Down Syndrome

A waiter in Houston, Texas, is being celebrated for standing up for a 5-year-old with Down syndrome. During his shift earlier this week at Laurenzo's, a prime rib restaurant, Michael Garcia confronted a customer after he overheard him saying, "Special-needs children need to be special somewhere else."

"My personal feelings took over because that's ignorance in my opinion and I told him 'Sir, I won't be able to serve you,'" Garcia told Fox News.

Read the whole story (Fox News) >>

Have you ever had to take a stand to defend one of your kids?

Image Source: FoxNews

We're excited to bring you a new post from mother and actress Tori Spelling! Every other week, we bring you the best parenting and lifestyle advice from ediTORIal by Tori Spelling, which is Tori's daily blog about everything from food and fashion to parenting and relationships. This week, Tori shares her friend's experience raising a child with Down Syndrome.

Today I am grateful and honored to bring you a second guest blog from my friend Lisa. As you may remember, her son Blake was born with Down Syndrome, so in honor of National Down Syndrome Awareness Month, Lisa has so generously shared the next part of her journey with us. The lessons that she has learned over the past year are not limited to those who might have children with special needs. Everything that Lisa has experienced is something that all of us can relate to, and the deeper understanding of motherhood that she can lay claim to I truly admire. Take it away, Lisa . . .

Related: Hattie Cat's Birthday Cake Bake-Off

Sometimes in life you have to experience things as opposed to relying on words, opinions, or "facts" to get the picture. Growing up, I was always one who had to "learn the hard way" and suffer the consequences of my actions to get the lessons, and I am grateful that this is still the case. A little boy named Blake rocked my world May 13, 2011, when he was born with Down Syndrome (Read our full story here). The last 17 months have literally transformed me as a person and a mother. Not only was I blessed with a baby boy who has a "little something extra" in the chromosome department; I have also become part of an amazing community whose foundation is built on the principals of Support, Inclusion, Respect, and Love. I feel the true key to change is education and information, and in honor of Down Syndrome Awareness Month, I would like to share five things I have learned in the last year about being a mother of a child with Down Syndrome.

• It's All Relative: I naturally found myself playing the comparison game between my son and daughter. I think I naturally felt the urge to compare as I saw/felt no difference between my two children, as I remember Kaleigh doing all the things I witness Blake do. An example of a comparison was teething patterns/time; my daughter got her first teeth at 4 months and Blake at 10 months. At first I could not help making comparisons and have recently realized that it is all relative and incomparable. Each child will reach milestones on their own timeline and do their own thing.
• Great Expectations: If you want to set yourself up to fail, getting caught up in your own expectations is a good way to go. I have had to curb my natural expectations in all situations when it comes to my son's development (and my daughter's, too). I would find myself frustrated or disappointed when he/she did not meet the expectations I had. I guess it was just my natural instinct as a mother (and a human being) to have such expectations for my children. I have learned to take a step back and realize that my expectations are irrelevant to my children's lives, and I need to enjoy them each day, expectations aside.

Keep reading to see the rest of Lisa's reflections on raising her son with Down Syndrome.

Even with a background in Early Intervention (EI), I wonder and worry about my toddler’s skills. He talks a lot, but is he understandable? He’s fearful of other children, but does that mean he’s going to need extra support with social skills? Are his gross motor skills up to par?

While deep down I know my son doesn’t need EI services, if I didn’t know what they were for, I would be among the many parents who wonder whether EI services are right for their child. To help answer that and other common questions about Early Intervention that pop up on Circle of Moms, here's a primer on what they're for, who's eligible, how they're structured, and why they're so important.

1. What are Early Intervention Services?

Early Intervention Services are a system of services for children from birth to age three who have disabilities or developmental delays. The services are provided for and funded under the Individuals with Disabilities Education Act, though every state has the freedom to choose how the services are administered.

Under a provision of the law known as Child Find, states are required to locate and identify as many young children with disabilities as they can. As Circle of Moms member Lindsey T. explains, “They will do an evaluation and let you know how much of a delay [your child] has, and if they think she needs their help.”

