Parenting is the hardest job in the world. Children will test you in ways that you never thought possible, and no matter how old your kids get, it never gets any easier, or any less confusing. When your child is born with special needs, it doesn't make it any harder, it just gets a lot more complicated, and the number of doctors appointments shoots through the roof. Having two children diagnosed on the autism spectrum, I can completely understand what it must have been like for Colin Farrell, raising a child with an extremely rare genetic disorder: complicated.
Farrell has a 14-year-old son named James. When James was only two years old, he was diagnosed with Angelman syndrome, which is a rare and complex genetic condition that primarily affects the body's nervous system. It has several characteristic symptoms that include: problems with movement and balance, severe developmental delays, intellectual disability, and very severe speech impairment. The child will also show some physical characteristics like a small head, and pretty specific facial features.
When you put that all together, as a parent, your job does get a lot more complicated. On top of just learning how to be a parent, you have to learn how to be a very specific parent. And, if you are someone who lacked patience or empathy in your life before kids, you are about to get slapped in the face with both of those. That is what Colin Farrell has been dealing with as a parent for the last 14 years, and it can't have been easy.
You never truly know how you are going to react when you get news like this about your children, and it is up to you to decide what kind of person you are going to be. Colin took the approach of sheer joy and amazement.
"James is an absolute stud," he told People magazine. "Every day, just breaking down boundaries. He's an amazing boy."
That is what it really breaks down to, watching your child do things you never thought they would be able to do. Each step they take in the right direction lifts what feels like a two-ton weight off of your shoulders.
"Everything he's achieved in his life has come through the presence and the kind of will that is hard work. He's a lot to be inspired by," Colin said. "Things like walking and talking and eating and feeding himself, all those things that so many of us naturally take for granted because they come so easily, to James, they come somewhat harder ... I remember the days when he couldn't watch ten minutes of a film because he couldn't sit still, but now he can."
Like a lot of parents who have children with any number of a variety of developmental or genetic conditions, Colin has become an advocate for Angelman syndrome, appearing at multiple fundraisers and conferences to speak about his experiences raising a child with the condition. He likes to talk with other parents so that they know that they are not alone in this battle, because believe it, a battle is exactly what it is.
"The struggles of a child with special needs can be so brutal that they can tear at the very fabric of your heart, but the love shared and the pure strength and heroism observed is the needle and thread that mends all tears," he told Today reporter Christina Poletto.
As for parents, his advice is pretty simple, and it can be the life-saver that you as a special needs parents requires, "Reach out," he said. "Find support. Only you will ever know truly what it is to feel what you feel, but you will recognize yourself in the struggles and triumphs of others when you hear their stories. You are not alone."
Colin regularly attends the annual gala for Angelman syndrome research, which this past year it was held in Chicago. Colin first spoke publicly about his son's condition in 2012.
"I decided, after consulting with James' mother, model Kim Bordenave, that I wanted to talk publicly about the pride and joy I had in our son," he said. "He has enriched my life, but I don't want to minimize the trials that so many families go through: the fear, consternation, frustration, and pain."
There is no cure for Angelman syndrome, but that doesn't mean that the lives of these children, and their families can't be wonderful experiences. Just because a child is born with a developmental or genetic disorder, doesn't mean that they aren't loving their life, they just happen to see if differently than we do. What is normal for us, might even seem strange to them. That is why Colin speaks so candidly about what he, his son, and his son's mother have gone through for all these years. It is a battle together, one that can never technically be won, but also one that should never be lost.
"We share in the smallest victories "” the first words at age six or seven, being able to feed oneself at nine and getting the seizures under control," said Colin. "When you're the parent of a child with special needs, it's important to feel that you're not alone."
When your child relies on you as a parent, much the same way James would rely on Colin, and his mother, you need to remember that "they need you." They need you to be strong, they need you to be open, they need you to be whatever it is that they need whenever they happen to need it. It can wear you down as a parent and a person, but you never stop loving your child with everything that you are.
"I would humbly say to parents of a child with a recent diagnosis of any disorder that while they may well be experiencing the death of one dream, that dream of having a healthy child, there are a thousand dreams and milestones that are yet to reveal themselves," said Colin.
When you look in your child's eyes, and you see just how they see you, it is all worth it, regardless of the challenges that lay around the next corner.
