It can’t be easy being the sibling of a child with autism. But this little 6-year-old girl not only copes with the situation, she’s also a tremendous source of support. She’s the light of her brother’s life and for that, he’s so very thankful.
My Sister, My Hero
My children are 16 months apart. With Ethan, our firstborn, we tried — and had fun trying, darn it — for five months before we hit the jackpot. (You might want to steer clear of room 901 at the CuisinArt Resort in Anguilla.)
When Ethan was 6 months old, our daughter Eliza was conceived, literally on my 40th birthday. (Tacky and trite, yet entirely true.) Still nursing Ethan and with just one newly returned monthly cycle under my belt (figuratively, not literally), I was convinced — and, more importantly, convinced my husband — that there was no way “we” could get pregnant so quickly. Famous last words.
The perfect present
My pregnancy was confirmed on Mother’s Day of all times. Who knew a pregnancy test would be the perfect present? At that time of my second pregnancy, Ethan’s development was right on target, and yet, I cried, feeling guilty, that somehow a new baby would short-change the unspoken “Mommy and Ethan alone-time” contract I had with my son.
The birthday girl
Eliza turned 6 on January 23 (1-2-3). Ethan, as always, was by her side and sang and played “Somewhere Over the Rainbow” in her honor. While Ethan has full speech — and a plethora of four-letter words thanks to Eminem and Prince — he has one more gift he wants to give his sister, which as his mother, I have taken the liberty to elucidate, as he’s too busy composing his next big symphony. (As it happens, he’s entitled it “Penis Poop.” Sigh.)
A letter from Ethan
For my darling sister, on the occasion of her 6th birthday,
You saved me. Literally, you saved me. The day Mommy and Daddy brought you home from the hospital is the day I completely shut down. In essence, your arrival forced them to realize my development wasn’t where it should be, and they called Early Intervention services. Without you, who knows if they would have stopped listening to everyone who said I was “just being a boy, and boys develop at a slower pace.” (More famous last words.)
You might not know it, but from day one, you have been my advocate, my protector, my teacher, my rescuer, my hero. My baby sister by birth order… a giant presence in my world.
We have two different sets of strengths: I am more musical, you are more athletic. I like computers, you like books. I like pirates and soldiers, you like princesses and Barbie. We don’t have a conventional relationship. Yet together, we are one very powerful force. We very much complete each other. Yin and yang. We are forever a team. We are The E-Team.
Sometimes I know you resent the attention that my music and autism engender, and I want you to know that I understand. I hear you tell Mommy and Daddy that you want to be on television… that you want to be interviewed for the newspaper… that you want to be on YouTube. Eliza, you don’t need to be on TV for everyone to see how talented, special and unique you are. You are already a star. You are my star. You are Mommy and Daddy’s star, too.
You are beautiful, Eliza, and not just because you have blonde curly Shirley Temple hair and blue eyes that make people stop in their tracks. That’s just your outside. Your true beauty is what’s inside, for it’s your heart and mind that make everyone you meet fall in love with you.
“You are one of those rare people lit from within.”
You are kind, thoughtful and wise well beyond your years. You are one of those rare people lit from within. You are the first to help a friend who is hurt; with a friendly smile and a kind word, you soothe their physical or emotional pain. You are quick to forgive a slight. Rather than receive material birthday gifts from your friends, you asked that they bring in one grocery bag of non-perishable food items so that you might donate them to the local pantry to help the less fortunate. (Come to think of it, are you sure we share the same DNA?)
When your friends ask why I am “different,” you try to educate them and sweetly say, “My brother has autism and sometimes his brain gets confused.” It is you, Eliza, more than any other person in this world, who has helped make me more typical. Who has helped make me more present in this world. Who has made me want to engage with others. Who has given me a sense of self, a sense of place and a sense of humor. You make the real world look so fun and inviting, that you help lead me out of my mind’s darkness and into the light. I see that your world is a wonderful place, simply because you are in it, and that’s where I want to be, too.
Your patience knows no bounds. When I get angry, you take your hands and wrap them around my face and say, “It’s OK Ethan, you’ll be OK.” When I do something good, you wrap your hands around my face and say, “Great job, Ethan! I am so proud of you!” When I mispronounce a word or say something inappropriate, you wrap your hands around my face and say, “No, Ethan. Say it like this.” And, I love it all, because I know you want the best for me and your support comes from the heart. Hopefully you know how proud you make me, as evidenced by my front-row claps and cheers at your ballet and gymnastics recitals. When you dance to my piano music, you make my heart sing!
