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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.

The Nitty Gritty

3 Sep

Day 4 of my adrenal recovery is about to come to a close, and I am already feeling better. I know that it has only been a few days, but my body is responding well to the small shifts I have made.

I have no withdrawal from gluten, I have been off that for months now. I have no withdrawal from dairy, don’t know how that happened since I could live off of cheese for every meal of my day. I have had a bit of withdrawal from caffeine. I had given up coffee for quite some time, but still drank tea. I recently started drinking coffee again and hadn’t realized just how much it was kick starting me in the morning. I really struggled this morning to get myself going.

I believe that some of my cleansing has had an effect on my gall stones. I had a major attack today and my breakfast didn’t last too long in my stomach. A gallstone attack can leave you vomiting and doubled over in pain. I can get rid of them naturally and have opted not to have them removed surgically.

I am eating a ton of protein, so many vegetables, a good amount of fruit, but not too much. I am eating lots of beautiful complex carbohydrates and drinking water. I also am partaking in any and every opportunity to sleep. Today I had the afternoon off, it was just my oldest son and I. We had been up since very early this morning and had lots of running around that we accomplished. The afternoon was all ours, so we napped for 2 HOURS. It was lovely and I felt so much better afterwards. I am in bed every night before 11am,and I wake every day at the same time. I eat breakfast within an hour of waking, and it always includes a protein, good fats, and small amount of carbs and NO COFFEE OR TEA AT ALL.

It may sound fairly restrictive, but it really isn’t. We eat delicious meals everyday and never feel that we are missing out.

Here is my new favorite dessert.

Mango Yogurt Treat

1/4 cup good quality low fat plain greek yogurt

1 mango cut up into bite size pieces

cinnamon

honey

add the mango to the yogurt, drizzle with a small amount of honey and then sprinkle with cinnamon. Yummy and nutritious.

I have been struggling with one aspect of the ‘whole food, clean eating’ lifestyle I have now. I do not live near a Whole Foods or Trader Joes. The Farmers Market is an hour away with traffic. The local grocery stores do carry some organic fruits and vegetables, but they are very expensive. A year ago this wouldn’t even be a conversation. I definitely bought any thing I needed for my family at the grocery store, but times have changed. I can no longer afford to pay $6 for a teeny tiny container of blueberries, it’s just not a reality for our family in these times. We eat a ton of fruits and vegetables. I wash them as well as I can, but buying all organic is not in our means now. It does really wear on me, I want to provide all organics for my kids. I get really frustrated that in our country we make the healthy food out of reach for those who are struggling financially.

My children eat 3 square meals a day made from home. We don’t own a microwave and when we want to eat I prepare each meal from scratch. I have had to make the sacrifice that if I want my kids to continue to eat all the fruits and vegetables that they currently do then we just have to do the non organics now. I so strongly believe in all the micro nutrients that my kids get every day from eating a diet high in fresh fruits and veggies.

I know at some point in time I can change this, but I am grateful for the ability to feed my family.

I read this MindBodyGreen gratitude poster this morning. It spoke volumes to me and how I was feeling about being a good parent and providing a healthy life for my children. I realized quickly how lucky I am to provide for them at all.

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.

 

The Special Child

7 Aug

 

Dear my special child,

Today marks your second day of kindergarten, I can’t believe how far you have come. You truly are my special child, but not for the reasons found on your medical records.

You are a shining example of what it means to live from your heart. “He is such a love,” they said to me as you left the bus. Of course this I already know. Your “special-ness” can’t be seen on an x-ray or revealed through a blood test. Your “special-ness” resides somewhere much deeper.

A sense of peace comes now as I think about your future. I know that you walk on a path that was set in place before I ever held you in my arms. You are special in more ways than one.

I am so honored that you have entrusted me to care for you. I am so lucky to have such a special child to call my own.

You have exceeded all of my expectations and more. I am amazed by you every moment of every day. I am in awe of you. I am constantly in a state of wonder at the magnificence you possess.

Thank you for always giving me something to believe in and have faith in.

I love you forever my special child.

 

It’s Me Again

25 Jul

Over the past two weeks I have not felt at all like myself. As I mentioned in my last post I am waiting for results to see if I have an auto-immune disease that is attacking my thyroid. I have recently, almost 5 months ago, given up meat again and was starting to think I was not getting enough protein. Then the doctor slams me with the order that I am to take ALL gluten out of my diet. There goes all the fake meat I eat. I thought I didn’t eat that much gluten, but when you really start to look it is in EVERYTHING!!!

The last week has been interesting, but here is the cool part. I didn’t go through gluten withdrawal or get sick from not having gluten. I am craving more veggies and loving inventing new salads. To my joy I have also found that my skin is completely clearing up, this is something I have battled for over a year now.

I started to worry could I be a vegetarian and give up gluten, could I have it all? Yes, the answer is yes I can. I have really enjoyed everything I have cooked this week and have plans to get all the protein I need from veggies, nuts, seeds, beans, and fish. I am happy and feel so good about what I am eating.

Here is the crazy thing, I feel a million times better today than last week. I feel like a new person. I feel better than I have felt in years. Yesterday was still a rough day, but today I feel like I got a whole new body. I don’t know if it is from not eating gluten, but I suspect that has a lot to do with it. I feel like a million bucks.

I normally don’t write huge amounts about food, although food is what my life revolves around, but I think this is really something to think about. How much do we really need gluten products in our life? Can we not make food that doesn’t have gluten in it? I give my kids almost all gluten-free products, but occasionally it is okay for them. I have been doing this for years for my son with PWS, but now I am looking at it through new eyes with doing it for myself.

I am here to tell you that there is a whole world out there, and it is just full of non gluten products for you try. I think would think about the possibility of gluten intolerance or sensitivity  if you have any problems such as acne, gastrointestinal problems, lethargy, rashes, and especially if you are anemic. Give it up for just 2 weeks and see what happens.

 

 

 

 

Here is a recipe from tonight.

Easy mixed green salad:

Mixed baby greens

candied walnuts

dried cranberries

goat cheese

grilled tofu (marinated in Bragg liquid aminos)

red wine vinegar

extra virgin olive oil

 

Take the salad add the dry ingredients and toss. Lightly add the oil and vinegar and toss again. Then add a few small dollops of goat cheese and top off with the grilled tofu.

 

I promise this is yummy and gluten free.

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