Bloggy Moms

Monday, March 30, 2015

Can Ronald McDonald House Change My Mind?

Last week I wrote a post about how poorly my daughter and I were treated by a member of Ronald McDonald House Charities staff. You can read about it here. I emailed their San Diego office since that is who we dealt with. On Friday, I received an email response stating that they'd like to talk to me. Since it was late in the day I called back today.
I was given the director's business line and personal cell phone numbers. I knew this meant that they wanted to make things right. I called the company line first to see how receptive they were to my call. I figured if I didn't hear back in a reasonable time, I'd call the cell phone number next. When I called, I received a voicemail prompting me to leave a message. About ten minutes later, the friendly director called me back. What she said truly touched my heart. One thing that made me choke up was that she said that since she's been the director for just over a year they've had two cases like mine where they failed a family. Her reaction to that was that that was two incidents too many. Wow!
She wanted me to know that she was glad that she received my email on Friday because she needed the weekend to process this. It hit her really hard. In my family's hour of need, the Ronald McDonald House did not help but added to our stress. The staff's  desire is that the House to be a place where families can go check email, do laundry or have a warm meal. I really felt that this individual was genuinely sorry and that she wanted to make things right.
She informed me that she had read my blog and was going to use my experience as a tool to educate her employees about. Her desire is that all families be treated with dignity and respect. My situation is no less important than those of any other health crisis a parent of an ill child may be facing. She agreed with me that my daughter was facing a life threatening illness.
My daughter may not have cancer or kidney failure or need an emergency surgery, but that does not make her illness any less. I am very well aware that my daughter's Bipolar Disorder means that she has an increased risk of suicide. She's also got ADHD, OCD, and Autism that make things even more difficult. I'm fighting for her and others like her to defy the odds. The deck might be stacked against her, but I'm knocking it over.
The director ended our conversation by telling me how brave I was phone to her. She said that if it were her that she would not have made the call. I told  her that I am on a mission to make sure that our family's experiences doesn't happen to another family. I want things to be better for others. I let her know that I have the opportunity in a few weeks to speak to Congress about our nation's mental health crisis. I'm not going to be a parent that just complains, but rather one who helps to affect change.

This picture depicts what I hope more families experience when their child is ill, whatever the illness is.

Wednesday, March 25, 2015

Why I Won't Donate to Ronald McDonald House Charities

Today as I was driving through McDonald's to order my Diet Coke, the cashier asked me if I wanted to donate a dollar to the Ronald McDonald House. I politely said, "Not today." What I wanted to say was, "No. That will never happen until you change your policies." I was able to practice incredible restraint because I realized the cashier was just a messenger. She had no idea what my experience had been. Only a few people do.
That's all going to change today. Today is the day that I tell Ronald McDonald House Charities how they failed my child and I in our time of need. How they portray themselves to be there for all children, but they are in fact not.
Here's what I found at the Ronald McDonald House Charities' What We Do website page:

Helping a sick child fight their illness takes a big emotional toll on a family. Adding a financial strain can make it all almost too much to bear, RHMC can help address those problems, whether they involve housing that's near a hospitalized child, the expense of staying together in another city or even getting basic medical and dental care in a vulnerable city...."

This motto  certainly not true in our case even though we fit the criteria for their assistance.
In order to tell this story the way it was meant to be told, I need to go back almost two and a half years ago. During that time, my daughter was set to be discharged from a behavioral hospital over 100 miles from our house because even though we live in a metropolitan area there were no beds available to her. In our whole county, there are only thirteen beds for children in my daughter's age group with mental health issues who need hospitalization. We were told there were even fewer spots for outpatient treatment, something we considered crucial to helping my daughter achieve stability. The wait list to get into an outpatient facility 25 miles from our house was 2-3 months long. My husband and I knew our daughter needed immediate help. The facility that she had been staying at offered to keep her in their outpatient program, but we'd need to find a place to stay at night since the program only ran from 8 a.m.-3 p.m. on weekdays. Before I gave my final answer and agreed to this program, I asked if the hospital had a place they could recommend for us to go. The hospital suggested that I contact the local Ronald McDonald House since a children's hospital was not too far away. When I contacted the Ronald McDonald House's social worker, she informed me that it wasn't for children like mine. It was a place for children and families dealing with life-threatening illnesses. I told her that this was a life threatening illness. She informed me that the Ronald McDonald House was a quiet place. She worried that my child might wake or disturb the other children who were sicker than my child. After this final no, I asked if she had any alternatives for us. She sadly had no direction for me to go.
At the time, I was angry that an organization like this could turn away my child and I in our hour of need, but I did not contact McDonald's headquarters then because I was solely focused on getting my daughter stable.
This story has a happy ending though. We went to the local Ramada Inn where we were taken very good care of. The receptionist made sure we had the same downstairs room our entire stay there. This was intentional on her part since we gave up our "home away from home" on weekends while we went back to our regular home to practice the skills my daughter was learning. This receptionist made us feel at home in other ways as well. She genuinely had the gift of hospitality. Additionally, members of our church learned of this added expense and generously donated towards it and our gas money for weekend trips home.
Ending the stigma of mental illness begins with people like me telling our story so that others might have a better experience than we have had. I hope in the near future that organizations like McDonald's will do a better job of servicing children like my own. I really don't fault the social worker who told me no just like I didn't find fault with the cashier. Both of these individuals were just doing as they had been instructed to. Those in charge need to be educated more. That is precisely what I have done today.