But Colin Farrell hasn't been the only celeb parent to open up about the lessons their kids have taught them.
Deaf and Born With Down Syndrome, Julie Newmar Reveals What She Learned From Her Son
At 84-years-old, it would be difficult for anyone to stay physically and mentally active, socially aware, and retain a glow of sex appeal everywhere they walk.
Somehow, Julie Newmar has managed to do the impossible and remain close to our hearts throughout the decades, embracing headlines rather than shying away from them.
If you grew up with Newmar, you'll know that she has lived a long life full of incredible, but also troubling, experiences. One thing that has remained the same however, has been her commitment to her family and child.
Newmar began dancing at an early age, showing great promise with classical ballet. She began touring Europe at age 15 with her mother, and was named the prima ballerina for the Los Angeles Opera, which is a pretty big deal even if you aren't a teenager.
She took up dancing with her mother in the Ziegfeld musical ensemble, and her trainer noted that Newmar had "the most beautiful legs in the Follies."
Over the years she would begin to be hand-picked for movie and TV roles. Her most famous was her short-lived role as Catwoman in the 1966 Batman series, where she knocked the socks off of audiences as the feline femme fatale.
Throughout her career, Newmar knew she was being hired because of her body and good looks, but she wanted to be known for her wit and acting skills as well, famously saying "Tell me I'm funny, and it's the greatest compliment in the world."
She never let the fame go to her head though, using her voice to bring attention to causes that would otherwise have gone unheard of.
One of the most notable groups was that of gay and lesbian persons, who were being persecuted by their society in every possible way. Just when it seemed like it couldn't get any worse, the HIV and AIDS crisis hit America.
Over the years, she refused to shy away from a movement that saw many celebrities blacklisted and publicly ostracized for supporting these groups.
Newmar lent her name and status to organizations who were struggling to be heard, and helped raise awareness for the crisis.
"I'd show up and bless things, or do a performance, or just be there," she said. "My brother kept me abreast of the epidemic by informing me what he was doing with his patients who were HIV-positive or had AIDS."
Newmar never backed down from controversy, and in time she found she had a new cause to champion, after the birth of her son and his neurological condition.
At age 42, Newmar met lawyer J. Holt Smith and began her first serious relationship. It eventually led to marriage, after an "enthusiastic" courtship and Newmar finally got to try on one dress she never had.
She lived with him in Texas until their divorce in 1984, and in that time they had a child together. Six months after John Jewl Smith was born the couple had officially split, and the father definitively left the picture.
It would be hard enough to raise a child as a single mother, but Newmar soon realized that not all was well with her son.
John was born with Down syndrome, a genetic disorder that affects children's physical characteristics and mental development. Most adults with Down syndrome will only ever reach an IQ of 50, though despite common belief are quite capable individuals.
After his diagnosis, John later suffered from meningitis which caused permanent hearing loss. He would grow up in a world he didn't understand, unable to hear what was around him, nor say what was wrong.
While to many parents it would seem like a burden, Newmar embraced the situation with her loving enthusiasm and open heart. She has since become a spokesperson for individuals with the neurological condition.
Her experience as a mother has often been called into question by interviewers, but Newmar holds her ground.
"Well you know I have a handicapped son. He has five, six, seven of that thing and the other "” Down syndrome, scoliosis and he's deaf," she explained. "He has inspired me more than anyone because even though he can't hold a conversation with me, he just feels like he sees the best in me, and I am able to extend that out into the world."
Despite bringing her usual confidence and positivity into her family life, not everyone with a child who has Down syndrome finds it as easy as Newmar.
She's often had fans reach out to her asking for advice, and she never holds back her answers.
Saying that parents should never feel that they have an "afflicted" child, Newmar has been outspoken in revealing how children with Down Syndrome have their own gifts.
On Facebook, she often receives messages from distraught parents who don't understand what the diagnosis means for their child.
In one exchange, a father asked what he could do to help his family understand that his child is like any other. Newmar gave him some advice straight from the heart.
"You'd think they would be celebrating instead of being depressed," she said. "Your mother and father should know that Down Syndrome and other handicapped children are angels that have come down here on earth - and that it is you who have the ability to bring greater joy and higher levels of mentorship to your parents."
Newmar spends much of her time with her now 35-year-old son, bringing him with her wherever she travels around the world.
