Advertisements
Tag Archives: autism

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.

Advertisements
Quote

What to Learn from a 6 Year Old Who Has Autism « Positively Positive

28 Mar

Choosing something different. Choosing to shift, be different, move on, move forward, or live something new.

You don’t need to ask permission or wait for the okay. You just need to say the words. I’m all done now. I choose something different.

via What to Learn from a 6 Year Old Who Has Autism « Positively Positive.

Totally Worn Out

31 Aug
The adrenal glands sit atop the kidneys.

The adrenal glands sit atop the kidneys. (Photo credit: Wikipedia)

Turns out they found absolutely nothing in the last round of medical tests I had done. Great, and not so great at the same time. Yes, I am thrilled to find out that I am really healthy, not so great that we are back to square one trying to figure out what has caused my body to go a bit haywire. Other than low blood sugar I am totally in the clear. There is however one little test left. This one makes complete sense and probably a ton of you reading this have this and don’t even know it.

Adrenal Fatigue, oh yeah baby. My doctor thinks that it is possible I may have TOTALLY WORN OUT my poor little adrenal glands. Good news is this is not permanent, in fact you can have this happen over and over. It is fixable and that makes me happy.

Interestingly enough when I had researched my strange symptoms years ago it kept saying adrenal fatigue, I just shrugged it off. Although I don’t have an official diagnosis yet I am going to begin an adrenal recovery program and see if I can heal myself. I know this is completely possible.

So how do you get adrenal fatigue? Well that is easy.

STRESS, SKIPPING MEALS, NOT SLEEPING ENOUGH, AND PUSHING OUR BODIES TO THE EXTREME LIMITS

What are some of the symptoms?

All the time I am tired. Not just a little sleepy, it is more like so tired not even 12 hours of sleep cures your fatigue. I am not handling stress at all. I seem to get thrown off kilter with the slightest glitch. I have major digestive issues. I gained weight, and it is mostly all in the middle. I crave extremely salty food every single day. Everyday tasks seem to take the wind out of my sails, where as before I could handle anything that came my way. This is just to name a few of the odd things that I deal with daily.

We all face some type of stress in our lives. We have busy schedules, sick kids, work troubles, illness, and on and on. For some of us we have stress only on occasion and we are able to cope with the bumps in the road with ease. For others stress is chronic, that would be me, and you can bet your bottom stress like that will wreak havoc on your body.

I do as much as I can to stay calm and grounded but not all days are perfect. In fact sometimes I have an entire month of stress and I am a nervous wreck everyday. Being mom to one child with Prader Willi Syndrome and Autism and another child with ADHD and mood issues, I am on high alert from the moment I open my eyes. As the owner of a small business in this economy you do all you can not to pull you hair out. I like to fake it till I make it. I tell myself that we will make it, and funny thing is we have this far, I guess somebody is hearing my thoughts in the universe.

You can see why I love yoga so much. When I am in the studio and I take that first breath, ahhhhhh, I leave it all at the door. It is my time, my space to breathe. When I am in the studio all the stress of my life just melts away. I opened my studio on Wednesday. It was a small first class 4 people came, but an awesome time. I went in on Thursday morning with 2 classes on the schedule, not too surprised the nobody came, it takes time to start a business. I opted to go in my studio and enjoy my personal practice. It was amazing. A mix of meditative and restorative asana, with some energy building inversions and core work. I paid close attention to voicing my gratitude to the universe every time I brought my hands to my heart.

I am grateful for my strength. I am grateful for my courage. I am grateful for those who help guide me and hold me up in life. I am grateful for the breathe that fills my lungs. I am grateful for the ability to put my legs on the ground and get up and walk everyday. It is is truly amazing how a ‘attitude of gratitude’ takes the stress away, even if just for a moment. I will take as many moments of calm, quiet strength that I can.

My yoga practice is just one part of my adrenal recovery. Keeping my stress low is crucial to healing, without it all the other steps are in vain.

Along with a gentle exercise program, such as yoga, there is adequate sleep. Sleep is critical to the body to restore and replenish itself. Having a sleep schedule where you go to bed and rise at around the same time everyday will help restore balance in your body. This leaves us with another important area of recovery, FOOD.

We are capable of regulating what goes into our mouths. When in adrenal recovery we need to drastically reduce carbohydrates from our diet, mainly simple carbohydrates. It is still important to include complex carbs in our daily intake. Increasing protein and not limiting healthy fats is crucial to helping your body come back to life. We can’t forget about hydration. It is critical to drink at least 64 ounces of water a day, I will do more. Last but not least you must eliminate ALL CAFFEINE from your diet.

So basically life is about to get really fun for me. I will write everyday and let you all know how things are going. I will fill you in on what is relieving my symptoms and any new recipes that I create I will share.

Wish me luck. I hope that I can help lead the way for any of you out there who are in the same boat as I am.

We are Special

26 May

I received a message yesterday from my sister to call her right away. I was physically and emotionally exhausted but I called. As I listened to her on the other end of the line say, “My friend has a friend with a 5 week old baby just diagnosed with Prader Willi Syndrome, can you call her please?” Normally I would have hung up  the phone and called her straight away, however I live by the new principle of I CAN’T GIVE TO YOU WHAT I DON’T HAVE!  So I told my sister to give me 2 hours and that I would call her. I did call and left a message. Blaise then called her a few times too, haha!

We finally connected this morning and it was beautiful. It felt really amazing and interesting to be the one comforting. I sat and thought to myself what would I want to hear if my child was newly diagnosed? What would I say to me 3 years ago? What are the most important things to really get across?

