Child is very expensive to raise. On the other hand, your child is only eligible for SSI if they have a serious and life-limiting condition, and even though my kid did very nearly die and qualify for SSI in the first place, I still didn't like to think of it in those terms, because, obviously. I as the kid's mother struggle with how to consider him on a daily basis (discipline him normally or give him a pass because he has a serious and life-limiting condition?) (don't worry I generally go with the former except in the case of the binky that I allowed him to have 24/7 until his dentist vetoed that at three and a half), and if I, the person who knows my child best, am not sure whether it's safe to do anything besides wrap him in cotton-wool and coddle him, is that me being his mother or is that me reacting to the facts as presented to me by the experts? Can I trust my gut that says he'll continue to improve, or is it wishful thinking? I started to see this three-year review as a "magic eight-ball" of sorts; the Social Security Administration and its team of experts in saying-whether-your-kid-will-die would be my ORACLE. Every month that the check continued to arrive I would have a small nervous breakdown because THEY STILL THOUGHT MY BABY WAS GOING TO DIE.

   Don't worry, I have a magnet on my refrigerator that says "I have more issues than you;" I know this isn't quite normal.

   Directly after my middle child's recent hospital stay I was fired from my job of eight years (or more accurately, my longterm freelance client opted to take the loophole in my contract that says they can can me, mid-project, with or without notice or reason) due to my "personal life" and its detrimental affect on my ability to keep one particular deadline. This was bad news (obviously) and good news in that I was drowning and ready for a change. The next day, a large, official packet came from the Social Security Administration.

   "Dear MFA Mama, after completing our review of Little Child's health and medical care with the following ten specialists of his, we have determined that he is no longer malnourished. Little Child was receiving SSI because he was malnourished, and so after April of this year his benefits will be terminated. Should his condition worsen, we encourage you to reapply, and if you wish to dispute this decision [yadda yadda yadda]...Sincerely, the Social Security Administration."

   So money here just got very, very grim, and I couldn't be more thrilled. Make sense? Welcome to my life :)



MFA Mama also keeps a personal blog where she writes about her family, backyard chickens, and other things that make people wonder if she's a bit off in the head.


  1. ACK! NO! Holy crap. I mean, great! He's better. But money. ACK!

  2. YAY! with a dash of Oh, no! on the money front.