The Perfectly Imperfect Family
By Kim Stagliano
Wednesday, 6:28pm
I just fed my family dinner. My husband is doing the dishes. Mia is laughing and making stimmy sounds to an old Sesame Street CD-ROM from the year 2001. Oh, the CD-ROM does not play in our current computer - in fact, we no longer have any of the old Sony Sesame Street CD-ROM computer games. Mia found her old friend Elmo on You Tube and she is watching another person play the games. She is wearing her evening attire. Black yoga pants and a black T-shirt. She changes into this outfit each day, after wearing her blue jeans (got her into shorts today after weeks of work) and a pink shirt. Pink. Not lavender. She's no dummy. I tried telling her it was "purple pink." No soap.
She's happy.
Gianna is pacing back and forth in the family room near Mia. Always near Mia. This room is open to our kitchen, and my office is a corner office. Corner of the dining area of our kitchen. She is holding her iTouch and a blue rubber duckie. In the background are the sounds of running water and clanking pans, NY Channel 4 news, Mia's voice, and Pink Floyd's Breathe - playing behind my log-in screen on Gianna's log-in on my computer (there goes the helicopter sound) as part of a series of PBS BoohBah videos that have been set to all manner of musical tastes. Miss G loves music. And Pink Floyd. And Sammla Mammas Manna Mix. And Dimmu Booghir.
She's happy.
Bella is upstairs watching Sesame Street Count With Me seated next to he ooccupational therapy steam roller device in her room. There is every chance she is naked.
She's happy.
Why am I giving you a blow by blow of my household? My unusual household filled with autism and stims and communication deficits and sleepless nights and 24/7/365 work for Mark and me? My home full of fear for the future (my 19 year old "graduates this week.) Why?
Because across town, right now, is the wake of a 15 year old cheerleader from our high school. A perky, blonde "perfect" kid from the cheer bow in her hair to her bouncy toes.
She committed suicide in her home last weekend.
She was 15 years old.
There is no perfect kid. Ever. We love our children as they are - we try to help them in every way possible. I do for my girls. You do for your children. And I know that AA's heart-broken parents did for the same for their child.
She committed suicide in her home last weekend.
She was 15 years old.
Hug your child. Count your lucky stars. I do. Maybe not as often as I should. And please pray for a family in my town whose life will never be the same and who would likely trade places with me in the snap of two fingers for the blessing of happy children making noise in the family room.
Kim
Kim Stagliano is Managing Editor of Age of Autism. Her new novel, House of Cards; A
Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.
Hi Kim, I think of you and your family frequently and just finished reading your major post. Kudos to you all for your story and stamina. I am going to check out your book, ALL I CAN HANDLE. Our family is good, Linda is divorced and remarried, living in the Atlanta area, the Gagliano boys are hunks, robert is alum from. clemson, Steven is a senior at Ole Miss! David's wife passed away three years ago, he is going with a gal, Jessica is gettin married next May, Alex has a girl friend, is a civil engineer, alum, The OSU. Dan and I are hanging on, working hard at doing so, we are now both 80 !!!
Fact, we are now in Cleveland for our annual visit.
Wishing you and yours saftey and good health, strength and fortitude
Sincerely, Elaine Rossin, Roth
Reflections on the times of 20 or so, years ago........life is what happens while are we are busy. making other plans.
Posted by: Elaine Roth | September 01, 2015 at 10:38 PM
Severely autistic people are continually left behind. Continually discriminated against based on their degree of disability. Yet, time and time again, when families go before OAH fair hearings and attempt to provide evidence of how severe their autistic children are, the ALJ administrative law Judges, ignore the evidence presented as if they are acting as defense lawyers for the California regional centers. Keep in mind the OAH is contracted by Department of Developmental Disabilities and some of the Judges they groom as part of their contract with DDS are judges that will always take the side of regional centers. This is not a "fair hearing"as we are led to believe.
