I Think My Get Along Button is Broken Too, But That's OK

Being the parent of a child with complex needs is hard work. It is often draining and exhausting. I am like most humans on this earth, I crave social interactions. I desire to have meaningful relationships. I, like my daughter with autism and bipolar disorder, want to have friends who understand me. I have known for years that my daughter's "get along button is broken." She can make friends just fine. Keeping and maintaining those friendships, however, is difficult for her.

I'm discovering that I am more like her than I want to admit. In the past year, two of my very closest friendships have ended. I wish I knew what to do differently. Some of it, most of it, is beyond my control. Since my daughter has more needs than her typically developing peers, we have to miss out on many events where I can foster those friendships. Just this spring a dear friend of mine invited me to her son's play. We bought the tickets and looked forward to going. The morning of this event was a difficult morning for my girl, so I contacted that friend and we stayed home. My friend was gracious and understanding. From her viewpoint, that was no fun as I am sure she really wanted to see us. She was a proud mom and wanted us to celebrate her child's success with her. Then in April my daughter had a brain tumor that required my full attention for several weeks. I had to miss out on being a support to another friend who had foot surgery. I wanted so badly to be able to cook for her and take her to doctor's appointments. It never happened. For that I am sad. Still another friend had to go out of state to attend to her extended family. I really wanted to help her pack or bring her a care package. That didn't happen either. I am failing my friends.

 I'm not failing my daughter, though. Often I am on the phone, attending doctor's appointments, emailing my child's teacher or figuring out insurance snafus. When my child is home, I cannot leave her unattended. Although she loves people, peopling can be exhausting for her so we adjust to her schedule and her needs.

I have been told that my focus is too narrow. I only talk about my kid. I have become something that I never wanted to be; one of those parents who talk incessantly about their children. It has become ad nauseam.

Here's the thing though: If your child had cancer, wouldn't you do everything in your power to save them? Wouldn't you stop at nothing to find a cure? This little being who I love with every fiber of my being is depending on me to help her.

If I abandon her so that I can nurture my friendships, then I am a failure as a mother.  I am sorry that I cannot be the kind of friend that my friends need me to be. I'm not sorry that getting my daughter launched for life, leaves little time for anything else.

Society will pay for the alternative. If I don't step up and become a warrior mom, my daughter will look elsewhere to get help. She could very easily end up as a pregnant teen or a drug addict. She could even end up committing suicide. My due diligence is to raise her up to be a productive member of society not one who is a detriment to it. Unfortunately, this requires more of me than the average mom.

I'm not going to stop trying to be a good friend. I just might not be able to be the kind of friend my friend wish I was.

If you are a friend to a mom of a special needs child, please know that she is grateful for your friendship even if she has trouble showing you that. She may never be able to reciprocate that friendship equally. Thanks for understanding that and for loving her in spite of this.

One thing that I have learned from my daughter after all of her failed friendships is to never give up. There might be someone just around the corner who I have just not met yet.

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

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.

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.

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