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.

Saturday, April 30, 2011

Thanking Elizabeth and Ending Epilepsy

I know I talk a lot about the difficulties and challenges associated with raising a child with special needs. But there are also some very special gifts that I do not mention as often (why is that?).

Anyway, one of these special gifts is meeting other parents who also have children diagnosed with special needs. Most of these individuals, I have never met, and yet we share a bond of brotherhood. We have become like a sorority of soldiers. We are bonded by fate instead of birth, and although we do not share the same blood, we have shed much of it together on the special needs battlefields fighting some terrible beasts.

Elizabeth is one of these special individuals. She is a talented and prolific writer. She is one of the monthly bloggers at Hopeful Parents. (Check out her posts at http://www.hopefulparents.org/) She has published many articles and been a featured author in A Cup of Comfort for Parents of Children with Special Needs. She is a voracious reader, a baker, a sous chef and one hell of a blogger, check out her amazing and inspirational blog at http://www.amoonwornasifitwereashell.blogspot.com/.

Wordle: a moon

She is the mother of three beautiful children and is a fierce advocate to end epilepsy on behalf of her daughter Sophie.

About a year and a half ago she participated as a board member with the Epilepsy Foundation of Greater Los Angeles in a presentation to an organization called Women in Film. Along with two other women she told her story of Sophie, her diagnosis and their life together living with a seizure disorder. She had them moved to tears.

Her organization won the grant and Women in Film produced this amazing and very intense public service announcement. There are four of these videos. This is a campaign to END EPILEPSY. They will be featured on national television. To view the three other videos, go to YouTube and search END EPILEPSY.

So to honor this important campaign, to honor Sophie and Nicholas, and most importantly to thank Elizabeth for her contribution in creating this amazing awareness campaign.....here is one of the videos.

Thank you Elizabeth!

Thursday, April 28, 2011

Invisible Heroes

“I think heroes are people who do good or necessary things at great personal cost. Heroism must be judged by the courage and grit required to do what needs doing.”

Sound familiar to any of you?

These are the opening lines of the book Invisible Heroes by Belleruth Naparstek but the words could also best describe a parent of a child diagnosed with special needs.

From time to time, I stumble across great finds, tools that actually help me in my journey to raise my children. This book is one of those rare treasures.

I wanted to share it with all of you.

In her book, Invisible Heroes, Belleruth Naparstek talks about trauma, what it is and how it can affect us.

When my son Nicholas was born with Prader Willi Syndrome, I never realize that the difficult experience of his birth, the loss of a dream and the overwhelming fear of the future, had caused me to experience a deep and devastating form of trauma. I never realized how living day-to-day caring for my children with special needs had created a kind of constant traumatic lifestyle. I never realized the negative effect this stressed way of living had on my body, my mind, and my precious spirit.

I never realized, that like all of you, I had become an invisible hero.

In her book, Belleruth Naparstek explains how “overwhelming trauma creates such daunting fear and heart-stopping distress that it produces legions of heroes whose every day is a test of their mettle, commitment and courage.”

The author explains that the normal way of dealing with trauma is to talk about it. But because of the unusual way traumatic experiences are stored in the brain, traditional talk therapies may actually make symptoms worse, potentially causing flash backs, anxiety, depression, panic attacks and more.

I often wondered why from time to time I would feel this way, particularly after talking about the birth of my son.

She talks about the emotional aspects of trauma…immeasurable sorrow, deep grief, rage, numbness, shame and humiliation, loneliness, alienation, despair, helplessness, guilt, blame, regret, a heart ripped open, all of which I have experienced.

She talks about the behavioral aspects of trauma…isolation, disrupted relationships, over-control, avoidance of intimacy, substance abuse, addictive behavior, learned helplessness and my personal favorite, compulsive busyness.

She also talks surprisingly about some of the gifts in the rubble….like joy, compassion, heightened creativity, survivor power and spiritual connection. These gifts I also feel from time to time.

