This month has been a difficult one for parents to watch the news. We have had mass shootings, a kid falling into a zoo enclosure with a dangerous animal, and an alligator dragging and killing a two year-old boy at a lagoon in a Disney resort. It is enough to drive any parent insane. However, the real tragedy is the judgment of people on social media about these incidents. As if the parents are not going through hell already, they are being charged with neglect, incompetence, and lack of parenting skills.
First of all, those of us who have children know that it is so easy to lose sight of them no matter how hard you try. Kids can escape your view in a blink of an eye. Secondly, in both situations the parents were actually doing something fun and sacrificing their time and money to make fun happen for their child. Thirdly, how many of us can honestly say we have never made a mistake? Especially when on vacation?
I am sick and tired of parents who think they are perfect. There is no such thing as a perfect parent. All parents are just trying to do their best. These events are just tragic accidents and they should be treated as such. We need to stop being so critical of one another. There is no way we can say, "That would never happen to me." Fact is...you can very well wind up in the headline news over something tomorrow!
*****************************
Judge not, lest ye be judged
*****************************
Friday, June 17, 2016
Thursday, May 19, 2016
New Beginnings
Don't you just love new beginnings? The chance to start a new adventure has always fascinated me. However, sometimes change can be so hard, and not knowing what lies ahead can be scary. The other day I was reminiscing about my childhood and all of the adventures I faced as a child. I wish my children would have had the opportunity to move around like I did. I know this is going to sound cruel, but I also wish they could have faced some of the obstacles I faced. They made me who I am and taught me to be a stronger and better person.
When life throws curveballs at you, it's hard to see beyond the moment. It is almost impossible to see the endless possibilities. That has been my life for many years. I was thrown a few curveballs with my children. I was thrown a few more with my health. I have been thrown another one in recent days. It will be okay. Things usually work out.
I want to challenge everyone to take a closer look at your life. Is there anything you can change for the better? If so, don't hesitate. Start now! What is keeping you from reaching that goal? I recently started a new chapter in my life and I am so exited! It is a lifestyle change that I hope to continue for the rest of my life. I will be posting more information about that soon!
When life throws curveballs at you, it's hard to see beyond the moment. It is almost impossible to see the endless possibilities. That has been my life for many years. I was thrown a few curveballs with my children. I was thrown a few more with my health. I have been thrown another one in recent days. It will be okay. Things usually work out.
I want to challenge everyone to take a closer look at your life. Is there anything you can change for the better? If so, don't hesitate. Start now! What is keeping you from reaching that goal? I recently started a new chapter in my life and I am so exited! It is a lifestyle change that I hope to continue for the rest of my life. I will be posting more information about that soon!
Monday, February 1, 2016
The Joys of Adolescence
Although children do not come with an instruction manual, I am convinced that when they reach a certain age there must be a secret book that they read while parents are asleep or something cause inevitably they start to behave alike! This is the case with adolescence. The magic number seems to be 12. They think they know more than you and want to be independent. However, they still want to leave the lights on at night and be reassured you are there when they get home from school. It is kind of sweet if you think about it. They still need you...they just don't want to admit it.
My daughter who has Wilson's Disease is at that age right now. One of my biggest challenges at the moment seems to be getting her to take her medication. All of a sudden she doesn't want to be compliant! Her meds are expensive!! That is why it really bothers me when I see pills lying on the table or counter hours after I give them to her to take. Of course that is not the only thing that bugs me. The fact is that these meds are what keeps her healthy. Without them she could potentially have liver failure. She would most definitely get sick. However, at this age most kids feel invincible. There is nothing that can happen to them. Thank goodness for parents. Right?
I have been doing my job well...probably too well. She hasn't felt the pain associated with having a diseased liver. In her mind she cannot comprehend getting sick. I have to admit that sometimes I forget too. Days go by and I realize that she has not taken her meds. The one time I usually get vigilant is probably about the time she is due for her checkup at the Children's Hospital with her GI and Liver Specialists. It is a yearly reminder for all our family of that elephant in the room.
If any of you reading this are having issues with your adolescent or pre-adolescent then please know you are not alone. Our grandparents went through it. Our parents went through it. We are going through it, and our children will definitely go through it with their own kids. It is a rite of passage for us just as much as them. They say attitude is everything. Let us find joy in the journey.
**************************************
If you look hard enough, there is joy
to be found in everything...including
trials.
