Unless you have a child with special needs, you will never fully understand the world I live in.

If you were to ask my family and friends, they would agree that I don’t live in fear. I am mostly optimistic. I am a problem solver. They may even say, “If anyone can handle having a child with special needs, it is you.”

Recently, someone said to me (sarcastically) that blogging makes me think I am a celebrity.

This comment immediately made me recall one of my favorite Brené Brown quotes:

“Shame corrodes the very part of us that believes we are capable of change.”

For many reasons, I share my story. I believe that one blog post could help one person. I know that we all have a story to share. As you know, everyone releases their stress in some manner. For example, some people turn to exercise, or overeating, or the use of drugs or alcohol….

I blog.

I write with the intent that my words can change a perspective, give a person hope, or maybe make someone laugh. By sharing my story, I release fear and produce courage. It takes courage to share your story. Bottom line, shame doesn’t work with me. I am a person who knows that despite my struggles, I am capable of change. Guys, we all are.

Sometimes, the world I live in can be a lonely one. It can be sad and draining. I never stop searching for new therapies. I am always researching programs that will provide Camryn more opportunities for socialization.

I never stop, not for a moment, under any circumstance… I CAN’T STOP…

Please understand, I have been blessed with an amazing, hysterical, fun, kind, innocent, and loving daughter. She has Autism, an Intellectual Disability, ADHD, Fine Motor Delays, Gross Motor Delays, and Speech Delays.

Of course, those labels don’t define her, but those labels mean: She doesn’t know basic math and reads at a 1st-2nd grade level. Also, the likelihood of sexual violence occurring against a person with an intellectual disability is much higher compared to a neurotypical person.

Sometimes, the thought of Camryn’s 18th and 21st birthdays can make me feel physically ill.

I don’t think about my other three daughters turning 18 or 21 in a negative way. That is usually a happy milestone.

It should be noted- I live in a world where my teenager with special needs turning 18 or 21 is not a milestone. Yes, it will be a great turning point in her life. Nonetheless, the thought of this part of her story has the ability to fill me with- anxiety, panic, worry, angst, and unease.

To clarify, did you know that when Camryn turns 18, Dave and I have to go before a judge? Interestingly, when I researched “taking away the rights of” the first phrase that appeared in Google was:

taking away mentally challenged adults rights

Furthermore, when I pressed ‘enter’ the NUMBER ONE site to help me gather research was titled:

What Are the Legal Rights of the Retarded?

https://slate.com/news-and-politics/2001/07/what-are-the-legal-rights-of-the-retarded.html

Obviously, I can’t even process what I read in that article. I am a wordless writer. Maybe you can form the words for me?

The article was published in 2001. We have come such a long way since 2001. We have right….?

My reality is that in two months Camryn will be 15. She is closer to 18 than further away.

In this case, we will take Camryn to court when she turns 18 so we can continue to have guardianship. This is necessary for her health and safety. With Camryn present, we will have to share her inabilities in front of a judge to prove she is unable to care for herself. This will be costly; emotionally and financially. Recurrently, we will be required to report to court.   

Without a doubt, if a neurotypical adult loses a parent, they grieve. I am still grieving the loss of my dad. Clearly, as an adult I can logically process his death. My Dad will always be part of me, but my life as an adult was appropriately independent, and I will see him again.

In constast, Camryn’s life will never be separate of mine. Undoubtably, decisions I make will always revolve around Camryn. At times, when I really digest that statement, it is crippling. She will not leave home in the same manner that her sisters will leave our home. I am not a pessimist, but I am a realist. She will always need my help.

Since my youngest two turned 5, Camryn always needed more help from me than they did. Similarly, they all will always need my unconditional love, but my number one parenting goal for my three younger girls is to raise independent women who follow Jesus. Whereas with Camryn, my number one parenting goal is to create a system that promotes, embraces, and helps to develop her independence everyday of her adult life.

In most cases, the child outlives the parent. What will happen to Camryn when I die? Who will be her best friend if her best friend is no longer here? Who will help her shower? Who will make sure she doesn’t eat too much and get sick? Who will remind her to use the bathroom? Who will tell her to take her medicine? Who will drive her to Target, Liberty Thrift, Five Below, or Red Robin?

I am going to hustle to make sure that Camryn has the best life now and when I am no longer here.

I am a warrior mom.

I know this (blog included) is all part of God’s plan and purpose for my life.

I am going to do my best to change her future and the future for other individuals with special needs.

Above all, no one can take away my dignity or worth, especially if I want Camryn to live with the grace and dignity she deserves. When you have a child with special needs, the world can be a lonely place. Camryn and other teenagers with special needs are worth too much to waste time and energy on anyone who doesn’t get it. By raising awareness, hopefully more people will get it. Camryn’s team is so worth being on, but critics never have a spot because critical people lack empathy and insight.

Further, moms of kids with special needs need a lot of help. We can feel isolated if we don’t have the support we need. These people that bring us out of isolation do so by calling us, letting us cry to them, stopping over to help, but most importantly understanding the emotional needs we will carry with us throughout life. To be part of this team, warmth, empathy, and perspective: REQUIRED!

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2 Comments

  1. Mary Beth Ormsby on January 7, 2020 at 11:17 am

    This post brought me to tears while I’m sitting at my desk. “Who will be her best friend if her best friend is no longer here?” — that thought runs through my head almost every day. So very grateful that you put this out there … I connected with this on many levels.



  2. Kristi Hertzog on January 13, 2020 at 11:53 am

    Mary Beth,
    Thanks for your comment. I know it is so hard to think about.



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