Read about my follow up with the director of RMHC in San Diego here.

***A copy of this post is being sent to RMHC.

Thursday, March 19, 2015

One Lovely Blog Award

This morning I discovered that I was nominated for my first ever blogging award by Diary of an Imperfect Mom. To say that I am flattered is an understatement. I guess I am a  legitimate blogger now. I love how the blogging community really tries to encourage each other to do better.

As a "One Lovely Blog Award" recipient, I have to do three things:

1.) Thank the person who nominated me and link back to their blog (see above)
2.) Share 7 facts about myself
3.) Nominate 10 bloggers for the award!

Without further ado, here are 7 facts about me:

1.) This SoCal gal has never lived outside of a twenty mile radius. I do know lots of people who move away, but they all miss living here terribly.

2. ) I have two brothers. One lives in Hawaii and the other lives in New York. Due to lots of factors I've never been able to visit either one.

3.) I married my husband when I was 33. We've been married almost 17 years now. 

4.) After a series of misfortunes, one of which was my husband's bout with cancer; I had my one and only child three months before my 40th birthday. Our miracle child, a  daughter, is now 10. She is who I mostly blog about. 

5.)  I am a Christian who is learning every day how to love others.

6.) I taught for over 23 years but now I am a SAHM, educational advocate and blogger. 

7.) This is my big news that I've been waiting to share with those who read my blog. At the invitation of the American Academy of Child and Adolescent Psychiatry (AACAP), my daughter and I will be traveling to Washington, D.C. in late April to speak to members of Congress about mental health issues. As you can imagine, I'm thrilled about this. Stay tuned to this site in the coming weeks to learn more abut how you can support me in this endeavor. 

Finally, my 10 nominees are:

10.) Ketchup With a Side of Autism- You can find her here or here.
** You may also find all of these bloggers on Facebook.

I look forward to reading more about my blogger friends.

