Sep 29, 2011
I never even updated the above July post with the argument I had in August with the wheel chair company who still had not done anything about the process stating the therapist had never responded to their request by writing the justification letter, therefore, they could do no more for me.
You know the therapist who told me she had written the justification letter last winter?
The one who really didn't ever write the justification letter as I discovered in August?
The one who has been with The Baby for four years but quit recently to take a better paying job? The one who left on good terms? The one who would not return my phone calls or e-mails regarding the one-armed drive when I battled with the wheel chair company just 2 weeks after she left us in August?
I guess in some people's minds when they are done they are just danged done.
If it was just about me I would've brushed it off my shoulders like a bad case of dandruff but The Baby? Wheeling in circles?
Sometimes it is simply too painful to contemplate as you're dangling in one-armed drive limbo.
Yesterday morning as I was driving to work I prayed the way Jesus taught us to pray by beginning with the "hallowed be thy name" part. You know. The part we often forget. The part where we forget to praise and revere our creator for the things He has done in our lives and the things He does on a daily basis? The many blessing we partake in and forget to acknowledge?
So yesterday morning while whizzing down the interstate I made it a point to acknowledge out loud why our creator is worthy of veneration by naming the blessings I am the recipient of on a daily basis one by one.
Somehow I ended up on the subject of the one-armed drive turning it completely over to Him. All of my frustration. All of my anxiety. Asking Him to intervene as He saw fit.
Today the phone call arrived.
The one-armed drive has been approved.
It was actually approved on Monday of this week but for $5.00 less that the actual equipment would cost the wheel chair company to purchase. They refused.
Because as we all know wheel chair companies are not charities.
No profit? No deal!
Today Medicaid bit the bullet and agreed to the wheel chair company's terms.
Now we wait as the wheel chair company orders the one-armed drive.
And we are thankful!
Sep 26, 2011
I'm also broke.
When I was in the Social Security office recently with The Teenager and learned that I "may qualify for Medicaid " I felt it was the perfect summation on paper of my current financial status.
Irregardless, I still "tithe" and have consistently for 11 years now. I give 10% of my income to organizations and ministries that I feel make a difference in communities primarily in this country. I just got a letter from an organization in inner city NYC last week with photos of two kids I sent to camp this summer. One of them I already know as I have been sponsoring her since she was in pre-k and she is now in middle school. My sponsorship provides Thanksgiving dinner, Christmas presents and school supplies and so much more.
The founder of this ministry, Bill Wilson, is from my city. He was abandoned by his alcoholic mother at the age of 12 on a bench near the over pass that runs a few blocks from the home I live in now. Every Christmas eve, Rev. Wilson comes back to our city and spends time sitting on that very bench where his mother left him.
He was taken in by the elders of a church up the street when they became concerned after seeing him sitting in the same spot for more than a day still waiting for his mom.
She never returned.
The church paid for his braces. They clothed and fed him. They sheltered him and they sent him to college.
Back in those days one could do this without DCF swooping in.
If you go to the organization link I posted above watch the video about Bill being shot. He has also been blinded and beaten while living in NYC since 1980. His associate pastor was stabbed and killed a few years ago.
Bill still lives in the same apartment he rented in Bedford-Stuyvesant over 30 years ago.
Over the years as my income has dwindled my 10% to worthy causes has as well. I keep telling the Lord that 10% of $3,000.00 is $300.00 while 10% of $300.00 is only $30.00.
He keeps reminding me He knows how to do math.
So we live frugally. Which brings me to hitting an all time low.
Yes, you all knew I'd get back to that eventually.
Last Monday I stopped at a local Salvation Army thrift store on a whim and discovered that the week before they had begun a senior 1/2 price day every Monday.
Be still my elderly heart!
Today I went back and spent a whopping $8.00.I bought a Liz Claiborne shirt for The Teenager, two shirts for The Baby, cammo pj's for The Boy, a Karen Neuburger nightgown and a red blouse for myself for work and....
No. It was not a new bra.
According to The Bra Fairy web site:
" On average women buy 7 bras per year from Walmart, Macy's, Lane Bryant, Nordstrom's, Victoria Secret, etc. at an average cost of $20-$60/bra for a total of $140 - $420 annually. (This does not include athletic, nursing or specialty bras.) Store-bought bras typically last only 3-6 months at most."
