Tag Archives: Genetic disorder

The Broken Glasses

22 Oct

I am always navigating through a crazy maze of trials in my life. Always trying to figure out if the “what is” now is “what it’s supposed to be.”  I constantly examine this concept with myself and especially my children.

Last Tuesday was an especially difficult day. I struggled through the day and my kids weren’t even home from school yet. Once my little ones arrived home things went from hard to climbing Mt. Everest. Blaise my sweet boy who has Prader Willi Syndrome and Autism was in a state of destruction. As dinner approached I asked my sweet angel where his glasses where. Very nonchalantly he responded that they are broken. The two of us found our way into his bedroom where he showed me both pairs of his glasses, broken, twisted and shattered in little pieces. I found myself cracking into those little pieces too. I lost my patience and started yelling, I hate that part of me that comes out when my soul cracks.

I screamed at him, “Why, Why, Why?”

He never answered, he didn’t understand what I was asking him. This led to the real issue. The glasses aren’t the issue, they are at the surface, they are the like the skin, they are just the part you see. The real issue was exploding inside.

Why can’t my son understand me? Why can’t my son be normal? Why doesn’t my sons brain work?

There it is the guts of it all. It’s the insides coming out, the organs and the blood.

Seven years of dealing with special circumstances doesn’t make it easier. Seven years doesn’t make those bitter moments sting less. Seven years doesn’t close the wounds. I have spent the last few years stuffing down my feelings and pretending that all is cohesive, tough but working. In reality it was all still there under the surface, inside a pressure cooker about to explode.

I found myself crying after my kids went to sleep that night. I cried for myself, I cried for the stress that his syndrome can create in me, but mostly I cried for him. I cried for what I thought was missing. I was quiet after I let it all out, I was quiet all through the days that followed. Something had opened up and I had to finally face it and deal.

I had to accept what is.

Image

Blaise accepts his life. It’s time I remember how to live more like him. Blaise doesn’t see failures or “lack of’s” in his life. He accepts things and does so with a smile.

I am working on accepting “the what is” now. I added into my ah ha moment that I can accept what is now and trust that things may look different in the future. I have to let go of what I think it is “supposed” to look like in my life, and my kids lives.

As the parent of a special needs child I tend to be on a roller coaster of emotions daily. Going through the struggles with my child. Walking the path of his life right by his side. It can be a daunting task. One thing I don’t need to add to my plate is judgement to what I think the picture of my child’s life should be.

I happily bought the little one a new pair of glasses. Hopefully this experience will have us both see a little clearer.

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Grant Me Strength

16 Sep

English: This is a photograph I personally too...

English: This is a photograph I personally took when Wayne Dyer came by my television station (KUSI-TV in San Diego) in March 2009. This is NOT a screen shot. (Photo credit: Wikipedia)

My heart breaks every time my son cries for food. I feel tremendous sadness every time my youngest son wants more of a treat can’t have it because of his brother. I wish I had more patience on the days where my little guy cries for hours on end and I can’t handle it. If only I could have as much compassion for my self as I did for others. I wish that when my house is messy I think the same thoughts I do when I see somebody else’s messy house, “this house looks lived in, they have busy lives.” I wish that I wasn’t always tired. I wish I didn’t wish for so much.

 

I am running on very little steam today and I don’t vibrate at a very high level when this is the case. I function on a lower vibration. This leads to confrontation, yelling, little patience, and ugliness that comes from within. It is such a strange sensation to intellectually know that your behavior is shameful, but emotionally you just can’t help yourself. It is like watching yourself in slow motion.

I keep thinking about sleep tonight and will it come with ease. I keep thinking about how Wayne Dyer says that the last 5 minutes before you drift off to sleep are the most important. What you say to yourself in those last 5 minutes will marinate in your brain, your body, your essence for the next 8 hours. I keep thinking about how tonight it will be incredibly difficult not to marinate in the bitter words I feel for what today has been like.

Tomorrow shall be a better day. This week is presenting itself already as full of challenges. All of this madness will culminate with my One Small Step for Prader Willi Syndrome on Saturday and my sister Jennifer’s “Manifestation Workshop” at my studio on Sunday.

God, Universe, Dad in heaven please grant me the strength to handle it all. Grant me the strength to vibrate on my highest level all week.

Careful When Judging

13 Sep

I normally do not rant on my blog, that is all about to change.

This is what I have to say. I am going to say it as loud and clear as possible.

When you are out in the world, at a restaurant, grocery shopping, driving in traffic, or at the doctor and you see a child screaming or a mother losing her cool and grabbing her child by the arm and being stern; BE CAREFUL BEFORE YOU JUDGE THEM. Be careful placing judgement upon others for you know not what battles they are fighting. 

It has been months since my family went out to eat. We went out for a bite at a local, casual restaurant. Very loud, very kid friendly or so we thought. At the end of the meal the waitress, who was very sweet, became very overwhelmed with her tables. A young man came in and was singing while playing the acoustic guitar, and a very unfriendly table had just sat behind us. Our little one was really struggling so my husband decided to take him home, and our oldest son refused to leave and stayed with me. He wanted to see the guitar player, but I had to wait for the check. All hell broke loose. He started screaming, the table behind us was in my face, and the large table of young 20 somethings was looking at me as if they should call DFCS on me for grabbing my son and walking away. Now my son is screaming at the top of his lungs and I put my hand over his mouth, at this time he proceeded to bite my hand, just narrowly missing breaking the flesh. All the while the entire restaurant was staring. Let me point out that this hasn’t happened to me in quite some time, and typically it doesn’t bother me, this time it did.

 

As I left the restaurant I wanted to walk back in and confront the 2 tables that were staring at me like deer in headlights. I wanted to say something like this.

“It isn’t polite to stare, but since you are let me break it down for you. This is my 5-year-old son. He suffers from a rare genetic disorder called Prader Willi Syndrome and autism. Although he may look “normal” to you, I assure you he is fighting many battles. Before you judge my behavior regarding how I handled my son you should know this. I only slept for 3 hours last night. My son is sick and when that happens his behavior becomes more than any of you could understand. My husband and I are in the middle of the most difficult financial time of our lives, and I am dealing with my mystery medical issues that seem to elude my doctors. I am human, I am not a robot. I have one child with PWS and autism, and a second with hyper-activity and mood dysfunction disorder. I may have looked like a crazy woman to you, but you couldn’t imagine that I have been up handling this since 4am today. As the parent of a special needs child we are “supposed to stay calm and not lose our cool.” Unfortunately for me I am not perfect and I do lose my cool on occasion, tonight was one of them. I can say this with absolute certainty. Most people in the world could not walk a day in my shoes, most people could not even begin to comprehend what a typical day is for me, let alone these days where things are just not going well.

Tonight I write not just for myself. Tonight I write for my thousands of extended family members. My family of parents/grandparents and caregivers of those with special needs. Tonight I write for them. Tonight I come to you and challenge you to this:

When you see a situation like me taking place, don’t stare. I challenge you instead to offer a hand, offer your heart and see if that parent or caregiver could use some help. I will tell you that a smile goes a really long way. A smile goes a really long way in the heart of a special needs parent in the midst of a crisis with their loved one.

“You must be the change you want to see in the world”-Ghandi

Help me spread the word and please share this blog with all of your friends.

Namaste and thank you for reading.

Joys of Motherhood

20 Aug

 

When my oldest son was born there were complications. I however always looking on the bright side believed that he would outgrow them. As time went on it was clear something was not right. When the verdict came in and he was finally diagnosed I was devastated. I don’t say this lightly, let me be totally clear on this.

On September 14th, 2009 at 9am, my world changed forever. I was shattered, heartbroken, and alone. Prader Willi Syndrome, what the heck is that? In reality it wasn’t quite like that because I knew what Prader Willi Syndrome was and I wanted to die knowing my son has this. I was standing in my driveway in my pink robe and I collapsed, I nearly knocked myself out on the pavement. It took every last bit of energy to pick myself up and walk in the door to inform my husband of the news. We sat and cried and cried. These weren’t your old run of the mill tears, these tears came from the deepest of deep spaces in our hearts, we felt as if we were sucked into the abyss.

When I finally collected myself I was filled with questions.

What will my son look like?

Will he be morbidly obese?

Will he fall in love?

Will he have friends?

Will he be bullied in school?

Will he ever talk?

Will he ever play sports or swim in a pool?

Will he live on his own and go to college?

What will his life look like?

This is just some of the things that were teeming through my brain like a swarm of African Honey Bees that have just had their hive destroyed.

I am feeling the tears well up in my eyes as I sit and read back the words I am writing. The emotions of that day still live inside me, they always resurface when I go back to that day in my mind.

