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.




Tuesday, May 28, 2013

I am Just a Girl

The greatest challenge I face, as a parent of a child diagnosed with Prader Willi Syndrome, is my inability to face my fear.

I am afraid.

I am afraid that if I neglect appointments, therapies or new treatment options, my son's life will suffer.

I am afraid if I do not make a better effort to manage his anxiety and resulting behavior, he will become a monster.

I am afraid, if I do not secure our home he will wander the neighborhood searching for food and instead find harm and danger.

I am afraid if I am not a "good enough" parent, my son will die.

I have been running away from this fear all of his life.

It has finally caught up with me.

When my son Nicholas was first diagnosed with this monstrous syndrome, I experienced a type of shock. I buried my fear by devoting my life to a constant state of movement. I figured if I stayed busy enough, I wouldn't have time to feel anything. Nick's complex medical needs made this warped philosophy a convenient reality.

I became selfless, devoting myself completely to my weakened child. This chaotic lifestyle took me to a lonely place where few folks in my life could relate. I lost friends and family members. But still I persevered. I tried to make sense of my suffering by researching many forms of religion and spirituality. Here, I was interested to learn that most, if not all of these beliefs shared a similar philosophical promotion of selflessness and a belief in its path to peaceful living and enlightenment.

The only problem was...I didn't feel enlightened.

All I felt was tired.

After much soul searching, I have discovered that perhaps my selfless intentions are somewhat misguided.

Am I being selfless because I truly want to be selfless?

Do I enjoy it and feel energized by the experience?

Or am I staying busy just to hide my fear?

These are difficult questions but I believe the answer is....

I am afraid.

I  am afraid if I allow myself to feel this fear, it will consume me.

So, I don a new persona. I compare myself to the likes of superheroes and soldiers and in the process I begin to lose myself. I bury my hopes, my dreams, and my health, so that I can better care for my son.

I have become a cartoon caricature and not a human being.

Last week, I got my wake-up call.

A visit to my primary physician indicated that I may be headed down the dreadful path of self destruction.

My blood pressure has begun to increase. I have always had low blood pressure. This shocking news made me think of my father who passed away suddenly from a stroke shortly after my first son was born. Realizing there was a good chance that I could face a similar fate, I did some soulful reflecting and found that my previous motto of "to do" needs to be replaced with a more healthy "to be" philosophy. If I do not find a more relaxed mindset, and do not take better care of myself, who will care for my children? This is, of course, my biggest fear.

I need to find my peace.

I realize however, that this will take some time.

I am considering things like exercise, meditation, and creating new hobbies. I am also visiting with a mental health professional who is well versed in the stresses associated with raising children with special needs.

I am learning that...

Before I can give selflessly to another, I must first be fearless in my understanding of myself.

I must realize that I am not a superhero or soldier, I am just a girl.

I am a girl with a very big responsibility.

I am responsible for the quality of life of a medically fragile child.

This responsibility often makes me tired and scared.

It is very OK to feel this way.

My son Nicholas has endured many medical, physical and emotional difficulties and yet he faces each one of these challenges with a sense of calm acceptance and fearless resilience.

It is this spirit that I need to embrace.

Ironically, it is my son who makes me want to become a better, more accepting human being.


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Friday, May 24, 2013

Technical Difficulties

I have been experimenting with some different formats for my blog and as a result, I am experiencing technical difficulties. I should know better.


I am not a member of the device generation, you know, children like Weston who were born with opposing game controller thumbs.

No, I, my friends am a technology moron.

But I am trying.

I am having trouble allowing and showing comments. So, it you are one of our unfortunate followers who left a comment that was lost in my blogger melee, please forgive me!

I am trying to rectify the situation and hope to have comments up and running again soon.

Hang in there dear readers!

Thursday, May 23, 2013

No Momsense

For the past 14 years, when it comes to my children and their health care...

 I am a No Nonsense Woman.

I have scurried them to hundreds of visits with doctors, therapists, and specialists, all in an effort to allow them to enjoy a  happy and healthy life.

I am like a Health Care Machine.

Unfortunately, however, I have not applied this same heightened level of health care mania to myself.

When it comes to me, I am a No Momsense Woman.

I put myself and my needs on a shelf, so I can better care for my children.

