Theresa Harvard Johnson

Our Son's Autism Diagnosis

(I guess you could call this an article; but in truth, I'm simply sharing my heart. This story is about my son, JJ, and my families journey these past eight years. Maybe you are having challenges as well. Perhaps your challenge is not with a child diagnosed with a disability, but a parent you are caring for or another loved one who may be in need. The fact is: You are in this place of seeings God's Glory in a situation that to those looking in -- would seem like everything but a place of hope and belief. For many reading this and who know me, I probably won't be spiritual enough for you -- quoting scriptures and making tons of religious degrees. You see, I KNOW my son and our family is in the hands of God. I already know that we are walking in victory in this area, but their are some truths in this walk that I am compelled to share. There are some challenges and struggles that are very real -- in the superNATURAL place in which my family daily lives. I pray that you are BLESSED in hearing part of our story.)

 

This is my son, Jeriah. He’s eight years old now and is the joy of our lives. Every night he prays with me and if I forget, he comes looking for me to make sure I pray over him before his head hits the pillow. Every morning he wakes me up with a gigantic hug and sloppy kiss; and expects to be prayed over by his daddy. He loves calling me by my middle name (of which I will never share), and telling me to, "Wake up!" He get's "right in my ear" while I'm sleeping and then shout it -- knowing I'll wake up in a panic, nearly rolling out of the bed. He thinks its funny.

 

He never calls me mommy. He simply loves dragging out that country middle name my mother gave me. I blame my husband Leonard for this -- fully. We are thankful to God for him and would not trade him for anything, and I mean ANYTHING. We love him so much, and I tell you, we've learned more from him than I know he will ever learn from us.

 

JJ was diagnosed with Fragile X Syndrome about five years ago, a genetic condition that causes mental retardation in varying degrees in children. The diagnosis, in JJ's case, has led to a clinical designation known as Autism - a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate, learn and interact with others.

 

The Fragile X gene is a maternal gene -- meaning it can only be passed down genetically by the mother. Even a male who has Fragile X cannot, in turn, give that gene to their offspring because it only affects the "X" chromosone - the one in the mother and the one passed from the mother.

JJ entered this world prematurely. In truth, there were questions as to whether or not he was going to make it when he was in the womb. My husband and I had complication after complication, and there were times when both of our lives were at stake. I tell you, I am thankful that it is ALWAYS God's plan that prevails. By the time JJ was six months old, my husband and I were still waiting for him to coo, to sit up, to make eye contact with us and to play like other babies played. By the time he was 10 months old, we knew something was wrong and began a quest of prayer, intercession and many, many doctors visits seeking answers.
 

No one had answers for us. We were so worried that even our prayers were frustrated. To be honest, we did a great deal of praying but our hearts were completely full of doubt and worry. Today, I can look back on these times and see clearly how the Lord used every moment to deepen our faith, trust and belief --- THAT HE IS A HEALER.

 

Back then though, we were desperate for answers. We didn’t know where to turn for help. Friends didn’t know what to say or do. There were no extended family members to help us. Our savings grace were the ministers in our lives at the time who reached out in comfort, encouragement, prayer when we needed it and support -- spiritually and emotionally when we didn't think we could stand.

 

I tell you, we ran away from people who always felt like a demon needed to be cast out or who asked us to "find out what we had done" to cause this. Yes, we had this from some people... and for a long time, I thought something was wrong with me. I felt like I had caused my son's condition. People of God, if there is someone in your life in a difficult situation, please understand that the best thing you can do is BE THERE FOR THEM when they need it. I learned quickly that while people mean well, they can sometimes do more damage than good when a family is going through a crisis similar to this one. I know some of you know what I'm talking about without my need to spell it out.

 

You see, our lives and everything we were used to changed dramatically. As JJ grew, our challenges grew... and we still didn't have a diagnosis. One day, while walking through CVS my children and I heard some loud noises coming from the far corner of the store. Without thinking, pushed the then two year old JJ in the CVS buggy through the isles until we found the source of the noise.

 

Inside a buggy, was an 8-year-old boy making the same noises as my son. His mother, who was also an RN, was eager to answer our questions as we fired them off one by one without even thinking about it. I stood there wanting to cry. I had found someone who had gone through EXACTLY what my family was going through now. She was a believer in Jesus Christ also. Without hesitation, she told what I needed to do and where I needed to go to get it done -- even giving me her phone number for support and guidance. Within days, we had followed through on every single piece of advice she'd given.

