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Autism Sibling Perspective: Faking Happiness for Anthony

Broken_heartBy Natalie Palumbo Ant  Nat Tree

I am 18, a senior in high school, and the younger sister of a 21 year old brother with low verbal autism. 

I recently suffered a terrible heartbreak.  My relationship of four years came to an abrupt end.  This person was very important to me, and was my closest friend.  He had gotten very close to my family, and was amazing to Anthony.  They say life is a cycle and is always changing.  For me, one thing always remains the same -- Anthony’s autism. 

I was sobbing while my mother attempted to comfort me when Anthony came thumping down the stairs.  I rarely cry, so this got his attention right away.  Anthony immediately stated, “Natalie…what’s wrong?” followed by the command, “Natalie, stop crying.”  This prompted both my mother and me to laugh through our tears.  To Anthony, it was as simple as that.  Crying is bad, so just stop doing it.  I couldn’t imagine how I would explain things to him.  For a moment, I wondered how Anthony would handle this person’s absence from my life.  Before I could give it another thought, Anthony commanded, “Natalie, come upstairs and see iPad Christmas Special.”  With tears in my eyes and an exhausted smile, I looked at my mom and said, “Even when my heart is breaking, Anthony is still Anthony.”  She stroked my hair and said, “You’ll be a wonderful mom some day. “  With that, I followed Anthony up the stairs and did my best to act cheery for him. 

Anthony’s “iPad Christmas Special” consists of opening credits with a cast of various, unrelated TV and movie characters set to the tune of “Hip To Be Square” by Huey Lewis and The News -- or as Anthony puts it, “Heavy Lewis and The News.”  I have seen this a million times.  First, it was the iPad Halloween Special, then the iPad Thanksgiving Special, and now it is the iPad Christmas Special.  I guess the iPad New Years Special and iPad Groundhog Day Special are next.  Just hearing the first few chords of “Hip To Be Square” makes me cringe.  For Anthony, it never gets old.  For us, it’s mind numbing.  In order to be kind, we all suffer through it.  Anthony typed up the whole thing himself using an iPad app, and added the music.  He is very proud of it.  I did my best to hide my heartbreak and cheer for Anthony as I always did.  As I faked my smile, it occurred to me that absolutely nothing happens in my life without autism being a part of it.  

I live in two worlds – the real world of obligations, deadlines, and expectations, and the time suspended world I share with Anthony.  On one hand, Anthony’s world can be a distraction from pain.  I must subdue my misery so I can appease Anthony.   Placating my brother with games and movies allows me to escape my frustrations.  The down side is internalizing everything just to cope.  When I try to share my feelings at home, I must deal with the jarring effects of Anthony’s multiple interruptions.  Anthony’s needs are always “now” even though the past and present exist simultaneously for him.  He can’t fathom what I am going through, so he’ll make the same demands on my time regardless of what I am suffering.  This is a constant reminder that I can’t lament too long.  Anthony’s persistence won’t let me.  I have to keep moving forward because Anthony needs me no matter what I am doing, or how I am feeling.  Reality compelled me to throw myself into my portfolio work, and just keep going.  I may mourn, but my work is still there. 

Anthony CarMy mom said the experience of growing up with Anthony will make me a wonderful mother.  Small children need you no matter what.  It doesn’t matter if you’re sick, depressed, busy, or overwhelmed -- they need what they need when they need it.  She said the fact that I could tough it out, bury my pain, and manage to be considerate of Anthony’s feelings is what strong moms do…and I was already learning to do it.  She said she knew it wasn’t easy for me to hide my feelings, but keeping composure was an important skill, and promised she’d always be there to help me.  I get scared when I think of handling two aging parents, Anthony, a couple of kids, and my career.  People have accused me of being too serious about my future.  I simply dismiss them.  I need to know I can handle things myself in case I have to do it alone.  For me, it is serious, and I need to be prepared.  Thankfully, I’ve had plenty of encouragement from administrators and teachers.  I just keep working on my portfolio in the hopes of getting accepted into my first choice for college.  The major I want is very competitive, and the deadline for submission is near.  After that, all I will need to worry about is how we will handle Anthony’s autism at my graduation.  Absolutely nothing happens in my life without autism being a part of it.  Hopefully, if all goes well, my smile will be genuine. 

Natalie Palumbo is Contributing Editor to Age of Autism.

Comments

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Just want to say to not forget about recovery. It's from immune dysfunction, with autism recovery docs in all the big cities knowing this. Most can be recovered enough to drive and work. Please check into it. I recovered mine, and adopted and recovered her. They still depend upon diets and immune boosters, but they are now in regular school, drive, etc. Before treatments, they could not do regular school and barely could "behave" enough to attend special needs schooling. Please have faith that recovery works for most.