She recommends a type of relaxation technique that uses “guided imagery”…..using pleasant visual images and thoughts to replace the upsetting ones.

These imagery-based solutions use the right hemisphere of the brain-perception, sensation, emotion and movement-rather than the left side’s standard cognitive functions of thinking, analyzing verbalizing and synthesizing…Trauma produces changes in the brain that impede a person’s ability to think and talk about the event …Imagery uses what’s most accessible in the traumatized brain to help with the healing.”

She uses these tools as an exercise in helping to heal hurt hearts.

It is an interesting concept. The information she provides about dealing with trauma has been extremely valuable to me. The book is easy to read and full of valuable insights and tools.

The lifestyle of a parent of a child with special needs is filled with continuous heart-stopping trauma. There are EEG’s and surgical procedures, behavioral challenges and therapy sessions and of course the added stress of constantly advocating for our children.

 My good health is vital to the needs of my precious children so that I may care appropriately for them for the rest of my life. I have discovered lately that my overall well-being is directly proportional to how competent I am at diffusing the trauma I experience on a daily basis.

Invisible Heroes has helped me to realize that since I am so willing to try anything to help heal my children, perhaps I should consider doing the same for myself.

Every now and then I will get a good case of the PWB’s (Prader Willi Blues). These are times when I obsess about the syndrome. I obsess about fixing my child. I feel like I lose control over everything and spiral into a black fog-like depression. I withdraw from my family, my friends and the world. It is an overwhelming darkness that challenges my ability just to get out of bed in the morning.

In an effort to dispel the Prader Willi demons, I have tried creating my own “secret garden” in my mind. It is my own empowering version of  Belleruth’s “guided imagery”.

See my previous post titled: My Secret Garden.

You can view the full post today at http://www.hopefulparents.org/

Tuesday, April 26, 2011

The Weary Patient

I am happy to report that Muffy the Beagle is home from the hospital. The sad stillness of the house has been magically broken by the familiar wail of our beloved girl "Aaaaaaaaarrrrooooooo!"

The shaved square patch for Muffy's EKG
 Our highly anxious, chocolate-loving companion was released from the animal hospital yesterday minus some of her fur and most of her enthusiasm. Somewhat traumatized by her hospital stay, she is unusually subdued but overwhelmingly happy to be home.

The vet called me yesterday and explained that Muffy's EKG looked good and there were no signs of any seizures. In the background I could hear her familiar....


"That sounds like her?" I asked the vet.

"Oh yes," she said, "she is one of our most vocal patients. She is also however, very anxious here in this environment and I fear she may not be getting the rest she needs. If you would like to pick her up in an hour or so, that would be fine."

"Oh, thank you," I said, "my boys will be so happy to have her back home. As will I."

"I can understand, she is so very sweet," she said

Her shaved leg where an IV was attached
The vet explained that we should still expect Muffy to be very sick. By digesting the high amount of sugar and fat in the chocolate, she would most likely suffer from a condition called, pancreatitis. This happens when a dog's pancreas cannot adequately digest high levels of sugar or fat and becomes overwhelmed. The end result is nausea, vomiting, lethargy and lack of hunger in the suffering animal.

I thanked the vet and picked up Muffy after school.... with Weston and Nicholas in tote. Sure enough, as we entered the animal hospital, all we could hear was....


We brought her home amidst a flurry of wet doggy kisses and a furiously wagging tail!

True to the vet's word, Muffy is very still very lethargic. She did vomit a few times this morning. She has spent most of the day self confined to the cozy comfort of her crate.

Despite Muffy's sullen appearance, we have removed all of the Easter chocolate from our home!

Muffy's sad discourse has reminded me of my younger days when I enjoyed transforming my mother's house into a temporary field hospital for injured animals. And although I have gotten older with the passage of time, I guess not much has changed.

Monday, April 25, 2011

Muffy the Hound and the Horrible Easter Egg Heist

Easter and holidays can be very dangerous times for individuals diagnosed with Prader Willi Syndrome.

