CRY ME A RIVER - NO WAIT, I ALREADY HAVE!
Have you ever been at the point where you just are so tired, you do not know how to breathe?
Last Monday - (Can it possibly only be one week past?) - we received Scott's new military ID card. Oh the joy and jubilation! It was actually good until 2032! That is a LONG time! I was so thrilled that my chest hurt! Peace of mind- that is what it was! The knowledge that Scott's enrollment in DEERS was good until 2032. (That is his validation for health care to any non-military reader!)
Why does bad mail always arrive on a Saturday? I mean there is nothing you can do but worry, fret and drive yourself absolutely crazy for 2 LONG days.
Of course you know this is leading to the point that I got some horrific news on Saturday- yesterday. We received a letter - very official - from the USAF - Scott's application for an ID card has been DENIED - TURNED DOWN - FLUSHED!
What??? how could this be? Just 6 days before he had his picture taken and the glossy new card was put in my wallet! Now they have taken it away?
When Ed came in - I bombarded him with the news. By now I was worked up into a total frenzy! I had almost pulled all the hair out of head and screamed to anyone who would listen - which means Scott pretty much got the brunt of my fury!
I pulled the application folder out of the safe and went over it page by page- how could they come to this conclusion?
The letter rambled on about Scott's income (duh?) and how it was over 50% of his needs...(Huge duh!) What income? If they mean his SSI, that should tell them at least 2 things...1. He is poverty level at best ($670 per month) and 2. He is disabled or he would not be getting SSI!
The letter goes on to say if we want to "claim" disability (and can prove it) - reapply!
The letter was signed by good ol' Brad Wing, who referred me to Linda Spielman if I had any questions. uh- yeah! Lots of 'em Brad!
My mind has been racing like Sawyer's MarioKart game - including the bumps and turns. Of course, I cannot call anyone until Monday AM - and then oh boy am I going to call someone. (Ya'all got bail money for me??) These people need to pull their head up where they can see daylight! Let's see if I can clarify for them. Scott is almost 43 - he functions as a 3-5 year old. He was born prematurely, (3lb 2.5 Oz) He has been in special ed until age 22 (clue here- look for it!) He has had an ID card since he was 10 - no breaks in eligibility (boing, boing boing), He receives services from DIDS (formerly Dept of Mental RETARDATION Services. I sent a letter reiterating his disabilites from his doc. YOU WANT MORE BRAD?
How about following my days of dressing him, bathing him, brushing his teeth - yeah and wiping his butt too! Does he qualify yet Brad?
(Take a deep breathe Joanne- Brad does not really care) You know, most days are good, and ironically, I would not change one hair on my boys head-- really! Would I change him and make him "normal" at this point? No. Then I would miss out on My Scottie! I would miss the crooked smile that reminds me so much of my Dad - The hugs and kisses - would a "normal" 42 year old man - interact with his mother like Scott does - probably not. If I had not had all this for 42+ years - my answer would probably be different - of course I would make him totally normal- whatever that is. However, I have never had Normal with Scott BUT... what hurts, what really hurts ... is having to PROVE time after time- my child is nor normal. Please document this for us! It is like rubbing salt in the wound. Over and over again.
So I sit here- banging away at a keyboard. Try to vent some of my frustration out on this machine. I have cried until I can't cry any more. (well maybe a little as I always cry when I get mad and by tomorrow AM I will be fuming again!!)
You would think after 42 years it would not hurt so badly- but it does - so now I have to find a way to "document" my son's disability without sounding bitter and antagonistic. Would you believe the questioners actually get testy if a parent resents having to go over all their child's shortcomings? I will bet you that Brad's flunky "Linda", tells me "Please do not take this personally". Well, Linda - it is personal - and that is the difference between us - to me, the mother of the "different" child - IT IS PERSONAL - AND ALWAYS WILL BE!
Last Monday - (Can it possibly only be one week past?) - we received Scott's new military ID card. Oh the joy and jubilation! It was actually good until 2032! That is a LONG time! I was so thrilled that my chest hurt! Peace of mind- that is what it was! The knowledge that Scott's enrollment in DEERS was good until 2032. (That is his validation for health care to any non-military reader!)