"I can't bear for us to be separated," she says. "Sometimes people say, "˜Oh poor you, it's such a tribulation.' And I go, "˜Wrong!' Johnnie lights up my life."
The lesson that Newmar has taught us is that you are never weakened by embracing your family, indeed it is only they who you can depend on to give you strength.
"People who are "handicapped" really aren't at all. He has taught me unconditional love," she continued. "This is a blessing."
One Criminal Minds star learned a much different lesson from his daughter: how much more needs to be done to help children like her.
Joe Mantegna Reveals The Reality Of Raising An Autistic Child
Joe Mantegna has been a staple on Criminal Minds for over ten years, and in that time, we've grown to love him like a part of our family. He's always looking out for the team, acting as somewhat of a father figure for the entire BAU team.
But unlike many actors who are completely different from their on-screen characters, Mantegna is also a doting father in his everyday life. He and his wife, Arlene, have two daughters together, Gina and Mia. When their daughter Mia was born, they knew immediately she would be different and would have to fight.
Mia was born via emergency C-section because of an infection in the umbilical cord. Her premature birth left Mia weighing just 1lb 5oz.
"She was a very strong little girl," recalled Mantegna. "I saw babies of much higher birth weight do much worse for some reason and not survive."
As they watched their daughter grow, neither Joe nor Arlene noticed anything particularly off. However, while Joe was shooting Godfather III in New York, they had a chance to watch Mia interact with other kids. This is when they realized that something was off. Mia's speech wasn't at the same level as the other kids, and she had problems focusing. Of course, the couple had been warned that since Mia was a premie, she may have lung problems or poor eye sight, but this was different.
It was time to see a neurologist.
Mantegna recalls sitting across from across from the doctor with his wife, and hearing the one sentence that changed his life forever: "I'm pretty sure your daughter has autism."
"I remember it hit my wife and me like a ton of bricks, because, first of all, it was just a word we had heard about," he recalled. Mia was born in the 90s, and there was not as much information on autism back then as there is now. Mantegna likened it to the the scare of polio when he was a kid. "You were afraid to walk in puddles and stuff because nobody even knew how you got it, and there was no cure for it. So it was a little like that."
But after the initial shock, Joe and Arlene chose to move on with the diagnosis and continue living life.
"No parent wants to hear that their child will have to deal with a disability in their life," Mantegna said in an interview. "But then after that initial thing, you get over that and realize we can't change that, but how are we going to deal with it? How are we going to go forward and make her life as best as it can be; make all of our lives as best as possible? So it's not something you wish for, but nobody gets a free ride in life. You play the cards you get in life and move forward."
Because of his busy acting schedule, Mantegna was always on the road. He knew that he needed to be with his family, so they traveled with him while he filmed. His second daughter, Gina, was born three years after Mia, and he didn't want to leave his wife alone with two kids under the age of four. Despite Mia's diagnosis, Mantegna says it never crossed his mind to stop bringing his family to work with him.
"We saw no reason to stop doing [traveling together.] We thought if we were going to face this, let's all face it together. Let's do this as a family," he said.
The Mantegnas obviously had a tough road ahead of them, but it was one teacher in Chicago that really changed their lives, and Mia's.
Joe and Arlene met a teacher whose sister also had autism, and she ended up convincing the couple that Mia would thrive in a regular first-grade class. They just needed to make everyone aware of the situation at hand.
"That made us realize that we don't have to totally buy into [the thinking] that the child has to be in special ed and a protected environment her whole life," Mantegna recalled.
On Mia's first day of school, her teacher walked to the front of the class and made an announcement.
"This is Mia. She's going to be a little different than the rest of you kids. She might start singing to herself, she might walk up to the blackboard, she may talk to herself, she may say some inappropriate things. It doesn't matter. She has autism. And we're all going to help her."
Her message brought Joe and Arlene to tears. They learned to follow that Chicago teacher's advice as Mia advanced in school.
"Just let the kids know," Mantegna said. "Once you include them, once you make them part of the process, the accommodation, they get it. They're very supportive. So you don't put them in a position where they're wondering, What's with this girl? Why is she acting so weird? Passing the information to others makes all the difference."
Mia continued in regular schooling through high school, and when asked what he's most proud of his daughters for, Mantegna says it's Mia's perseverance through school.