Seriously? $420.00 annually? I could send a lot of kids to camp for that price including my own crew.
And 3-6 months?
I'll bet the bra donor spent more time in my thrift find today than 3 to 6 months. Just saying.
Anyway, I have to look at this realistically.
It cost me 99 cents and it hoists the puppies up. What more could one ask for?
Besides I'm tired of tripping on them.
Sep 25, 2011
Mayra Paulina Reyes
Speaker at the SPARC2011 conference
My first introduction to an IEP was in 1996. The same year STAND was formed by a very small group of parents and professionals. Very small in every way. I attended an IEP workshop back in those early days and sat with an audience of about six individuals. Call us wildflowers.
Daisy: What kind of a garden do you come from?
Alice: Oh I don't come from any garden.
Daisy: Do you suppose she's a wildflower?
There was little direction in those days from the professionals who were supposed to be directing the parent so finding STAND was a gift from above. And even if you did receive direction from the directors you could count on numerous directions being incorrect at any given moment propelling you in the wrong direction.
Doorknob: Read the directions and directly you will be directed in the right direction.
It is a dilemma many of us face now but back in those days it was much worse. Even if you were intelligent enough to navigate statutes and fine print you still needed professional guidance and as Alice said, "curiosity often leads to trouble." Challenging an imperfect "system" often makes one slightly unpopular. Ask any whistle blower about that one.
Queen of Hearts: Now where do you come from?
Alice: Well, I'm trying to find my way home...
Queen of Hearts: Your way! All ways here are my ways!
Yesterday I attended SPARC2011 which STAND's for Stand Pinellas Accessing Resources Conference. It is the 5th annual resource conference put together by STAND. The list of presenters was so impressive I had a terrible time narrowing them down to just four. I ended up choosing a couple for me and a couple that would benefit my clients in the zero to three population. I wish I would have been able to sit in on ALL of lectures.
There were over 700 people in attendance. A far cry from the 1996 handful.
I've mentioned my journey regarding The Teenagers 18th birthday recently. She is followed by a program in the state of Florida which should have been able to help me with the transition to adulthood. It didn't. Actually the advice they gave me was more than wrong. It was really, really wrong.
Alice: Unbirthday? I'm sorry but I don't quite understand.
March Hare: It's very simple. Now thirty days has Septem-NO wait. An unbirthday, if you have a birthday, then you...
One of the presenters was the very articulate mom of a developmentally disabled son who turned 18 in February of 2009. She spoke on the Guardian Advocacy program which my state is fortunate enough to have implemented in 2008. The brain child of a kindhearted judge who was concerned about the special needs children whose parents did not have $6,000.00 to file for Guardianship, the Guardian Advocacy program insured the same rights as Guardianship but for a filing fee of $400.00. It is also a simplified process that a parent can accomplish without an attorney.
Currently the state of Florida is waiving the $400.00 fee.
The mom who spoke was the first parent to apply for Guardian Advocacy in the State of Florida. When she walked in to the courtroom the judge told her before she even opened her mouth...
"I don't like what you are doing."
The pioneer mom forged on and the judge granted her request anyway.
Alice: I simply must get through!
Doorknob: Sorry, your much too big. Simply impassible.
Alice: You mean impossible?
Doorknob: No, impassable. Nothing's impossible.
Here's a news flash for those of you who parent special needs children (and I include myself) especially those of you who have younger disabled children. And a news flash for people who DO NOT have a special needs child. I have spoken to many on this 18th birthday topic and ALL, yes, ALL have been horrified...
When someone turns 18 they are legally competent unless proven otherwise. I don't care how OBVIOUSLY disabled your child is they are still legally competent. I don't care if your daughter thinks Martin Luther King Jr. is the son of God.
They are competent until proven otherwise.
Alice: Of all the silly nonsense this is the stupidest tea party I've ever been to in all my life.
This means if your higher functioning yet socially incapable child meets a predator on the Internet who just happens to have an STD they can hook up if they want to. Yes, this happened to a friend who happens to be an attorney.
This means if your disabled child wants to marry a louse who is only interested in their SSI check they can without your permission. In a similar incident a neighbor of mine spent $40,000 and four years getting the marriage annulled.
This means if you are 70 and your disabled son is 50 and you've managed to get away with being his caretaker since his infancy you may come up against a problem when he needs surgery 32 years later. Why? Because you are not legally able to sign and someone has finally challenged you.
