Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.

Wednesday, March 28, 2012

Thursday, March 22, 2012

A Young Boy's Thoughts about the Word "Retard"

This is a speech that was presented by a young high school boy named Soeren Palumbo in March of 2007.  He wrote it in honor of his sister, Olivia. He presented this speech to his fellow classmates and teachers.

He is now co-founder of the "Spread the Word to End the Word" Campaign http://www.r-word.org/.

To me, this speech, is by far, one of the most brilliant pieces ever written about the use of the word "retard". I thank Soeren for his thoughtful and inspiring piece. I hope that he does not mind that I share this as I am hopeful it will help to educate the world.

Please feel free to share this with your world....

I want to tell you a quick story...
Before I start, I was walking through hallways, not minding my own business, listening to the conversations around me. As I passed the front door, on my way to my English classroom, I heard the dialogue between two friends nearby. For reasons of privacy, I would rather not give away their race or gender.

So, the one girl leans to the other, pointing to the back of a young man washing the glass panes of the front door, and says:

 “Oh my gaw! I think it is so cute that our school brings in the black kids from around the district to wash our windows!”

The other girl looked up, widened her slanted Asian eyes and called to the window washer, easily loud enough for him to hear:

“Hey, Negro! You missed a spot!”

The young man did not turn around. The first girl smiled a bland smile that all white girls – hell, all white people – have and walked on. A group of Mexicans stood by and laughed that high pitch laugh that all of them have.

So now it’s your turn.

What do you think the black window washer did?

What would you do in that situation?

Do you think he turned and calmly explained the fallacies of racism and showed the girls the error of their way?

That’s the one thing that makes racism, or any discrimination, less powerful in my mind. No matter how biased or bigoted a comment or action may be, the guy can turn around and explain why racism is wrong and, if worse comes to worst, punch ‘em in the face.

Discrimination against those who can defend themselves, obviously, cannot survive. What would be far worse is if we discriminated against those who cannot defend themselves. What then, could be worse than racism?

Look around you and thank God that we don’t live in a world that discriminates and despises those who cannot defend themselves. Thank God that every one of us in this room, in this school, hates racism and sexism and by that logic discrimination in general. Thank God that every one in this institution is dedicated to the ideal of mutual respect and love for our fellow human beings.

Then pinch yourself for living in a dream. Then pinch the hypocrites sitting next to you. Then pinch the hypocrite that is you.

Pinch yourself once for each time you have looked at one of your fellow human beings with a mental handicap and laughed. Pinch yourself for each and every time you denounced discrimination only to turn and hate those around you without the ability to defend themselves, the only ones around you without the ability to defend themselves.

Pinch yourself for each time you have called someone else a “retard.”

If you have been wondering about my opening story, I’ll tell you that it didn’t happen, not as I described it. Can you guess what I changed? No, it wasn’t the focused hate on one person, and no it wasn’t the slanted Asian eyes or cookie cutter features white people have or that shrill Hispanic hyena laugh (yeah, it hurts when people make assumptions about your person and use them against you doesn’t it?).

The girl didn’t say “Hey Negro.”

There was no black person.

It was a mentally handicapped boy washing the windows.

It was Hey "retard”

I removed the word "retard".

I removed the word that destroys the dignity of our most innocent.

I removed the single most hateful word in the entire English language.

I don’t understand why we use the word;

I don’t think I ever will.

In such an era of political correctness, why is it that retard is still ok?

Why do we allow it?

Why don’t we stop using the word?

Maybe students can’t handle stopping – I hope that offends you students, it was meant to – but I don’t think the adults, here can either.

Students, look at your teacher, look at every member of this faculty. I am willing to bet that every one of them would throw a fit if they heard the word faggot or nigger – hell the word Negro – used in their classroom. But how many of them would raise a finger against the word retard? How many of them have? Teachers, feel free to raise your hand or call attention to yourself through some other means if you have.That’s what I thought. Clearly, this obviously isn’t a problem contained within our age group.

