Special Needs…and what that means

One Term, Many Definitions:

“Special Needs” is an umbrella underneath which a staggering array of diagnoses can be wedged. Children with special needs may have mild learning disabilities or profound cognitive impairment; food allergies or terminal illness; developmental delays that catch up quickly or remain entrenched; occasional panic attacks or serious psychiatric problems. The designation is useful for getting needed services, setting appropriate goals, and gaining understanding for a child and stressed family.
Minuses and Pluses:

“Special needs” are commonly defined by what a child can’t do – by milestones unmet, foods banned, activities avoided, experiences denied. These minuses hit families hard, and may make “special needs” seem like a tragic designation. Some parents will always mourn their child’s lost potential, and many conditions become more troubling with time. Other families may find that their child’s challenges make triumphs sweeter, and that weaknesses are often accompanied by amazing strengths.

Different Concerns:

Pick any two families of children with special needs, and they may seem to have little in common. A family dealing with developmental delays will have different concerns than one dealing with chronic illness, which will have different concerns than one dealing with mental illness or learning problems or behavioral challenges.

By Terri Mauro

MemeCASA works with many special needs kids. In fact, after doing a quick run through of the current caseload, we found that 42% of the children we serve have special needs. The criteria was met only by children who would qualify for IEP services for either a medical, mental health/behavioral, or developmental delay diagnoses. It excluded children receiving only counseling to help them deal with the issues that brought their case into care or the numbers would have been quite inflated.

The thing that we really want everyone to know about these kids is simple- they’re still kids. They still play, they still absorb the things they see and hear, and they still need love that is silly and supportive and allows them the most independence for their unique situations. In that vein we loved this meme-

We read an article the other day that humans have been caring for special needs children since prehistoric times, that they too saw the value of people who did not fit into the general norm. Two such proofs were-

  • 4,000 years ago, a young woman from a site on the Arabian peninsula lived to 18. She had a neuromuscular disease, possibly polio, with very thin arms and leg muscles that would have made walking and movement extremely difficult. Debra L. Martin, associate professor of biological anthropology at the University of Nevada, Las Vegas, says that she would have needed “round the clock care.”

Martin also points out that the young woman’s teeth had numerous cavities; she had also lost teeth from abscesses. Noting that her people grew dates, Martin posits that, to keep the young woman happy, she may have been fed “a lot of sticky, gummy dates.

and-

10,000 years ago, Romito 2 lived until he was a teenager; his skeleton shows that he had a form of severe dwarfism that meant his arms were very short. He was therefore unable to live by hunting and gathering among his people, who “would have had to accept” what he could not do.

Read more: http://www.care2.com/causes/ancient-bones-acts-of-kindness-eons-ago.html#ixzz4AFgrtD5L

So know that special needs children not only live but many are able to live wonderful lives and cast light on those around them, despite their challenges.

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Causes of Pediatric Death

From EMSWorld-

“Most shifts in the emergency department are filled with routine complaints like abdominal pain, minor trauma and nonthreatening pediatric illnesses. Occasionally, however, you treat a patient whose presentation sticks in your mind. It is from these cases that I have gained some of the most important knowledge in my career thus far.

On a particularly hot summer day, I had two similar patients who really got me thinking about a certain topic. It was a typical day in the ED. Patients were beginning to arrive in greater numbers, and we were getting busy. As I dove into the growing stack of charts, I was informed by the charge nurse that paramedics were bringing in a child in cardiopulmonary arrest.

According to the paramedic on the radio, they were transporting a two-year-old female who was not breathing and had no pulse. I was told that the child had choked on a grape, and the mother called for help. We quickly set up the resuscitation suite for a child of this age. The friendly banter that usually precedes the arrival of a critical patient is always absent when that patient is a child, and this was no exception: The blanket of silence in the room was particularly uncomfortable.

The child arrived on a stretcher, intubated but cyanotic. The paramedics who were performing CPR looked grim as one of them told me the story. The child had been eating grapes when she began choking. Not knowing what to do, the mother called 9-1-1 for assistance. Apparently, she simply asked for help, then set the phone down to wait by her daughter, missing the opportunity to receive potentially lifesaving instructions from the operator. The paramedics arrived five minutes later to see a frantic mother holding her blue child. No attempts had been made to remove the obstructing grape, so the child had gone without air for more than five minutes. With obvious dismay, the paramedic told me that with one simple push on the abdomen, he was able to pop the grape out from the airway without any difficulty whatsoever—a maneuver we all now wished the child’s mother had known about.

The little girl was deceased, and we could not bring her back. As I told the mother that her daughter was dead, all I could think about was how easily she could have dislodged that grape had she only known about the Heimlich maneuver.

This lack of knowledge and its devastating results stuck in my mind for the rest of the day. Near the end of my shift on the same day, I took care of another patient of the same age. The difference between the two has left an indelible mark on me as an emergency caregiver and has changed the way I think about knowledge.