"And my daughter Mia, my daughter with autism, I would think when she graduated from high school with honors," Mantegna gushed. "For her to be able to graduate from high school with honors was a big achievement. And she worked very hard at that."
But Mantegna says that despite his daughter's progress, there's still a lot that needs to be done in the grand scheme of things for people with autism.
Mia, now 30 years old, has followed in her dad's footsteps of being in the entertainment industry. She did some acting in high school, but soon realized that her true love was makeup. She took a nine week course at the Mudd School, a professional makeup school. Mia holds the honor of being the first person person with autism to graduate from the program.
Mia has also attended classes to help with her socialization skills. An 11-week program offered through Help Group, an organization that helps young adults with socialization, helped her develop skills that may have been harder for her because of her autism. She can now talk comfortably on the phone, something that was hard for her before the program.
"That's the thing that needs to be worked on with many of these children," her father said. "The ones with less severe autism just have a problem with socializing, breaking the ice, making friends, communicating."
Mia now holds down two jobs. She works on Wednesdays at the family restaurant, Taste Chicago, where she does the bookkeeping. Mia is a whiz with numbers and computers, so it's a perfect fit. She also works for Inclusion Films, which is a group that teaches young adults with disabilities all about the film industry. Inclusion Films is run by Joey Travolta, John Travolta's brother, who used to be a special education teacher.
Mantegna says there needs to be more programs dedicated to adults who have autism, because too often they are just outcast from society.
"These children only stay children for just so many years," he said in an interview. In fact only about an eighth of their life. What do you do with these people for the other seven-eighths of their life? It doesn't go away. When they cured polio, that's fine. But how does it affect the guy who's walking around with braces on his legs?"
Because of his personal connection to autism, Mantegna donates his talents and his money to different organizations who help those like Mia.
"Why shouldn't I? Why wouldn't I?" he asked. "The older you get, the more you realize we are a community. We're talking about the world. We're just this planet spinning around with people on it. Just try to get through it. Do what you can. Be nice to each other and hope for the best. It's not a perfect world. It's not like the movies where they live happily ever after and everything's perfect all the time. But it's okay. You just do the best you can and move forward. That's what we live by, and that's been fine."
Mantegna is so passionate about the cause, he even made sure his show addressed the topic.
Joe Mantegna did an interview with Carly Fleischmann, a blogger who has also been diagnosed with autism.
"My name is Carly Fleischmann and as long as I can remember I've been diagnosed with autism," her About Me section says. "I am not able to talk out of my mouth, however I have found another way to communicate by spelling on my computer."
Fleischmann asked Joe about the hardships of having a daughter with autism, as well as why he pushed to have autism represented on Criminal Minds.
"The hardships, it's that whole thing of two steps forward and one step back," Mantegna told her. "And so those are the rewards and the hardships. In other words the wonderful things are when you make progress, you see progress, joy and happiness and learning and all those things. And the hardship is when you see discomfort, when there's frustration, what you perceive as unhappiness. But there's less and less of that. I think the autism is harder on those of us without it, harder for the people who love the person with autism than it is for the person with autism."
Fleischmann then asked about the episode of Criminal Minds where an autistic boy sees his parents get abducted. The boy has limited speech skills, and displays clear signs of autism.
"I pushed to have an episode that dealt with autism. It wasn't as important to me that the actor really had autism as much as it was that it would be correctly portrayed. And I thought he did a wonderful job."
Even though he may be famous, it's clear that Joe Mantegna's main concern is his family, and we wouldn't have it any other way.
But he's not the only one to face this choice. When this TV star's son was diagnosed with down syndrome, he took on the most important role he'd ever face: being a father.
For John C. McGinley, Acting And Raising A Child With Special Needs Both Come Naturally
Whether you recognize John C. McGinley from hit TV shows like Scrubs or Hollywood movies like Platoon and Office Space, you've definitely seen his famous face before.
Since starting his career on the stage, and in soap operas like Another World, McGinley has established himself as one of Hollywood's busiest stars. The actor has appeared in more than 50 movies, and is still making us laugh on shows like Stan Against Evil.
But if you ask McGinley what his biggest role was, he would probably say being a father.
When McGinley and his wife Lauren Lambert were expecting a child in 1997, they were seriously taken by surprise. For one thing, the couple both thought they would be having a girl, and had only picked out girl names.