 

We had made an appointment with a leading geneticist in the Metro Atlanta area, and within 4-weeks we had condlusive results.

 

People of God, I cannot describe the weight that was lifted off of us in knowing what we were dealing with concerning our son. But in dropping that weight, we picked up another one. You see, as believers, Leonard and I felt like we were not trusting God by listening to the doctors. We thought that by listening to the diagnosis, we were some how agreeing with the enemies plan for our son's life verses that of God.

 

The nurse we'd met said this to me: "Don't be bound by religion and legalism. Even as believers we don't have all the answers. If the resources are available to you, GET YOUR SON TESTED. In doing so, you're not bowing down to bail. You're not saying that you don't trust God. You are using the wisdom that God provides. Don't you know He anoints doctors to get to the root cause of things?"

She encouraged me to become as informed as possible concerning my son's situation. She challenged me to invite the Lord into every aspect of our decision making DESPITE what anyone had to say because at the end of the day -- it was OUR FAMILY that would have to walk out OUR CIRCUMSTANCE.

 

God met us as we took the steps to learn everything we could about the diagnosis. We stood in prayer, lifting up the will of God over our Son -- not the diagnosis. The diagnosis, however, allowed us to pinpoint our warfare and build our son up in intercession in the areas where those challenges resided. in other words, we learned that "finding out what was going on inside him" WAS NOT a final word.

Fragile X is the gene that causes autism. In my son’s case, he does not exhibit the “classic” autistic symptoms – the ticking, rocking, inability to socialize, head banging, etc. Instead, some of the behaviors we encounter include:

  • Significant speech and language development; (He said "mama" for the first time when he was five.)
  • Significant learning delay (as it relates to academics); (At 8, he has now learned to recognize his alphabets, his name when written, his numbers, etc.)
  • Significant Aggression (We've pinpointed the causes of his aggression which are change in environment; change of routine; too much activity; the introduction of new people into his life, etc.)
  • Short attention span (We've learned to work within his boundaries; and keep him moving and focused but without getting agitated or frustrated by his busyness)
  • Extreme hyperactivity (We've learned calming techniques to deal with the sensory issues)
  • Aversion to loud noises, flashing lights, bright lights, etc. (We've learned to buy earphones during 4th of July Celebrations and keep him away from places that have rapidly flying lights or flashes; During storms we talk about the thunder, the lightening, the flashes, etc. as a family and comfort him.)
  • Severe anxiety disorder (Sudden changes in the environment can cause extreme anxiety -- including physical shakes, instant nausea and vomiting)

Early on, we were told that our son would never speak and that his ability to learn academically may never equal that of our other children. I even had a doctor say this us: “Your expectations are too high. You need to be realistic about the condition of your son and accept it.”

This hurt me to the very core of my being. After I gave him my thoughts on the matter, and told him that I was standing on what the Lord had told me I left that office. After a five minute melt down and pity party behind the wheel of my car, I began pulling down everything that had been spoken and standing on the word of God. When most people come in contact with my son, they can't tell anything is amiss.GOD IS A MIRACLE WORKER!


I declared before the heavens and the earth that I would do my part in ensuring that my son would have the best chance at life possible. That included following up and learning everything that we could about this diagnosis AND tapping into every single resource our community had to offer. We stopped talking to people about him, especially church folk! They saw our quest for understanding like this: "How can a prophet of the Lord rely on the world system for answers." People of God, that's not what my husband and I were doing.


In our quest to learn and find resources, we were applying the wisdom of God. I share this simply to say: "Don't let legalism BLOCK YOU from doing whatever is required to give your child or your loved one every opportunity to be free of the obstacles in their lives." Were it not for our diligence in searching, we would never have tapped into the resources that Father is NOW USING to help us along this journey.