The second two-year-old girl was brought in by her mother with a chief complaint of “well check.” As I entered the room, I saw a mother with a perfectly healthy-appearing female child in her lap, playing with a small doll. The mother explained that her daughter had choked on a hard candy and then turned blue and limp. The mother then described a perfectly executed Heimlich maneuver, which dislodged the hard candy and resulted in the child’s quick recovery. The mother wanted me to “check out” her daughter to make sure she was OK. The child was fine.

I exited that patient’s room forever changed. The difference between the results of these two little girls is the difference between life and death. I began to think about my own children and how vulnerable they were. That night, I spent time with my wife going over the Heimlich maneuver and other things I thought she should know. Then I began to think about other ways in which children die and become injured, and how these could be prevented. Over the next few weeks, I researched the topic and learned much about the causes of pediatric death and how to prevent and respond to each one.”

To read the full article click here.

From the FRAC

“Higher participation rates in summer food mean more low-income children get the fuel they need to thrive over the summer months,” said FRAC President Jim Weill. “Congress can further this progress in this year’s Child Nutrition Reauthorization law by making strategic and thoughtful investments in the Summer Nutrition Programs that bolster their capacity to serve even more children.”

The Summer Nutrition Programs, which include the Summer Food Service Program and the National School Lunch Program over the summer period, provide free meals at participating summer sites at schools, parks, other public agencies, and nonprofits for children under 18. Not only do children benefit from the free meals, but they also benefit from the enrichment activities that keep them learning and engaged.

Leadership by the U.S. Department of Agriculture (USDA) contributed to this progress. The agency has prioritized summer meal growth by partnering with national organizations to increase the number of sponsors and sites and by providing hands-on assistance to states. As a result, the Summer Nutrition Programs served lunch to 3.2 million children on an average day in July 2014, an increase of more than 215,000, or 7.3 percent, from July 2013.

These gains pave the way for even more progress to be made. If every state had reached the goal of 40 children participating in Summer Nutrition in July 2014 for every 100 receiving free or reduced-price lunch during the 2013-2014 school year, an additional 4.6 million children would have been fed each day, and states would have collected an additional $360 million in child nutrition funding in July alone.”

Here in Boone County we’re lucky to have access to programs like this.

Free Summer Lunch

Piece By Piece, The Fact of Fatherhood

Kelly Clarkson, American Idol alum and mother to two babies, has written and released her song “Piece by Piece” which details her relationship with her father. Kelly co-wrote the song and stated that it has come from a place of acceptance. Her father, Stephen, suspended his relationship with his daughter when she was 6.

Kelly also stated that she didn’t realize the importance of a healthy father/daughter relationship until she had her own daughter and watched her husband lovingly care for her. Kelly now realizes she missed out on something that is a large part of life. However, she has stated that she has not reconnected with her father.

This got us thinking- how many biological fathers on our caseload have anything to do with their children (visits, placement, even letter writing)? We did a quick count. The answer is 43%. Only 43% of the kids we are currently working with have any contact with their biological fathers. Their circumstances are all different- some know who their fathers are and know their fathers aren’t participating in visitation, some fathers are incarcerated and choosing not to correspond with their children, some don’t know or have never met their fathers, and some previously lived with their fathers but are now having no contact with them, some were sexually abused by their fathers who are no longer allowed contact due to bond conditions. These trends are echoed in statistics posted by TheFatherlessGeneration which say, “About 40 percent of children in father-absent homes have not seen their father at all during the past year; 26 percent of absent fathers live in a different state than their children; and 50 percent of children living absent their father have never set foot in their father’s home.”

This is the sad reality of children in the system. The National Fatherhood Initiative states that, “Even after controlling for income, youths in father-absent households still had significantly higher odds of incarceration than those in mother-father families. Youths who never had a father in the household experienced the highest odds,” and “Father involvement in schools is associated with the higher likelihood of a student getting mostly A’s. This was true for fathers in biological parent families, for stepfathers, and for fathers heading single-parent families.”

 

Is Arranged Marriage Child Abuse?

bridal-veil-fascinatorBelieve it or not, CASA has had to ask this question before. While, here in the United States, the knee jerk reaction is Yes! YES! and YES!!! there are many factors to consider. The first of which is the law-

Many don’t know this but several states in the continental US allow for child marriages, so long as the participants have parental consent. In the state of Illinois a 16 year old may marry as long as a guardian consents to the union. In other states, such as Arizona and California, there is no minimum age limit so long as the youth has both parental and judicial consent. In some states there is language written in that, should a young lady fall pregnant, she can get married as young as 16 without parental consent or at the age 14 with it. While we would like to think this would never be necessary or applicable, children in grade school have fallen pregnant. One such case came to light in 2006 when William Edward Ronca, then 26 years old, admitted to impregnating a ten year old. The girl went on to deliver a healthy baby via C section in South Carolina. She placed her child up for adoption.