So why am I doing this? Why do I risk being misunderstood and resented by this school’s student body and staff? Because I know how much you can learn from people, all people, even – no, not even, especially – the mentally handicapped.

I know this because every morning I wake up and I come downstairs and I sit across from my sister, quietly eating her Cheerio’s. And as I sit down she sets her spoon down on the table and she looks at me, her strawberry blonde hair hanging over her freckled face almost completely hides the question mark shaped scar above her ear from her brain surgery two Christmases ago.

She looks at me and she smiles. She has a beautiful smile; it lights up her face. Her two front teeth are faintly stained from the years of intense epilepsy medication but I don’t notice that anymore. I lean over to her and say, “Good morning, Olivia.” She stares at me for a moment and says quickly, “Good morning, Soeren,” and goes back to her Cheerio’s.

I sit there for a minute, thinking about what to say. “What are you going to do at school today, Olivia?” She looks up again. “Gonna see Mista Bee!” she replies loudly, hugging herself slightly and looking up. Mr. B. is her gym teacher and perhaps her favorite man outside of our family on the entire planet and Olivia is thoroughly convinced that she will be having gym class every day of the week. I like to view it as wishful thinking.

She finishes her Cheerio’s and grabs her favorite blue backpack and waits for her bus driver, Miss Debbie, who, like clockwork, arrives at our house at exactly 7 o’clock each morning. She gives me a quick hug goodbye and runs excitedly to the bus, ecstatic for another day of school.

And I watch the bus disappear around the turn and I can’t help but remember the jokes. The short bus. The “retard rocket.” No matter what she does, no matter how much she loves those around her, she will always be the butt of some immature kid’s joke. She will always be the butt of some mature kid’s joke. She will always be the butt of some “adult’s” joke.

By no fault of her own, she will spend her entire life being stared at and judged. Despite the fact that she will never hate, never judge, never make fun of, never hurt, she will never be accepted. That’s why I’m doing this. I’m doing this because I don’t think you understand how much you hurt others when you hate. And maybe you don’t realize that you hate. But that’s what it is; your pre-emptive dismissal of them, your dehumanization of them, your mockery of them, it’s nothing but another form of hate.

It’s more hateful than racism, more hateful than sexism, more hateful than anything. I’m doing this so that each and every one of you, student or teacher, thinks before the next time you use the word “retard,” before the next time you shrug off someone else’s use of the word “retard”. Think of the people you hurt, both the mentally handicapped and those who love them.

If you have to, think of my sister. Think about how she can find more happiness in the blowing of a bubble and watching it float away than most of us will in our entire lives. Think about how she will always love everyone unconditionally. Think about how she will never hate. Then think about which one of you is “retarded.”

Maybe this has become more of an issue today because society is changing, slowly, to be sure, but changing nonetheless. The mentally handicapped aren’t being locked in their family’s basement anymore.

The mentally handicapped aren’t rotting like criminals in institutions. Our fellow human beings are walking among us, attending school with us, entering the work force with us, asking for nothing but acceptance, giving nothing but love. As we become more accepting and less hateful, more and more handicapped individuals will finally be able to participate in the society that has shunned them for so long. You will see more of them working in places you go, at Dominicks, at Jewel, at Wal-Mart. Someday, I hope more than anything, one of these people that you see will be my sister.

I want to leave you with one last thought. I didn’t ask to have a mentally handicapped sister. She didn’t choose to be mentally handicapped. But I wouldn’t trade it for anything. I have learned infinitely more from her simple words and love than I have from any classroom of “higher education.” I only hope that, one day, each of you will open your hearts enough to experience true unconditional love, because that is all any of them want to give. I hope that, someday, someone will love you as much as Olivia loves me. I hope that, someday, you will love somebody as much as I love her. I love you, Olivia.
Soeren Palumbo
Soeren Palumbo is a senior honors student at Fremd High School in Wheeling, Illinois, and big brother to Olivia. During Writer’s Week (in March 2007), he gave the following speech to a gymnasium full of his high school peers and faculty and received a standing ovation.