Your teachers are amazed at your depth of empathy and they tell Mommy and Daddy all the time. One day, your teacher asked your class, “What are you thankful for?” Many kids mentioned a television show or pet. You answered, “My brother.” On more than one occasion, you have left certain extra-curricular classes in tears, because while you got a sticker, the teacher didn’t have an extra sticker that you could give to me at home.
Sometimes, I do feel guilty that I’m not the average, run-of-the-mill “typical” brother. But, it comforts me to know that you will always have friends like Lulu and Raya and CiCi and Marin, sisters-in-spirit, with whom you share “brothers with differences.” Rest assured that all us “brothers with differences” love our sisters just as much as you love us. We just have different ways of expressing our love.
While I know a birthday is traditionally a time to receive gifts, you should know that Mommy and Daddy also gave me a gift. That gift arrived six years ago — and every day since — and that gift is you. Having you as my sister is truly the greatest gift — and the greatest therapy — of all. I love you, Eliza!
Your loving brother,
P.S. My room is still off limits to girls (except Mommy), so keep out.
I am a cynic. I understand this about myself. I do not understand for one minute how, in all good conscience, a family ‘takes a custody break’ from their son and brother. I am not naive; I have seen aggressive, assaultive, sometimes self-injurious behaviors by the adult developmentally-challenged residents in my workplace, and know how behaviors in Autistics can quickly spiral out of control. A lot of the behaviors I have witnessed a a result of poorly maintained coping mechanisms, others attributed to attention-seeking, and some are outright random in nature. My workplace is a state-run residential facility; some have told me this is “where you go when you have no where else to go”. This is where so many adults with MR end up if the legal system finds that a correctional facility is the wrong setting; there are however, some who have been placed here voluntarily. And once someone is in the state system, it is often difficult to leave it.
That’s what I don’t really understand about this story, and perhaps it’s because it leaves many unanswered questions. Having a child on the Spectrum who becomes physically bigger and stronger is something we can all commiserate with. Couple that with either older parents and younger siblings, or both, and I can understand the inherently worn-down feeling that can result. I don’t understand how the family in this story handled, or failed to handle this young man’s behaviors; what interventions were tried: psychotherapy, medications, biofeedback, art therapy, music therapy, weighted vests, etc. How did simply changing homes redirect this young man? How is it that this foster mother was able to learn about what made this boy tick, but his own family could not?
The nature of the foster parent programs in most states are a 50-50 proposition at best; I don’t need to go on about many of the horror stories associated with less-than-diligent foster parents and their charges. Let’s face it: this young man was extremely lucky to be paired up with a caring and motivated foster parent.
I am glad things worked out well for this young man, and in the end that’s the most important thing.
One of the lesser things is the feeling I got after reading this story: a feeling that briefly, and perhaps selfishly, this young man’s family gave up on him. They gave him over to the state to try to ‘fix the situation’ they couldn’t handle; basically counselling and medication that they couldn’t afford. At a time when stories abound about how families uproot themselves to live in locales that are more service-oriented to those on the Spectrum, I find it odd that they couldn’t enlist the aid of a social worker or find another avenue to get their son what he needed. I remember a few years ago when we were researching out-of-district schools that might be good placement options for my son. At one point I would have rented an apartment within a certain school district to comply with their residency requirements. I know parents who have sent their children to out-of-state camps and schools and agonized over those decisions but did so.
I don’t think I would have ever relinquished parental custody of my son over to someone else though.
I wish this story was more complete, and was able to answer these questions. I wish it didn’t leave me with a bad taste in my mouth about this boy’s family. I hope he doesn’t end up resenting their actions, or become confused by what ‘a loving home’ should be. But I’m cynical like that. -Ed
Child says his foster mother is “the one that brought me back home.”
For some autistic children in state custody, leaving their parents means finding a new home with a foster family.“The thing that made me come here is I almost burned the house down,” 12-year-old Michael Chambers said recently, sitting in his foster home in Eagle Mountain.He was upset that he couldn’t watch TV and lit a paper airplane on fire, not thinking about the consequences. Then he tried to stomp it out and threw it in a closet, where it burned out.
“I was so mad I was not focusing on what I was doing,” he recalled.
But it was far more than that one incident, said his mom, Melissia Chambers. He choked his younger brother, hit his older sister and hid things from his parents, even stealing from them. They couldn’t control him.