This 70 year old mom is currently going through the process of becoming a Guardian Advocate.
It makes absolutely no sense for everything to change for a parent of a child who is emotionally, socially, and/or physically incapable to care for themselves simply because said child turns 18. But change it does unless you take the steps to protect your child by filing for Guardianship or Guardian Advocacy.
For a higher functioning special needs child Power Of Attorney may be an option but remember this: the child must be mentally capable of granting Power Of Attorney to the parent. When or if the donor (child) becomes incapacitated the document will lose it's effectiveness and enforceability unless this possible scenario is specified in the original requested document. This is commonly referred to as Durable Power Of Attorney.
Eaglet: Speak English! I don't know the meaning of half those long words and I don't believe you do either!
Summary: When your special needs child turns 18 they are no longer your child.
Alice: I wonder if I've been changed in the night? Was I the same when I got up this morning? I almost think I can remember feeling a little different. But if I'm not the same the next question is 'Who in the world am I?' Ah, that's the great puzzle!
Great puzzle, indeed.
Start now by aligning yourselves with other knowledgeable parents and groups like STAND. You'll be glad you did.
I'll keep you posted on the Guardian Advocacy process for The Teenager.
Let's hope it goes more smoothly than S-O-C-I-A-L S-E-C-U-R-I-T-Y.
That spells M-A-D-N-E-S-S.
Alice: But I don't want to go among mad people
Cheshire Cat: Oh but you must, you can't help that, we're all mad here. I'm mad. you're mad.
Alice: How do you know that I'm mad?
Cheshire Cat: You must be, or you wouldn't have come here.
Sep 21, 2011
I LOVE Freecycle although this post has nothing to do with Freecycle.
For those of you not familiar with the site it is a "gifting" group that offers free items. You can get anything from boxed cereal to chickens to generators for absolutely nothing. You can also make "offers' of items you have that you would like to get rid of. I recently cleaned out my fabric scraps and crafting items and rather than donate them to a thrift shop where they would probably get destroyed before they were even unwrapped I put them on Freecycle knowing someone out there would want them.
You remember this guy from this post?
"hey i'm wondering on the sizes of scraps? are they in odd shapes? i'm in need of curtains and ceiling covers. are they very "girly" colors? i am a guy but not opposed to all floral patterns. hope to hear back thanks"
I have visions of being 93 and mumbling, "ceiling cover...ceiling cover....what is a ceiling cover...."
The same week as ceiling cover man I met a 70 year old retired nurse who had just begun pursuing her life long dream as a collage artist and who gleefully grabbed up my vintage sheet music. We had the BEST time talking about art, nursing, and long lost dreams come true I almost forgot to see my next client.
The older I get the more i love re-using and re-cycling and re-purposing and people who re-use, re-cycle and re-purpose.
Of my five beautiful children when it comes to thrifting and freebies two of them are like me, digging through trash like puppies on steroids.
Can you guess which two?
And that brings me to "curb alerts."
Three families have moved out of our neighborhood recently. I was happy to see the lunatics next door go even though they left their teenagers behind in the house. As it turns out the teens are much more responsible than the parents ever were. And even thought there are usually a minimum of 6 cars on any given day parked in front and sometimes on my lawn, it is so nice not to wake up to the sound of the mother spewing the "f" word and/or the husband apologizing for bashing the wife's head into the pool, the wall, the tree...whatever.
Good riddance. God is merciful. I have no desire whatsoever to deal with someone afflicted with borderline personality disorder. If I did I would have been a psychiatric nurse not a pediatric nurse.
The next two families didn't bother with bagging their left behind trash. They just threw it out on the street and split. This clogged up traffic one day as the trash men took forever picking up their crap.
Yesterday another pile appeared a few doors to the left. What is wrong with these people? Haven't they ever heard of Hefty bags?
Enter The Boy. He comes through the front door all excited having found an in line skate in the heap.
"Look! I found wheels for our chicken coop!"
Even though the wheels were way too small for our chicken tractor I just wanted to squeeze him he was so darned cute.
And then I took a good look at the skate.
"Is there another one, " I asked nonchalantly?
Those suckers were PERFECT and are going right on Craig's List. Call me a dumpster entrepreneur but I am making money from these things not chicken wheels.
So I meandered down to the pile with The Boy and began picking through the items in a lady like manner.