2. What makes a child eligible?

In some cases, a child is eligible for services because she was born with a disability that qualifies her for services; in others she was born prematurely enough that she is “shortlisted” for evaluation. For instance, Circle of Moms member Kristi C.’s son "qualified for services based on the fact that he was born under three pounds.”

If your child doesn’t have an identified delay, but isn’t meeting typical milestones, it’s time to talk to your pediatrician about setting up an evaluation.

Another member, Barbara M., reminds parents to think about more than just physical milestones. She recommends early intervention to moms with "any concerns in regard to their child's development — gross [motor], fine motor, weight concerns, social interactions, speech [or] behavioral concerns.”

3. What's an Individualized Family Service Plan?

Early Intervention services are unique in that they work with the whole family to create a program that helps improve a child’s skills in five basic areas:

• Intellectual development
• Physical development
• Communication
• Social and emotional development
• Adaptive development

Not all children need assistance in all areas, which is why an Individualized Family Service Plan will be developed to outline your child and family’s specific needs.

Early Intervention Services provide families with the skills to work with their own children. In fact, mom Michelle B. says, “the most important effect of EI is actually what you learn.”

Working with a therapist once or a few times a week only goes so far. As another mom, Sofia L., points out, learning activities to work on at home with your child is the real benefit of EI Services.

4. Why is Early Intervention so important?

Intervening early is important for a number of reasons. Chris M.'s child has developmental delays and is working with a Special Education teacher. She points out that “[EI] is a wonderful way to address issues early, and possibly take care of them before school expectations pile up."

Not only does intervening during the toddler and preschool years provide professional assistance before school starts, but also during a time when the potential to learn skills and adaptations is high.

As many moms attest, it also helps families find the skills and resources to adapt to a child’s disability. Having that assistance early on can reduce the stress on both parents and siblings of children with disabilities.

Image Source: quinn.anya via Flickr

The views expressed in this article are those of the author and do not necessarily represent the views of, and should not be attributed to, POPSUGAR.

We're excited to bring you a new post from mother and actress Tori Spelling! Every other week, we're bringing you the best parenting and lifestyle advice from ediTORIal by Tori Spelling, which is Tori's daily blog about everything from food and fashion to parenting and relationships. This week, Tori shares a letter from her friend about her baby who was diagnosed with Down syndrome.

Today, I’m sharing a guest blog by my friend Lisa, owner of Evolution Vintage. Her son was born with Down syndrome, and in honor of World Down Syndrome Day on March 21st, she has offered to share her story. When I read this, I had tears streaming down my face — not because I felt sorry for Lisa’s son Blake, but because she inspires me as a mom. I hope you are as touched by her story as I was:

Down But Not Out
By Lisa Graystone

Friday the 13th turned out to be the luckiest day of my life . . . in hindsight. I gave birth for the second time to my son Blake under very traumatic circumstances. He was born blue, lifeless and his first sounds resembled a watery gurgle, not a cry. His birth was fast and as a result he had lungs full of water and had the umbilical cord wrapped around his neck twice. I was unable to hold him before they rushed him to the special care nursery for respiratory therapy and monitoring. We spent six days in the hospital. During this time, due to the shape of his eyes, the doctors suspected Blake had Trisomy 21; also known as Down Syndrome (DS). He fought to live and to be here, only now to be faced with a prospective hurdle he would continue to jump for the rest of his life. The postpartum hormones were swirling as I sat down the hall from my new son who was fighting for his life; quietly smelling the receiving blanket from his NICU nest and pumping my breasts alone in tears. Nine agonizing days later, the test results confirmed the doctor’s suspicions. The joy and relief that my son was alive was immediately shrouded in darkness, sadness, despair and shock. I am under 35 and was not given the option of amniocenteses (the test that can conclusively tell you if your baby has DS). The blood test that was available I opted not to do because of the high false positive rate and the fact that there were no "risk factors" — my first child was healthy and my ultrasounds were normal and we were reassured that everything was "fine." I was surrounded by fear and unknowns, questions with no answers and a baby boy to care for.

