The Day I Realized a “Phase” Was My New Normal With My Autistic Child

I thought it was just another pretty day to play in my backyard with my four sons. Little did I know that it was a day that would rock my reality to its very core….

God had blessed us with a break from the rain with sunshine. My 4.5 year-old twins and I were soaking it up in our backyard.   I am always on high alert. I don’t want them to leave the safety of our backyard and wander to explore the front yard (and beyond) by themselves.

One of my twins has Autism, so I am especially vigilant when it comes to him because he is very unpredictable. That day it started off as his usual game where he starts to run off toward “no man’s land.” I shout his name and tell him to stop. Most of the time he runs in place as he turns to look at me. After a moment, he runs back to me, giggling the whole way. Every once in a while he continues to run on, but now in a playful “chase me” sort of fashion. However, this particular time was different, he started running and he didn’t stop. He didn’t respond to my shouts. He didn’t stop. He didn’t hesitate. He just kept running.

IMG_7946When he reached the street, he was in my sights but not close enough for me to grab him. I shouted louder and in a very stern manner. I meant business. He ignored my plea and ran straight across the street without even looking. Then he started running up a very steep slope that is a common area in our neighborhood. He has NEVER gone that far before! I was getting very scared, and I tried to push my body climb up that hill as fast as I could. At the top of the summit is a backyard with an iron fence and a pool. I know this, but my son doesn’t. I start to feel a little better thinking that fence would slow him down and allow me to catch up to him.

About half way up the slope, my heart sank as I saw him open that gate. Suddenly I was screaming his name, praying to God, and willing myself to overcome my exhaustion to get to him as fast as I could. What was I going to find? Was he going to be submerged in water? He cannot swim. Is the pool empty and he falls in and has a head injury or worse?

Eventually I managed to get to the fence. I was out of breath, overwhelmed with my fears coming to fruition, I see my little boy standing next to a pool full of water, staring at the warm steam coming off the surface. I calmly said his name; I didn’t want to startle him. He turned and looked at me for the first time since this ordeal began. I felt a huge relief come over me as he walked toward me. He willingly took my hand and walked with me without argument.

We started walking around the neighbor’s house to their front yard. No telling what the neighbor thought when he came out of his house. He heard me yelling at the top of my lungs in his yard. And then when he sees me, I am out of breath, exhausted, tears streaming down my face, and blood trickling from my temple from a branch that scratched me in my pursuit.

What did my neighbor think of the little boy that was calm and compliantly holding his mother’s hand as I tried to explain the situation between sobs. Did he know what almost happened? Did he understand when I said “he has autism,” that I wasn’t an irresponsible mom who wasn’t paying attention to her child?

Does anyone know what this means for me and my family? This is a game changer.

As I’ve traveled…stumbled down the path of parenthood with my boys, every challenging phase I’ve come across has been just that, a phase. From baby proofing the home, to toddler meltdowns. Time and development have pushed past that barrier and off we go to the next phase!! Until now, I have counted on these temporary lifestyle changes to be just that, temporary. However, a brush with a potentially tragic outcome with my Autistic son, made me realize that with ASD, some phases will never be over.

For the two years that my 4.5 year old son has been diagnosed on the Autism Spectrum, I have done countless hours of reading and research about the issues I might face with my son. Since he is still technically a toddler, I haven’t really been able to apply these potential behaviors to my son. Meltdowns in public? Similar to “toddler tantrums” to the outside observer. Nonverbal? Many young children shy away from talking to strangers. Not listening and responding to people? Have you ever tried to talk to a young child who is deeply enthralled with their favorite TV show? Wandering off without regard for personal safety? Absolutely a concern for all young children. However, consider these behaviors on an older child and everything changes.

For most children, an improvement in speech and communication helps a child to eventually express their frustrations and feelings in more productive ways than through tantrums. Children that learn social cues eventually will effectively communicate with other people and, hopefully, not be misinterpreted as rudeness, disrespect, or worse; aggression. With the exception of my older boys and their video games, they do learn to respond to questions and requests from others. With maturity and training, children begin to understand what is unsafe and how to act accordingly.

