A Mother in the Bronx and Her Two Autistic Daughters
Stacy and Stephanie Medina are three-year-old twins who live with their mother, Gauris Melo, in a one-bedroom apartment in the Bronx, New York, where Ulysses Stable also lived. Stacy and Stephanie are both autistic and both cannot speak; Stacy also has a serious kidney condition for which she must take steroids daily and has frequent medical appointments. The November 25th New York Times profiles the family as one of its New York Times Neediest Cases Fund in A Little Help for a Mother Raising Autistic Twin Girls.
None of this young mother’s days with her “amores” are easy.
“Today’s a good day. They’re all smiles and laughter.” But, she said, you never know what to expect when they get off that bus. “There are days they will ignore you completely.”
……..[Stacy] is hungry again, as the steroids make her a voracious eater. She is in a corner, stomping and screaming because Petra, the home assistant who helps Ms. Melo with the girls 20 hours a week, removed her meal from the microwave. Stacy had wanted to do it herself.
The girls’ father, Ramon Medina, “visits the girls as much as he can. He used to come by on his two days off each week, but since he lost his job earlier this month,” he “passes by every day.” Stacy’s and Stephanie’s school is two hours away and, until an agency connected with the New York Times Neediest Cases Fund provided a gift of beds and other furniture, the girls and their mother slept in the same bed. Melo receives $1,042 a month in disability—$521 for each girl—and $171 in food stamps, plus $200 a month from the girls’ father. She does not feel that she can “hold a regular job” due to needing to care for both of her daughters, but she also notes that just staying in their one-bedroom apartment “‘all the time’” is difficult.
While I am glad that Stacey, Stephanie, and their mother are sleeping better, it seems that more than new furniture is needed.
13 opinions for A Mother in the Bronx and Her Two Autistic Daughters
Gerard Petillo
Nov 25, 2006 at 9:32 am
“While I am glad that Stacey, Stephanie, and their mother are sleeping better, it seems that more than new furniture is needed.”
I cant agree with you more !!
I thought I had it tough until I read this story.
The fact that they receive disability probably through SSI is a double edged sword. What they receive monetarily from SSI is peanuts. A benefit connected with SSI is medicade. The minute one or both start working to improve their quality of life they will loose SSI and medicade and all medicade has to offer parents of disabled children.
Not to mention that their children are 3 years old and now is the time to be thinking about an independent evaluation from a neurologist or a developmental specialist so they can begin to shape the educational track of these children for the next 18 years.
But how can they think about this while they are stressing over how to spend the $171.00 in food stamps! I only wish something can be done to reduce the quality of life issues so they can better focus on the children.
Gerard Petillo
Parents of ANGELS Bronx N.Y.
http://www.bxangels.org
info@bxangels.org
Kristina Chew, PhD
Nov 25, 2006 at 12:22 pm
Any idea what school they might be attending—maybe AMAC?
Kassiane
Nov 25, 2006 at 5:34 pm
Im curious as to what the “Bronx Angels” have to say about Ulysses Stable. Since, like, he was in their territory.
Yup, Im calling it out in public. Sorry Kristina, but the world, quite frankly, deserves to know, seeing as this one was the last straw internationally….its in newspapers in CHINA.
Susan Lord
Nov 25, 2006 at 6:52 pm
“I’m curious as to what the “Bronx Angels” have to say about Ulysses Stable. Since, like, he was in their territory.”
I you bothered yourself to look, you could easily
have found what I read this afternoon:
“comment number 2 by: Gerard Petillo
November 25th, 2006 at 8:05 am
“Predictably, many people are using this to point out how difficult it is to raise an autistic child, and how more services such as respite are needed by parents”
-I agree with you that this is not a subject to use to lobby for more services. This is an absolute tragedy. I don’t think more services or support could have helped save this child. Child welfare tried to relocate this child and failed. Now they have one less case in their backlog.
“In fact, even autism advocacy organizations have spoken, in response to reporters’ questions about this murder, about how hard it is to raise an autistic.”
-Please keep an open mind. Some times autism advocacy organizations are contacted in these situations by the press and asked questions. The responses are then printed in a different context.
I myself was contacted when this story was just developing and asked specifically what it is like to raise a child with autism. I made my comments. I was assured that I was just commenting on raising a child with autism. When I read the story the following day I was not happy.
FOR THE RECORD- It is difficult raising any child with a disability. It is more difficult raising a disabled child as a single parent. It is NEVER so difficult as to justify terminating the life of your disabled child.
Gerard Petillo
Parents of ANGELS Bronx N.Y.”
Kassiane
Nov 25, 2006 at 8:21 pm
It’s damn difficult to look when you keep having power outages from SNOW because you live in the MIDDLE OF NOWHERE, MONTANA.
Which you’d know, if you looked it up. With your electricity and all.
A public statement and the truth aren’t always the same thing. This guy says his friends told him to do it. bet his friends say “uh-uh, no way dude” if OFFICIALLY asked. So which truth is truth?
If I wanted a pissy mom jumping down my throat there are plenty i could ask, starting with my own, moving through Karen murder McCarron’s personal support group, and so on, not ever getting to a Susan Lord. I’ve been rather busy sorting through the 122 *yes 122* outlets that carried the story INTERNATIONALLY when we had electricity. Rather difficult given that the only Asian language I read at all is Japanese, and only the Hiragana not the Kanji. With Chinese I am so useless and so is babelfish.