Posted by: Kerry Ann | October 31, 2014 at 01:41 AM
Although I love you tube for my son- 11 years old and still loving the boobahs, teletubbies, etc. ALERT- there are too many sites that look like kid friendly content but if you listen to what is said or look at the title you'll find out what you thought was telletubbies was really Nazi teletubbies or Boobah massacre and are really disturbing sites.
Posted by: Kim | June 24, 2014 at 02:54 PM
Thanks Kim it helps to be reminded to count your blessings not your troubles.
Posted by: Rich | June 23, 2014 at 06:07 PM
Kim, my son also has found all his favorite Disney,and Sesame Street videos on YouTube! He watches them everyday and I love to see the smiles on his face as he watches and listens to his favorite characters and songs. He also is a wiz at technology and can run rings around me! We love our children for who they are and God Bless them.
Posted by: Gayle | June 21, 2014 at 02:56 PM
Not trying to be a buzzkill, but....
If truth be told, ours reflect the real, American "Modern Family" than most realize.
While I applaud you for fulfilling your moral responsibility to ensure your children are healthy and happy, it is not the children of loving, dedicated parents that I worry about so much.
I worry for the Avonte Oquendos (the teenager that eloped from his NYC public school and was found dead 3 months later). I worry about the children being abused in foster care and day programs and in substandard, special ed classrooms. I worry about those coming of age and whether their naivete will be exploited and used as weapons against them by the unscrupulous. I worry about how many of us will be left standing to fight not only rabid pro-vaxers but those that will undoubtedly raise their voices in protest and resentment that our children are tax burdens for them and that they should work for their SSI checks like govt subsidized automotrons.
Lastly, my blood runs cold thinking more children will be injured and disabled by vaccines. The cold, hard fact is that a the majority of people do not have the stones or the compassion to go above and beyond to help their children as well as to try to help children that are not ours.
While my kid's happiness gives me enormous satisfaction and puts things in a philosophical perspective (after all, isn't their health and happiness the real endgame?), my happiness is not complete.
I suspect that is why you work so hard doing what you do.
As for the NT child that has passed, my heartfelt condolences. I think we need to look at the food supply.
GMOs are known endocrine disruptors and mock neurotransmitters. They can and do exacerbate anxiety and depression. Read Russell Blaylock. Compounding that are the antidepressant residues, that are known to be present in municipal drinking water, and a steady diet of chemicals, preservatives and excitoxins in junk food and overly processed meals, and you have a generation of youth that are troubling and troubled.
Worth mentioning is that avoiding GMOs is one of the things we parents need to keep in fighting shape. I know that a GMO-free diet helps me enormously with keeping up my spirit and energy.
It REALLY works.
Posted by: Handthatrocksthecradle | June 21, 2014 at 10:49 AM
Kim, what a wonderful article about your beautiful family.
And I join you in praying for the family of the teenager who died.
Your article reminded me of the new Frozen movie.
Has a cute song in it about everybody needing each other to help them out.
When the kids are happy everything else is okay.
Politicalguineapig; I 'm guessing you don't have any children.
I don't think you can understand how much you can love your child.Even mother birds will risk their lives to lead hawks away from the babies in their nest.
Yes, we love our children. And seeing them happy is kind of like a sunrise, a beautiful gift that can keep you going no matter what else life throws at you.
Posted by: Hera | June 20, 2014 at 11:03 AM
My daughter is 15 and has been watching Boobah on Youtube lately. It makes her happy so i let her do it
Posted by: Laura Kozlowski | June 19, 2014 at 08:13 PM
I don't remember even one teenage suicide from my youth. Not one.
Posted by: Linda1 | June 19, 2014 at 06:55 PM
We love our children as they are- possibly the biggest lie ever told on this blog ever.
Posted by: Politicalguineapig | June 19, 2014 at 05:56 PM
Kim, thanks, and to everyone who has posted in response.
A year or two ago out for a drive, we stopped at a light, and I noticed a bumper sticker on the car in front of us, “Zoloft, Unsafe At Any Dose.”