Related: Children With Swag

I have no time to be on the "why me" program being the ambitious mompreneur that I am. I had to force myself to say: "WHY NOT" and bring it on to my already full plate. There seemed to be no other alternative than to take it head on and realize that the only thing I can control is my attitude, approach and perspective. I feel very lucky to have been given this boy and with him the opportunity for personal growth, education and evolution.

I introduced Blake to my family and friends (many who live 3,000 miles away in Canada) via this letter written from his perspective:

Keep reading to see Blake's letter and for more facts about Down Syndrome.

• What happens when a child with Down Syndrome models for Target — Jezebel
• Keri Russell welcomes a baby girl! — Celebrity Baby Blog
• Who's to blame for a student's death from a peanut allergy at school? — The Stir
• Rosie Pope is having a baby girl! — Celebrity Baby Scoop
• New hope for autism prevention — FitPregnancy
• 6 simple ways to curb the mess — Parenting
• Why dads-to-be go a little crazy — The Bump
• Do mom battles lead to postpartum depression? — Momformation
• How to blend computer time with family time – Tecca.com

Traveling with any kid is challenging. Add special behavioral needs to the mix, and getting from point A to point B can be more like navigating a mine field than an airport or the open road. When you leave home and its reassuringly predictable routine, whether you have a special needs kid or just one who gets antsy on the road, how do you prepare yourself and your child for the surprises of travel?

Circle of Moms member Kristin poses this very question in the Traveling With Children community: "Has anyone here traveled with a child who has behavioral issues caused by their special needs?" she asks.

According to Alison E., talking to the airline ahead of time is a must. Her son has behavioral issues and severe anxiety. She contacts the airlines well ahead of the scheduled departure day to request advice on how to accommodate his needs, and she shares that, "Some airlines allow you to bypass the lines."

She also tries to stay flexibile and thick skinned. "It is always nerve-wracking as you never know if he will act up. But just be prepared for the worst," she advises. Also: "Most importantly, don't worry about what anyone else says about your child because they don't know the situation and they have not walked a mile in your shoes."

Nicole S. has taken her son, who has ADHD (Attention Deficit Hyperactivity Disorder) to Uganda twice to accompany her on volunteer work. Getting there requires two days of flying and several layovers. She recommends taking a highly proactive approach with the people you encounter along the way.

"I was extra friendly to the people around me and apologized if things got tough for awhile. They were usually understanding and compassionate seeing (my) efforts," she posts.

She also stocks up on games for her son's portable system and brings out a new game to distract him whenever he becomes agitated. She packs lots of snacks and selects seats near the bathroom in the back of the plane in an effort to minimize any disturbance to other passengers. And last, she always brings melatonin to help her son fall asleep.

Shannon F., whose daughter has ADHD, also stockpiles distractions for long road trips: "The only way to keep her from not having a fit is to have something to do." Her arsenal includes a portable DVD player and loads of coloring books.

Angee S., a travel agent who is also a mom to an eight-year-old autistic son, recommends preparing your special needs child for travel by talking to him about the specific logistics of the trip in advance. She enlists the help of a training program called Social Stories, which is specificially targeted for children and adults on the autism spectrum.

"I read him Social Stories and books about flying so that he knows what to expect," she shares.

(Social Stories was invented by Carol Gray, founder of The Gray Center for Social Learning and Understanding in Grand Rapids, Mich. They are short stories depicting a particular social situation with the aim of teaching autistic children and adults the appropriate social behaviors and responses.)

Angee S. also purchases some "surprise" items and wraps them just for the trip. Whenever she needs to re-direct her son's attention from something that's bothering him, she doles out a surprise for him to unwrap.

Her other tactics include movies and strategic seating: "I also make sure he has a good stash of movies to choose from," she states, adding that "Sitting next to the window is a must, as he can watch the world go by, and I am a buffer to the rest of the plane."