Saturday, March 17, 2012

More Things You Should Know

My previous post by Maria Lin (7 Things You Don't Know..) was inspired by this post written by Todd Oswald.

It is equally enlightening and written from a father's perspective.

Five Things You Should Know about a Special Needs Family

Friday, March 16, 2012

The Track Coach Gets Run Over

After struggling through many grades, this has finally been a very good school year for Weston.

In the morning, he reports to the Compass room where he receives educational, organization and support services designed to help him learn to become more successful in the educational environment. This program has honestly saved his life. He has thrived in the supportive climate.

I have Sue, Lisa and Eileen to thank for this, three special women who have taken a great deal of time in getting to know Weston. They understand his strengths and weaknesses. They see the happy boy beneath the diagnosis. They are amazing women.

Yesterday, Sue, Lisa, Eileen and I met with Pat the new coach for middle school Track and Field.

We sat at the conference table, the young male coach surrounded by four confident and vocal women; four women devoted to seeing Weston succeed.

The poor young guy didn't stand a chance.

Before he could even speak, Lisa began the discussion...

"I do not support this program unless Weston has an aide," she explains boldly.

I almost swallow my tongue remembering my intense discussions with the school last year as I tried to advocate for just a little extra help in the classroom.

"You need to remember, Weston can misinterpret other student's words and actions," she adds barely skipping a beat.

"I understand, said Pat "But.....

"Also, he is very disturbed by loud noises," Sue adds.

"Well, we could....." But before Pat has a chance to speak, it is Eileen who speaks next.

"Free time is not a friend to Weston, you need to be sure you keep him engaged at all times," she says.

Inside my head, I am amazed at the transformation of this middle school staff and their confident ability to understand my complex son.

I enjoy my new found freedom to just sit back and listen.

One by one, each woman takes their turn, pounding the coach with heartfelt advice and passionate pleas.

Poor Pat had little time to speak. And when he did, it wasn't long before he was pelted with a direct question or additional comment from the tireless trio.

For the first time in my life, I sit quietly and watch the monster I helped to create assail this unassuming young man.

The bitter meetings of last year now a distant memory, it seems, my intense and emotional crusade for Weston has finally begun to pay off as there are many folks at the middle school who finally "see" my son.

Poor Pat left the meeting scratching his head as four bold women had easily run over the new middle school track coach.

Wednesday, March 14, 2012

The Answer

I arrived early outside of the middle school anxious to pick up my young son and learn the results of his daring new experiment in self expression.

But there was no sign of Weston.

I hadn't received any calls from the principal.

No guidance counselors had phoned asking me to pick up my bruised and battered boy.

This was a good sign, I thought to myself, tying to convince my nervous mind that all would be well.

Where is he? I thought anxiously, craning my neck to see if I could spot any sign of the tall, lanky boy heading my way.

But there was nothing.

The radio blared but I couldn't hear anything.  My thoughts were held hostage, worrying about Weston.

Suddenly up ahead, I could just see the outline of a thin shape walking toward me.

Was it Weston? I squinted my eyes hoping this would help.

I studied the approaching figure carefully...the long bouncy strides... the slow deliberate forward movement.

It was Weston.

Was it a happy walk? I thought as my eyes studied his gait, searching for any telltale signs of his current mood.

He was walking quickly and seemed to bounce a little more than usual.

Phew, another good sign, I thought hopefully.

At last he jumped into the car. His hair was still gelled but the spikes appeared like they had fallen long ago. On his head, his Ipod.

'Hi Mom!" he said happily and nothing more.

"Well?" I asked "How'd it go?"

"How'd what go?" he asked innocently.

"The hair?" I asked impatiently.

"Ohhhh yeah," he said. "It went good. No one teased me."

"Really?" I asked, very surprised.

"Nah, they all actually kinda laughed."

"What do you mean?"

"Well, I think they all were surprised and just wanted to know what was up?" he answered.



"What about the girls?" I asked. "What did they think?"

"They really liked it. Lots of them asked me why I was doing it and told me they liked it."