Like any of my neighbors peeping through their curtains bought that one.
I found this:
A book I have always wanted to read! I know nothing about sports. I don't watch sports. The closest I ever got to anything football was dating two foot ball players in high school. But I have always loved two football figures, Tony Dungy and Lee Roy Selmon. Both are such men of honesty and integrity in a sports world gone mad
Rest In Peace Lee Roy. You are sadly missed.
And then The Boy found these:
I end this story with something that happen this week at The Boy's school. I was putting The Boy's wheelchair in the back of the van when Mrs. Needs-To-Be-Canonized spotted a vintage oil paining that i had in the back. She informed me her daughter collected old paintings and I gladly gave it to her. It was kind of a school parking circle pick-up "curb alert." She was thrilled. I was thrilled and apparently her daughter was thrilled until she realized out loud...
"She must think I'm such a loser shopping out of the back of her van!" And then Mrs. Needs-To Be-Canonized informed her who owned the van.
"Oh! It was The Boy's mother? Ok!"
I am still laughing.
Oh and before I forget...can anyone guess which one of my other children loves to dumpster dive?
Sep 18, 2011
There's a chill in the air. It's currently 81 degrees.
I love this time of year. One can actually garden and not faint.
On the home improvement scene this week I'm moving my entire house around and rearranging furniture. My friend, Heart of Dixie, sent a twin four poster bed with carved roses on the head board all the way from Alabama for The Baby a few weeks ago. Iris/Virus's hubby, The Beard, set it up.
It is gorgeous!
The Baby is tickled pink with her "Princes Bed." Literally. She keeps wrapping her self up in the pink canopy that drapes over the posts, giggling. While making the bed up with the linens I had just washed, I bumped "The Finger" which pulsated blood everywhere.
The Princess Bed quickly turned into a crime scene.
I immediately transferred The Baby, fresh from the tub, to the twin bed in the same room (that I had also just made up) where she promptly peed all over the Pottery Barn Quilt and through the layers of sheets and blankets. I was up til midnight washing everything.
This week The Boy and I hauled furniture from the garage and from up stairs where I dropped a full sized box spring on my toe. You know the one with the horrific arthritic joint? The one that the orthopedic surgeon told me was the worse arthritis he had ever seen and I needed a joint replacement but they don't make artificial joints for that area?
Because that is life, isn't it? You have nine perfect toes so you drop the box spring on number ten. I'm sure I broke it but it is so painful on a daily basis it sincerely doesn't matter.
I assured The Boy he did not need to call 911 and to simply ignore me. So proud of him for knowing the appropriate response to a woman's agonizing screams.
On the gardening scene this week I pulled weeds, bought established vegetable plants and planted tomatoes, cabbage, zucchini, and lettuce. I'm growing everything in pots this winter, inspired by one of my favorite blog-sters and by Mrs. M who does pots and "doesn't have the patience for seeds." I'm amending the soil with manure.
On the school scene Mrs. M and I attended the first PTA meeting at The Boy's school where the president was telling a new parent about the PTA's biggest fundraiser, The Auction, ending with the statement, "and they serve beer and wine." Mrs. M leaned over to me and whispered that they should also serve alcohol at the PTA meetings.
I love Mrs. M.
I also love The Boy's new teacher, Mrs. Zookeeper as does The Boy, although he sorely misses Mrs. Needs-To-Be-Canonized.
Mrs. Needs-To-Be-Canonized who greeted me at the car circle dressed like an alien this week to promote a school fund raiser. This was probably the catalyst that prompted my Menierre's attack. The metallic fabric of her weird garb swirled round and round provoking a serious case of nystagmus. We really take our 8th cranial nerve for granted.
Who actually happens to be the manager of the thrift store.
This week it was still there. No surprise. I spoke with Jose and told him something i think he already knew. No way was he selling that plastic atrocity for $30.00. Yes it was still "half-price." I noticed all the other headboards were gone but my king-sized blight on the head board industry was standing alone. He gleefully gave it to me for $20.00. I can't wait to show you my creation!
After I go out and charge a new camera.
On the fulfilling life long dream scene I ordered a water bath, steamer, canner to fulfill my life long ambition of canning my own produce and unable to wait for it's arrival, I spent the evening watching You Tube videos on making home made sauerkraut. This does not require a canner.
