Lost!

Like all of us, I lose lots of things. I lose my keys, my wallet, my purse and sometimes I lose my car. The one thing that I don't like losing is my child. We've all read in the news about autistic children who wander off and are never found alive again. Most of us think that these are children who are moderate to severe on the autism spectrum. I'm here to tell you that even those who have mild autism can be prone to wandering. Even my child, who at first glance looks like every other child, has been known to wander off.
People look at me quizzically when I tell them that I kept my daughter in a stroller until she was four. Yep you heard that right- four! When she first learned how to walk, she would never stay by my side. She was fast! I'd turn my head to talk to someone or look at something. The next thing I knew she'd be a football field away. I tried getting her one of those backpack leashes. That was a joke. She just laid on the ground refusing to move. She was smart enough to figure out that the leash was going to constrict her. She wanted no part of that. Eventually I let her out of her prison. I mean stroller. She no longer fit in it and she was getting better at staying close by me or so I thought.
Recently I've noticed that as she is gaining confidence and a sense of independence, she is wandering away from me again. She'll see a shiny object, a dog to pet or a child to comfort. She also has OCD. She likes to hear the sound of the crunch of the perfect leaf. Rocks and shells demand to be picked up. Then there's all manner of sewer and drain covers. Each one must have her footprint on it. She feels compelled to go over to whatever is drawing her in. I constantly worry that she will get run over by a car or be kidnapped.
I have tried to instill in her the importance of safety, but it is an uphill battle with her. Her teacher noticed it too. She recently told me that she worries that Princess is in her "own little world." She believes that this is a safety risk for my daughter.
Since I cannot keep her in a bubble, I have taught her what to do if she ever gets lost. She is to find an employee or another mom. She's to tell this person that is she lost and have them call me. She memorized my cell phone number a long time ago.
Still I have to have my head on a swivel whenever we are in public. I  frequently offer little reminders to stay close by.
Then last night my daughter gave me the scare of my life. We had gone to the mall to buy a Christmas dress. Thankfully we found an outfit that we can both agree on. Afterwards, we decided to stop for dinner at the mall's food court. We even had a blue moon event because my daughter decided to actually try something from a new to her restaurant. She told me what she wanted to eat then asked if she could take her iPad and find a seat for us. My daughter's getting older so I do want to honor her sense of independence when I can. I know she knows not to leave the area without me so I let her go off by herself.
After placing our order and getting our drinks, I went to go find my daughter before returning to get the food. I looked once. I looked twice. I walked the entire perimeter of the seating area. I did not see my child anywhere. I started to panic a bit. Finally I saw two of the janitorial staff. I was going to ask them to call security. I know time is of the essence. That I really have only a matter of minutes before the predator who took my baby drives off with her. I quickly said a little prayer and scanned the area again.
That's when I saw her. She was sitting at a table that had a booth bench on one side and a chair on the other. She was thinking of me because she knows that I  prefer to sit in a chair rather than a booth. What she didn't consider was that the booth was about half of a football field away. She didn't stop to think how far away she was. She never even considered staying close. After all, in her mind she was still in the same general area.
Once I spotted my lost child, I went over to her and told her what a fright she had given me. I was so relieved. I just wanted to scoop her up. I felt like hugging and kissing her until midnight. Somehow I contained myself. She never left my sight the rest of the night though.
My prayer is that I never have to see my child's face on the side of a milk carton. For all of those mommies who have lost their babies due to wandering, please know that many of us can empathize with you even if it is in minuscule proportion to what you have gone through. I also pray that more people take this wandering epidemic more seriously.
If you are the parent to a child with autism or one who is prone to wandering, please give them an extra hug and kiss.  Let's all be mindful of where our kids are and how to keep them safe.

Photo is of my little cherub when she was three about the time when I tried the backpack leash.

You can also follow our journey on Facebook.