PWS causes individuals to have an uncontrollable appetite. Folks diagnosed with this syndrome will lie, cheat, steal and beg for food since their bodies do not let them know when they are full. They are always hungry, they are always looking for food. Combine this aspect of the syndrome with the over-abundance of easily accessible food during the holidays and a very dangerous potential exists for over-eating, stomach rupture and even death.

As I have mentioned in previous posts, we are very fortunate with Nicholas since he is 9-years-old and still not exhibiting the intense food-seeking characteristics that plague most individuals diagnosed with PWS. So far, we have locked our food pantry but food in the refrigerator and on the counters has been safe from pilferage for now. We know the strong food-seeking drive will come eventually to Nicholas, but in the meantime, we prepare for the worst and hope for the best.

So, while I was very careful about Nicholas's calorie consumption and food access this Easter, I had completely forgotten about our similarly disabled dog, Muffy.

Muffy is our Beagle dog and in previous posts, I have described her as a true representation of both of my children and their disabilities for I believe she suffers from both ADHD and PWS. In a previous post (Like Children, Like Dog), I describe an incident where she devoured an entire loaf of cornbread.

You would think, this memory would still be warm in my mind?
Unfortunately it was not, and Muffy the Hound heisted an entire basket of these...

Yes, Muffy the newly diagnosed chocoholic, ate about 40 of these delectable milk chocolate foil-covered Easter eggs, wrappers and all!

Large amounts of chocolate is poisonous to dogs.

During Nicholas's yearly Easter ritual of hunting for these delightful treats, I had witnessed Muffy's over-powering desire to find a renegade egg. She sniffed around the entire living room, like a heroin addict searching desperately to find a fix. True to her calling as a hunting dog, she immediately located almost all of the spots where these seemingly harmless morsels once hid.

I instructed the boys to be sure to collect all of the eggs, since Muffy seemed almost possessed in her search for one taste of the chocolaty goodness. I was pleasantly surprised to note that Nicholas had no desire to eat any of the eggs. This is truly miraculous for a child diagnosed with PWS to behave in this way. I can't help but feel like I have dodged a bullet for yet another year.

I neglected however, to remind both boys, to keep their baskets of eggs up high and out of reach of our crafty and conniving, chocolate-craving canine fiend.

And as a result of my negligence, Weston left his basket on the couch.

Muffy, the addict, did not miss her chance.

As Easter evening settled in, Weston nonchalantly came into my bedroom where I was relaxing after a busy holiday weekend.

"Hey Mom," he announced passively, "Muffy ate my whole basket of Easter eggs." He says this as if he has just described a rather boring event.

"What?" I gasp, jumping clear off my bed. "How much did she eat?"

"I don't know, but she just took a nasty poop outside. I think there may even be some pink foil shining on our front lawn." he says laughing hysterically."

It is now 9 pm on Easter evening, any thought of a relaxing night for me is now shattered into smithereens. I start to panic.

"What's the matter?" Weston asks, completely unaware of the potential for Muffy's possible demise.

Not wanting to upset him, I tell him I need to call the vet to get some medicine for Muffy since she may be very sick. I explain to him about the dangerous effects of chocolate on dogs.

Not wanting to seem like an alarmist however, I perform a quick google search on dogs and chocolate before calling the vet.

On the website, Dog Owner's Digest, I read this..

The problem, according to veterinary experts, is that eating a speck of chocolate leads a dog to crave more. It can mean that your dog will jump at a opportunity to get any type of chocolate, not knowing that certain chocolates are more lethal than other types. Larger amounts of chocolate, particularly of the most toxic type, can bring about epileptic seizures in some dogs, and in all dogs, can kill.

Why is Chocolate Lethal?

Chocolate contains theobromine. A naturally occurring stimulant found in the cocoa bean, theobromine increases urination and affects the central nervous system as well as heart muscle. While amounts vary by type of chocolate, it's the theobromine that is poisonous to dogs.