**************************************
My daughter who has Wilson's Disease is at that age right now. One of my biggest challenges at the moment seems to be getting her to take her medication. All of a sudden she doesn't want to be compliant! Her meds are expensive!! That is why it really bothers me when I see pills lying on the table or counter hours after I give them to her to take. Of course that is not the only thing that bugs me. The fact is that these meds are what keeps her healthy. Without them she could potentially have liver failure. She would most definitely get sick. However, at this age most kids feel invincible. There is nothing that can happen to them. Thank goodness for parents. Right?
I have been doing my job well...probably too well. She hasn't felt the pain associated with having a diseased liver. In her mind she cannot comprehend getting sick. I have to admit that sometimes I forget too. Days go by and I realize that she has not taken her meds. The one time I usually get vigilant is probably about the time she is due for her checkup at the Children's Hospital with her GI and Liver Specialists. It is a yearly reminder for all our family of that elephant in the room.
If any of you reading this are having issues with your adolescent or pre-adolescent then please know you are not alone. Our grandparents went through it. Our parents went through it. We are going through it, and our children will definitely go through it with their own kids. It is a rite of passage for us just as much as them. They say attitude is everything. Let us find joy in the journey.
**************************************
If you look hard enough, there is joy
to be found in everything...including
trials.
**************************************
Thursday, August 13, 2015
Nobody Cares
Are you a movie star or model? Are you going to be in a reality show? Is a government agency that could potentially take away your children going to visit your home? If you answered "no" to all these questions then I want you to consider the fact that NOBODY CARES if you are not a size 2. NOBODY CARES if your home is not immaculate. NOBODY CARES if your children's room is untidy. The fact is that moms are too hard on themselves. Moms need to prioritize and value their time. Time is so precious. It comes and goes, and there is no way to get it back.
Now that school is starting back, I just wanted to remind everyone to chill and stop being so hard on yourself. You are human...perhaps you have ambitions to be that "Supermom" that everyone raves about. However, at what expense? Keep realistic goals for yourself. Make sure to take time out for yourself. Only then can you be there for everyone else.
Now that school is starting back, I just wanted to remind everyone to chill and stop being so hard on yourself. You are human...perhaps you have ambitions to be that "Supermom" that everyone raves about. However, at what expense? Keep realistic goals for yourself. Make sure to take time out for yourself. Only then can you be there for everyone else.
Tuesday, June 16, 2015
The Summer Challenge
Summer is a time many families look forward to. However, it can bring about so many challenges for families with children who have autism. The biggest challenge is structure...or lack thereof. Children on the spectrum need structure. They get anxious when they have no idea what is happening from day to day or hour to hour. Camps are usually out of the question, unless they are designed for children with special needs. Summer programs can be costly. Finding children for get togethers or play dates can also be difficult. What do you do?
Here is some food for thought followed by a list of ideas that I have personally tried and found successful:
1) Plan way ahead of summer. You do not want to wait until summer to figure out what is offered in your area.
2) Think outside the box...or even your city. It is worth a thirty minute drive or more for your child to receive something you don't have locally.
3) Ask your friends or anyone you know for ideas.
4) Try to find out what your child is interested in and is good at by exposing your child to a variety of things. You might be surprised.
5) Try to be flexible. Do not overfill the calendar.
These are specific ideas broken down by age/maturity level:
Preschool: If you are a parent of a preschool child then consider continuing preschool through their summer program if it is offered. Although summers tend to be less structured, they still have consistency and that is key! Get together with other parents and try to do something weekly such as meeting at the park, pool, or going to fast food indoor playgrounds. Take turns meeting at different homes to provide social opportunities for you and your child. This is a fun age. Remember that they get excited about the smallest things as long as YOU are excited! Tell your child that you are going on a scavenger hunt and print off a list of items that you two can find while on a nature walk or a hike. Take notice of the things you see along the way and talk about them. Another idea is doing a backyard "safari". Get magnifying glasses and see how many creatures and wildlife you can find in your own backyard! Pinterest has some awesome ideas. I saw one where you get a large plastic tub and fill it with toys and then with water. Freeze it. Then take it outside and do an archeological "dig" to get to the toys inside the ice! Kids this age just LOVE sidewalk chalk.
Elementary: Kids are now a little more self aware. It might be harder to keep them occupied. You need to get some teaching resources to maintain their level in reading, math, and writing. Try to give them learning opportunities. Check your local library for Summer Reading programs or other special programs they may offer. Visit some historical sites or museums in your area. Take a tour at a local factory or other company that offers them. Invite friends over for a lunch/ dinner and a movie. Make cupcakes or pizzas with your child. Let your child do the measuring of ingredients by following a recipe. Play their favorite board game or just design your own. Science experiments using household items are a huge hit! Google for more ideas.