I have realized, lately, that this principle is not a sound one, since I am the soul caregiver of my boys. If something happens to me....who will be there to care for them?

The answer is frightening, and suddenly I realize that I need to do a much better job of caring for myself. I need to apply the same level of health care machine mania to myself.

I need to make a valiant and heroic effort to care for my own physical, emotional and spiritual health.

So, for the past few weeks, I have begun to make some personal changes:

I am eating better.

I am exercising.

I am trying to find some quiet time to myself every day, doing things like meditating, listening to music, and reading.

I am following up with all necessary doctor and dental appointments.

I am trying NOT to make drastic changes, but rather incorporate healthier habits into my busy lifestyle. As much as I want to believe there is no time during my hectic schedule for myself, there truly is, all it takes is a shifting of priorities....which has never been one of my strong points.

I must say, at first this new caring for myself attitude felt uncomfortable, but I am beginning to see some benefits already. I feel healthier and relaxed. I feel like for the first time I have empowered myself and unlocked a door I had closed for a very long time.


I am committed to caring for myself, so that God willing, I will be able to happily care for my children for a very long time.

 

Tuesday, May 21, 2013

Our Thoughts and Prayers are with you, Oklahoma

Our thoughts and prayers are with the citizens of Oklahoma who were effected by the devastating tornado on Monday.


The tornado was an EF5 with winds measured at over 200 mph.
It was 1.3 miles wide and left a 17 mile path of destruction.
It is one of the worst in US history.
 
 
Several schools were destroyed during the storm, with 37 lost lives, some of them children
 
 
If you would like to donate to the victims of this tragedy,
please click on the link below:
 
 
We are with you Oklahoma
 
 
For those of you unfamiliar with US states:
 
 

Thursday, May 16, 2013

Chore Delight

Lately, Nicholas wants to be a big kid.

He asked me if he could have some household chores to do, just like Weston.

Say what?

When we were searching for a new school for Nicholas, our advocate was unwavering in her desire to place Nicholas in a classroom with appropriate peers. She explained to me that he needed to be surrounded by children with similar abilities who would motivate him to learn.

I wasn't convinced. I was more concerned with finding an appropriate school and teacher.

Well, I must admit, our advocate was right.

I never knew just how right she was until now.

At school, there are several older boys and girls in Nick's classroom. They are very accepting and patient with Nicholas and his loving energy. He adores these children. They are mainstreamed into other classes for much of the day. When they do attend Nick's classroom, they enjoy helping the teacher with various classroom chores. Nicholas has noticed. He has begun to emulate many of their deeds, expressions and mannerisms.

At home, big brother Weston takes out the trash, clears the table, makes his bed and brings down the laundry. Nicholas has noticed this too.

He decided that like these older role models in his life, he is also a big kid and needs to have some big kid chores.

Without a doubt our advocate was right.

Nicholas is motivated by the older children in his life.

He is ready to mature to this his next level of development. Importantly, however, these new skills are achievable for Nicholas. They help him to feel like he truly belongs within this community. For Nicholas, this belonging and "ability to achieve" has helped alleviate his anxiety and create a deep sense of fulfillment and enjoyment of his life.

He is a happy boy, once again.

So, in an effort to help Nicholas develop more of these big kid skills, we talked about what he might like to do to earn his keep around the Peters' household.

He decided he would like to feed the animals.

Who am I to argue?

He began his new responsibilities last night. He gathered the food dishes and pulled the cans and dry food out of the pantry. I helped him open the cans, but that was it. He put the food in the dishes and distributed the tasty treats to the appropriate furry friend, one to our dog, Muffy, the other to Bandit, the cat.

I have never seen a child so happy to be doing a chore in my entire life!

I am hoping Nick's desire to be responsible lasts a good long while and perhaps rubs off on his older brother who definitely does not share in the "doing chores" enthusiasm!

And me? I am thrilled to have such a motivated and enthusiastic helper and pretty darn glad to have one less thing to do around the house!

Sunday, May 12, 2013

Attracting Similar Energy

Weston had an appointment last week with his pediatrician. We have been visiting with Dr. George since Weston was first born. He has helped us to negotiate our way through sickness, health and a diagnosis of ADHD.
 
As I sat in the waiting room, I thought about how far Weston has come over the last few years.