Sarah D. recently took her three-year-old son with PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified) on his first flight. She read articles ahead of time, took her son to the airport before the day of their scheduled departure for a dry run (as far as the security gate), and arrived on the day of her family's flight in plenty of time to not be rushed through the process. "A little preparation goes a long way," she states.

From traveling with my own special needs son (13-year-old, Ian, has Asperger's), I would agree with all these moms that anticipating your child's needs goes a long way toward avoiding behavioral meltdowns. I have Ian select whatever entertainment items he wants to bring along in his carry-on backpack. I also make sure I have a credit card handy before getting seated so that I can rent a digital player for movies or television shows. And I try to just go with the flow: when, in spite of many reassurances, he remains anxious about whether our plane's on time, I encourage him to go to the gate agent to inquire directly. I take note of any food vendors en route from the security check point to the gate, since trying the airport's offerings shifts his focus away from all the boring, anxiety-provoking waiting involved in air travel. Yes, I admit it: when all else fails, distract them with munchies.

Image Source: Paul Schultz via Flickr/Creative Commons

The views expressed in this article are those of the author and do not necessarily represent the views of, and should not be attributed to, POPSUGAR.

The fight to secure financial benefits from the government for a disabled minor child can be a long, grueling and emotional battle. "They ask for so much information that a lot of people give up," writes Linda G. in the Mothers of Special Needs Children community, referring to government programs that require what seems like endless documentation. Yet for those who persist, success provides desperately needed dollars.

Here is some heart-felt advice from Circle of Moms members who've been through the experience of obtaining benefits for a disabled minor.

"Social Security nearly 100 percent of the time will deny any application the first time," posts Amy L. in the Mothers of Special Needs Children community. "My daughter's disease has a 100 percent approval rate, but they still denied it initially. I had to appeal twice."

Her advice: Keep appealing. Be stubborn. Don't give up.

"Show them you are serious. Keep them up to date with changes, doctor's appointments, etc. Request a social worker assists you with appeals if necessary," Amy L. advises.

Perseverance and a little string-pulling is what Mandy C. suggests.

"No matter how many times they deny, you keep appealing it. Get your physician and therapists involved," she writes.

Becky S. encourages taking the fight for benefits one step further: "Go get a lawyer for Social Security benefits," she advises. "They can get you benefits your child needs. They get results faster than you can get on your own."

And mom of TEN Linda G. suggests making the fight an even more personal endeavor by providing case workers with an up-close encounter with your child.

"Bring your child to your appeal so they can see for themselves what you have to deal with," Linda G. posts. "We did. That's when we got approved."

Frustratingly enough, getting approval for financial assistance for a disabled minor child isn't a reality for many of the families struggling to meet the monetary demands of raising a child with special challenges. This is the case for Sabrina R.

"Disability denied my disabled son benefits," she writes in the Mothers of Special Needs Children community. "Why is this even happening?" She explains that the denial was due to financial reasons. "Apparently you have to have an income no greater than $938 a month to qualify. Are you kidding me? This money is not for us. It's for him."

Unfortunately, government programs do not take into account the extra financial burden having a child with a disability can place on a family. Strict income-based guidelines are in force under federal policies. These income guidelines are not solely based on the child's income. Until the age of 18. parent's income counts as well in determining financial need.

"We consider your child's income and resources. We also consider the income and resources of family members living in the child's household," is the explanation given in the electronic book Benefits For Children With Disabilities published on the federal Social Security Administration website.

While the federal government sets basic family income guidelines, various states amend these to better reflect local economic conditions. Each state is different. The best way to find out the what the income guidelines are where you live is to check with your local Social Security office.

Should your family's income fall within guidelines, you still must prove your child's disability. "That is the key," states Florida mom Tara P. "To show that he (or she) is disabled compared to his (or her) peers and how it impacts him (or her)."