“Look at that,” I said, almost under my breath.
“Don’t worry, Mom,” my son said, “I don’t suffer from clinical depression.”
How thankful I am for that. I realize how much my son knows and has learned from his many hospitalizations.
Sometimes when I am feeling very low, I also remember something else my son told me once, “Terrible things happen to people.” I think he has a better grasp of life in this “valley of tears” than I do.
Posted by: Eileen Nicole Simon | June 19, 2014 at 05:55 PM
CIA it is good to have a sister in arms; that sees.
Posted by: Benedetta | June 19, 2014 at 04:24 PM
All three of my sons make me proud in different ways every day.
Accept life on its' own terms and be of service to others.
Posted by: Louis Conte | June 19, 2014 at 12:29 PM
Benedetta,
I thought the same thing, that I'll bet the girl who committed suicide had been brain-damaged by her vaccines. We're winning, but it's a tragedy that it has taken and will take so many millions of damaged, deranged lives to change the tide. Vaccine damage pervades our society, and goes way beyond autism and peanut allergy, horrendous though those are. And I also thought how happy my daughter is now, messing around doing nothing when we're not working on English etc., how lucky I am that she's beautiful, happy, and making progress.
Posted by: cia parker | June 19, 2014 at 12:29 PM
Touching and truthful..One of my all time pet peeves is when people say to me " I couldn't do what you do".
It really is not meant to be insulting, I know that, but it rubs me the wrong way none the less.
I am learning as all 3 of my children grow up that neuro-typical children are hard and heartbreaking too, yes they grow up, become independent, make their own choices, and often mistakes, but I am not sure that is any easier to endure.
Posted by: Julie | June 19, 2014 at 10:43 AM
Your life is mirrored EVERYWHERE. Autism is the new normal.
Yes, count your blessings, hug your kids and soldier on!
xox
Posted by: Anne Dachel | June 19, 2014 at 10:42 AM
How right you are, Kim! All I want is for Meg to be happy and feel good. Autism is the big tip of the iceberg but there is much more connected.
How devastating for this family. Too much tragedy.
Posted by: Teresa Conrick | June 19, 2014 at 09:37 AM
Do you think that vaccine injuries cause depression?
I know it does.
What does vaccine injuries look like, and how many different types are there?
To answer that question I think we have to list everyting the hypothalmus controls.
Posted by: Benedetta | June 19, 2014 at 08:41 AM
Thanks for the dose of reality Kim.
We have a lot in common except I only have ONE wild child and am a man. My 14 year old does the same things as your girls. Thank G-d for YouTube! I have hundreds of VHS tapes that can't be played, but my girl has found all her favorites online too.
My heart goes out to the parents of the girl who committed suicide. For all the challenges we have, I wouldn't change places with a "typically developed" family.
Whenever I'm having a moment, I remember your poop stories and think, it could be worse!
Thanks for being you.
Regards from the land of Oz.
Posted by: Captain Howie Levy | June 19, 2014 at 08:11 AM
Thank you Kim
It's easy to be jealous of parents whose kids are NT, and judge them about thinking they're busy when we know they have no idea what busy is, but the fact is everybody is broken. For all I know someone on my street envies us. Our oldest is in high school and gets great grades. Carter and I have walks almost daily. Our kids are seen outside having fun. Carter, while his neurological affliction is nothing to celebrate, he continually gives us little things we do cheer him for. He is amazing. The neighbours like talking to him. And I found out long ago he's way smarter than me. Then there is the love. it makes the family perfect. Kim, I know your house overflows with it. You don't need societally defined "perfect" people in the family for the family to be perfect. I can't begin to imagine but a fraction of the pain that mom and dad and siblings of that poor girl are feeling. I;m sure they envied some other family.
Posted by: Carter's Daddy | June 19, 2014 at 08:02 AM
Yes yes yes!!!!!
Posted by: Sheila Reed | June 19, 2014 at 07:50 AM