I have a crock
One of the kraut videos showed a woman stomping the cabbage with her feet to make her sauerkraut. I will never do this. I know. I know. You are probably saying that people drink wine whose grapes were stomped by foot but they are probably also drunk and don't really think about the toe jam thing.
As God is my witness I will never step on my kraut.
On the fulfilling life long dream scene part two I have begun the fulfillment of my life-long chicken ambition. The Boy and I are going to modify a Dogloo that I purchased on Craig's List into a coop. I have a lot of research ahead of me right now but hope to be up and running in a few months. I am employing my neighbor to make a predator proof, custom fit, door/ramp for the coop although I haven't informed him of this yet.
He will also be helping me build a chicken tractor so they can free range in the garden. I haven't shared that with him either.
I am saving and preparing egg shells to re-feed them and researching additional ways to feed them inexpensively. We're raising earthworms to supplement any commercial feed we will have to purchase. Guess who's in charge of the worms?
And we are researching chicken breeds primarily interested in egg layers that are heat tolerant. I love the Frizzles.
We will purchase 3 which is what they advise instead of the two that i really wanted. Since chickens are very social beings within their own cluck cliques if something happens to one the other two will be ok. I've also learned from Brasilia when Peep was killed by a predator leaving Re-Peep alone and lonely. They've had behavioral issues with Re-Peep ever since the tragedy.
Also this way we all get to name a chicken except The Baby who sincerely does not give a hoot about anything involving nature. If it isn't pink, purple, frilly or involves shopping and looking in the mirror she is not interested.
The Boy has named his prospective chicken Sabrina. The Teenager has named hers, Elliana. I will be having a name-that-chicken contest once the girls arrive. The winner will receive....well...you'll just have to wait and see.
All in all it's been a very good week. I'm off now to finish a two story cardboard three dimensional replica of our house with The Baby. Her homework.
So how was your week?
Sep 11, 2011
I'm a Prepper, he's a Prepper,
She's a Prepper, we're a Prepper,
Wouldn't you like to be a Prepper, too?
(parody of the famous Dr. Pepper jingle)
Finally! A name for my inborn personality disorder!
Since early childhood when we evacuated for hurricanes I packed bedding, food, blankets, lawn chairs and candles while my parents eventually toted a fifth of whiskey and Pierre the Poodle to our wood paneled station wagon.
I'm a PREPPER!I realize more and more that I am no longer a "fringe" personality but becoming "mainstream" as the video below mentions when I meet more and more people who have chickens in the city, gardens in their back yard, and new licenses to carry concealed. (you know who you are)
He's a Prepper!
I admire my neighbor Brasilia's solar shower and lugable loo.
She's a Prepper!I have always seen things differently from most folk who think the government will help in times of crisis. I thought it was the Vietnam Generation I was born into deeply ingrained in my psyche but hurricanes Andrew and Katrina dispelled that myth. My buddy Myrtle lost it all in Katrina as did countless others. It was a bitter lesson learned when the government was no help whatsoever. Instead, her relief came from fellow human beings who practice humanity like my daughter The Artist. She and others helped Myrtle and her elderly husband by supplying the basics of survival.
We're a Prepper!
Go to this link and watch this well done mini documentary.
And when you've seen it I have one question for you after you pull your head out of the sand...
Wouldn't you like to be a Prepper , too?
Sep 9, 2011
The weather here is chilly i.e., 76 degrees this morning and you can smell fall in the air.
Not that we have fall in Florida but I think I can smell it in Maine or something.
Yesterday after getting The Baby down for a nap after school, inspired by the temperatures below 95 (with a heat index of 110), I weeded one of the front garden beds. When I stuck my left hand in to the beach sunflowers something bit me.
YEOW! Blood everywhere. Piece of brown glass.
Dang dump mulch.
I am just recovering from a knife slice on my right hand and that has given given me some discomfort. I am not a wimp but finger cuts hurt like the dickens because of the touchy feely nerve endings. And bleed like crazy.
Plus I don't have a dishwasher and my hands are submerged constantly so healing time is generally delayed. I'm on my third pair of Playtex Gloves as the latex fingers keep getting sliced.
I can't imagine why.
Last night, cleaning up after dinner i threw something away and in doing so cut the tip of my finger off on a broken Corning Ware bowl in the garbage can.
It's times like this when I get kind of wistful about not having a husband around so he could finish the dishes while i stop the spurting.