Not only did they have a son instead, but doctors quickly told the couple their son had Down Syndrome.
The news came as a shock to McGinley, and his bizarre exchange with the doctor didn't help.
"She asked me if I thought we should tell his mom," he remembered. "I was like, "Yeah, I think we probably should." As if there was any question. Then this guy from the state, who I guess was charged with telling you adoption services are available, came in."
But of course McGinley and his wife didn't put their child up for adoption. The couple named him Max, and they devoted themselves to him during the weeks he spent in the NICU.
"The first couple of months it felt like we had been hit over the head by some kind of cosmic hammer," the actor remembers. "Because there were no indications going in... that Max had any challenges."
McGinley hadn't just been blindsided by his son's diagnosis, he was also completely in the dark about his new son's condition.
""˜What's Down Syndrome anyway?'" he asked the doctor. ""˜What do you mean his 21st chromosome tripled?'"
The challenge of raising a son with Down Syndrome never went away, but McGinley rose to meet them quickly. He's proven himself to be a loving father, and Max managed to repay his kindness by helping McGinley land one of his biggest roles.
Just four years after Max was born, McGinley and Lambert divorced. The actor hadn't stopped taking new projects after his son was born, but suddenly needed to find steady work close to home.
He auditioned for a part on the sitcom Scrubs, as the cranky but lovable Dr. Cox. Not only did McGinley land the part, it went on to be a career-defining role for him, earning the actor awards and accolades.
The stroke of good luck is almost symbolic of McGinley's career after Max was born: not only did his acting talent shine through, it helped him prove that he could be a devoted father and a famous actor.
While McGinley was making time for his family off-screen, he was also dedicating himself to a number of Down Syndrome charities.
McGinley is both a board member of the Global Down Syndrome Foundation and a spokesperson for the organization. But he also raises awareness for the National Down Syndrome Society.
You may remember seeing Dr. Cox wearing a blue and yellow bracelet on Scrubs. That's actually McGinley's own "buddy walk" bracelet, part of a fundraiser for the NDSS that the actor helps to promote.
McGinley has also been an advocate and spokesperson for the Special Olympics, and helped raise awareness for the event's "Spread the Word End the Word" initiative.
He's even won awards for his incredible devotion to the cause, including "Parent of the Year" from ivillage.com and the GDSF's Quincy Jones Exceptional Advocacy Award.
But, above all, McGinley has shown the world that children with Down Syndrome have something to teach us all, and his experiences with Max offer some very sweet lessons.
While McGinley and his wife Laura Lambert went their separate ways when Max was a toddler, the actor quickly re-married to yoga instructor Nichole Kessler.
Max played a big part in the couple's backyard wedding ceremony as their best man, but also had them worried when he disappeared into their home shortly after the ceremony began. He surprised them moments later, by coming back out with the family dog, Harley, by his side.
"The sweetest thing was Max walking back with Haley, then sitting down, thinking, "˜Okay, now I'm done.'" Kessler remembered.
McGinley also mentioned his son in his vows, which is when the waterworks started.
"I start talking about Nichole and Max in the same sentence and I'm gone," the actor told People. "It was the most private thing I've ever done in public."
Jan Barton, one of the couple's close friends, told the magazine "I've never seen a man love his son more."
Max is in his 20s now, but McGinley is still helping him live the best life he can day-to-day. But the actor says their relationship goes both ways, because Max reminds him how to be "present" and focused on what really matters.
Raising his other two daughters - who don't have special needs - has also proven to be challenging, and the differences between his children reminds McGinley that everything is relative.
"[My daughter Billie's] biggest strength is language. She's extraordinarily verbal, and Max's biggest challenge is his lack of spoken language. He can read at a certain level and do arithmetic, but he doesn't form sentences. So parenting Max and parenting Billie represent two polar opposites on the spoken-word spectrum. How we parent them in the same household and find a happy middle has been really interesting and continues to be."
"Max has taught me that people with Down syndrome are more LIKE the rest of us than they are different. They have feelings, talents and dreams just like everyone. And they deserve to be accepted and appreciated for who they are and what they contribute to our communities," the proud dad said.
When this next music legend had not one, but two kids born with cerebral palsy, he knew he had to do more to help not just his own children, but others like them.