Why My Daughter Will Be Eating a Peanut Butter and Jelly Sandwich on Thanksgiving Day

Last week my cousin sent out a group text giving out the details for today's Thanksgiving fete that she and her husband are hosting. Pretty soon my family members were bantering back and forth with tales of past feasts and pictures to prove it. I couldn't help but to pause for a minute. You see out of all of the things listed on the menu, my daughter will not eat one thing. Not the yams that remind me of my mom who has since passed on. Not the green bean casserole prepared by my cousin. Not even the star of the show- the turkey. This saddens me, but we will still make the best of the day. 

 My husband and I have known for years that our daughter is a picky eater. She takes it to a whole other level.  We tell her that she is a discriminating eater. There are many foods that just don't taste right or feel right in her mouth. This is just one part of her autism.  It a co-occurring  disorder called Sensory Processing Disorder. Her brain does not process sights, sounds, smells, textures, and tastes the way it should. On this day people will see that turkey will not be on her plate. Thanksgiving is meant to be a joyous occasion. If the traditional Thanksgiving foods are a part of my daughter's meal, she will be anxious and will not enjoy the day.

Instead I will pack her a lunch full of her favorite foods.

Thankfully for us our family members understand my daughter's challenges. They love and accept my daughter just the way she is.

I do worry that as my daughter gets older that she will feel bad that she cannot enjoy such a wide variety of foods. I worry that others might tease her and make her feel bad. To help her with this, she will soon begin feeding therapy through occupational therapy. My wish is for my child to not feel stressed about food.

On this day of giving thanks, I'm thankful for family members who understand that while the turkey is an important part of the day, it is also a day for making memories with loved ones.

Here's a letter expressing my gratitude:

Dear Family,

I just wanted to say thanks for keeping mum about my daughter not eating the foods you so lovingly prepared. I know that you know that this is no reflection of the love that she feels for you. She cherishes the time spent with you. In her mind the fact that you love and support her in spite of her challenges means the world to her. As her mom your acceptance of her as a member of your extended family is huge. Unlike those with visible disabilities, hers are hidden. That doesn’t make them any less difficult for her or us as her parents. In some ways it is harder. Thanks again for going out of your way on this memory making day. My daughter cherishes these moments.

Gratefully,

Cate

One of the many Thanksgiving foods that my daughter will not be eating.

Picture curtesy of my husband.

My Daughter the Spider Slayer

We're celebrating again!

I was getting the cobwebs out of my head this morning when Princess tip toes into my room to ask me to help her be brave because she needs to kill a "Poisonous Daddy Long Legs." As I'm wondering why one of the servants or even my knight is not helping out with this lovely project and rubbing the remnants of the sandman's visit out of my eyes, I come to my senses, put my game face on and gear up for the battle of the decade. 

Princess asked me what weapon she should choose. I considered all of the options and suggested the best one of all of them, a fly swatter. Yep it has more reach than the shoe.

Princess was very brave, faced her fears and hit the spider but not enough to kill it. As he tried to climb higher I grabbed our weapon and gave him a good smack which sent him toppling to the ground. He was persistent and tried to scurry away but I swatted him one last time. 

Then I had Princess grab some tissues and flush him away to far far away places.

Success!

High fives were given all around.

Some of you may be wondering what the fuss was all about but others of you know what we have been through with all things creepy and crawly because you yourself have been there or you have a child who has a fear of insects. There was a time when the mere mention of the word spider would send chills up my daughter's spine. There was a time when she would cower in fear or run away at the sight of them. She's come a long way though. Just recently we were reading about the ten deadliest spiders in the world. Then today Princess requested my back up. I did right by her and supported her every step of the way.

I'm curious. What battles have you or your child fought or overcome recently? Big or small I want to celebrate them all of them with you.

*Note: This post first appeared on my Facebook page on October 25, 2014. I decided to repost it again.

To the Judgmental Lady at the Grocery Store

I know you think you were doing me a favor. I know that in your mind I am doing permanent damage to my daughter. You think that since you and your mom are not speaking to one another that it is your duty to speak up when you see something that you feel might be harming another mother/ daughter relationship. First of all I should say thanks for not thinking that I was my daughter's grandmother. I get that a lot. At least you did know that I was her mother. The rest you got all wrong though. What you don't know is that my child was doing something dangerous. She was climbing on the grocery cart as we were exiting the store. It was dark and the parking lot was busy. I was protecting her. I did not want her to get injured. Then when I tried to explain to you that my daughter has challenges, you just countered back that I needed to show more love towards my daughter. Here's what else you don't know. I have been and will continue to be the most loving and supportive mom that I can be for my daughter.

