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Link: Raising a Child With a Developmental Disorder — Understand the Signs and Know Your Resources

Raising a Child With a Developmental Disorder — Understand the Signs and Know Your Resources

Katherine Schreiber

Mon, March 13, 2023 at 6:34 AM EDT·7 min read

 

 

Jennifer Shapiro* had a feeling something wasn’t quite right with her infant son, Timothy. When she looked closely at him, his eyes rarely focused on hers. When she smiled at him, he seemed in a daze, never mirroring the gesture or the joy in her eyes. Timothy was Jennifer’s first child, and she was unsure whether her gut-level concerns — why does something just feel off? — were warranted. With the help of her pediatrician, Jennifer had Timothy evaluated by a team of early childhood experts, who discovered he was exhibiting a cognitive and social-emotional delay. Two years later, he was reevaluated and diagnosed with autism spectrum disorder. These were hard truths to swallow, but identifying them early was key, as it allowed Timothy to receive important treatments at a crucial developmental stage — treatments that would substantially improve his performance at school and his interactions with his peers.

According to the Centers for Disease Control and Prevention, approximately one out of six children in the US is diagnosed with a developmental delay or developmental disability. These are defined as cognitive, social, emotional, or physical challenges prior to or after age three, respectively. Not all delays warrant a diagnosis. However, when left unaddressed, these delays may set a child up for increased challenges as they grow older.

Identifying a Problem

Discerning whether your child or grandchild has a delay or is just taking longer to reach a milestone is tricky. But several red flags during their first years of life can be telling. You probably have grounds to be concerned “if your infant isn’t able to track objects with his eyes; hold her head up consistently when placed on her tummy; and isn’t babbling, cooing or beginning to say words by age 1,” explains Laurie Zelinger, Ph.D., a board-certified school psychologist and author of Please Explain “Terrorism” to Me! Not smiling by six months of age, resisting or reacting strongly to being soothed, and not showing interest in others or their surroundings are other signs that an infant may have a developmental delay or be at risk for a disability later in life.

Knowing the Signs

By age two, if your child or grandchild is not pointing to things she wants, cannot stack blocks, or is struggling to form basic sentences (like, “want more juice”) and follow simple instructions (think: “Bring Mommy the ball”) they could be experiencing a cognitive delay, Zelinger adds. Equally indicative is if a child cannot engage in joint attention — looking to where a caregiver is looking or looking to and from a caregiver and a toy while playing. Once age three rolls around, difficulties in walking, running, and feeding become reasons to worry, says Robert Goldman, Psy.D, J.D., chief psychologist and co-CEO of TLC Virtual Resiliency. So does avoiding eye contact, being disinterested in peers, or performing “stereotyped” behaviors (such as hand flapping, swaying, spinning or rocking) at any age.

Hypersensitivity to touch or sound and difficulties sucking, swallowing, or breathing and extreme pickiness once solid foods become introduced can also be warning signs of a delay
or disability, says Ari Yares, Ph.D., a nationally certified school psychologist in Washington, D.C. If you notice any of these signs, don’t wait too long to contact your pediatrician, Goldman advises. Your doctor can screen your child for delays or disabilities and refer you to an early-intervention or special-education program that, per the Individuals with Disabilities Education Act (IDEA), must offer free evaluations and services for qualifying families. Each state also has Parent Training and Information Centers (PTIs). These provide parents with support and education related to disabilities as well as guidance on obtaining services. Do an internet search for your local PTI to get started.

Getting Help

Research shows that many evidence-based treatments can help address developmental disorders and delays. Speech therapy helps children produce, articulate, and better comprehend language — and can help with feeding issues, like chewing and swallowing. Physical and occupational therapy address gross and fine motor skills. And behavior therapies help reinforce desired behaviors (sharing, sitting still and making eye contact) and reduce troubling ones (biting or hitting).

While most developmental disorders cannot be entirely resolved through treatment, addressing them early can reduce just how much of an impairment individuals may experience throughout their lives. It also improves their ability to function and be more independent at home, in school, at work and in social settings. Ideally, children should start treatment before beginning school. “Early intervention is especially important during children’s first five years of life, when their brains are rapidly developing new connections and are at their most malleable,” says Yares. “The data shows that getting kids support by preschool age or sooner has an impact on their learning and outcomes later in life.”

Children diagnosed with autism spectrum disorder (ASD) can especially gain from early intervention. Applied behavior analysis (ABA) is the most common treatment for ASD. It entails planning and assessment of goals. These range from basic communication skills (e.g., asking for a desired item) to emotion regulation (counting to 10 when angry instead of throwing
or breaking objects). ABA therapists reward desired behaviors and ignore undesired ones. “Social-skills training and providing opportunities for children to engage with peers who don’t have a diagnosis of autism have also been shown to help children with autism learn to model appropriate social behavior,” adds Goldman.