I laughed quietly to myself and shook my head, once again my husband was right.

"How about the boys?"

"Well lots of them were like.....Hi Weeeeeeston? What's up with the Mohawk? And they laughed, not at me but more like a ..."that's kinda cool... laugh"

"You must be happy, it sounds like your friends were pretty supportive."

I realize I have misjudged his peers.

"Yeah," he says, "everyone pretty much left me alone."

"How about the teachers?"

"Most of them didn't even notice. The spikes kinda fell down at the end of the day."

For the first time in my life I am thankful for my inability to do good hair. As I looked closer at my son, I realize the gel failed miserably and all of the spikes fell down into a greasy pile at the top of his head. He now looked more like "the Fonz", a calmer, cooler version of a different nonconformist.

"So what do you think of your little experiment?" I asked.

He replied with a one word answer..


I am happy for my son and thankful that his experiment was a success. I let out the breath I had been holding all day. I must admit, I feel like I dodged a very big bullet.

Perhaps his friends are starting to understand Weston. Perhaps they finally see the kind heart that hides under the quirky spirit. Perhaps they are finally starting to accept him.

"I am proud of you Weston."

He smiled brightly and said,

"I can't wait to tell Dad."

Tuesday, March 13, 2012

The Nonconformist

Due to a recent change in medications, Weston is a much calmer and happier boy.

He has been using this new found quiet time to get to know himself better.

He has discovered a new favorite past time.... watching movies.

In true "boy" fashion, he has instantly become a die hard fan of Arnold Swartzenegger. He has recorded and watched all of The Terminator movies and can now recite (in a deep Austrian accent I might add), all of Arnie's most popular lines, 

"I'll be back!" he'll tell me as he takes the trash out to the garage.

"Hasta la vista, Baby!" he'll say to me and Nicholas as he leaves us for school each day.

Now, while I am happy to see my son enjoy a new form of self expression, I was not prepared for what happened this morning.

"Mom, I want to wear my hair all spiked up like Bill Paxton in the beginning of the Terminator movie?"

"What?" I asked, certain that this was a joke.

"No, really Mom, I want to do it."

Keep in mind that in the movie, Bill Paxton looks like this...

"Weston," I tried to explain calmly, "if you wear your hair like this, all of the kids at school will tease you."

"All of them!" I added for emphasis.

"Why will they tease me?" he asked sincerely.

"Because you will look very different and very creepy."

"I don't get it?" he asked "Why do they care what I look like?"

"Kids just pick on other children who are different or who are trying to become noticed in a negative way."

"I don't care," he said, "I really want to do it."

At this point, Pete has over heard the conversation and adds his two cents.

"No really Weston, kids are mean.They will be merciless!"

"I don't care," Weston exclaims emphatically.

Pete and I suddenly realize, we have lost him. Any chance we had to change his mind, has passed. Our emphatic pleas to save our son from merciless ridicule were all in vain. We have done nothing but convince our son that this is exactly what he wants to do.

"I don't care what others think. I want to do this. I don't think anyone is brave enough to do it and I want to try."

Pete and I look at each other and silently agree that we must allow our child to express himself even if it means he may be attacked by the wolves. We must support his bravery.

"Do you think Miss Arena will like it?" he asked me. "She always supports me." he explains and suddenly I realize that not only is my son taking a huge social risk by trying to express himself differently, but he is also curious about the people in his life. Will any of his friends support this risky behavior? What will his teachers think? What will the girl's think? He was testing their loyalties and he was not afraid of what he would learn.

"Well Weston, if you dress this way, you may find that no one supports you. What would you do if that happens?" I asked trying to prepare my son for the inevitable.

"I'm OK with it Mom!" he said.

"Are you sure?" I asked, You know you can always wash it out in the boys room."

"Mom, he said, I need to do this."

"Alright Weston," I agreed desparingly.

Now, I must admit I am not a hair stylist, lacking even the slightest ability to "do good hair."

But somehow by using water, gel and hairspray, I was able to help my brave son, to look like this...