I have made many sacrifices for my child. When my daughter lost her beloved KiKi (Blankie) last week, who went back to the mall that was over 40 minutes away? Her father was the driver, but I went too. When my daughter needed me to advocate on her behalf, I not only quit my teaching job, but I researched for hours about ways to get her the help she needed.  I knew that having the diagnosis of bipolar disorder was only a part of the picture for my daughter. I asked everyone I knew until the right person pointed us in the direction of a top notch pediatric neurologist. This new diagnosis will mean that my daughter will have access to more services. Did you know that I email her teacher almost every day? Sometimes it is just to let her know that she will be trying a new food at lunch that day. "What's the big deal?", you say. I tell The Best Teacher in the Universe these things so that she can be encouraging to my daughter when I am not able to be there.

The other day my daughter came home from school and asked if I had been baking cookies because she smelled the yummy candle that I was burning. Guess what I baked her the next day? Cookies!!

You may be wondering about the hard times when my daughter and I don't see eye to eye. I get that. I worry about that too. I also work on my part in that. I show my daughter kindness and forgiveness when she does something that hurts my feelings like when she tried to claim my new blanket as her own. Sure there was a consequence, but we also talked it through. I show her unconditional love as best as I can.

Of course there are times when I make mistakes. I am quick to apologize and admit my faults to her. It's what a loving mom does.

With as many diagnoses that she has, my daughter's got a long hard road ahead of her. I know that she might not always like me, but I hope that she knows how much I love her.

In the future maybe you can keep your thoughts inside of your head. Perhaps you can see a counselor or other trusted professional so that you can figure out how to mend your relationship with your own mother.  If this relationship is beyond repair, maybe you can learn how to move on.  I know that for me I am doing what I need to do for my relationship with my daughter.

This is a picture of my daughter reading her book at the beach when I'd much rather have her enjoying the waves. Guess what? In that moment in time she wanted to read so I kept my thoughts to myself. I was just grateful that she wasn't on her electrical device like the lady in the background.

You can follow our story on Facebook  as well.

What a Doll and Some Online Friends Taught My Daughter About Acceptance

I have an eleven year old daughter who is completely obsessed with Ever After High and Monster High. She loves watching the movies, playing the video games, reading their books and of course wants to buy every single doll that Mattel puts out. This company has done a fabulous job of marketing to tweeners like my daughter. The one thing they may need to work on is quality control in their product line. Never fear though, this company's snafu was not my daughter's undoing.  We had some special friends who helped us figure out what to do.

Faybelle Thorn

Recently, my daughter bought Ever After High's Faybelle Thorne. Being the responsible mom that I am, I made my daughter use her own hard earned money to purchase this doll. My child was so excited to rip into the package to hold this doll that she did not wait until we got home. She opened it in the car. Normally this is not a problem for her. She has figured out how to circumnavigate the Houdini like packaging. On this day, as we were driving home, I heard a shriek from the back seat. I almost pulled over to the side of the road, because I was certain that my daughter had cut herself on the plastic case. Before doing so, I inquired as to what the problem was. In a heartbroken voice my daughter told me that her new doll had two right feet. In her mind the world was going to come to an end. We'd already had a long day, so I convinced her that we would survive and figure things out once we got home. 

When we arrived at our humble abode, I quickly inspected the doll and sure enough she had two right feet. We had no way of knowing that this was going to happen because in the sealed package the doll had boots on.

What?!!!! Two right feet???

After we settled in a bit, I shared the story on my Facebook page. I asked my followers what we should do. Some said we should take it back, others said we should contact the company, but the overwhelming majority said I should use this as an opportunity to teach my child about differences. My girl has an invisible disability herself. She has bipolar disorder with a splash of autism. She wants so desperately to be accepted and loved for who she is as a person. I seized this opportunity as a chance to show her that people with visible disabilities want the same thing as she does.