Common Autism Myths

Autism spectrum disorder (ASD) refers to a range of impairments in cognitive, behavioral, communication and social-interaction abilities. Approximately one in every 44 children in the US meets the criteria for autism. Though awareness about autism has increased in recent years, there are still many common misconceptions about the disorder. Here are a few of the biggest that advocates and professionals are working hard to dispel.

Myth #1: Vaccines can cause autism.

Numerous studies have disproved the false link between vaccines and autism, popularized by a now discredited doctor in the late 1990s. Put simply: There is no connection between getting your child vaccinated and an increased risk of autism. And not vaccinating your child puts her at a much greater risk of getting seriously ill. This is one reason why there has been a resurgence of infectious diseases, such as mumps and whooping cough, throughout much of the US.

Myth #2: Autism looks the same in every case.

“Autism spectrum disorder is a complex collection of symptoms, and not every child exhibits every one,” explains Yares. “Children may receive a diagnosis range from high-functioning to low-functioning.” Some may be incredibly gifted in a specific area. Approximately one in every 10 cases of autism exhibits “savantism” — yet struggle to express empathy and connect with peers. Others may experience severe delays in learning, communication, emotion-regulation and self-help skills.

Myth #3: People with autism don't feel empathy.

Autism itself is not a barrier to empathy. Rather, a condition called alexithymia — which is more common among individuals with autistic spectrum disorder — can make understanding and identifying emotions difficult. About half of all individuals with autism meet the criteria for alexithymia.

Where to Get Help

The following websites and organizations provide a wealth of knowledge and guidance for parents concerned about potential delays or disabilities.

A version of this article appeared in our partner magazine The Science of Raising Happy Kids.

* Names have been changed for privacy.

Raising a Child With a Developmental Disorder — Understand the Signs and Know Your Resources
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https://www.yahoo.com/lifestyle/raising-child-developmental-disorder-understand-103432627.html ?
#ASD #autismawareness #myths #earlyyears #AutismAcceptance #earlywarningsforall #parentingtips

Intellectual Disability No Barrier For Mom Raising Gifted Daughter

Excerpt from: Disability Scoop (click for full article)

 

Fifteen-year-old Myra Brown is a typical, bright teen who has her sights set on attending the University of Cambridge in England. Her mother just so happens to have intellectual disability.

Myra and her mom, Bonnie Brown, a single parent who works at a Philadelphia-area Wendy’s, are no different than many mother-daughter duos, baking cupcakes, reading and watching television together.

But they rely on a handful of social workers who spend several hours each week ensuring that bills are paid and other everyday chores are taken care of. And, when it comes to help with homework, Myra knows to turn to others for assistance.

Myra says it may take her mom longer to understand directions, for example, but she’s deeply protective of the woman who raised her.

“My mom does everything that a regular mom does, so I never thought of her as different, and I don’t want other people to,” Myra told ABC News.

Folic Acid For Pregnant Mothers Cuts Kids' Autism Risk

Excerpt from: NPR (click for full article)

 

A common vitamin supplement appears to dramatically reduce a woman's risk of having a child with autism.

A study of more than 85,000 women in Norway found that those who started taking folic acid before getting pregnant were about 40 percent less likely to have a child who developed the disorder, researchers reported in the Journal of the American Medical Association.

"That's a huge effect," says Ian Lipkin, one of the study's authors and a professor of epidemiology at Columbia University's Mailman School of Public Health.

Autism is Not a Shameful Secret

Excerpt from: Autism Speaks (click for full article)

 

For those of you who don't know me, I'm one of the original cast members of Bravo's hit reality television series The Real Housewives of New Jersey. I signed on to this show back in 2008 without taking into consideration how much my life could change. I never stopped to think that there would be a greater purpose to it. You see, my 3-year-old son, Nicholas, has autism. We kept it under wraps until we could figure out what was wrong, and what we were going to do about it, but that time has come.

Honestly, I'm glad it's out there. I don't think people should be afraid or ashamed to share their struggles.
When you open up, you often find that it's the support and generosity of others that can provide the strength and tools you need to get through it. Ever since my husband, Chris, and I went public about our son's diagnosis in People magazine, the support has been overwhelming. Thousands of you have reached out to us with knowledge, resources, and success stories. Our family faces many challenges, just like any other family. Right now, one of our greatest happens to be helping Nicholas recover from autism—because I believe it's possible. Maybe not all children will recover, but many have, and all of us parents with a child on the spectrum should be given that hope.

Parents of Developmentally Disabled Children Upset with the State over Services

Excerpt from: Newsroom Jersey (click for full article)

 

Parents of children with Autism and other developmental disabilities are “up in arms” over the State’s recent removal of their children from the Dept. of Human Services and placing them under the Dept of Children and Families Children's System of Care. According to the parents, the children are now without case managers and a variety of services are now absent. As a result, the parents point out, there is no place to go during a crisis. Furthermore, the parents complain, their telephone calls are not returned.

The parents have circulated a petition in order to lodge a protest against what they believe to be an “abandonment” of their children. According to the petition:

“This petition is for parents of children on the autism spectrum and other developmental disabilities who are registered with DDD, and their supporters, who are demanding that services be distributed equitably and with transparency.