Natalie. I'm so sorry I called you the wrong name! Too busy these days- that's what stress does...

Amanda, best of luck in your school applications and a big hug for your heartbreak. That is never easy but time does heal! Allow yourself to wallow a little bit- talk it out, cry, eat lots of ice cream. One of my kids went through this a while back and it's not easy but after awhile you will want to go out and have fun again.

We just bought your book Ant & Nat And The Snow Dance for our 16 year old son, for Christmas. Every year he gets a book about snow. Your journey has become part of our family tradition. Our autistic son is an only...wish he had a sister like you.

Hi Natalie,

Your writing is very revealing, and I have found that writing is a "therapy" because we can express our thoughts and feelings without interruption and regardless of the fact that we may not have someone else who can listen to us, honor our feelings, and give us understanding and feedback.

RE: "The down side is internalizing everything just to cope. When I try to share my feelings at home, I must deal with the jarring effects of Anthony’s multiple interruptions."

This is disheartening especially for someone so young...although when I was younger I was able to survive emotionally by distracting myself with many goals as a "coping mechanism"...however, this method will not work indefinitely so I hope that you will find another relationship that is supportive with someone who has compassion for you like you have for your brother and parents. When women feel "alone" it makes us vulnerable to accepting relationships that don't provide us with meeting our needs, so please make it a priority for yourself to only accept what you truly need and deserve.

RE: “My mom said the experience of growing up with Anthony will make me a wonderful mother.... She said the fact that I could tough it out, bury my pain, and manage to be considerate of Anthony’s feelings is what strong moms do…and I was already learning to do it. She said she knew it wasn’t easy for me to hide my feelings, but keeping composure was an important skill”

I have to say that I believed this myself throughout most of my life, and as female “caregivers” this is what we are taught. However, I have come to realize that this just doesn't work indefinitely, and the best way to be able to give Love, Compassion and Support, is to RECEIVE Love, Compassion and Support, so that your “emotional gas tank” won't end up on empty. It is not that it is impossible to give to others without receiving what you need emotionally yourself, but it eventually “catches up with you” and when the gas tank is drained, you have to walk everywhere instead of driving in the car. So even though you can still get where you are going, it's a lot harder and more exhausting to have to walk down the road of life, especially in bad weather, when you could be driving a car instead. SMILE

I have never had an emotionally supportive relationship in my entire life, mostly due to being married to an abusive alcoholic, which drained me and now I'm too worn out to be able to give myself to anyone else besides my grandson. So why should you “take my advice”? Because you really don't want to have to go through life this way. It is very hard, although I have been able to survive all this time through God's help. (“We have strength by virtue of Him who imparts power to us”) Many times when I have felt at the end of my rope, I open the Bible up and there will be scriptures that “speak to me”, or I will open it to Psalms and find that King David wrote about all of the feelings and needs that we all have. You don't have to know everything about God to seek Him out and read His Word. You don't even have to be certain of God's existence because He can reveal Himself to you regardless. He cares about us and understands our pain and suffering. “Surely, he has borne our griefs and carried our sorrows”.....

Maybe you could email or talk to Jake Crosby. He wrote one article on AoA regarding how Methyl B-12 dramatically helped his autism when he was a teenager, and I don't know if your parents have tried this or any of the other natural therapies for your brother's autism, but Methyl B-12, Klaire Labs probiotics and Young Living Essential Oils have dramatically contributed to my grandson's recovery process. Here are a few books that helped both my grandson, my daughter and myself, as well as many friends and family:

http://www.raindroptraining.com/resources/index.shtml#books [Scroll Down]

“Feelings Buried Alive Never Die”

Excellent resource for personal growth. Clearly explains the connection between buried emotions and physical disease.

“Healing Oils of the Bible” by David Stewart, PhD

There are over 500 references to essential oils in the Bible, such as Frankincense and Myrrh, which were given to Jesus by the wise men.

[Highly recommend this condensed version “Introduction to Healing Oils of the Bible”, as the first book to read, $6.00]

Center for Aromotherapy and Research Education [C.A.R.E]
Directory of Certified C.A.R.E. Instructors
http://www.raindroptraining.com/directory.php?country=1

If you contact a CARE instructor listed in your state, they can refer you to someone in your area that can give you direction and support.

In your photos I can see that you are beautiful on the outside as well as inside, although you look somewhat "lost" and sad, so I hope that you will find what you need in your life, so that you can be truly happy instead of "faking happiness".

Hi Natalie,

You are a wonderful sister and a beautiful artist and writer. I hope things get better and that 2013 is the beginning of a great journey for you in college.