Teens: This is a challenging age. Going to the pool saved me during these years. However, on a rainy day you are stuck. If your child is a reader then you are set! Since they are a little more independent this age can also be so much fun. Whatever you do, do NOT call a get-together with a friend a "play date"! Ever! Go to a movie. Take advantage of Summer matinee deals around your area. Go bowling. Plan outdoor adventures such as a trip to the lake, canoeing, camping (when weather is mild). This doesn't sound like fun, but give them chores with rewards. This will save YOU in the long run. Plus, accountability is key to rewards and fun.
Hopefully this gave you some ideas and food for thought. Every child is different and so is every parent. There is no right or wrong. There is only what works for you. If it works, then it is right.
Here is some food for thought followed by a list of ideas that I have personally tried and found successful:
1) Plan way ahead of summer. You do not want to wait until summer to figure out what is offered in your area.
2) Think outside the box...or even your city. It is worth a thirty minute drive or more for your child to receive something you don't have locally.
3) Ask your friends or anyone you know for ideas.
4) Try to find out what your child is interested in and is good at by exposing your child to a variety of things. You might be surprised.
5) Try to be flexible. Do not overfill the calendar.
These are specific ideas broken down by age/maturity level:
Preschool: If you are a parent of a preschool child then consider continuing preschool through their summer program if it is offered. Although summers tend to be less structured, they still have consistency and that is key! Get together with other parents and try to do something weekly such as meeting at the park, pool, or going to fast food indoor playgrounds. Take turns meeting at different homes to provide social opportunities for you and your child. This is a fun age. Remember that they get excited about the smallest things as long as YOU are excited! Tell your child that you are going on a scavenger hunt and print off a list of items that you two can find while on a nature walk or a hike. Take notice of the things you see along the way and talk about them. Another idea is doing a backyard "safari". Get magnifying glasses and see how many creatures and wildlife you can find in your own backyard! Pinterest has some awesome ideas. I saw one where you get a large plastic tub and fill it with toys and then with water. Freeze it. Then take it outside and do an archeological "dig" to get to the toys inside the ice! Kids this age just LOVE sidewalk chalk.
Elementary: Kids are now a little more self aware. It might be harder to keep them occupied. You need to get some teaching resources to maintain their level in reading, math, and writing. Try to give them learning opportunities. Check your local library for Summer Reading programs or other special programs they may offer. Visit some historical sites or museums in your area. Take a tour at a local factory or other company that offers them. Invite friends over for a lunch/ dinner and a movie. Make cupcakes or pizzas with your child. Let your child do the measuring of ingredients by following a recipe. Play their favorite board game or just design your own. Science experiments using household items are a huge hit! Google for more ideas.
Teens: This is a challenging age. Going to the pool saved me during these years. However, on a rainy day you are stuck. If your child is a reader then you are set! Since they are a little more independent this age can also be so much fun. Whatever you do, do NOT call a get-together with a friend a "play date"! Ever! Go to a movie. Take advantage of Summer matinee deals around your area. Go bowling. Plan outdoor adventures such as a trip to the lake, canoeing, camping (when weather is mild). This doesn't sound like fun, but give them chores with rewards. This will save YOU in the long run. Plus, accountability is key to rewards and fun.
Hopefully this gave you some ideas and food for thought. Every child is different and so is every parent. There is no right or wrong. There is only what works for you. If it works, then it is right.
Friday, February 13, 2015
Parenthood
I have recently discovered the series Parenthood. I am definitely hooked! For those of you who have never watched it, I will give you a short synopsis: it is about a single mom who decides to move back with her parents to get her kids, who are teens, out of a bad situation and get a fresh start. The plot unfolds as you are introduced to her three other siblings and their families. One of her brothers has a son with Asperger's....that is where I got hooked! The series does an extremely good job of showing what it is like to find out about the diagnosis and the roller coaster of emotions parents go through. The other thing the writers and producers do a great job with is the way the extended family and friends deal with this unique situation. I finished watching Season 1 on Netflix. I am excited to watch more. The characters and episodes are heartwarming and very relatable.
Watching this show has unleashed many emotions and memories. It has given me time to reflect on past events dealing with my own children. Each of them are so unique. It is no wonder I feel so inadequate. It was like starting all over again with each one. What worked for one did not necessarily work for any of the others. If only they came with instruction manuals! Right? That would make things so much easier. The one thing I could rely on was my support network of friends. I relied a lot on them back then. It was mainly knowing that I wasn't alone. There were also times when we just needed to feel "normal". The only way to achieve this was to surround ourselves with people who were going through the same thing.