"Parents need to know what services are being delivered and who is receiving them. For families that were previously receiving services but were cut, we need to know the services are no longer available. For families who are registered and have repeatedly been denied services, we deserve an explanation as to why we are not and have not been receiving any services.

Parents with disabilities: In danger of losing their kids

Excerpt from: She Knows Parenting (click for full article)

 

The National Council on Disability reports that nearly one out of every 10 American kids has a parent with a disability. Within the last few months, they released a report that, among other issues, highlighted the disproportionate number of children that are taken away from Mom and Dad due to a parent’s disability.

They found:

“The child welfare system is ill-equipped to support parents with disabilities and their families, resulting in disproportionately high rates of involvement with child welfare services and devastatingly high rates of parents with disabilities losing their parental rights.”

It’s frightening. Many states actually allow for disability to be grounds for termination of parental rights. Read that again — and think about how horrifying that truly sounds.

The report contains stories from parents who have been through the child welfare system — some were successful in their battle to retain their parental rights, and others were not.

Disabled daughter dies just hours after state takes her from mom

Excerpt from: Tampa Bay Times (click for full article)

 

"Not to seem insensitive; I understand the mother is quite frustrated and I understand that she's grieving," Attila said, "but the information that she's providing to the court is moot at this point in time."

Despite Attila's protestations, Freyre had the last word.

"I had her for 14 years — cared (for) and loved her," Freyre said. "And you have her … in prison, in the hospital, without going out in the sun, without being with other people, in prison.

"Then, in (12) hours, you took her down to Miami and she died," Freyre added. "And I want the truth of this to come out. I want justice."

Marie's body remained in storage for nine months while the medical examiner's office completed its autopsy, and Freyre held a memorial with no body.

In the end, Marie's body was cremated in Tampa. Her ashes then were sent to Puerto Rico for a private family funeral.

Miami Herald: A Florida mom’s lonely fight for her disabled son

Excerpt from: Center for Independent Living of South Florida Advocacy Blog (click for full article)

 

Bryan Louzada was one of five medically complex children to die at Florida nursing homes in the last six months of 2010 — and among 130 such children who have died in those homes since January 2006, records show. Though medically fragile children who live with their parents, or in a community setting, also die, state records show they die in far lower numbers.

State health administrators insist that the choices of parents like Tereza Pereira are the guiding force behind their decisions on where sick children live. But interviews and records show Pereira had fought for half Bryan’s life to find a home-like setting for him. And at every turn state health and disability chiefs steered him toward an institution or nursing home.

It is the dirty little secret of Florida’s health and social service system: Though institutional care can be dramatically more expensive than in-home care, state agencies push children toward institutions.

Here’s why: Medicaid, the state and federal insurance program for needy and disabled people, has become the insurer of last resort for virtually all children with catastrophic disabilities. Under federal law, a nursing home or facility bed is an entitlement, and that means Florida health administrators must provide such a bed to any family that asks. Sometimes-far-less-costly in-home nursing services are not an entitlement. Because they can, Florida lawmakers cap spending for such care, resulting in a waiting list of 25,000 for home- and community-based services.

My Story: Susan Reynolds

Excerpt from: Disability Blog (click for full post)

 

My name is Susan Reynolds and I’m an Air Force spouse, a mom, a volunteer, an advocate for military children, and I have a disability.  I have a learning disability and attention deficit hyperactivity disorder (ADHD), which is something that I have struggled with all of my life.

Every day for the last few years I have come to terms again and again with who I am.  I have an amazing husband and son who have helped me on my journey.  These two wonderful men have shown me that my disability is something to identify with, not be ashamed of.  The Military Special Needs Network has helped me find my voice and provided me with direction. 

Is my disability a “label” or an identification? I don’t know, but I’m not choosing. I’m Susan Reynolds and I’m a military spouse and a mom; I am also an adult who has a learning disability and ADHD. I’m really proud of being all of these things!

What does autism LOOK like?

Excerpt from: My Special Needs Network (click for full article)

 

So, the holiday season brings up a lot of strange feelings for parents who have children on the spectrum. we worry about things like how we're going to handle the unsolicited advice from family members, how we are going to keep our children calm and comfortable around a crowd of unfamiliar people, WHAT to tell everybody our kiddo wants for Christmas and MY personal most UNFAVORITE- what to say to the maddening comment, "HHmmm. I don't think it's autism. Maybe it's just ADD or something. He doesn't LOOK autistic to ME."

This is something that has been said to a lot of parents with children falling into the Aspergers/ Pdd-Nos category, and it becomes infuriating.I have had this said to me a few times, and I never know what to say. Here have been a few of my responses:

-(I've thought about whipping out the DSM and reading them the diagnostic criteria.)

-I've said, "yeah, maybe you're right." Just to shut them up.

-Sometimes I start by saying, "He's not autistic the way you're thinking of it- not all autistic people are non-verbal or Rainman."