Maybe this guy who answered my Freecycle add when I offered a bag of fabric scarps including vintage curtains last week might be interested in the position ...
"hey i'm wondering on the sizes of scraps? are they in odd shapes? i'm in need of curtains and ceiling covers. are they very "girly" colors? i am a guy but not opposed to all floral patterns. hope to hear back thanks"
What in the world is a ceiling cover? Maybe I don't want a husband.
On the other hand...no pun intended...I always have my neighbor, Brasilia. You remember her? She's the one who butter-flied my head together when I got swoony with the flu and hit the wall? I called her and she ran right over.
"OOOOOH! You cut your finger tip off!" she remarked excitedly upon seeing the wound.
Brasilia is always up for a good time.
After she got The Baby out of the tub (who by now had turned in to a little black raisin), put her p.j's on and tucked her in she got to my finger.
Or at least what was once my finger.
I'd been marching around the house with my arm in a high salute with a paper towel wrapped around it applying pressure. People ask me if I went to the Emergency Room. What for? So they could tell me I cut the tip of my finger off and charge me $2,000?
Besides Brasilia is great at first aid and she's free. And it was halfway through the bandaging that we noticed which fingers were affected on both hands and began laughing and laughing and laughing. Laughing makes you bleed more but it was so much more fun than an emergency room would have been.
Brasilia finished up the pots in the sink and then went through the house wiping up the trail of blood before she left.
Iris took the above photo and sent it to The Genius so she could e-mail it to me for the blog. Not having a camera makes one seriously creative.
My phone rings....OMG what happened? Are you in pain?
I told her it's just a finger tip. No worries. And no pain. Not after 2 cups of coffee and 1/2 of a Vicodin.
Which...I've decided this morning...is the real breakfast of champions.
Sep 7, 2011
"Hello Mrs. Stewart. This is Johnny at Social Security and I had a few more questions to ask you about The Teenager."
'NOOOOOOOOOOO!" I shrieked out loud.
I couldn't believe I missed the call knowing full well how difficult it would be to reach him. Ever actually try to call your local Social Security office?
Also I couldn't believe he called me Mrs. Stewart. Why you ask?
That's not my name. Not even close.
That has NEVER been my name.
That is not The Teenagers name and never has been.
Now. Did you really need to ask?
On a positive note, however, I'm getting really excited regarding The Boy and his severe dyslexia! Perhaps one day he too can be a Social Security clerk!
R-O-S-E! That spells GRACE!
I immediately phoned back but received a message that the office was closed. Since Johnny (who wanted to ask me a few more questions) didn't leave his extension it was impossible to "just ask for Johnny" when the operator apparently doesn't answer after 3 PM
It was 3:10 PM
I called several times today and finally got through to Johnny who thanked me for calling him back so promptly. If he only knew.
He wanted to know what grade The Teenager completed.
Now there's a can of worms.
How do you assess "grade level completed" with an IQ of 46, a pre-k math level and a reading level of grade 2.9 over all.
We settled on second grade as Johnny was determined to get a grade "completed" out of me.
And then he starts..."Ok so if she is 18 now and she completed the second grade that would be the year 2000?'
Seriously? What don't you understand about an IQ of 46, Johnny?
Kinda reminded me of one my favorite movies, The Princess Bride and Miracle Max...
Valerie: Think it'll work?
We have 120 days to see if we successfully stormed da Social Security castle.
You'll be the first to know.
Sep 2, 2011
Everything is spelled, M-O-O-N to be specific.
"M-O-O-N! That spells parade!"
Today I believe I met his cousin. He's employed by the Social Security office.
Since The Teenager is now 18 I have been going through the process of applying for Social Security disability. When a special needs child is adopted in our state they receive Medicaid until they are 18 other wise no one would adopt from our foster system because no one could afford the outrageous medical bills of anyone with multiple medical complexities. Ok, maybe Rosie O'Donnel could afford the bills but I can't think of anyone else right now.
Because The Teenager has significant medical and cognitive disabilities she should have no problem qualifying for SSI so that she can maintain her insurance which will end any day now.
I didn't collect SSI for the first 18 years so this is a new process and we're starting from scratch.
Beginning 2 weeks ago, I spent 3 hours on line filling out what I thought was a Social Security Disability application. I waited this long because two people told me I could not apply for her until she was 18.