Ok, I think to myself, this is frightening. I search the house for Muffy, hoping to examine her. She is in her crate. She begins to whimper and pant. I go back to my computer to read about the symptoms of chocolate poisoning symptoms and find this.....

Symptoms of Chocolate Dog Ingestion and Poisoning

You can recognize that your dog has eaten a toxic dose of chocolate from the symptoms. Within the first few hours, the evidence includes vomiting, diarrhea or hyperactivity. As time passes and there's increased absorption of the toxic substance, you'll see an increase in the dog's heart rate, which can cause arrhythmia, restlessness, hyperactivity, muscle twitching, increased urination or excessive panting. This can lead to hyperthermia, muscle tremors, seizures, coma and even death.

Ok, so now I rush to the phone.

The vet asks me how much chocolate Muffy consumed and how much she weighs?

When I tell her, she explains that this is a sufficient amount to injure Muffy and asks that I bring her into the 24-hour clinic.

They examine Muffy and notice she is highly anxious. They give her a medication to make her vomit..and we wait. Of course, it is now 2 hours later and Muffy refuses to throw up.

As I wait in the pet hospital, I am overwhelmed by the unusual number of pet owners who bring in pets who have expired. Men, women and even a few children leave the facility in tears. I watch helplessly as these fellow animal lovers are unable to hide their sadness. I am at a loss for what to do or say.

The vet, finally approaches me and informs me that they would like to keep Muffy overnight for observation and an EKG.

I settle up the rather hefty fee with the receptionist and leave for home without my warm and loving family companion.

As I drive home alone in the dark, I think about the days events. I think about Nicholas. I think about PWS. I think about Muffy and her lust for the deadly chocolate. I think about the many people who left the hospital without their beloved pets.

I think about the meaning of Easter.

I am overwhelmingly humbled and drive myself home in tears.

Happy Easter

Happy Easter to all our readers!

Wednesday, April 20, 2011

"Masking" ADHD

Weston is filled with energy up to his ears and was diagnosed at 5-years-old with ADHD. He struggles every day to control his excess energy and impulsivity. In an effort to help Weston control his symptoms, we have tried diets, supplements, meditation, behavior management and several medication trials.

What has worked best by far, is medication. However, since Weston has also been blessed with an extremely high metabolism, long acting doses of these medications do not last throughout the day. In fact by 5 pm he is once again, hyperactive.

So, as a result, dinner and bed can be very stressful times for Weston as he struggles to control his hyperactivity. Usually it is Nicholas and Muffy who bear the brunt of Weston's excess energy level. Weston struggles too since he is not happy with his inability to keep his hands to himself.

Weston has however, become very good at finding his own coping tools. One of them you may remember is his IPOD, which he uses now as a tool to help him focus during dinner.

I am happy to report that Weston has discovered yet another unusual tool to help him to focus. It is believe it or not, a gas mask he purchased at the Army Navy store. That's right.....a gas mask! He discovered this cool military gear while we were vacationing in New Hampshire, and begged us to purchase it. He uses this mask almost every day. He even wore it as a costume for Halloween. It is only recently however, that he has discovered it's ability to help him to control his impulses.

One night after dinner, I was clearing the kitchen. Weston was his usual self... jumping around me like a jumping bean and terrorizing poor Muffy, who ran for cover into her crate.

"Weston, I said,"We have to find something to help you control all this energy at night."

"Why can't I stop it Mom?" he asked. I struggled to answer his question as I thought about how awful it must be to feel this way.

"Wait a minute," I know!" He shouts and runs to the living room to get his mask.

"This will help," he says, and puts on the creepy army gas mask.

I am amazed, as he puts on the mask and instantly collects himself.  His energy is subdued.  His spirit is calmed. He walks over to the living room and sits in the chair, a first for Weston.

The mask works like a charm.

I have absolutely no idea why the mask works so well. Is it because he can assume another identity? Is it because it is uncomfortable and it is simply the discomfort that helps him to focus? Honestly, I do not know. And while I must admit, it is a little unsettling to see my child walk around our house as if the end of the world is fast approaching, I am also incredibly happy just adding it to the list of unusual tools that truly help my son. I am indeed, thankful.