“We told him that Mommy and Daddy and his brother and sister, we loved him, but we needed a break from his behavior,” she said. “We needed to know that he was safe and we were safe.”
His foster mom, Patti Jiordano, 61, said she has not let Michael dwell on the diagnosis during his more than two years in foster care.
“I tell him he’s a nice little boy who thinks a little different,” she said. “He has to learn to think right — I don’t let him use it as an excuse.” He receives both weekly counseling and medication, which his family couldn’t afford.
Michael credits Jiordano for much of his growth, whether it’s learning not to slam doors or practicing how to stay calm with deep breathing.
After Michael moved into her house, she taught herself everything she could about autism by talking with friends who are teachers, and reading books and the Internet. Through trial and error, she figured out what worked for Michael.
The skittish kid who showed up at her house, unable to make eye contact, can now show a stranger a composition book filled with his drawings of superheroes.
“I’ll remember Patti all my life,” he said. “She’s the one that brought me back home.”
Michael wants to live with his family again but acknowledges he’s gotten used to his new life. His mother hopes to see them reunited by the end of the year.
The Chambers have learned techniques from Jiordano and family therapy that they hope will help Michael succeed at home.
“It was the hardest decision that we ever had to make,” his mother said, “but I know now without a shadow of a doubt it was the best decision we ever made.”
Special Needs Parents are a special breed. Parents of typical children don’t get it, and probably never will. We revel at every inch of progress our child makes. We know our child may quite possibly be forever delayed intellectually, emotionally, socially and physically, as compared to their peers. This knowledge also imparts upon us the beauty and fragility of our child. “There but for the Grace of God go I” is the quote we have heard many times. We marvel at their progress and exult in their attainments because we realize their potential. That potential is virtually limitless. As parents on the Spectrum we have learned about many famous historical figures, geniuses and icons who were (actually or likely) autistic. That next step, that complete sentence, that piece of art, that next thing they do (we hope) will unlock that little section of his brain, and bring our child closer to reaching that potential. We are, as described in the exerpt below, ever vigilant of our child’s milestones because, more than anyone else they encounter, we provide comfort and reassurance; essential components of nurturing parents. We commit every verbal and visual nuance to memory; knowing the difference between crying and really crying. No one taught us how to be Special Needs parents. For all the how-to books and blogs, we know our path is as unique and individualized as our child is; hopefully along the way we intersect with other parents who have a shared experience that will help us on our way, and vice versa. Special Needs parents are indeed a special breed: tenacious, patient, strong of will and backbone, educated, passionate and compassionate, and ever-present. This is our figurative cross, and we bear it gladly. Please click on the links to view the full article. -Ed
I don’t tell her that I will never forget the first time that I heard, “Look, Mama.” I don’t tell her that my baby girl was just three weeks shy of her 6th birthday when she pointed to the blue house — the one I’ll never forget — and said those words.
The moment a child is born, the mother is also born. She never existed before. The woman existed, but the mother, never. A mother is something absolutely new. ~ Rajneesh
I knew that motherhood would change me.
Or at least I knew that it would re-order my priorities.
What I didn’t know was that it would re-order my soul.
I didn’t know that in lending my body to my babies I would surrender my very being to a process unfathomably larger than myself.
I didn’t know that in so doing, I would find faith. And Faith.
I didn’t know that along with my babies’ births would come a vulnerability that would settle permanently in my heart.
That although the physical scars would heal, the karmic chasm would remain open and raw — letting in the extremes of the joy and pain of this life as a mother — unfiltered, unadulterated, unmitigated.
What I didn’t know was that loving my babies would be the greatest gift imaginable.
***To those who mother slowly, thoughtfully, cautiously and to those who throw themselves headlong into the messy, sticky, torturous sweetness of it all without ever looking back,
To those who keep a strict schedule and to those who don’t keep a strict anything at all,
To those who home-school and to those who are relieved to see the yellow bus in the morning,
To those who sing in the choir and to those who pray quietly every night at their babies’ bedsides,
To those who bake for hours and to those who stop at the bakery on the way home from work,
To those who hold their children close and to those who can’t wait to meet the children who will become their own — knowing they are out there somewhere, waiting to come home,
To those who mother intuitively and to those who over-analyze each and every decision they make,
To those who write their stories and to those who read them,
To those who have lived through the unfathomable pain of losing a child and to those whose hearts are with them.