All best.

Thank you! My 9 year old daughter is really struggling with her 13 year old brother with autism. I will read your essay to her in the hopes that your words will inspire her!

Amy B.

Best from us Natalie my wife says to pass on her feelings for you ..don`t stop writting your a hero.

Anne Dachel, Do you have any more children except your son?

I always thought that my daughter would be a Natalie to my son - but now I am not sure who will be looking after who.

Natalie your 18 - college is coming. That is were I meet my soul mate,-- at Media Scholar married by the time I as one and twenty.

How do any of you know the man with autism is capable of anything more? How do you know he is not capable of being the strongest support a suffering young woman can have? Is this blog about people with autism or not? There is so much to learn about what people with autism can do and feel and be. I know. I am a (oh, help) grandmother dealing with it first hand at a price so large you cannot imagine. I, am my health-challenged husband I have been married to for 53 years,have dealt with it for several decades and we are friggin winning! While losing 5 of our six kids and our extended family. For the young man with autism. He's got it now, ok? He's fighting for himself! While his, and our, next of kin are writing us hate letters. Just get it, for God's sake. Either you encounter the Anthony's of this world as PERSONS to offer something to you in YOUR need, like your mother or a friend, or you just let the autism world alone. This autism world doesn't need your sacrifice--this world knows it for what it is.

Natalie, YOure the best! I think you're a VIP on AOA ! What could be better?!

WHEN I was one-and-twenty
I heard a wise man say,
‘Give crowns and pounds and guineas
But not your heart away;

Give pearls away and rubies
But keep your fancy free.’
But I was one-and-twenty,
No use to talk to me.

When I was one-and-twenty
I heard him say again,
‘The heart out of the bosom
Was never given in vain;
’Tis paid with sighs a plenty
And sold for endless rue.’

And I am two-and-twenty,
And oh, ’tis true, ’tis true.

- A. E. Housman

https://www.youtube.com/watch?v=bOg2VCUosCM

Natalie, you are a eloquent voice for the millions of family members out there who never get covered in stories about autism. Autism changes lives forever---including the lives of siblings. So many of these children grow up in the shadow of a brother or sister who demands so much from parents. Their sacrifices are largely unrecognized. The responsibility they will face as caring parents age can't be shrugged off.

Yesterday this story was published online, Autism Experts: Facing a Tsunami of New Cases --Local experts and parents warn Congressman about coming crisis. http://te.patch.com/articles/autism-experts-facing-a-tsunami-of-new-cases

It was about meeting of autism parents attended by U.S. Rep. Patrick Meehan. It was a follow-up to the recent House Reform Committee hearing on autism. The reality of the situation for families living with autism was made clear—these disabled children are aging out of school with no place to go. Beyond that, parents are left to face the future. “What's going to happen when the parents are gone or too old to care for their children.”

It’s so unfair that an epidemic of disabled children, long denied and neglected by public health officials, will result in a lifelong responsibility for brothers and sisters like Natalie. Anthony is so fortunate to have a sister who will always be there for him. For Natalie, caring for Anthony is an act of love, not an obligation. What about others who are not so fortunate? What about the children with autism who have no brothers and sisters?

This issue is the one that will make autism a national crisis. Officials have successfully covered up the disaster for two decades pretending that autism was nothing new and that all we needed was early recognition and treatment. Anthony and the hundreds of thousands of other young adults out there are reality that can’t be denied. They will change the conversation on autism once and for all.

Anne Dachel, Media

Thank you for another poignant article, Natalie. As I've said before, I enjoy passing your articles along to my 20 y-o daughter and 16 y-o son, both of whom can relate so very well due to having an 18 y-o brother with "autism" (aka: catastrophic vaccine injury). You are eloquent and put into words so well the thoughts that many siblings most certainly have. Please keep us all posted on your college plans! Any hints on where you hope to attend? A very Merry Christmas to you and your family :)

Beautiful. Speechless. Bravo. And yes, what a wonderful mother you'll make, although as a mother, I wish for your sake your training didn't have to come so early in life and at such a high cost to you and your family. You're an amazing young woman, Natalie. We've all got your back.

Natalie, I'm 3x your age, and don't have your level of maturity and selflessness. We wish you the best, and sorry for your breakup.

PS I wish my son could speak as well as your brother.

Natalie I am so sorry for your broken heart. Time will heal it eventually. I know you have probably heard this a thousand times, but Anthony is so lucky to have you. I just wish my husband and I had given our son the precious gift of an amazing younger sister (or brother) as your parents did for Anthony. Hopefully college will bring someone new to your heart. Best of luck getting into the college that you dream of. You deserve it.

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