Perhaps someday I will write a best seller on the hidden benefits of IPODS and gas masks to mothers of young boys diagnosed with ADHD.

Tuesday, April 19, 2011

Pete's Pet Peeve

My husband works for a company that services large corporations and schools in and around the city of Boston. Needless to say, he spends a great deal of travel time on the roads and highways in the surrounding area.

As Pete traveled toward home this evening, he noticed a minivan equipped with a "school" placard and "pupil" license plates. The vehicle was driving erratically, darting in and out of several lanes of traffic. Since Pete was behind the vehicle, he could see the head of a small child sitting in the back seat. On the child's head was a tiny snow hat that bobbed around as the vehicle moved quickly from lane to lane.

Pete sped up to get a closer look at the name of the company who owned the vehicle. As he did, his speed registered 75-80 miles per hour as the van travelled along in the high speed lane of the highway.

"I was very upset," my husband explained to me. "If that were Weston or Nicholas in the vehicle, I would have been concerned for their lives."

Pete noted the license plate and called the transportation company from his cell phone.

"I am a concerned citizen," he explained to the woman on the phone. "I would like to report an erratic driver who is endangering passenger (and possibly children's) lives."

My typically mild-mannered husband was furious and intolerant of another individual whose actions put a child diagnosed with special needs at risk. Trust me when I say, it takes a lot to get my husband upset.

The woman on the phone thanked Pete for his call and explained that each employee has a GPS attached to their vehicle and they would immediately investigate this driver.

"I am glad I could help to advocate for this child, for I certainly would not be very happy if it was my child in that vehicle." Pete explained to the woman.

As Pete recounted his adventure to me, I think I fell in love with him just a little bit more.

Friday, April 15, 2011

New Life Saving Tools for Parents of Children with Special Needs

OK, lately I've been thinking a lot about important tools I could really use, tools to make me a happier, healthier mother of my two children.

Here's what I have come up with......

I need one of these...

How great would it be to have someone to drive us to all of our doctor's appointments, our school meetings, our 2 am visits to the ER? No more driving in Boston, no more negotiating the harrowing halls of the parking garage at Children's Hospital, no more rush hour traffic, no more finding a place to park. How great would it be to have a glass (or two) of champagne before Nicholas's next EEG or IEP?

Of course Weston would prefer to ride in a limo that looks more like this...

I think he would pass out in total shock, if I ever came to school and picked him up in this!!!!!

Me? I would much prefer one of these......

Then of course another important tool I need to make me a better mother, is one of these.....

Voila, warm delicious healthy meals prepared especially for us every night!

No more....
"Mom, what's for dinner?"
"Aw man, hot dogs again!"

No more staring in the refrigerator wondering what I am going to prepare for supper. No more searching for new recipes for something....anything different!

But most importantly, no more dirty dishes because of course we would have one of these.....

And to clean the rest of the house, I would need these.....

My husband and I would need to have some time alone together. So we would need someone experienced in caring for children diagnosed with special needs. Perhaps one of these?

Although I think both boys would prefer....

Now, to handle insurance companies and IEP's, I would need this......

What did you say? No occupational services available to Weston at school this year? I'm sorry, please let me introduce you to my new team!

What's that? The expensive seizure medication for Nicholas is not covered under our insurance plan? I'm sorry would you kindly speak to my new team of representatives!!!!!!

Then of course another tool I need .....to handle bills, grocery shopping, dry cleaning, school supplies, prescription pick-up etc...I would need one of these.....a personal assistant!

Oh, and to keep me healthy and in great physical shape.......

Although, perhaps, he is available?

Then, after a long day of diffusing temper tantrums and answering "but why?" questions, I need a tool for rest and relaxation, perhaps one of these...

And for entertainment......

 And for the kids to burn off their excess energy......this......

And finally, to help us plan for our many vacations... we would need one of these...

To help us find this.....

Imagine what life would be like to have more time......