Tuesday, March 17, 2015

The Birds and Bees and My Special Needs Daughter

As my daughter enters puberty it is my prayer that she wait until marriage to be sexually intimate. I know that is not everyone's philosophy, but it is our family's.
I plan on teaching my daughter the benefits of waiting until her wedding night to give away one of the most precious things she has. It's not going to be easy though. She's got the deck stacked against her with her Bipolar Disorder diagnosis and a whole host of other co-morbid disorders. Bipolar by itself is enough to say it will be nearly impossible to wait. One of the characteristics of Bipolar Disorder is hyper-sexuality. This is certainly something we've seen when Princess was unstable. This means that my daughter is more likely to become sexually promiscuous or worse be taken advantage of by someone who has a skewed sense of what love is.
I am very concerned that my child could possibly have a child on her own and not be ready to raise it. I've talked with our therapist about my fear that I'd have to raise my own grandchildren. I've seen firsthand grandparents who are raising their grandchildren while they are in their golden years. Some of whom are exhausted. Many of these grandchildren are Bipolar themselves as it is is a genetic disorder. This translates into grandparents having a second round dealing with all of the challenges that having a child with Bipolar disorder encompasses.
One thing that I'm hoping is helpful to her is knowing that I was able to wait for marriage. Instead of telling her not to be like me, I can encourage her to be like me.
Of course, if she did have a child out of wedlock my husband and I would help her raise it. We would not deny that child love.
So what I am to do to ensure that my daughter have the best possible chance of having the most amazing wedding night like I did? For one, I am praying for her and asking others in my prayer circles to do the same. I am also talking about it with her on kid friendly terms. My husband and I are trying to protect her heart and mind from images and stories in the media that teach the opposite of what we are trying to instill in her. I'm working especially hard to keep the lines of communication open. This seems to be a key component to this.
I feel like Princess is still so young to be talking about her sexuality, but there are a few things pointing in the direction that I need to get my A game on. She is very bright and curious. She recently asked me what the word rape meant. She also asked me what the movie "Fifty Shades of Gray" was about. These are words and phrases that she hears on TV commercials, on the radio or even on the schoolyard. I answered her in a way that I felt was best without revealing too much too soon.
I shared our family beliefs that when man and woman are married, they are allowed to touch each others privates.  I explained that if someone were to touch her without her permission, that would be considered rape.
I do worry that a boy may say to her, "Well if you loved me..." I hope that she'll have the confidence to respond back with, "If you respect me, you won't pressure me." I also hope that she'll have the courage to get out of any relationship or situation that makes her feel uncomfortable.
Since my daughter has special needs, I have to take extra precautions with her by talking about scenarios and role playing her responses to them. This will need to be done many times over the course of her preteen and teenage years. I also bought her the American Girl book "The Care and Keeping of You 1: The Body Book For Younger Girls." We've read and discussed it together. When she's older, we'll read, "The Care and Keeping of You 2: The Body Book for Older Girls."
I'd like to be able to convey that sex is not dirty but rather a pleasurable experience worth waiting for.
I realize that even with all of these tools in place that my daughter could still lose her virginity before marriage or even end up unwed and pregnant, but I believe that having an action plan will lessen the chances of those things happening. The quote, "Failure to plan is planning to fail." has been attributed to Benjamin Franklin and Winston Churchill both of whom were very successful individuals. That seems like a good motto to have while discussing this intimate topic with my daughter.
One thing my husband and I want to make sure that we tell our daughter is that if she chooses not to wait, we will still love her. I'm working really hard to show my daughter that my love for her is not based on whether or not she does things that make me happy. I may not like all of her choices, that doesn't mean that I will love her any less.
My family and I covet your prayers as we enter this next season of parenting.

*** A book on this subject that I am currently reading is titled "Teaching Your Children Healthy Sexuality" by Jim Burns.

Tuesday, March 10, 2015

The Good Enough Mom

Almost every mom wonders if she's doing everything possible to benefit her child. Heck there is even this unspoken competition between us- The Pintrest Mom, The Soccer Mom, The Dance Mom, The Working Mom, The Stay-at-Home Mom, The PTA Mom, The Drama Mom.... Let's not forget The Special Needs Mom or The Autism Mom. These are the ones the rest of us can only dream to be. We try oh so hard, but that brass ring remains just out of our reach. Some women either work really hard at perfection or have that gift of making everything seem flawless. Their children are neat, clean and wear the best clothes. When my daughter took drama, there were moms who could pull costumes out of a hat at a moment's notice. The really good PTA moms hang out at school all day then rush home to prepare a four-course meal, shuttle their child to soccer practice while ending the day back at home so they can help with homework without even breaking a sweat. The examples go on and on.
I stopped trying to be one of these uber moms a long time ago because I just cannot keep up. I was breaking a sweat. I often worry, though if I'm doing enough for my daughter.  I won't say that I have lost sleep over it, but it is something that is lurking in the back of my mind. It's kind of like that mystery item in the back of your refrigerator. You know it's there but maybe by some magic it will disappear.
I finally came to the conclusion that I am "The Good Enough Mom." That may sound like I am putting myself down or lowering my expectations of myself. That couldn't be farther from the truth. After much soul searching, I realized that I have done right by my child. I was working full time and trying to parent a child who needed a child who needed a lot of help. When my child's problems started glaring at me, I stopped sticking my head in the sand like an ostrich and did something about it. I quit my job. I  became a Stay-at-Home Mom so I could get my daughter the help that she needed. When the public school was failing my child, I hired an advocate and educated myself. There was a time when we were trying to find the right medications for my sweet girl. I did not settle for less than God's best in the way of doctors.
Even though, I've done those things I still don't consider myself a Super Mom.
I realize that I'm doing this parenting thing right in the small moments of our days. Recently we sat side by side on the couch placing game pieces on our grocery store's Monopoly board. It was a sweet time that was more than just a game. Then yesterday my daughter apologized to someone that she'd offended. This was done on her own and in her own way even though she didn't feel that that person deserved her forgiveness. These are the most important moments to me.
My daughter may never win awards for her dancing prowess. She may never get a scholarship to an Ivy League university. The best that I can hope for is that she feels loved and that she is special.
I've decided that the only person whose rating of me as a mom matters is my daughter. She is who drives me to do what I do. Yep, The Good Enough Mom. I think that has a nice ring to it.