So I started with the most obvious. Please allow yourself time to grieve. There is a grieving process and we often overlook it and the role it plays in the healing process. Then it was the obvious things to be HONEST. Here is the truth my son is amazing, Prader Willi Syndrome sucks but we are a pretty normal family, living a pretty normal life. I also found myself saying something that nobody said to me in those first few days. It makes such sense to me. FIND WHAT WORKS FOR YOUR FAMILY AND DO THAT! As long as your child is healthy, their labs are good and they are growing then you just do what you need to do to make your family work. I love how natural that felt. I love how it releases you from so much guilt over doing things the “right” way or the “wrong” way.

I shared honestly with this beautiful woman that there will be down days, but there will be so many up days. So many days filled with joyl

The most important things I found myself saying to her was very real and true to my heart. I told her the following:

AS THE PARENT OF A CHILD WITH SPECIAL NEEDS YOU LEARN TO APPRECIATE EVERYTHING even the smallest things mean so much. This not only applies to your child with special needs, but all your children. You take nothing for granted and learn to see the beauty in all the things that your kids do.

It all felt so natural coming out of my mouth,it all felt so real. When my sweet angel was diagnosed I was blessed to talk with 2 amazing people in that first day who have family with PWS. It was a life saver for me, it was my life raft because I was drowning in sadness.

Now I tell you this: 3 years later PWS is just a part of my life, it is my “normal.” I LOVE MY SON WITH EVERY OUNCE OF MY BEING. I don’t sit around and wish he didn’t have PWS I don’t him any other way. He is blossoming into such an amazing young man, and he and his brother are growing up to such amazing young men. I am blessed. My child says please and thank you, he tells me he loves me, and he smiles all day long. I don’t care what that genetic test says, he is perfect in my eyes.

Yes, I have my Broken Heart Syndrome moments, but they are getting less and less these days. As I am on my spiritual journey and deepening my love for myself and practicing loving myself, it is easier to accept all others around me. I love my child just the way he is PWS, Autism and all the rest of the wacky things that his body decided to give him.

Be grateful for everything. Even if it seems like a terrible tragedy or a terrible loss, it may really be a glorious blessing.

Be grateful for everything. Even if it seems like a terrible tragedy or a terrible loss, it may really be a glorious blessing.

I AM ONLY HUMAN….

14 Dec

I am only human, I am not….

Tonight was really hard. I am not going to lie. Let me just be blunt here for a second. I know that many of you out there have kids, and I know that many of you out there know what a screaming child is like. However, it is slightly different when dealing with a meltdown with a child with special needs. So let me just say for the record that today I HATE PWS and I HATE AUTISM!!!!! WITH A PASSION.

Can you imagine what it would be like to have your child crying for 4 hours straight. I don’t mean your typical run of the mill little temper tantrum. I mean full blown screaming fits, intermingled with crying that is so intense your child can’t breathe. Why you ask? Well, tonight it was because Blaise wanted his dad, who was coming home, LATER. In our house later is the dreaded word. You see my son is smart, smart as as whip, but he doesn’t understand the abstract concepts. So when I say later, all he heard was that dad isn’t coming right this second. Later might as well be next year as far as he is concerned. So you add that obsession with dad on top of a massive hunger fit and you have the perfect storm. No, wait…let’s add a dash of my youngest Maddock chiming in and creating a second stressful situation in the house. It is now 8pm by this time and all I can say is that I was on the verge of a full fledged….

Next stop ahead on the crazy train is Nervous Breakdownville. I might be joking about this now, but it was for real earlier. I really haven’t felt this way in quite some time. I was really frazzled, I mean physically experiencing a crack. By the time my husband did walk in the door, shortly after 9pm, I thought I was about to go declare myself 51/50 at the hospital(for those of you who don’t know that is where you take your butt to the hospital and tell them your crazy!)

When my husband walked in I literally wanted to throw the kids at him and run, as fast as I could. I wanted to hide, lock myself in a room somewhere and collapse. I really need a mommy time out.

People really when I tell you, please please listen up. If you have a friend who might have a child with special needs, or a relative, you can’t possibly understand what it is like for us. That is okay, all we ask is that you have empathy. Maybe even a little help, or in my case a lot of help. Maybe you could help your friend or family member out and babysit one night, maybe you could go to their house and bring them a cocktail 🙂 I really wanted something tonight, anything, any kind of life raft. Like I said, I haven’t had one of these moments in forever, by my god, it was so hard, and it really bleepin sucked.

I watch Michelle Duggar on t.v. with her 9 million children and she never raises her voice, she is always smiling, and always so joyful and happy. Well guess what folks, news flash, THAT AIN’T ME!!!!

After a day like today, there was quite a bit of yelling, screaming, and fighting in my house. By the end of the day my house is a disaster, my kids didn’t get a bath, we ate scrambled eggs for dinner, and I can barely see straight. You know what it’s all right. Tomorrow is a new day, a new chance to do it over again. My god, I love the new day idea, because to be completely honest. I HATED TODAY WITH A PASSION. Days like today make me feel like I am not a good mom, not patient enough, not following my behavioral training with Blaise well enough, not the best PWS mom, not the best autism mom, not the best doggy mom and on and on and on. Like I suggested earlier I am not Supermom, I am just MOM! That is totally okay with me. Guess what both my kids went to bed happy. Blaise went to bed happy to go see Julie tomorrow and Maddock actually put himself to bed, literally got in bed alone and said goodnight. So now it is midnight and officially a new day and I am feeling good. That Nina Simone song just got in my head.

It’s a new dawn
It’s a new day
It’s a new life
For me
And I’m feeling good 

All right dear readers. It is a new day, what are you feeling good about? I am feeling good about being a human. Oh yeah flawed and imperfect human 😉

%d bloggers like this: