Loud Holidays & My Son JJ

Copyright 2014 Theresa Harvard Johnson

While many people are celebrating 4^th of July, Labor Day, Memorial Day and New Year’s Eve with fireworks, bazookas, gunshots, laser shows and other stimulating activity, my son JJ is generally up all night vomiting, sweating, shaking in fear and experiencing sheer terror and massive anxiety attacks in the midst of all the stimulation from festivities in our neighborhood.

Up until our family received the diagnosis of autism concerning him, we were oblivious to his condition and responses. I’ve since learned that it is human nature not to concern ourselves with a thing if it doesn’t affect us directly. For most people, children like JJ are not apart of their reality — outside of passing them on the street or interacting in another type of environment.

JJ changed all that for us — opening our eyes to a whole new world. Despite the challenges, it has been a tremendous journey of acceptance and love. We have been changed forever by his wonderful life.

We went from being a very insensitive family to one that is extremely sensitive and compassionate to the challenges and difficulties others face – especially as it relates to young children. It is our daily prayer that our lives with our wonderful and blessed son JJ shines like a beacon of hope for others.

Please know that while I am giving you a glimpse into my family’s life, I am in no way crying out for sympathy, hitting a melodramatic soap-box to beg anyone for understanding. We love our son unconditionally, and would not trade him for anything this world has to offer. God’s hand is STRONGLY on his life and the testimony of this journey that he will give someday will be one of such victory that many lives will be changed.

Even now as I type this, I am more sure than ever that God sent JJ to us – to bring transformation into our lives. We are not the same people we were 10 years ago because of him, and I thank God for that.

I am writing this article for one reason: To be a voice for children and families who may not be able to express themselves fully concerning the challenges of “loud-holidays” as I call them, and to help others who love them understand how to be exhorters, encouragers and bring comfort when it is truly needed.

My hope is that as you read this, it will bring some understanding; and increase your compassion. I pray that some will view what is through the love you have for your own child, grandson, nephew, cousin, niece, parent or friend.

Extra Loud Holidays

Extra loud holidays in my neighborhood are common and extremely traumatizing for my JJ. It is also exhausting for our family as a whole. Instead of being a joyful time (and we do find joy when we can), the holiday is spent planning and making preparations for the intense “noise” that is associated with our neighbors’ celebrations. We find ourselves in intensely stressful situations in which we rely solely on God’s grace to get us through them. However frustrating it might be for us as his family, it is even more devastating and frustrating for him and other children walking out this same issue.

Most people with an autism diagnosis experience what is known as sensory processing disorder. Clinically speaking, it is defined as “a neurological disorder that causes difficulties with processing information from the five senses: vision, auditory, touch, olfaction, and taste, as well as from the sense of movement (vestibular system), and/or the positional sense (proprioception).”[1] It is the cause behind nearly all of the “temper tantrums” and “extremely difficult and awkward social situations” that parents with children diagnosed with autism face.

For those children who has extreme sensory processing issues, they use the term “meltdown” instead of “temper tantrum.”

What does this mean in “Theresa” language? It means that the sudden flashes from light, including firecrackers; the loud booms, sizzles and crackles; the celebratory gunshots, and piercing whistles, the large gatherings of noisy crows (especially consisting of strangers) just before the rockets take off; combined with rioting laughter, shouts, voices, falling embers from the sky and blazing, sometimes strained sound-systems lining nearby streets, and parking lots in dissonance send the nervous systems and sensory factors of my son JJ and others like him into severe overdrive – triggering uncontrollable anxiety attacks, panic attacks and/or violent tantrums.

Yes, I said violent. We need truth here.

For those in spiritual overdrive, my blatant honesty might be a bit too much for those caught up in constant religious faith statements. Sharing our journey, JJ’s testimony in progress with you is not doubting God! My family and I fully believe in the power of God to heal. We fully believe in speaking life into every situation that we encounter, but we refuse to ignore the steps we take daily or the moments in which we must overcome. Despite what religiosity has taught most people: These children ARE NOT battling demons, evil spirits and neither are they in need of special exorcisms – all of which people told us we needed. As a people EDUCATION is needed not only in the spirit but in the natural. We were even told that “we were the problem and the open door” to his struggle. Yes, people among the congregation – in their insensitivity, single-mindedness, and ignorance – brought great hurt to our family.