They were wrong. You can apply when the disabled child is 17 1/2.
I wasted 6 months. Help me, Jesus.
No matter how many times I entered her multiple specialists names, addresses, phone numbers, first appointment, last appointment and next appointment the web site told me I was entering a "new specialist name"and that they did not recognize it. This went on at least 3 times. Page after page.
I kept entering and entering and entering...the same names and phone numbers and addresses and first appointment and last appointment and next appointment...over and over and over and over...
Three hours later I was done.
And then this popped up:
"We have received The Teenager's disability report on August 10, 2011 at 6:30 PM Eastern Time. The disability report you just completed is NOT a formal application for benefits, but is part of the claims process...If you have not already done so, contact us immediately."
So I called and made an appointment.
One week after making the appointment I received a verification in the mail addressed to The Teenager's BIRTH NAME. You know the name that hasn't been used since 1996 when the adoption was finalized?
Four days after the first packet arrived I received a second identical packet also addressed to the birth name.
I was NOT happy.Today at the appointment we arrived early and were greeted by a security guard. I couldn't see a receptionist anywhere so I informed him we had an appointment.
"You have an appointment?" He sounded shocked.
This didn't sound promising. I assured him we did.
"Go to the kiosk and press one on the computer," he instructed gruffly.
I obeyed, pressed one, got a receipt and had a seat.
We weren't waiting long when a voice over the intercom told us to report to window 23.
And then the voice on the intercom screeeeeees, "WOULD DUYEN NGUYEN....D-U-Y-E-N N-G-U-Y-E-N please go to window 7? LAST CALL for Duyen Nguyen!"
So much for confidentiality...
Two and a half hours later we were done with the "application." One of the highlights of our appointment was me asking the clerk exactly why he needed to know if I had a life insurance policy when The Teenagers SSI application had nothing to do with my income.
"Well, it won't when she's 18," he says.
"She's 18 now," I reminded him.
"What is the value of your life insurance policy? " He's ignoring me.
"Dead or alive?" I ask.
The Teenager looks up. "This is sooooooo boring." She proceeds to bang her doll on the counter.
Normally I would stop the autistic-like behavior.
But not today. I am thinking these people DESERVE to be driven crazy just like they are driving me crazy.
bang bang bang bang bang bang bang bang bang
bangity bangity bang
The banging stops after 30 minutes."What's this for?" she inquires pointing to the plexiglass barrier separating us from the clerk.
How do you tell your developmentally disabled child the plexiglass is there so clients can't jump through the window and kill the Social Security clerk?
Just then the security guard walks past.
"He has a gun!" she shrieks.
Yes sweetie and I'm pretty sure he uses it at least once a day.
The clerk scans the medical records i brought and hands me a nice neat packet that is all about ME and not the Teenager. I can't help but notice that I am so poor that I may "qualify for Medicaid" myself. I have fantasies of dropping my Blue Cross Blue Shield and sucking the system dry until I notice the 1/2 inch packet, once again, has the WRONG name on it.
The Birth Name.
"This is the wrong name. This is not even legal. I need paperwork reflecting the legal name not the name that no longer exists." I can't believe I am actually calm while I'm telling him this.
He informs me he's not going to reprint it.
"Really? This is not HER NAME."
He tells me he has corrected it in the computer.
"Then why is it still printing out her BIRTH NAME?" I ask.
He takes the paper from me...and yes....this story is 100% true and I have the copy in my possession to prove it...he scratches out the middle name and pens in a name.
He leaves the rest of the incorrect name as is.
"What is this? This isn't legal. Anyone could have written this. What is your name?" I ask calmly.
"My name is Johnny," he replies.
"Johnny. How does anyone know that you, a Social Security office clerk, wrote this name in and not me?" I asked politely.
And then I notice the middle name he has penned in over the wrong middle name...
"Johnny. The Teenagers correct middle name is Grace." I inform him.
"That is Grace,'" he replies.
"But you wrote R-O-S-E."
And then I thought about Tom Cullen from The Stand.
R-O-S-E that spells Grace!
Johnny realized pretty quickly I wasn't going to leave even if the security guard shot me and eventually reprinted the cover sheet with the corrected, legal name.
And now we wait 120 days for our "answer."
Wanna bet the answer is addressed to the wrong name?
Wanna bet The Teenager is denied?
I say Y-E-S.
Because that spells N-O.