According to the CDC and the National Autism Association, 49% of children with autism will “wander” or bolt in this case. Accidental drownings account for close to 90% of lethal outcomes, second is being hit by a vehicle.

Strides are being made in communities to minimize tragic outcomes. Prevention is key, but it is not completely effective. The back-up plans include involving the neighborhood in search efforts (like an amber alert), and preemptively giving information to local EMS about an individual. If 911 is called, they have pertinent information ahead of time, so miscommunication can be minimized.

We are called to love our neighbors. I am counting on my neighbors to love my son.

 

 I appreciate my friend, Beth Moore, for sharing her story. Beth is an autism advocate in Tennesse. What can you do to help? Pay attention when you hear about these needs in your state by going to Autism Speaks and sign up to receive emails. You can also inform others about the need and have them sign up as well. If you are in my state of Tennessee, feel free to contact Beth to get more involved in making this change. The truth is, everyone will be touched by someone on the Autism Spectrum. Your children will be in class with them, your coworker may be taking care of a family member on the spectrum, you will be among them in everyday society. You will be fortunate to know these remarkable people, so let’s help them and their families get them the treatment they need.

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When You Don’t Even Know How to Pray

Since my Dad’s Cancer diagnosis in December, my mind has been warring between optimistic and realistic thoughts.

I recall sitting in the oncologist office in early January and staring at his PET Scan. The doctor explained to us that everything that was white was Cancer. There was so much white. More white than black in some places.

Both the optimist and realist in me know without a shadow of a doubt that with God ALL things are possible. I love a big and mighty God that can erase every last bit of this so-called incurable, inoperable cancer. That is my constant prayer.

I admit though, that the battle between the optimist and realist in me has brought some conflict in not only my thoughts but in my prayer life. While I know that prayers are answered every day, I know that many are not. If everyone’s prayers were answered, no one’s mama, daddy, or child would have Cancer. We don’t understand why some prayers are answered and some are not. I know that God has a plan though and He is in control.

So how do I pray expectantly as I am told to do in the Psalms, when the realist in me knows that my prayer for complete and total healing may not be answered?

Danged if I know.

Ha! You thought I had the answer?? Not quite 😉

I haven’t figured that out yet, but I have found a way to have peace in a turbulent time. Hebrews 4:16 encourages, “Let us then with confidence draw near to the throne of grace that we may receive mercy and find grace in our time of need.” I do not know if God will heal my dad, but I know that He will provide my family with the mercy and grace to heal our aching hearts during our time of need.

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Of course we always want the ultimate prayer of healing to be answered. However, we can be so grateful for the many prayers that have been answered along the way. Dad has had minimal to no side effects in his 8 weeks of chemotherapy. We had a CT Scan of his head, neck and chest today, and it showed that his very aggressive cancer is stable. It hasn’t grown at all since he started treatment. (The doctor thinks that there is a chance that it has even shrunk a bit!) That is a HUGE answered prayer. We don’t have to hope and wait for a clinical trial. Considering that this is a very rare cancer and there is no known protocol for treating it, this is truly a blessing. We found a drug that is effective on our first try!

And then there are the blessings that God gave to us without us even knowing. The doctors believe that the origination of Dad’s cancer is from a radiation treatment he got when he was a child. What if the cancer hit him 30 years earlier? Mama would have been a single mom to two girls who would have grown up without the most amazing dad. It totally sucks that we are dealing with this now, but it would have been so much worse any sooner in our lives. (I know that isn’t very eloquent, but that is just how I feel)

I don’t know how many of you may be dealing with a crisis and your optimistic and realistic selves are battling it out in your head. How do I pray about this situation just right?? Lucky for us that God doesn’t require us to say the perfect prayer to follow His perfect plan. He just wants us to come to Him. I encourage you to pray with all your heart and soul. Be honest with Him even when it is tough and sometimes messy. He knows what is in your heart anyway.

Ask Him to fill you with His grace and mercy during your time of need.  And He will.