Weston was pleased. He thought about wearing his father's old leather jacket but decided instead to wear his gory skeleton hoodie. He was happy.

Reluctantly, I took my son to school. I told him that I was proud of his bravery. I told him that I did not have that kind of bravery when I was in 7th grade. I worried alot about what everyone thought. I admired his ability to express himself so boldly. Of course I couldn't resist the urge to remind him once again that if all went sour, he could wash his hair in the boys room. As I dropped him off at the front door of the school, Weston smiled at me and said,

"Don't worry Mom!"

I think in some strange way Weston was making a statement. I think he already feels like an outcast at school and what better way to overcome that pain than by embracing the "outcast experience". I am proud of my brave son. I do not know if he will come home in one piece, but he will come home knowing he dared to be different.

I think as a parent, this is one of my most difficult experiences ever! Come on 2 o'clock!

"Don't worry so much Lis," my husband said supportively, "He will probably come home with a pocket full of girl's phone numbers."

We will see.

Monday, March 12, 2012

"Maria Lin: 7 Things You Don't Know About a Special Needs Parent"

This is an article written by Maria Lin, she is an editor and mother of a child diagnosed with a disorder of the 18th chromosome. (Nicholas has a disorder of the 15th chromosome) This piece appeared in the Huffington Post and in light of my previous post, it resonates very strongly with me.

7 Things You Don't Know About a Special Needs Parent
(click on this title to view)

Friday, March 9, 2012

If You Judge People, You Have No Time to Love Them

It was Mother Teresa who said,

"If you judge people, you have no time to love them."

Lately, I have felt that many of the folks closest to me have been my harshest critics.

Why is it so difficult for others to understand the unending sacrifice and overwhelming stress that plagues a parent who is struggling to care for a child diagnosed with a life threatening disease?

Is asking for some patience, tolerance and understanding...in light of our unending hardships an unreasonable request? Mercy, love, forbearance...forgotten?

I think there are many parents of children diagnosed with special needs who feel similarly. And I wonder why? Why does this happen? What happens to us that closes us off to some folks and brings us closer to others, usually those who share our hardships?

It has made me think alot about judgement.

Why do we judge others?

What purpose does this serve?

Is it the end result of intolerance, ignorance, resentment, jealousy?

Here is what some folks have to say about the subject:

“Before criticizing a man, walk a mile in his shoes.”

“Criticism of others is thus an oblique form of self-commendation. We think we make the picture hang straight on our wall by telling our neighbors that all his pictures are crooked.”

“These people who can see right through you never quite do you justice, because they never give you credit for the effort you're making to be better than you actually are, which is difficult and well meant and deserving of some little notice.”

“When one experiences truth, the madness of finding fault with others disappears.”

“Because it strikes me there is something greater than judgement. I think it is called mercy.”

“We are all hypocrites. We cannot see ourselves or judge ourselves the way we see and judge others.”

“There will always be someone willing to hurt you, put you down, gossip about you, belittle your accomplishments and judge your soul. It is a fact that we all must face. However, if you realize that God is a best friend that stands beside you when others cast stones you will never be afraid, never feel worthless and never feel alone.”

Thursday, March 8, 2012

Track and Field for Weston

The middle school is offering a new after-school sport for students.

Co-ed Track and Field!

A new 6th grade teacher is heading up the sport. He is young and enthusiastic and Weston likes him.

I am meeting next week with the Special Needs Coordinator, Weston's Compass Room teachers and this new coach. We will discuss ways to help make Weston as successful as possible in this new endeavor.

We are hoping to help Weston socialize more appropriately with his peers, to help him make friends and feel more socially connected. In the past, group sports have been difficult for him. In sports like baseball, basketball or soccer, good social skills is a requirement, especially when working together as a team. Since Weston lacked these skills, he was not successful and would come home feeling sad and defeated. He felt like more of an outcast.

Most of these sports were played only by boys, boys like himself with high energy, another difficulty for Weston since he cannot regulate his energy. Being around others who are in high intensity mode just further escalated his lack of emotional control. Meltdowns were frequent.