A big step toward getting an approval is to have disability-demonstrating documentation at the ready when first applying for benefits. "Be prepared to have stuff from your doctor with the diagnosis on it, stuff from psychologists, and stuff from school, like an IEP (Individual Education Plan) that states their disability," suggests Ashley K. in the Autism/Aspergers/PDD Awareness community.

Being prepared with paperwork in hand is what Angela M. did to secure disability payments for her son: "I had a little folder I brought to the appointment with me that contained EVERYTHING given to me from any doctors appointments that proved he had autism, a letter from his neurologist stating it wasn't a temporary diagnosis, and then a financial list of my income and how it was spent (bills, food, diapers, doctor appointments) and when they saw that what I needed was more than what I made, my son was approved," she shares. "You can't rely on the doctors to have and or send all the needed information, so it's good to keep your own records of your child's medical history handy for reason like this."

Have you faced a battle for benefits? What did you do to win it?

The views expressed in this article are those of the author and do not necessarily represent the views of, and should not be attributed to, POPSUGAR.

The guilt.

The shame.

The loneliness.

The exhaustion.

They are often the constant companions of mothers raising children with special needs.

“I feel like a horrible mother because I can’t take my child’s behavior anymore,” writes Zenovia K. in the Children with ADHD/ADD community. Her 12-year-old daughter has both attention deficit hyperactivity and oppositional defiant disorders. It\'s a tough cognitive combination that sometimes causes her daughter to physically and verbally assault her.

“I feel so alone,” Zenovia posts.

Yet she isn’t.

At least not according to numbers reported by the Centers for Disease Control and Prevention.

• 13 percent of American children have a developmental disability ranging from a mild speech or language impairment to a serious developmental or intellectual diagnosis such as cerebral palsy or autism.
• 4.5 million school age children have ADHD
• 1 in 110 children have an autism spectrum disorder
• 10 percent of children have anxiety disorder

“The last few days I seem to feel like I’m failing as a mother,” writes Summer P. in the Mothers of Special Needs Children community.

Her three-year-old son has a global development delay, mild cerebral palsy, and a genetic disorder caused by a chromosome deletion. His vocabulary is limited. She’s having difficulty getting him to understand the concept of danger.

“I always felt like I was in control and dealing with everything the best I could, but in the last few days I’m feeling like I’m just failing,” Summer posts. “Major guilt and feelings of failure happening in our house.”

In just two short paragraphs, Summer used the word “failure” three times to describe her efforts as a mom.

While feelings of failure are real and valid emotions, a mom named Holly O. points out that they don’t say much about how well a parent is actually handling the special challenge of raising of a special needs child. As she puts it, “While it is easier said than done, throw that guilt and failure right out the window. You are a good, loving, caring mom of a very complex little boy.\"

“Yes, there are times when you feel you are failing them but you are not,” writes Brenda H.

“You are doing the best you can with a difficult child,” adds Jane S.

Hearing encouraging words from other mothers who are walking the same path can be exactly the help a discouraged mom needs most.

Case in point: Christi T. posted about her feeling of failure in the Autism/Asperger’s/PPD Awareness community not long after her son was first diagnosed. She didn\'t realize he was behind developmentally initially, and when the diagnosis finally came, people in her life questioned her skills as a mother, blaming her for her son’s diagnosis.

“When I tell them, they laugh and say, oh, he will grow out of it,” she writes. “They ask, how old are you, and when I tell them my age (I am soon to be 22), I get oh, it’s just because you are a young mom and don’t know what you are doing. It frustrates me so much and makes me feel like a complete failure.”

Christi changed her tune after a few fellow mothers commented on her thread.

“I guess I just kinda needed a pep talk,” she posted. “Thank you for all of the support, it really is comforting to know I am not the only mom out there that feels this way.”

The views expressed in this article are those of the author and do not necessarily represent the views of, and should not be attributed to, POPSUGAR.

Figuring out your kid's behavior is tough enough when they are "normal." Add in the challenges that plague kids on the autism spectrum, such as cognitive difficulties, sensory limitations and the inability to pick up on social cues, and it's downright baffling.