Once I processed everything, I went into my daughter's room and told her that she should keep the doll. I explained that she should celebrate its disability. The next thing I knew my child was fashioning a leg brace for Faybelle out of blanket fleece and tape. It was the cutest thing ever. She really embraced the concept of accepting her doll's imperfection. I couldn't have been prouder of my girl.

Faybelle with her leg brace.

Sometimes we need others to help us realize the important things we need to teach our children. This time it was some strangers in far off places who I may never meet in person, but who I have already met and become friends with in my heart. Thank you dear ones.

You can follow our story on Facebook.

Ending Mental Health Stereotypes in First Run Movies

This weekend I went to see Warner Bros. "The Intern." It's cute comedy staring Anne Hathaway, Robert Deniro and Rene Russo. I really enjoyed 98% of it. The 2% that I didn't like, almost caused me to walk out of the theater. 
If I had been with my 11 year old daughter, I would have probably had to do some serious explaining to her about two very minor scenes. As one movie reviewer wrote:  "There is an awkward and unfunny joke about a child possibly having bipolar disorder." Here's what happened, when we are introduced to Anne Hathaway's character's daughter in the movie, we are told that she is not friends with a girl because "She is bipolar." This joke is repeated one other time. It garnered a few chuckles from the audience in the movie theater where I was. 
I am sorely disappointed in Nancy Meyer, the writer/director of the movie, for writing this into the script. I'm saddened that Kevin Tsuijihara, chairman and CEO of Warner Bros. allowed this in a film that is put out by his studio. The starring actors, Anne Hathaway, Robert Deniro, and Rene Russo must not know anyone who has this disorder. If any of these individuals did, they would not have allowed it to be a part of the script. 
We as a nation have come a long way in ending many stereotypes. The N word and the R word are no longer acceptable. Many are repulsed by these words. We've tried to show a fair side towards roles that women and men play in society (a strong point of this movie.) We've made great strides in breaking down the color barriers. This movie shows us that we still have a ways to go towards ending the stigma of mental health. 
Challenges in mental health are no laughing matter. My daughter struggles with bipolar disorder. Thankfully she's had over two years of stability, but it took her a lot of hard work to get there. 
It is my belief that if she had been old enough to see this movie, she would have been deeply offended by the little joke that was made about her disorder. 
As of this writing my daughter has not encountered rude comments or misunderstandings about bipolar. I'm sure that will not be the case, the older she gets. Movies and the media in general can do a lot to end the stigma and shame of mental illness.
Perhaps instead of saying that the daughter's friend was "bipolar", the writer could have said that she was having a rough day.
I implore those associated with this movie to really consider their part in educating others that jokes about mental illnesses are not OK. Maybe next time they are reading over a script that puts down or makes light of mental health challenges, they will speak up and asked that the lines be rewritten. The time for change is now. 

You can also follow our story on Facebook at Raising a Drama Queen: Musings and Insights in Bipolar Land