To those who shout from the sidelines and to those who coach the team,
To those who pray that someday their child can BE on a team,
To those who have children with special needs and to those who teach their children respect and compassion for those who do,
To those whose children can say, “Thank you, Mom,” with words and to those whose children don’t yet have words and yet say just that — and so much more — every day,
To those who testify before congress about autism and the support that the community so desperately needs and to those who work for months to summon the courage to talk to one neighbor about their child’s differences,
To those who change the world simply by showing their children the rewards of a life lived with empathy and love, respect and appreciation for their fellow human beings,
To those who know what it means to be reborn a mother,
A very, very Happy Mother’s Day.
The preceding was originally posted on my blog, Diary of a Mom on Mother’s Day, 2010.
Just a few snippets from moms on the Spectrum on their special day. Happy Mother’s Day! -Ed
Mother’s Day: Autistic 12-Year-Old Interviews His Mom About What It’s Like To Raise Him
In Dave Isay’s new book, “MOM,” he collects the best pieces of mom-related stories from StoryCorps. Over six years, the organization put up booths where normal people could interview each other about anything they wanted. This one, just animated by StoryCorps, is a twelve-year-old autistic boy interviewing his mom about what it’s like to raise him. We were struck by his perceptiveness, his mom’s honesty, and the amazing relationship that comes through in just four minutes.
For any of you who might be wondering if your spectrum child will be under your roof forever…well, this one’s for you.
My son and I had the coolest conversation the other day at dinner, when it was just the two of us. I’ve been trying for the last few years (on occasion) to ask my son what he would like to be when he grows up. My question is usually met with silence, or something inappropriate about one of his special interests, or by the simple statement, “I don’t know”. Well, imagine my surprise when I broached the subject the other night (expecting the same response), but instead was met with the following exchange:
“Oh, Mommy, when I grow up,” he said, excitedly, “I’m going to be a teacher.”
I, of course, jumped right on it, surprised and elated to be having an actual conversation about the future. “Really?” I said. “What kind of teacher?”
And he said, “I’ll be a computer teacher, of course.”
“Of course – - ” I was trying to reiterate, but was interrupted.
“And I’m going to marry Jenny (his current “girlfriend” at school) and we’re going to have five kids.”
I was happily surprised to hear he had it all planned out. “Five kids, huh?”
“Oh, yes,” he continued. “It will be a boy, girl, boy, girl, boy – just like that.”
“Well,” I cautioned. “It might not work out just like that.”
“That’s okay,” he said. “I’ll still love them all the same and they’ll have YOU as a Grandma. What could be better than that?”
So for all of you Spectrum Moms out there who think there’s no hope for the future and that no one else understands what you’re going through, please remember this. It is possible for our kids to get better. You just have to take the first step and then another and another… Happy (early) Mothers Day to all of my fellow Warrior Moms!!
Mom Hero: ‘Super Mom’ Responds With Love to Autism’s Challenges
In honor of Mother’s Day, TODAY Moms is celebrating Mom Heroes, those everyday wonder women who quietly change the world. More than 700 readers submitted essays for our Mom Hero contest, and we wish we could give everyone a prize. Ultimately, the winners told us beautiful stories about mothers who are unsung heroes. Check back every day this week for a new winner.
Sandy Painter of Exton, Pa., is a mom of two, a full-time student, and, according to her husband Jason: “The top mom, regardless of if she wins anything.”
By Jason Painter
My Mom Hero is my wife, Sandy Painter. She is the hardest working mother I know.
Our youngest son is severely autistic. He receives numerous therapy sessions at our house and our school. Sandy participates and deals with all of our son’s therapists and his school. She also manages his diet, which is very restricted. He is gluten, casein and soy free.
The best way I can put her love for our family into words is to watch when our autistic son hits, scratches and bites her on a consistent basis. She has never hit him or put him down. She is constantly trying to find ways to make him better while being a mother to our daughter and a wife to me.
Sandy constantly helps our daughter with normal problems that a 9-year-old girl faces. She helps at the school and has spent many a night reading to her and helping her with her homework. She manages to keep our house clean and keep dinner on the table.
When Sandy is not being super mom, she is being a super student. Sandy went back to school and is taking four classes a semester. She has maintained a 4.0 grade point average, all while being an amazing mother to a special needs child and a normal child.
Sandy is an amazing wife and I am the luckiest man on the face of the earth to have her as my wife. In my book, she is the top mom, regardless of if she wins anything.