My Son JJ, Autism & LOUD HOLIDAYS (2)

Copyright 2014 Theresa Harvard Johnson

While many people are celebrating 4^th of July, Labor Day, Memorial Day or New Year’s Eve with fireworks, bazookas, gun shots, laser shows and other over stimulating activities, 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 “loudness” from festivities in our neighborhood.

Up until our family received the diagnosis of autism concerning him, we were oblivious to its impact and its effects. It is human nature not to concern ourselves with a thing if it doesn’t affect us directly. JJ’s life in God has miraculously changed ours.

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 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. As a family, we are way over that mountain – which we have travelled alone without any support from anyone other than our spiritual family. We have lived a life in which we had to learn how to ensure our son’s safety – even if it meant not going to birthday parties or avoiding gatherings with large crowds and tons of strangers. As I move through this article, you will understand that statement better. One thing is sure, 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 is one that he will give himself some day.

Even now as I type this, I am more-assured than ever that God sent JJ to us. 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 better understand how to be exhorters, encouragers and bring comfort.

My hope is that as you read this, it will bring some understanding; and increase your compassion for others. I pray that some will view this article through the love you have for your own child, grandchild, 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 have extreme sensory processing issues, they use the term “melt down” instead of “temper tantrum.”

What does this mean in “Theresa” language? It means that the sudden flashes from firecrackers; the loud booms, sizzles and crackles; the celebratory gun shots, and piercing whistles, the large gatherings of noisy crowds (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.

My blatant honesty here might be a bit too much for some. Sharing our journey 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 what is before us in the moments in which we must “overcome.” Despite what religiosity has taught: These children ARE NOT battling demons, evil spirits and neither are they in need of special exorcisms – all of which people at different times have told us we needed. (Just like anyone, demonic oppression can occur… especially when these kids are abused, neglected, exposed to things they shouldn’t be, etc.) As a people, however, EDUCATION is needed not only in the spirit, but in the natural. Sometimes the greatest struggle in the midst of a disability is NOT the disability itself, but the IGNORANCE that shrouds it. 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.

Healing came to me personally in a dream as the Lord ministered to my heart concerning my son. Then, I was led to a powerful parable (John 9:1-7) that completely set me free.

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, and GOD IS DOING IT.

But in between the progressive healing that we see and the hope for a miracle, we have had to LEARN NEW SKILLS and gain practical skills to help our beautiful, loving son and precious gift from God. We can’t be so spiritual that we ignore the practical application OF THE SPIRIT.

Quite honestly, I couldn’t even begin to tell you what “LOUD HOLIDAYS” would look like in our household if we did not PRAYERFULLY PREPARE for them. I will simply say that in my home, calming JJ requires saturated prayer (including prayer chains), 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 or wanting to cry with him in the midst of his overcoming, his victory... the continuous making of his testimony.                                            

At the same time, God is increasing our love, increasing our patience, teaching us how to pray and giving us more healing every day. We have even found ourselves praying for and comforting other parents and children who are newly diagnosed or are in the tough parts of their journey. JJ understands what is happening to him now that he is a pre-teen, 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 deliberately calm himself. EVEN THIS was something that practitioners never saw coming.

One strategy that he uses is moving through the house closing the blinds and windows to block the flashing lights and lightening bolts that trigger him. 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 I to finally rest. Sometimes, we might not get to rest until days later — but that’s okay because we are here for JJ. God entrusted him to us.

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. But in JJ’s case, it is a big deal. The wrong noise could have caused him to run out into the street into on-coming traffic or run until he did not know where he was. From the age of 3 – 8, JJ was known as a “runner” by his teachers. Now, nearly three years later… running isn’t even an issue. He has OVERCOME the pressure to do this.

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 for them do so. After all, these are holidays and this is what people 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 if we can; 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 EVEN IN THE MIDST OF INTERCESSION AND PRAYER. At the same time, we must also learn to embrace the beauty inside these precious children who will someday fully integrate into our communities as adults. Unfortunately, MANY congregations are ill-prepared to serve those special needs on any level.

God is also using these children to give birth to deep depths of love and compassion in our respective communities, and expose the nature of men’s hearts. In fact, I believe our Father uses differences to “shine light” on our hearts all the time — and compel us to change. Remember, the greatest commandments operating in the lives of believers is LOVING GOD, and LOVING OTHERS.

So, people of God, when loud holidays come your way, consider us and families like us as we continue in the promises of God as the testimony is made complete.