Why does bad mail always arrive on a Saturday? I mean there is nothing you can do but worry, fret and drive yourself absolutely crazy for 2 LONG days.
Of course you know this is leading to the point that I got some horrific news on Saturday- yesterday. We received a letter - very official - from the USAF - Scott's application for an ID card has been DENIED - TURNED DOWN - FLUSHED!
What??? how could this be? Just 6 days before he had his picture taken and the glossy new card was put in my wallet! Now they have taken it away?
When Ed came in - I bombarded him with the news. By now I was worked up into a total frenzy! I had almost pulled all the hair out of head and screamed to anyone who would listen - which means Scott pretty much got the brunt of my fury!
I pulled the application folder out of the safe and went over it page by page- how could they come to this conclusion?
The letter rambled on about Scott's income (duh?) and how it was over 50% of his needs...(Huge duh!) What income? If they mean his SSI, that should tell them at least 2 things...1. He is poverty level at best ($670 per month) and 2. He is disabled or he would not be getting SSI!
The letter goes on to say if we want to "claim" disability (and can prove it) - reapply!
The letter was signed by good ol' Brad Wing, who referred me to Linda Spielman if I had any questions. uh- yeah! Lots of 'em Brad!
My mind has been racing like Sawyer's MarioKart game - including the bumps and turns. Of course, I cannot call anyone until Monday AM - and then oh boy am I going to call someone. (Ya'all got bail money for me??) These people need to pull their head up where they can see daylight! Let's see if I can clarify for them. Scott is almost 43 - he functions as a 3-5 year old. He was born prematurely, (3lb 2.5 Oz) He has been in special ed until age 22 (clue here- look for it!) He has had an ID card since he was 10 - no breaks in eligibility (boing, boing boing), He receives services from DIDS (formerly Dept of Mental RETARDATION Services. I sent a letter reiterating his disabilites from his doc. YOU WANT MORE BRAD?
How about following my days of dressing him, bathing him, brushing his teeth - yeah and wiping his butt too! Does he qualify yet Brad?
(Take a deep breathe Joanne- Brad does not really care) You know, most days are good, and ironically, I would not change one hair on my boys head-- really! Would I change him and make him "normal" at this point? No. Then I would miss out on My Scottie! I would miss the crooked smile that reminds me so much of my Dad - The hugs and kisses - would a "normal" 42 year old man - interact with his mother like Scott does - probably not. If I had not had all this for 42+ years - my answer would probably be different - of course I would make him totally normal- whatever that is. However, I have never had Normal with Scott BUT... what hurts, what really hurts ... is having to PROVE time after time- my child is nor normal. Please document this for us! It is like rubbing salt in the wound. Over and over again.
So I sit here- banging away at a keyboard. Try to vent some of my frustration out on this machine. I have cried until I can't cry any more. (well maybe a little as I always cry when I get mad and by tomorrow AM I will be fuming again!!)
You would think after 42 years it would not hurt so badly- but it does - so now I have to find a way to "document" my son's disability without sounding bitter and antagonistic. Would you believe the questioners actually get testy if a parent resents having to go over all their child's shortcomings? I will bet you that Brad's flunky "Linda", tells me "Please do not take this personally". Well, Linda - it is personal - and that is the difference between us - to me, the mother of the "different" child - IT IS PERSONAL - AND ALWAYS WILL BE!
posted by Joanne | 12:59 PM
2 Comments:
Big hugs. I am relatively new at having a child with a disability. I know that it's relatively good until I have to stop and explain what's "wrong" with him or look at things very closely through an outsider to fill out an IEP or forms of some sort. It makes me relive the diagnosis all over again when normally it doesn't bother me much. It is like salt in an old wound that has been opened. It's nice being able to vent. I hope things work out for you with as little hassle as possible. -- Nancy
Memorial Day 2010- a day to honor our nation's noble warriers. My husband served 21 years- and still fights for the rights of his son.
However, victories still come! Scott has received his ID card! After 3 submissions - phone calls and the support of some fine people at the EFMP at Ft Campbell Ky - DFAS said "Yes!'
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