#EndTheStigma

#TheIntern

An Additional Diagnosis: Our Journey to Autism

Yesterday my daughter had an appointment that really took us five years to get. At first I was a little bit angry that it took so long to get her diagnosed with autism, but then I took a look back and saw all of the pieces of the puzzle. Everything fit into place perfectly.
When Princess was four, she started having a lot of problems in preschool. At that time my husband and I saw a family counselor who said that our daughter probably had ADHD, but it was too early to tell. Then in kindergarten when my child was suspended twice in less than a month, a  different family therapist encouraged us to see our pediatrician to get an ADHD diagnosis so that we could get her on a 504 plan to stop the suspensions. We also used it to put some supports in place. A few months later, we saw a clinical psychologist who took a family history and performed a battery of tests. His conclusion was that my child had severe ADHD with possible bipolar disorder. He ruled out asperger's because she could read emotions. Over time we added the diagnoses of Oppositional Defiant Disorder, Sensory Processing Disorder and OCD to the mix. Then when Princess turned nine her current psychiatrist said that she saw some traits of autism so she added PDD-NOS.  Finally in May of this year this same doctor said that she thought that all of my daughter's diagnoses could fall under the umbrellas of bipolar and autism.
That really struck me because for a very long time I was wishing that we could just say that my daughter had XYZ which explained everything. I just wanted one diagnosis to cover it all. This new co diagnosis was a step in the right direction.
All of this time, we were limited to what resources my daughter received, We were blessed to have her in a therapeutic day school, with a private therapist and with a fantastic psychiatrist. I still felt that she needed more. At one time our school district encouraged me to call our local regional center for more services. In not so many words, I was told they only worked with developmental delays. Since my daughter was not diagnosed with autism at the time, they refused to talk to me.
I eventually started to connect with the autism community because so many of my daughter's behaviors sounded so similar to their children's.
In January of this year, our long time family therapist moved her practice out of the area. Since my daughter seemed to be doing well with the supports at school, we did not get a new private therapist right away. In July and August of this year, we saw some new behaviors that warranted us finding that new therapist. She's been amazing! During the interview process I mentioned that we wanted to seek out a more formal autism diagnosis for our daughter so we could get her more services. The problem that I had was that I had no idea who was a good neurologist. We also needed one who would accept our insurance. I can't help but believe that divine intervention was at play when she gave us the names of several who she knew of.
The following Monday I called all of them. One of them seemed like they might work until I found out that we would have to pay out of pocket and get reimbursed by our insurance. I emailed the therapist who encouraged me to try calling again. It turned out that two of the numbers that I had were mixed up. I was finally able to contact a pediatric neurologist who took my insurance and who had an opening less than a month away. I was beside myself with joy as we were getting closer to real answers.
The receptionist aka Johnny on the Spot, sent me links to the paperwork that I would need to fill out. It was quite lengthy, but I was happy that it was so thorough. I filled it out and sent it back with other reports that I had. I will say this doctor had a lot of reading material.
After waiting for time to crawl by, the day of our appointment finally arrived. I was nervous and giddy at the same time.
When we arrived there, the receptionist recognized us right away. I was surprised that she knew who my daughter was because I hadn't sent in any pictures of her. Then it struck me, she was the only girl in the office. Getting her a diagnosis had been a concern of mine because she is a girl. It is harder to diagnose girls. I was ready though. In my arsenal, I mean tote bag, I had some articles about girls on the spectrum at the ready just in case.
A few minutes after we checked in, the sweetest lady introduced herself to me as the doctor. She was not wearing a lab coat and did not look scary. A tactic that works to her advantage. She informed me that I could go back to her office to talk while my daughter stayed and played in the lobby. I was a bit concerned at first because my daughter doesn't usually play well with others. I quickly realized that her office door would be open and the receptionists would be keeping an eye on things.
Right away this doctor put me at ease. She assured me that she had read over everything that I had sent. Then she asked me what I was hoping to achieve and how she could help me. She had a check list that she was using as a guide to inquire more about my child. She would ask a question then I would answer mostly in the affirmative and with an anecdote when I could.
At the end of this friendly banter, she told me that she had been looking on the DSM-V to see if  my daughter met the criteria for an autism diagnosis. She felt that she did indeed meet the criteria. She also told me that with the DSM-IV it was harder for a person to get the autism diagnosis. I breathed a sigh of relief.
We chatted a bit more about services and where to get them. She included on her prescription OT, feeding therapy (as my daughter has a lot of food challenges) and ABA therapy. She told me that she wouldn't touch my daughter's medications "with a ten foot pole" because she respects psychiatrists. She also knows how hard we have worked to get my daughter to a place of stability.
Then she brought my daughter back to evaluate her and confirm what she already knew. She told me that she definitely saw the sensory issues during the exam.
One of the things that she told me was that for my child she saw her bipolar and autism as the main diagnoses. All of the rest of her diagnoses fell under those umbrellas. Wow! She felt the same way that the psychiatrist did. I didn't even need to show her the articles in my tote bag.
We go back to see her in a few months to see how my daughter is progressing.
It's been quite the journey to get to where we are, but I can see now that it was perfect timing.

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