Reflections on 2015

As the new year is on the heels 2015 I find myself reflecting on this past year. I can't guarantee that I'll make new year's resolutions as it seems like I always break them in the first month. I can say that I'll try to appreciate each day like I did this year.
In 2015 our family celebrated two years of stability for my daughter. That might not be a big deal to most. For us it is huge. It means no phone calls to the police. It means no trips to the ER. It means no stays at a behavioral health hospital. It doesn't mean that we always have peace and tranquility in our house. It means we have those more often.
This past year my greatest accomplishment was finally getting an autism diagnosis for my daughter. Some might see that as an extra burden. I choose to see it as success because it means we have answers and solutions are on the way. Solutions like ABA therapy and feeding therapy will assist my child in living a fuller life.
Despite her challenges my daughter took two big trip this year. The first was a trip to Washington, D.C. to speak about mental health the representatives of our elected officials. You can read about our trip here. The flight alone was monumental as seven years ago my daughter had a huge meltdown on the flight coming back from the east coast. This time I was prepared. It made for a much smoother flight for everyone.  The second trip was road trip to northern California to visit with a childhood friend of mine and her family. That trip was special because it reminded me of all the times that my mom and I went on trips together. Our trip up the coast of California was not without its challenges. My daughter and I learned how to figure out the curveballs tossed our way. Sometimes that meant getting back on track after losing our way. Other times it meant that I had to help my daughter when she was feeling overwhelmed. I really learned how to read her. There are times when I can push her to do more than she thinks she can. Other times when I need to let her calm down.
A big accomplishment for my girl this year   being able to perform in a full length musical for the first time in five years.  She may have not had a speaking role in "Mary Poppins", but she learned how to get along with a large group of kids. During the production of this play Princess only had two meltdowns. Both times she was able to turn things around and finish out her responsibilities for the evening. That's success in my eyes.
This past summer in between her activities I made time to take Princess to the beach so she could practice the fine art of Boogie Boarding. She mostly taught herself by watching others and feeling the waves. A few years ago Princess wanted to leave the beach after being there only a couple of hours. She found it cold and the sand was bothersome. She overcame those challenges. She actually looks forward to going now. This makes my heart smile.
I wish that I could say that my little business took off and is booming. It's not even close to being able to being profitable. That's OK though. I'm told that it takes several years for a new business venture to be successful. I'm learning from my mistakes so that I can turn things around. I also see this as more time that I can spend advocating for the needs of my daughter.
While I was trying to get my business off of the ground, my husband was finishing up his classes to become a certificated P.E. teacher. He's excited to begin teaching in the near future.
At Princess's IEP  this fall I asked for the moon. I didn't get it. I got a sliver though. Hopefully she'll get equine therapy in the near future. This is something that I feel she will benefit from since she loves animals so much. I'm blessed to say that my daughter will be at her current therapeutic day school at least through the remainder of this school year.
In less than twelve hours 2016 will be here. I have no idea what it will be like.  Whatever comes our way our family will handle it like champs. We'll take our cues from our cherub who's shown us how.

Here we are in Washington, D.C. advocating for changes in mental health.

When a Mommy Friend Understands What It’s Like to Parent a Special Needs Child

Many parents of special needs kids talk about how they need people to be supportive of their situation. I find that especially true since I am a parent of a child with the dual diagnoses of bipolar disorder and autism. Having a child with these invisible disabilities, ones where a child looks like a normal child, but responds to her world very differently from most, can be very isolating. I’m happy to say that I have found a person who is not related to me by blood, but who has embraced my family as her own.

This afternoon I was at my best  friend’s house sitting around her kitchen table chatting with other moms. Eventually the topic of children came up. One thing led to another and I found myself telling the other moms our story.  One mom in particular wanted to know how my daughter was diagnosed. She also wanted to know what were the signs that something was amiss. Before I could even speak up, my best friend spoke and explained things so eloquently. She told of my daughter’s sensory issues and mood swings. Another mom who has met my child uttered the famous “But she doesn’t look autistic!” line. My wonderful friend rose to the occasion and replied, “That’s just it, you might see a child like Princess in the store and think, ‘Boy, that child is a brat!’” She went on to explain how everyone needs to be more accepting of children like Princess. People need to show kindness not judgment.

 As the conversation progressed, and I shared more of our story, I couldn’t help but be grateful that my best friend truly “gets it.” She understands the challenges my child faces on a daily basis. She knows the lengths that I have gone to to get my child the help that she needs. She even remarked, “I knew that Cate needed a friend who would stand by her side. I decided to be that friend.”

As the afternoon turned to evening, I gathered my things to head home. On the way out the door, I told my friend how much I appreciated her support. Her response solidified what a great friend she is, “If people are going to come to my house, they need to know how to support you. If not, they will not be welcome because you are my family.”  That is the sign of a true friend. I may have shed a tear or two on my drive home.

My Best Friend and I

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.