So, I ask again, for GERARD HIMSELF to answer. I honestly want to know what HE thinks, not what Susan Lord copied out of a newspaper.
Susan Lord
Nov 25, 2006 at 9:11 pm
“So, I ask again, for GERARD HIMSELF to answer.”
Gerards details are there for you in the first comment on this thread. Why don’t you email him, while your power is on?
“Gerard Petillo
Parents of ANGELS Bronx N.Y.
http://www.bxangels.org
info@bxangels.org”
BTW. I didn’t copy his quote out of a newspaper. It was a comment he made on a blog.
Either way, they were his words on as to “what the “Bronx Angels” have to say about Ulysses Stable.”
Gerard Petillo
Nov 25, 2006 at 9:12 pm
Kassine
On 11-24-06 my responses to questions about raising a child with autism appeared in the NY times in the same story that told us about Ulysses Stable.
Today(11-25-06) in another autism blog http://thiswayoflife.org/blog/?p=79#comment-481 someone commented on autism advocacy groups using this as a platform for more services.
Susan Lord posted my exact words in my response posted on NTs are weird blog today. Those words are NOT from a newspaper. They are mine and I am sticking by them.
Just to repeat, I am not justifying in any way the murder of this autistic boy because “it’s hard raising a disabled child”. I am also NOT empathizing with the father’s alleged act when I say “if he was a single dad he had his hands full”. I’m am a single dad and just stating a fact. I will leave the rest to our system of justice.
Gerard Petillo
Parents of ANGELLS
http://www.bxangels.org
info@bxangels.org
Gerard Petillo
Nov 25, 2006 at 9:33 pm
Kristina
Getting back on topic, I have never heard of the AMAC School before it was mentioned by you in this thread. I just looked it up and learned that it is a school in lower Manhattan that offers an ABA program.
I can’t comment on how this school will work for the 3 year old twin girls in the Bronx. I will leave that to a specialist. Additionally, what the CSE at the NYC board of education will recommend for these girls is a topic for another thread that will probably be a lengthy one
I can’t say enough great things about an aba program run by qualified people for low functioning children like my son. I had my son evaluated by Dr CC McCarton in Manhattan. She prepared an educational model based on the results of a 3 day multidisciplinary evaluation. She recommended among other things an aba based program.
My son attends an aba program in Westchester County at the Devereux Millwood learning center. I have watched my son progress over the years that he has been there. Knowing that he is in an appropriate program and doing well helps me cope with the heartache of his disability.
Gerard Petillo
Parents of ANGELS
http://www.bxangels.org
info@bxangels.org
Kassiane
Nov 25, 2006 at 10:42 pm
*snort*
You need to look around Joel’s site to see what our system of “justice” will do. Or not do.
It’s under “right to autistic existence”.
Check out those slaps on the wrist. Did you know Ulysess was the 5th autistic murder since May?
Yeah.
Thus far NO murder of a person with a disability has gotten the deserved sentence. I’m not getting my hopes up, especially in the lands of AutismWeeps.
Gerard Petillo
Nov 25, 2006 at 11:29 pm
We don’t have any facts here. We are going by what we heard in the media and are in no position to pass judgment with respect to a homicide. We must trust the criminal justice system.
…Unless of course you know a better system?
Kristina Chew, PhD
Nov 26, 2006 at 1:42 am
First, I’m hoping the Medina girls can get more services that would help them, and so their family.
Second, Kassiane, Susan, Gerard, I think we need to keep this kind of discussion or dialogue or debate or whatever you might wish to call it going. Have to keep writing and talking and coming at these issues from different angles and keep them alive in the public’s consciousness……..maybe so a better system, something better, can be created.
Kassiane
Nov 26, 2006 at 2:00 am
With respect to a homicide, technically speaking every day people–including parents like you and autistics like me–get called to pass judgement every day.
It’s called JURY DUTY.
Only in voir dire for some reason they keep the parents, who will be sympathetic to the “plight” of the parent, and ditch the people actually LIVING with same or similar condition, because we know damn good and well it isn’t an act of mercy, it’s an act of selfishness.
And then murderers, and yes, anyone who slice-and-dices their kid is a murderer (as is anyone who suffocates, drowns, toasts, or shoots their kid,…and I think I forgot one for this year…) go free, or get commuted sentences or community service or get to work for autism organizations or B.S. like that (and I am making NONE of this up) because
“oh that poor parent had too much to bear”.
And I am calling BS on that. There are foster care, respite, etc services EVERYWHERE in the US. They are there for a reason. If you want to be a martyr, then you should kill yourself, not your kid. That’s the OLD SCHOOL way of doing it.
Ivan
Dec 31, 2006 at 4:15 pm
Kassiane…………
“f you want to be a martyr, then you should kill yourself, not your kid. That’s the OLD SCHOOL way of doing it.”
AMEN! I couldn’t have said it better myself.
heh
finally some sense………..harsh, but its true. Sensible people can figure out what to do with the child after the “martyr” has done his or her deed, the right way. Like……..giving the child a better chance to thrive.
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