For just this........It's a beautiful dream!

Wednesday, April 13, 2011

An IEP for Mom

Yesterday, my sister, Christine and I had a meeting with the assisted living facility where my mother currently receives care. As I was seated at a conference room table and surrounded by administrators, directors and nurses, I was suddenly struck by how familiar this scenario was to me. I realized it was like an IEP meeting for my mother!

Once again, I found myself plunked inconspicuously into the role of advocate, coordinating the care for my elderly mother who suffers from dementia.

During the IEP-like meeting, we review my mother's medications, doctor appointments and therapy services. We track her progress and make suggestions to improve the quality of her care. I smile to myself as I realize that I have been well-trained for this new position.

I ask questions, offer suggestions and interact with the staff. My sister, who does not have a child with special needs, and is new to this rather intimidating process, looks at me and wonders to herself....who is this woman?

I guess you could say "this woman" has been well groomed for this important new job.

As a mother of two children diagnosed with special needs, I have participated in hundreds of IEP meetings. I have met with thousands of doctors, nurses, specialists and physician assistants. I am on a first name basis with administrators in schools, hospitals and now assisted living facilities. I may not have signed up for this important position but I have most certainly been well trained for it.

Even my past life in the medical device industry prepared me effectively for this new life-saving role I have assumed for my family. It was here, that I learned how to negotiate with medial professionals. I learned how to sell idea's, how to explain, educate and most importantly...I learned how to seek to understand other's motivations and perspectives.

In my previous employment positions, I was completely unaware and oblivious to the fact that someday all of this "experience" would prepare me NOT for a position as a CEO of a company...but instead prepare me for a position as CEO of a family. A family with several generations who struggle with many medical adversities.

I guess it is not surprising to me that this challenging life has made me reaffirm my spiritual connection since I cannot help but feel like there was a lot of thought that went into preparing "this woman" for a future role of caregiver to the medically fragile individuals in her life.

I fear the first half of my life, I may have been asleep..... sleep-walking my way through life, assuming I was preparing myself for a role devoted entirely to myself.

Now, I must use the many experiences I have learned in my life, not to better myself, but to care for those in my life whom I love.

I am awake.

And although I do not make any money and there are no promotions or prestige in this new career of mine. It is perhaps the first time in my life, I feel I am doing exactly what I was born to do!

Monday, April 11, 2011

A Broken Phone Invention and Another Mom Intervention

You all remember this?

My crafty brother John's phone invention designed to prevent Mom from calling 911?

Well, it now looks kinda like this.....

Yup, Mom, frustrated because she couldn't reach any of us.....tore it apart. She tried to pry off the "super glued" covers. She banged the handset against the receiver, then hurled it across the room when it no longer worked. Thankfully, this time, she did not call 911. She just scared the crap out of a few nurses aides. My siblings and I knew something was wrong when our phones, once again, became silent.

Clever that she is..our mother continues to challenge our creativity and ingenuity. My brother John and I, determined to once again find a solution, found this on-line....

Once again with our handy dandy bottle of magic super glue, we glued down the "emergency" buttons.

We were unable however, to figure out a way to stop it from being thrown across the room.

Sunday, April 10, 2011

Old Man Winter Finally Releases His Grip on the Northeast

Finally at long last.......a warm and sunny weekend here in the Northeast! Ah, the warmth of the sun on our bodies felt long overdue as we enjoyed playing and working outside all weekend.

Muffy getting some sun on the warm driveway.

Weston doing the same......

Nick playing with his truck in the sand.

Better view.....

Weston finally able to burn off some energy and ride his bike.

The last remnants of snow over by my two burning bushes, a final reminder of the long, cold, hard snowy winter we had this year.

The warm weekend put smiles on all of our faces. The boys and Muffy loved it!

Of course, when we all came back inside..........................we were wiped!

Nick found his favorite pillow....Daddy, and Muffy found her favorite head to lick......Daddy once again!

Weston joining the fun!
Happy Spring to all our readers!