It is almost 3 years since that day and life is quite different from what I imagined.  So different from what I imagined.

I need to add that not only does Blaise have Prader Willi Syndrome but he also is on the Autism Spectrum and has Sensory Integration Disorder. My life is never, ever dull.

I am not here to say that my life is easy and that my son’s diagnoses don’t impact our lives, they do, but our lives are good.

I wanted to share a few things with you that have happened to my dear son in the past few weeks. I share them in hopes that all the families who have children with special needs will read this and smile again. I share them as a glimpse of hope of what could be the future for all special children in the world. I share them as a reminder to never give up and let others dictate who our children are. I share them because I see first hand that our world is changing, and it is possible for our kids to live a life full of love, laughter, and happiness.

My sweet boy started kindergarten on August the 6th.

I couldn’t sleep the night before I was terrified. He was going to be in school all day long. I wondered how would he handle this, would he ask for food all day long, would he steal food from the other children? I actually had a nightmare that the parents of the children in his “typical” class wanted him taken out. I dreamed that they were mad that their children could not have treats because my son was in their class. Oy, I can’t begin to tell you how sick I was over all the emotions that were plaguing me.

The first day of school came, not a problem in sight. The second day of school came, even better than the first. This has been the case every school day for the last two weeks. Of course he has had a few major glitches, but so do all kids, ‘typical’ or not. Every time I walk into the school people ask me, “Are you Blaise’s mom? We love him so much.” You have no idea how much that means to me. My heart is over flowing with pride for my son. I had originally wanted Blaise to be in a ‘typical’ class all day long with an aide. It didn’t work out that way and truth be told I am absolutely fine with that. He does most of the day in a self-contained class and 2 hours in a general education class. He is doing great and I will not let my ego get in the way of that(note the hidden lesson here).

Last Monday I picked him up from school for his therapy session. We were walking down the hall and encountered the kids from his general education kindergarten class. They were all calling his name and waving at him in the hall. Then a little boy grabbed him and hugged him. I asked if they were friends and the little boy said, “Blaise is my buddy.” I can’t tell you how I almost fainted because I realized that not only was my son not getting picked on, he is accepted for who he was!!!!!!! Two days later the same thing happened as we left for therapy. This time all the kids were so excited to see him, and a new little boy was hugging him and saying that he was Blaise’s buddy.

How could I have ever imagined such love. I could only go on what I know and have seen in my life. When I was growing up kids were cruel to children with special needs. I am seeing such a difference in our young kids today, or at least the children who go to my son’s school. Just think these beautiful precious children can see my beautiful precious child for who he is inside, and not what he looks like, or what diagnosis he possesses.

As he gets older things might change, and he will probably encounter more unkind people in the world. I see something very special in my child, and I will remind him of that daily. If he encounters people who aren’t as kind to him he will have the strength to shake it off. My hopes are that he knows how loved he is and those folks just don’t matter.

I know this is a much longer post than usual, but I haven’t written in over a week.

I will leave you on this note. Here are some pictures of my beautiful son surfing this past weekend. Blaise and his dad went to Florida to participate in Surfers for Autism in Flagler beach, Florida. It was amazing and there aren’t even words to describe the pride I feel for my child today.

I am in a constant state of wonder at my son. He is determined to prove that he can do it all. It might take him longer, but he will eventually get there. I will be by his side the entire time.

I love you so much Blaise.

 

I’m Not Alone!

7 Jul

I typically don’t vent on my blog, and am definitely not in a place where I need a pity party. I am at a place where I need complete honesty with somebody other than just my family and super close friends.

I need to say it out loud and just declare it. I AM A GOOD MOTHER, but I don’t know how to parent my youngest child. I feel so alone. I know there will definitely be lots of people who read this and feel like I am speaking their thoughts as well.

Many of you already know that my oldest child has a rare genetic disorder called Prader Willi Syndrome. I read it described recently as the starvation syndrome. He also has sensory processing disorder and autism.

What many of you don’t know is that my youngest son has most recently been diagnosed with ADHD, a mood disorder (bi-polar) but they won’t call it that for his age group, and he is definitely exhibiting behaviors of Aspbergers.

I have spent the last 3 years wrapping my brain around PWS and Autism. I get it. I can work through it. I even get the ADHD even though it is so overwhelming and he is so frantic all day that I am worn out. What I don’t get, what I am struggling with, what I feel so alone with is the mood disorder.