Neil Young's Heartbreak And How It Taught Him To "Never Give Up"
When talking about the definitive rock stars of the 1960s and 1970s, you'd be hard-pressed to find an individual person with the profile, body of work, and sheer iconic legacy as Neil Young.
The Canadian singer-songwriter made a name for himself at a young age, spending the '60s and early '70s performing with iconic groups such as Buffalo Springfield, and of course, Crosby, Stills, Nash, and Young.
Not only that, but by the time he'd joined up with David Crosby and company for the latter group, he'd already released two solo albums, and would go on to release even more of them with his band Crazy Horse.
Suffice it to say, the man is a rock and roll icon, and he has the back-catalog to prove it. If that previous list of credentials wasn't enough, just take a look at the songs Young is responsible for: classics like "Cinnamon Girl," "Down By The River," "Helpless," and of course, "Rockin' In The Free World." Seven of his own albums have gone Platinum, and he continues to tour and perform into his 70s.
Of course, no rock star's life is ever straightforward or without drama, and Young is no exception to this. The man has gone through a number of unsuccessful relationships. most recently leaving his wife of 35 years, Pegi Young, in 2014 and moving to Los Angeles his with current girlfriend, actress Daryl Hannah.
On top of that, Young has infamously consumed a number of substances over the years that he's performed, only becoming sober as recently as 2012, and that sort of lifestyle is bound to take its toll on just about any human being (or at least any one that isn't named Ozzy Osbourne).
However, in this particular case, it's been highly speculated that Young's substance issues haven't just had an impact on his own health, but also that of his children. You see, Young has three children: his son Zeke from his marriage to actress Carrie Snodgress, and son and daughter Ben and Amber from his marriage to Pegi Young. Why is this important? Because all three of them were born with significant disabilities.
Zeke Young and Ben Young both suffer from Cerebral Palsy, a permanent movement disorder that manifests in early childhood and often results in poor coordination, stiff muscles, and tremors, which makes it difficult for someone to even stand under their own power. Ben in particular suffers from the disorder so severely that he can't speak, and it has also rendered him quadriplegic and confined to a wheelchair.
Amber, meanwhile, is epileptic, a debilitating brain condition where exposure to triggers such as flashing lights or other jarring brain stimuli can cause someone to have potentially dangerous epileptic seizures. Thankfully, she continues to have a successful art career in San Francisco.
Young now takes Ben on every tour, and commented to the New York Times in 2012 that "He's our spiritual leader in that way. We take him everywhere, and he's like a measuring stick for what's going on."
"I tell Ben everything, and he listens," Young would later add. "He knows everything, but who is he going to tell?"
It's been speculated by many that Young's substance habits were largely responsible for the developmental issues faced by his children, and while the singer himself has largely remained private about the matter, he appears to be wholly dedicated to looking after his son, even well into his old age.
Young's shared plenty of his passions with Ben, most notably his love of trains, which he apparently has had since he was 10 years old. Amber once affectionately quipped that "Dad's a train nerd," and as such, he and Ben began building a massive model train set years ago.
"When I started building the railroad, I built it so that my son and I could have something to do together especially when we found out how disabled Ben was physically," he told the Times.
Even after he and his wife Pegi divorced in 2014, both of them have agreed to continue looking after Ben, who thankfully also has his own ventures to work on aside from those of his parents. He runs an organic chicken farm on the ranch his mother kept in the divorce, and using a communication device to speak to a local paper, he stated that: "The whole idea of nurturing animals that can give you something in return without having to slaughter them just works for me. There is a very (strong bond) between people on the farm and the animals on the farm. Besides baby chicks are so cute, and eggs are one of my favorite foods."
Both Young and his ex have taken the plight of others in Ben's position to heart, and the two regularly donate money to charity. The two actually created the Bridge School, a private institution for profoundly handicapped children located in Hillsborough, Calif., because the existing ones nearby were insufficient for Ben's needs.
After all of this, Young still has nothing but the best things to say about Ben:
"Ben has taught me you never give up. You can't say 'This is too hard.' It can't be too hard. There's so many kids with challenges that are so great and yet they just keep trying. So if I come up against something that's hard to deal with, I can handle it and it's because of him."
All these celebs' devotion to their kids shows why being a parent is the most important job anyone could ever have.