Monday, March 2, 2015

To Opt Out Or Not?

Well, it's almost that time again. Yep, the lovely state testing every parent and child waits for with eager anticipation. (Insert sarcasm here.)
For the past few years, my husband and I have chosen to opt our child out of this test. This year I thought that maybe we'd agree to let her take it. At our daughter's IEP in the Fall, it was suggested that we let her try taking it. Supposedly the test has accommodations built right in so we would not have to make an addendum to her IEP. We were told it'd be fun because it is given on the computer.
Fast forward to a few weeks ago. I received a phone call from my daughter's case manager asking if our daughter will be taking The Test this year. This is the second year in a row that we've received this phone call. Since Princess attends a school that is not in our district but is paid for with public funds, the district has to coordinate with the school as to how it will be given (dates, times. time frame etc.)
I asked my husband for his input on this because he knows more about it since he's taking classes to get his teaching credential. This test along with Common Core are hot topics in education right now. He said that he'd actually taken the practice test with a few of his fellow cohort students. He found the test to be very difficult but suggested that I ask for the link  to the practice test so that I could see for myself. So I returned the case manager's phone call and asked for the link. She did not have the direct link but referred me to the vice principal of my child's school instead. I'm pleased to say that I was given the link in just a few short hours after my request.
Once I got the link, I went on the site as a guest user. I started with the fifth grade math portion since that is the test my daughter would be taking. Wow! After only a few questions, I got confused. Now I'm no math whiz but I did make it through Algebra II and Geometry. I also taught fifth grade math for most of my 23 years as an educator. I guess Common Corre just passed me up. I've been out of the classroom for two years. Additionally I haven't taught fifth grade in six years. I'm much stronger in English Language Arts so I figured I'd do better on that portion. Nope. Not even close! The reading comprehension questions were beyond my comprehension.
The format of the test itself is confusing. Several of the questions ask you to underline the correct response. So now children are being asked to navigate their computers to help them answer the questions. I'm all for computer competency but to add this element to a test that is supposed to measure academic abilities is just too much. I'm told that students practice taking this test so that they are familiar with how to work it, but I'm not buying it.
Even after this epic fail I still wasn't sure whether or not I wanted my child to take this exam. After all, most of her peers would be taking it or so I was told. I didn't want my daughter to feel left out. I also felt a little bad that I could be making more work for the school by asking them to find an alternate place for my daughter while her classmates took the test. I did take into account the fact that taking this test could put undue stress on my child. She may or may not be able to hold it together at school, but she'd probably let it out at home.
Another thing my husband and I had to consider was how taking this test would benefit our daughter. Is it required for her to progress to the next grade level? No. Will it help her fill out job applications in the future like a friend of mine was told by her son's school? Perhaps but I don't think I know of any 5th graders who have jobs so I think she can learn that skill when she's in high school. Will it test her knowledge of subject matter? Yes but is it an accurate measure of that? No. Is this the only way that the school can measure whether or not my child is meeting the standards needed to progress to the next grade level? No. Since my daughter has an IEP she'll be tested yearly to make sure she is meeting her goals. Even if she didn't have an IEP there are plenty of other ways that her teacher can measure her mastery of core skills. Oh, I know we should give her this complex exam that will push her to her limits so that we can compare her to other children in the country. Nope, I'm not buying that reasoning. How does my child benefit from being compared to her peers across the country or even the state?
Still my husband and I were torn. We weren't sure what to do. Then the wise man I married came up with a brilliant solution. He suggested that we ask a trusted professional who knew our daughter well. This individual said that knowing all that he knows about out daughter, he would not recommend her taking the test.
Based on his recommendations and our research, my husband and I did decide to opt Princess out of standardized testing this year.
I understand that in some states a parent has to appeal to the state board of education to opt their child out of testing but here in California it's as easy as sending an email to the school stating that we wish to opt our child out of testing. This was a difficult and gut wrenching decision for my husband and I to make, but I'm confident we made the best, most informed decision we could.
Whether your child has special needs like mine or is typically developing, what are your thoughts on this topic? Have you weighed the pros and cons? I welcome any comments on this subject in the comment section below.