I am not going to lie. There were times when I cried so much that my eyes would swell up. There were times when I felt despair. There were times when all I could do was curl up in bed and sleep the day away. One thing you learn as a parent of special needs is to take it one day at a time. I learned to celebrate the little things. I still do.
It is sad to know that Parenthood is over. I always hate to see the ending of something good. However, the reality is that it lives on in the lives of every parent who is still struggling and fighting for their child. I want to thank the writers of this series for showing a glimpse of what it is like for us. I think they did such a good job portraying what it is like to have autism. The character Max was real. He wasn't exaggerated to make a point. His tantrums, OCD, and other quirks were showed in a very real way...sometimes it hit home a little too well.
*****************************************************
Being a parent is the hardest job you will ever have,
but the one with the greatest rewards.
*****************************************************
Watching this show has unleashed many emotions and memories. It has given me time to reflect on past events dealing with my own children. Each of them are so unique. It is no wonder I feel so inadequate. It was like starting all over again with each one. What worked for one did not necessarily work for any of the others. If only they came with instruction manuals! Right? That would make things so much easier. The one thing I could rely on was my support network of friends. I relied a lot on them back then. It was mainly knowing that I wasn't alone. There were also times when we just needed to feel "normal". The only way to achieve this was to surround ourselves with people who were going through the same thing.
I am not going to lie. There were times when I cried so much that my eyes would swell up. There were times when I felt despair. There were times when all I could do was curl up in bed and sleep the day away. One thing you learn as a parent of special needs is to take it one day at a time. I learned to celebrate the little things. I still do.
It is sad to know that Parenthood is over. I always hate to see the ending of something good. However, the reality is that it lives on in the lives of every parent who is still struggling and fighting for their child. I want to thank the writers of this series for showing a glimpse of what it is like for us. I think they did such a good job portraying what it is like to have autism. The character Max was real. He wasn't exaggerated to make a point. His tantrums, OCD, and other quirks were showed in a very real way...sometimes it hit home a little too well.
*****************************************************
Being a parent is the hardest job you will ever have,
but the one with the greatest rewards.
*****************************************************
Saturday, November 9, 2013
The Dreaded Health Insurance Letter
I contemplated on whether or not to share this with all of you. I didn't want this blog to become a political forum. However, this goes beyond politics. It reaches far deeper into the hearts of every American citizen and especially those with children with special needs. That is the reason I chose to post this entry.
It has been a long time since I have addressed the Wilson's Disease part of my family. I have not mentioned it because things have been going very well. My daughter is healthy and growing like a weed. She turned 10 this year and is blossoming into a beautiful young lady. We had issues with our insurance a long time ago when we were trying to get a diagnosis. Years later we had issues with her medication. It took an act of Congress to finally find a pharmacy that would file it for us and even mail it to our doorstep! Things were going FANTASTIC! But then....the Affordable Healthcare Act (a.k.a. "Obamacare") kicked in.
When I first heard about Obamacare I have to admit that I was skeptical. I felt like it sounded too good to be true. However, being the incurable optimist that I am, I just kept telling myself that things would get worked out. I felt like the media was blowing things out of proportion. I thought that all the stories I heard were the exception. NOW...I can testify to you all that the stories you hear on the news about people losing their coverage and having to change doctors and such is true! It's happening to me!! I want to shout out my story from the rooftops! I want everyone to know that it's just a matter of time before we ALL receive the dreaded letter in the mail from the insurance company.
First of all, our premiums are going up. In order to receive ALMOST the same coverage, we will have to pay almost $400 MORE a month! Our deductible is higher. Another change is that we have a copay for prescription drugs. However, that is just a drop in the bucket. We are self-employed. My husband has two employees and our income is very flexible from month to month due to the economy. That's the way it has always been. Although we probably qualify for subsidies, we are unable to do anything because all I keep getting is error messages in the website and I do NOT trust it! I refuse to put my trust in something that is not even functional!
Secondly, I was informed that I no longer can use the pharmacy that I had been using to get my specialty medication. Well...the problem is that the new pharmacy does not carry my daughter's prescription! I was horrified when I found out! How could that be? I called the insurance company and they told me that all I needed to do was call the new pharmacy and get them to do a "override" so that I could use another pharmacy. When I called them, they told me to call my insurance company for the override because they were not authorized. WHAT!! Now I was in a tennis match between the pharmacy and the insurance company. What was I to do?! All I could do was call the insurance company again and talk and plead my case. I decided that you get more bees with honey, so I was super sweet when I talked to the representative. The outcome? We are now waiting. I am at their mercy. My daughter only has about 2 weeks worth of medicine before she runs out. If something doesn't happen soon, we might have to pay for her medicine out of pocket. Very scary. It makes me wonder how many other families out there are going through the same thing we are?!