Soon, a small boy and his mother arrived in the waiting room. The boy looked exactly like this....
  
 Weston at 2-years-old.
 
He was curious and active, wandering around the waiting room with his mother following closely behind.

"Hunter be careful," she said, "you can't put your hand in the fish tank."

He quickly turned and left the fish tank, heading, this time, to the bathroom where he began opening and closing the door.

"Hunter, don't slam the door," she said and gently lead him back into the waiting area.

I smiled to myself remembering when I too was chasing a little boy around the waiting room.
 
The boy spotted Weston sitting in his chair listening to music. He was mesmerized by Weston's presence and drawn to his energy. Like a moth seeking the warm light, he ran to Weston, placed his hand on his lap and tilted his head as if he was about to ask the surprised teen a question.

Weston was delighted by his attention. He showed the boy his ipod and asked him to push one of the button's. The boy smiled and began to hand Weston books and magazines from the table, eager for any response from the very cool-looking teenager.
 
 As I watched the exchange, it was almost as if Weston was playing with a younger version of himself. I told the new mother that it wouldn't be long before her son looked just like Weston.

The nurse came into the waiting room.

"Hunter?" she called and in a flash the little boy and his mother were gone.

"Aw Mom, he was so cute," Weston said, "It's such a bummer he had to go."

"You looked just like that when you were his age." I told him.

"I did?"

"Yep, you did."

"Mom, do you think he has the wiggles?" Weston asked.

"Well, I don't know but I am sure his Mom will be very happy if he turns out to be like you."

"I liked his energy." Weston said.

"Me too." I answered.




 
 

Wednesday, May 8, 2013

Dancing with Myself

For the past ten years, I have become so focused on caring for my children that I have completely neglected my own good health.

So, for the first time in a long time, I visited with my primary care physician. We talked for over an hour. She sat very quietly listening to me describe the unusually high level of stress that accompanies a lifestyle devoted to caring for children diagnosed with special needs. We talked about the emotional and physical toll it takes on a body and it wasn't long before she was completely speechless.

But my story seemed to motivate her into action and we devised a plan for my continuing care.

Unfortunately, it included several more of these:

 
I honestly believe I could wallpaper my entire home with the number of appointment cards I have collected over the past 10 years.

In an interesting twist of fate, I am the one who now has a long list of specialists to see.

My new job of caring for myself seems very strange to me. I keep looking in the backseat of my car to see if I have forgotten someone.

This new focus on myself, while strange and uncomfortable has also given me a renewed sense of freedom. I am beginning to find my old self once again.

I have been performing this medical dance with my children for so long that I feel almost liberated, like I am at long last......dancing with myself.

Monday, May 6, 2013

Nature Lessons

This little animal came to visit us this morning.
 

She stood in the woods, by the edge of our lawn. Muffy was on her leash and barking up a storm. But this gentle soul was curious and did not run away. I walked slowly toward her and took this photo. Muffy began to increase the intensity of her barking and as I spun around to quiet her, the deer turned and pranced away, her white tail bobbing through the forest.

The sight of her, took my breath away. The loud noise inside my head was quieted, my spirit stilled. I thought for a moment that she might let me pet her and I was tempted to follow her on her journey through the woods.

I believe in the interconnectedness of nature...that visits from wild animals who share our planet are not coincidental...that there is much we can learn about ourselves and the world if we stop and listen to the lessons they teach us.


"By observing the ways in which deer behave, it is possible to see what amazing qualities - or powers - they possess. From the deer we can learn that the gift of gentleness and caring can help us overcome and put aside many testing situations. Only love, both for ourselves and for others, helps us understand the true meaning of wholeness...

If a deer crosses your path, this may show you that you are a very compassionate, gentle and loving person. If you don't have these qualities, then consider if you have a problem that needs addressing. Are you facing a challenge in your life, whether with a fellow human being or a delicate situation? If you are feeling negative emotions such as anger, try letting go. Think about whether a gentler and more loving approach can sort the issue out. It may be necessary to speak the truth, this is best done with kindness and from the heart, this will generally give a better result...

Deer teaches us how powerful it is to be of gentle demeanour, to exert keen observation and sensitivity. Deer's are in tune with nature and all it comprises. They are sacred carriers of peace and show us how to open their hearts and love unconditionally."

By Ina Woolcott