Examining Sensory Processing Disorder

Sensory Processing Disorder is not about evil spirits. It is about neurology and the brain; and the need for God’s healing touch. For some of these kids, it’s like walking around with all the nerves in your body exposed and then having someone grab you and hold on while you are writhing in incomprehensible pain. It is a malfunctioning or faulty “nervous system” that amplifies the FIVE SENSES far beyond the human brain’s capacity to PROCESS them all.

Do we pray? Yes.

Have we seen healing? Yes, tremendous healing.

Are we believing God for total healing? Yes.

But in between the progressive healing that we see and the hope for a miracle, we have had to gain practical skills to help our beautiful, loving son and precious gift from God.

Quite honestly, I couldn’t even begin to tell you what “LOUD HOLIDAYS” looks like in our household if we do not PRAYERFULLY PREPARE for them. I will simply say that in my home, calming JJ requires saturated prayer, extensive love, lots of comforting and understanding, and dedicated attention from both my husband and I as we lay in the bed with him, holding him tightly – sometimes cleaning up behind him – until it is over. There are many times we have laid there, crying with him in the midst of his overcoming.

At the same time, God is increasing our love, increasing our patience, teaching us how to pray, and giving us more healing every day. JJ understands what is happening to him now, and this is HUGE. When he sees himself on the verge of meltdown he comes to us and he says, “Let’s rest or I need help.” This is a major, major milestone. He is even in a place now where he takes steps to calm himself.

One strategy that he uses is moving through the house closing the blinds and windows to block the flashing lights. Then he asks one of us or both of us to lay down with him so he can fall asleep. Holy Spirit meets us, and he drifts off into a deep sleep until it is over.

SPD is why many children walking through this diagnosis are unable to:

• Go to a bowling alley on laser show night
• Watch a movie in a local theatre
• Sit in a crowded restaurant on a Sunday afternoon
• Attend a birthday party at Chucky Cheese
• Interface with large groups in unfamiliar environments, tight quarters
• Shop in crowded malls on Christmas holidays
• Sit in a football stadium
• Or enjoy a fifteen-minute fireworks show

Some parents have adapted by allowing their children to wear headphones to deaden the noise or squeeze the head, or go on late-night country drives out of the city until the wee hours of the morning. Listen, we’ve tried it all! And after all the excitement is over, it takes a couple of days for our son to fully recover and for my family and me to finally rest.

A Brave New World

As JJ’s parents, we do our best to educate those around us with whom we interact with on an intimate level. After all, if they are a part of our community then we need their help which requires that they understand certain situations when they occur. We had an incident once when our son left the house one day on a “walk.” My neighbor knew that he was not supposed to walk alone and immediately interrupted that situation. For most people, seeing an 8-year-old walking the neighborhood would be no big deal.

So you see, in the ideal situation, we would love for our neighborhood to limit their holiday festivities within the “streets of our neighborhood” to an allotted time period. Yet, we have no reasonable expectation to expect them do so. After all, these are holidays and this is what we expect people to do.

Instead, we have learned to leave the vicinity and head for isolated areas of the county from the time the sun sets until the wee hours of the morning; or follow JJ’s lead and have him sleep through it. As parents, we must learn how to make appropriate concessions for our child whenever possible, and educate others when appropriate.

By the way, the term “autism” does not reference one specific condition. Rather, it is a term used to describe a complex, wide range of disorders associated with brain development – all of which have varying degrees of severity. Over the past 40 YEARS, these conditions have increased 10-fold.[2] Studies also show that autism is four to five times more common among boys than girls.[3] An estimated 1 out of 42 boys and 1 in 189 girls are diagnosed.[4]

Take a look at these stats. Our communities – whether in the neighborhood or inside physical congregations – must be aware of this increasing culture, and begin taking steps to educate those communities concerning this health issue. At the same time, we must also learn to embrace the beauty of these precious children who will someday fully integrate into our communities as adults.

Finally, we must remember that the differences we often see in those around us are mirrors into our own hearts. What are we really thinking? How are we truly responding? These are the questions set before us.

Without a doubt ALL LIFE is beautiful! Every single soul that enters the earth is worthy of love, acceptance, belonging…. living. I want to challenge you to really grasp hold of this truth…. and embrace those whose uniqueness challenges our view of life. (TODAY, my family and I are happy to report that JJ is healed completely in this area. At the time of writing this article, this was our normal.)

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