I joined a support group for parents of bi-polar children. It has been amazing. What an amazing group of people. One of them suggested that I read a book entitled, “The Explosive Child  by Ross W. Greene. I want to cry as I read word for word what is a description of life with my youngest son.

In the book one of the mothers says, “Can you imagine being scared of your own child?” She then said, “I am!” My youngest son is only 3 years old and there are more days than not where I am scared of him, scared of his rages, scared of his violent temper. I am able to ignore now but I have had more than enough of people telling me how to parent him, spank him, discipline or reward him and so on.

Let me just get this out in the air. Children who suffer from mood or psychiatric disorders DO NOT RESPOND TO NORMAL CONSEQUENCES. I am not a bad mother and my son is not just a brat who doesn’t get spanked enough.

I love my son more than anything in this universe. I sleep with him every night and we cuddle and he tells me I am beautiful. His intelligence is unbelievable, and I love having unique conversations with him. I am however am emotionally drained. I feel in my heart that with my continued meditation and yoga that I can handle it, as devastatingly draining as it is. It is him that I feel for, I can’t imagine his soul feels good in such turmoil all day long. It’s almost like he is a prisoner in his little adorable body. When the rages come on, he just can’t stop.

I have decided to do is keep our house as organized as possible. I am on a mission to keep as few distractions for him and my older son. Today I went full force. I packed up almost the entire playroom. I have 4 huge bags for donation and the rest of unused but usable later in life are packed up and put away. I kept the swing in the room and some books and a few cars. This room will now be our quiet space. I will have a quiet space to meditate and they will have a quiet space to decompress as well. I am even thinking of adding some black out lights for a sensory experience. I am feeling really hopeful that this might be helping us move in the right direction.

I am writing this post for all the other parents of “Explosive Children” whatever your diagnosis may be. I am writing this to say you are not alone. I am writing this to say you are a GOOD PARENT. I am writing to say that it is absolutely ok to say that you need help. I am writing this to say it is ok to say you are depleted and need a recharge.

Through all of this I will keep researching and keep loving my son until I find what works for him. In the meantime for all the parents out there who know a family or a child like this, I ask that you have compassion in your heart when you are in your dealings with them. They are lovable and want to do well if they can.

I will not give up on either of my sons.

Teeth Extractions and Sleepless Nights

18 Mar

Over 2 weeks ago I had 5 teeth pulled

The last 2 weeks I have spent recovering from what I thought would be a simple procedure.

I realize now how important it is to take care of things when you are younger and your body heals faster.

During the last 2 weeks I spent many nights counting sheep-I mean listing and obsessing over the mountain of things that need to be accomplished in the near future.

1. I start Yoga Teacher Training in 2 weeks (Ok, I am more nervous about leaving my kids all weekend with somebody other than me)

2. Turn in the ginormous application to renew Blaise’s special medical insurance waiver(the thought of not having makes me want to cringe)

3. Plan my One Small Step Walk for Prader Willi Syndrome (this is finally coming true for me and I want to do all I can to make it successful)

Some of you might think that my list is rather small, it is actually a HUGE undertaking.

All of the things on my list are bringing up massive amounts of anxiety for me. I need to be successful at all 3 of them.

I need to complete all 3 of them with a specific deadline.

I need to complete all 3 of these things while handling all the regular life things that are static in my life.

I can’t make the doctor and therapy appointments go away. There is no laundry fairy who will come in my house and magically clean my clothes. I haven’t found a personal shopper, a chef, a nanny, or gardener as of yet.

So, the challenge is on.

 

I am challenging all my previous beliefs that I hold about what I am able to accomplish in my life.

I WILL SUCCEED

I ONLY HAVE ONE MANTRA RIGHT NOW. IT IS MY 3 WORDS ABOVE.

I have no choice. There is only one direction for me and it is always to keep moving forward.

I am tired, anxious, and a bit stressed now.

I am questioning my self, my life, and my capabilities.

What is getting me through these thoughts?

My sister Jen’s words, “Expect to be delighted.”

I am going to delight myself with all that I can do, with all that I am capable of.

The next 6 months are full of long days, crazy schedules, and a workload that I will be in awe of-but I will cherish every single moment of it all.

I am blessed beyond belief.

I am blessed to have such a full life.

I am blessed to have things that I care about.

I will remember that during my moments of wanting to give up, or give in.

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