Lastly, I am sick and tired of people making excuses for lies and unkept promises made by the current administration. When are people going to wake up?! There is a great change happening to our country. We are going to see many outcomes come out of these changes....some of which I thought I would never see in my lifetime. There will come a day when we will see loved ones on a list waiting to get life-saving procedures. There are already those who cannot afford healthcare. What are they going to do? Will they be able to go to the ER of a hospital and get treatment? Or will the hospital just have to say, "Sorry...we can't see you today. Come back tomorrow." Worse yet, there are doctors that are deciding to have early retirements. There are doctors that are going to decide to take cash only patients. There are others who will decide not to go to medical school. What kind of incentive do they have? My own son is pursuing a career in the medical field. I hope and pray that he doesn't change his mind. We need great minds like his.
My dear family and friends, what our country needs....what we all need...is prayers. We need to pray for our country. I already see my country being ripped apart. There are those who are bleeding it dry. We owe so much money that I can't even count the zeroes anymore. When will it stop? What can we do to stop it?
***************************
Update to follow..........
***************************
It has been a long time since I have addressed the Wilson's Disease part of my family. I have not mentioned it because things have been going very well. My daughter is healthy and growing like a weed. She turned 10 this year and is blossoming into a beautiful young lady. We had issues with our insurance a long time ago when we were trying to get a diagnosis. Years later we had issues with her medication. It took an act of Congress to finally find a pharmacy that would file it for us and even mail it to our doorstep! Things were going FANTASTIC! But then....the Affordable Healthcare Act (a.k.a. "Obamacare") kicked in.
When I first heard about Obamacare I have to admit that I was skeptical. I felt like it sounded too good to be true. However, being the incurable optimist that I am, I just kept telling myself that things would get worked out. I felt like the media was blowing things out of proportion. I thought that all the stories I heard were the exception. NOW...I can testify to you all that the stories you hear on the news about people losing their coverage and having to change doctors and such is true! It's happening to me!! I want to shout out my story from the rooftops! I want everyone to know that it's just a matter of time before we ALL receive the dreaded letter in the mail from the insurance company.
First of all, our premiums are going up. In order to receive ALMOST the same coverage, we will have to pay almost $400 MORE a month! Our deductible is higher. Another change is that we have a copay for prescription drugs. However, that is just a drop in the bucket. We are self-employed. My husband has two employees and our income is very flexible from month to month due to the economy. That's the way it has always been. Although we probably qualify for subsidies, we are unable to do anything because all I keep getting is error messages in the website and I do NOT trust it! I refuse to put my trust in something that is not even functional!
Secondly, I was informed that I no longer can use the pharmacy that I had been using to get my specialty medication. Well...the problem is that the new pharmacy does not carry my daughter's prescription! I was horrified when I found out! How could that be? I called the insurance company and they told me that all I needed to do was call the new pharmacy and get them to do a "override" so that I could use another pharmacy. When I called them, they told me to call my insurance company for the override because they were not authorized. WHAT!! Now I was in a tennis match between the pharmacy and the insurance company. What was I to do?! All I could do was call the insurance company again and talk and plead my case. I decided that you get more bees with honey, so I was super sweet when I talked to the representative. The outcome? We are now waiting. I am at their mercy. My daughter only has about 2 weeks worth of medicine before she runs out. If something doesn't happen soon, we might have to pay for her medicine out of pocket. Very scary. It makes me wonder how many other families out there are going through the same thing we are?!
Lastly, I am sick and tired of people making excuses for lies and unkept promises made by the current administration. When are people going to wake up?! There is a great change happening to our country. We are going to see many outcomes come out of these changes....some of which I thought I would never see in my lifetime. There will come a day when we will see loved ones on a list waiting to get life-saving procedures. There are already those who cannot afford healthcare. What are they going to do? Will they be able to go to the ER of a hospital and get treatment? Or will the hospital just have to say, "Sorry...we can't see you today. Come back tomorrow." Worse yet, there are doctors that are deciding to have early retirements. There are doctors that are going to decide to take cash only patients. There are others who will decide not to go to medical school. What kind of incentive do they have? My own son is pursuing a career in the medical field. I hope and pray that he doesn't change his mind. We need great minds like his.
My dear family and friends, what our country needs....what we all need...is prayers. We need to pray for our country. I already see my country being ripped apart. There are those who are bleeding it dry. We owe so much money that I can't even count the zeroes anymore. When will it stop? What can we do to stop it?
***************************
Update to follow..........
***************************
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