The second thing to consider is consent. Do you feel a child as young as fourteen can consent to being a spouse? Does the law? To quote directly from the New York Times, “Of course, one person’s “parental consent” can be another’s “parental coercion,” but state laws typically do not call for anyone to investigate whether a child is marrying willingly. Even in the case of a girl’s sobbing openly while her parents sign the application and force her into marriage, the clerk usually has no authority to intervene. In fact, in most states there are no laws that specifically forbid forced marriage.” This article goes on in even more shocking detail as it says, “Nevertheless, the data show that 3,481 children were married in New Jersey between 1995 and 2012. Most were age 16 or 17 and married with parental consent, but 163 were between ages 13 and 15, meaning a judge approved their marriages. Shockingly, 91 percent of the children were married to adults, often at ages or with age differences that could have triggered statutory-rape charges, not a marriage license. Based on my own experience working with forced-marriage victims across the United States, I am sure many of these children had to marry against their will. Forced marriage is a widespread but often ignored problem in the United States. A survey by the Tahirih Justice Center, an NGO that provides services to immigrant women and girls, identified as many as 3,000 known or suspected forced-marriage cases just between 2009 and 2011, many involving girls under age 18. Tactics used against the victims included threats of ostracism, beatings or death.”

This topic has been in the media lately due to one Vaughn Ohlman, the owner of the website LetThemMarry. Since becoming the focus of media scrutiny over his decision to promote a pay for play “marriage retreat” where fathers could get together to marry off their teenage children, Vaughn has taken down the wording on his website. Before his edits he said this about the optimum age for marriage-

Our position is that, for a woman:

1) The ‘youth’ ready for marriage has breasts. A woman who is to be married is one who has breasts; breasts which signal her readiness for marriage, and breasts who promise enjoyment for her husband. (We believe that ‘breasts’ here stand as a symbol for all forms of full secondary sexual characteristics.)

2) The ‘youth’ ready for marriage is ready to bear children. Unlike modern society Scripture sees the woman as a bearer, nurser, and raiser of children. The ‘young woman’ is the woman whose body is physically ready for these things, physically mature enough to handle them without damage.

3) The ‘youth’ ready for marriage is one who is ready for sexual intercourse sexually and emotionally. Her desire is for her husband, and she is ready to rejoice in him physically.

All three of the above points represent, not a certain exact age, but a level of physical and sexual maturity. Not ‘maturity’ as in ‘been there, done that’, nor even a ‘maturity’ as in ‘have been at this level for a long time’, but a point of arrival. But we are certainly in agreement with the commentators that marriage (in order to be timely and to accomplish its purposes) ought to happen before the age of twenty for almost everyone.

As far as consent goes, Mr. Ohlman also addressed that. He stated, “and so, a lack of consent of the individual concerned is a choice of disobedience, a breach of a vow and of a relationship. God has designed the marriage relationship (in particular that of the virgin daughter marrying the virgin son) to be a relationship initiated by the parents, in particular the fathers, of the young couple.”

What is the harm if both parties want to be married? The harm can be counted as both emotional as well as physical damage. In fact, on the 6th of May a young girl, 13, died do to internal injuries resulting from her recent marriage. The UK’s Daily Mail said in their report, “A medical report from al-Thawra hospital said she suffered a tear to her genitals and severe bleeding.” The girl had been traded to an older man, by agreement of their two families, a practice that, “The Yemeni rights group said the girl was married off in an agreement between two men to marry each other’s sisters to avoid having to pay expensive bride-prices.”

If you are wondering what Child Protection can do, the answer is sadly not much. NPR address this when it says, “Moreover, even if they do reach out, child protective services may not be able to do anything, says Casey Swegman, manager for the Tahirih Justice Center’s Forced Marriage Project. Such services “are set up to respond to harm already done,” she explains, “so if the child has not yet been hit or taken out of school, that can mean an investigation won’t even happen.” Imagine a 15-year-old who’s afraid of being forced into a marriage, having the courage to ask for help “and [is] then told that the system can’t help you,” she says.”

One case of two youths marrying, even after Child Protection became involved, is that of Liset and James. She was 12 when she began to see James romantically. He was sixteen. They told their story to the Chicago Tribune as follows, “According to records at the Texas Department of Health, Liset was one of nearly 60 girls in that state who married in 2002 at the tender age of 14–the minimum age in Texas with parental consent. (A handful of other states sanction extremely early marriages with parental consent: In Alabama, South Carolina and Utah, girls can marry at 14; in New Hampshire it’s 13; in Massachusetts and Kansas, 12.) In 2002, state social workers informed the young couple that they would advocate charges of statutory rape against James when he became a legal adult at 18, family members say. Liset’s mother said Texas child protection officials also threatened to take custody of her other children if she didn’t break off her daughter’s underage relationship. In the face of such harsh law-enforcement action, Liset rushed to the altar. She says she and James had planned to marry anyway.”

Liset, who was 17 when the Tribune last checked in with her said, “I want to go back to school,” echoing a universal desire that social workers hear from child wives around the world. “Maybe then I can become a cosmetologist, or maybe an interior designer.”She hopes to re-enroll in the 9th grade this spring, after giving birth to a new baby. This time it is a boy. He will be named James, after his father.”

So is it child abuse? Our answer, after thoughtfully considering all the parts, remains yes. Children just aren’t ready for marriage. Their brains, which have been noted to be in constant rapid development until the age of 25, have other things which need to be focused on. These things involve education, social growth and friendships, as well as creative endeavors. These things are all curtailed by early marriage.