But this is something different.

The events are individual.
There are many of them, so boredom is kept at a minimum.
It's outside!
There are girls (!) a much lower intensity level and no physical contact.....all good.

Weston is thrilled. As he matures, he is beginning to seek out activities that flow for him, that make him feel good about himself.

"Mum," he said, "I think I am really going to like this."

Monday, March 5, 2012

A World of Special Needs

When my son Nicholas was diagnosed with Prader Willi Syndrome, I was afraid.

I was afraid of the future, afraid of my son and his illness, afraid I would not be able to survive this overwhelming new lifestyle.

In an effort to understand this fear, I started to write. The words became my medicine, a way for me to diffuse this crippling fear, a way for me to fight back. I used these words to help me find my inner strength.

I shared these personal stories with PWSAUSA, our national organization.

Some of my stories appeared in our newsletter called the Gathered View.

It was here that I found I was not alone. There were many parents who felt similarly. It was this camaraderie, this sharing of thoughts and ideas, that helped me to feel empowered. These precious relationships gave me the courage to face the overwhelming hardships of raising a child diagnosed with a life threatening disease.

The Gathered View is distributed throughout the country and the world. Soon, I heard from folks in California who like me, knew these hardships and understood these fearful feelings. I began to realize that by sharing my pain, I was helping others. I was connecting with individuals from clear across the country.

 Eventually folks from England, Hungary, Australia and most recently, South Africa, have asked permission to share my stories. I am humbled,

And suddenly, realize that my personal struggles are not that different from the struggles of parents from not only this country but from all over the world.

With the creation of my blog, this feeling of global connectedness has increased even more.

I no longer feel so all alone.

The world feels somehow smaller.

This pain, this fear, this struggle to raise my unique children, has helped me to connect with people from different states, cultures and countries. It has helped me to understand them better. It has helped me to develop friendships with folks whom I will never meet.

It has helped me to find peace in this world.

I am thankful to both of my children for opening my eyes and bringing the world to me.

Sunday, March 4, 2012

Can you see the Deer in this Photo?

How about now?

A closer look?

This is a photo I took out of our family room window. Muffy started barking furiously and the brave deer bolted into the woods. There are 10 acres of undeveloped woodland behind our home.The land is owned by a 90 year old man who is unable to build on it. The parcel of land is surrounded by neighborhood homes. He has not figured out a way to get a road into his property. Yet, anyway.

So far, we are very fortunate to have nature at our back door. We have had our share of woodland visitors over the years: skunk, grey fox, coyote, fisher cat, wild turkey, owl, and hawk. Not to mention many species of birds, mice and even a few bats!

The boys played outside in the last slushy remains of the snow. Here's what happens when Dad helps make a snowman.

A six-foot giant frozen man, with a bucket on his head.

Thursday, March 1, 2012

More March 1

Home from school and ready to play in the snow

Nicholas on the small sledding hill in our back yard

Weston joins the fun

Sled preparations

Come on Mom, stop taking my picture!

More tolerant of "Mom the pain", and ready to help Dad shovel

This is what Nicholas calls his "Umizoomi" car, you may remember it from the summer?

To refresh your memory......in case you have forgotten.
Funny how you never know which toy your children will covet!
We have had this mini vehicle for about 10 years! 
For some strange reason, this little yellow car has earned a lot of mileage!
Perhaps we should consider purchasing some all season radials?

March 1

It is the first day of March and the first significant winter snowfall for the New England area.

A very unusual occurrence.....

It is not a nor'easter and only a few inches of snow is expected to fall, not exactly a whopper of a storm.

The boys have had no snow days this year! Boots, hats, snow pants and gloves have not been touched for much of the winter. Ski areas and sledding hills, deserted.

Our town will rarely call off school unless we are expected to receive a foot or more of snow. Today was no different and the boys were disappointed that they had to go to school.

They have their snow gear ready however, and are anxious to get home and play in the heavy, wet white stuff.

Nicholas ready to go.