Is my child going off the deep end because of his or her disability-related challenges or is my child simply misbehaving? It's a question the parent of a special needs child asks themselves numerous time each day. Unfortunately, the immediacy of these situations prevents us from consulting with a professional on each go around, and we have to learn to make our own judgments, in the moment.

It helps, says mom of two Carrie R., to have a good grasp on your child's diagnosis and his associated challenges: "It can be hard to decide, but the more you read about autism, the more you will recognize common behaviors (that) are part of the diagnosis and should not be punished. It's a fine line."

The Cookie Incident

Here's a scene to ponder: You're at the local grocery store where every aisle is full of people you know. Your mildly autistic kid is in full meltdown mode. There is yelling, kicking and crying all because the bakery isn't giving out free sample cookies today.

"But they always have cookies," laments your child in a shrieking voice that people can hear at least five aisles over. "It's not fair. It's not fair. I want the cookie. Why don't they have cookies today? Mom, make them have cookies!"

Tears stream down the face of this precious, confused, and out-of-control child. His earliest memory of this grocery store involves getting that cookie. It has always been this way. He cannot process this experience with a no-cookie plot.

Been there. Done that. And had to leave the store. I am certain some of the other shoppers that day thought my son to be a spoiled brat.

That was several years ago, when my understanding of my son's needs was truly just developing. Yet even then I knew that the fact that things weren't "the same" was what pushed him over the edge. He was six. He had not yet learned the coping skills he now has.

Understanding That Behavior Carries Messages

"Know and understand what behaviors may be triggered or linked to the autism," writes Lorraine S. in a post about deciding what to punish. "These behaviors are generally messages the child is trying to tell you."

That was the story when Heather B. was wrestling with her son's picky clothing habits. There was an underlying reason, but it took her a while to figure it out, and in the meantime, they argued daily about his desire to wear his clothing backwards. After a while, she decided the battle wasn't worth the effort. While it wasn't socially appropriate to wear shirts backwards, "it wasn't hurting him or anybody else." And eventually, she learned, "it was due to the tags," which rubbed against his skin and irritated him, a common problem for kids with sensory issues. As soon as she bought "tagless" clothes, her son started putting his shirts on the right way more often than not.

Learning Over Time

"The intricacies of public behavior and interpersonal relationships are a lot to grasp even for a child with no barriers to learning," writes Jean G. "Be patient and kind and firm about your expectations."

That's a lesson repeated regularly in my own home.

After leaving the grocery store on the day of the infamous cookie incident, we discussed social norms around store samples. I had to explain that giving out free cookies is a choice the bakery manager makes and that we simply cannot expect it each time we go to the store. My son talked about this for several days. It would have driven me nuts if I hadn't realized that this was his way of processing a new piece of information and ultimately, accepting it as reality.

Fortunately, it didn't take seven years for this lesson to be internalized. Now 13 years old, my son is long past expecting the free cookie. But it remains his favorite part of grocery shopping (with the actual leaving of the store coming in at a close second). He still makes a beeline for the bakery once we get past the front door. He expresses disappointment when the cookie isn't available. But he hasn't thrown a tantrum over it since that fateful day.

As the mother of an autistic child, I've learned to follow my instincts regarding the classification of his behaviors. When he's simply misbehaving, I take away his favorite video game for a set period of time. When he's struggling with a sensory issue, I take the time to work through the issue, try not to pull out any of my own hair, and attempt to teach him how to cope. It isn't always a very pretty scene and I am convinced some people around me don't get it. Oh, well.

It's advice echoed by Jean G. in a discussion about how to identify behavior that's truly "naughty" from behavior that carries messages tied to the child's diagnosis.

"Trust yourself to know the difference," she writes.

Image Source: mdanys via Flickr/Creative Commons

The views expressed in this article are those of the author and do not necessarily represent the views of, and should not be attributed to, POPSUGAR.