You see, we went to our church community because we needed help. As I write this, I want you to consider those in your church community who may have children, parents or loved ones with special needs. Ask the Lord how you can move from that place of prayer into a place of action in their lives. This doesn’t always mean you have to baby sit, but there is something we can do to help one another. A young woman called me one day and said, “When was the last time you’ve been to a movie Theresa? Let's take some time to get out of the house and enjoy the day.” I tell you, I cried like a baby. She didn't know this, but it had been more than a year since I'd been to a movie. Even more so at that time, the $10.50 it cost to go was gas for me and my family -- and I couldn't make that decision without agreement from my husband. Folks may not understand that, but that's where we were at that time -- $10 was like a $100 and my family had to come first. I had to respect what my husband was able to do for us.

My husband didn’t mind giving up a night so that I could out and vice versa. At this point, he was the only one working since our income had come down 70 percent since I was now a full time mom. Our family, had moved from a place of not being concerned about finances at all into a place of not knowing how the mortgage or the utilities would be paid. I was a driven career woman and had never stayed at home with my children. The transition was unbelievably difficult for me. But all in all, it was God's work in me and in my husband. Again, we did not have a single person in our extended family to turn to for any kind of support -- emotionally for financially. We had two friends whom God sent during that time who loved us and supported us through this.

For a few months, my children and I would get together to pray for basic needs to be met; and pray for my husband’s strength to financially carry this family. When I look back at some of the most difficult times we’ve had, the only person I can see standing with me is Jesus. I even remember the day when we lost the battle in the midst of this trial for our first home. We had two days to leave and had no idea where we were going. Both of us were secretly crying when the children weren't looking because we didn't know how we would care for them. GOD MADE A WAY! DO YOU HEAR ME! (Today, I laugh at the devil because the home we OWN today is gorgeous! No scheme put us in it. PRAYER & BELIEF did.)

You see, even in the midst of our worse circumstances, my husband and I pressed into ministry. We never allowed our circumstances to stop us from helping and praying for others. With the little we had, we invited people into our homes who were evicted or in the midst of crisis. At one point we had 15 people (mostly children) living in a three bedroom house. Whether these people were grateful or not it didn't matter! What mattered was that we did what God said!

In every instance, we explained to people our situation and the situation with our son. We helped them in the midst of what they needed as well as what we needed. Again, I am writing this to encourage you. I tend to be really private about my life... but the Lord is really causing me to open up and share some things with Voices of Christ and here in this group. People need to know that God can move in the craziest of circumstances and situations. There is no such thing as HOPELESS when you seek him diligently and relentlessly -- I don't care HOW MUCH time it takes.

Today, there is so much misconception and undue criticism that faces parents whose children have special needs – especially in this area. There is a need for sensitivity and compassion in a greater measure in the body of Christ. I even had a church daycare worker threaten to kick my son out of childcare because they couldn't "handle" him. Please understand, I didn't have a problem with having him removed. I had a problem with the lack of concern and the lack of compassion concerning his condition. My husband and I are the type of parents that sit down with those teaching or watching our children to help bring understanding. We did that here, and provided insight into how to deal with key issues.

The problem was this: "There was no concern for the insight we provided. No efforts were made to work with us. No recognition that Father was using our son to prepare that church for growth. THERE WOULD BE OTHERS who were coming... with issues even greater than our sons."

So many people would see our son in these instances and say, “He just needs a good butt whooping! Can't you cast that demon out or something must be done about that behavior?”

I won't go into anymore details about this situation, but I will say this: "Parents! You are your childrens' best advocate in every situation. Do whatever is necessary to present your circumstances and needs, even if that means educating your church body on children with autism. If no options exist for you in those areas, then you have to do what is best for child including leave that church."

There were times when my husband and I were so tired and worn out from working with our son, that the we would not go to church at all. The ushers, the child care workers, the leaders of the church were so closed and without compassion! I realized that this was a problem in MANY places, not just where we were at the time.

In addition, my husband and I had to realize that if we had to address every single thing our son did solely based on behavior, every moment of his life would be spent engaged in a form of discipline. In other words, he'd grow only to know punishment and discipline without any regard or consideration concerning the diagnosis.

People of God, it’s EASY to look from the outside and pass judgment. My mother would often say this: “Walk a mile in another man’s shoes before being so quick to judge…”

Through prayer, Father showed me that when my son spins out of control that I should grab him, hold him in a tight grip (which deals with sensory in the natural), and begin to pray (taking authority in the spirit) and tell him how much I love him over and over again. As I did that, he would calm down quickly -- realizing that he's not being punished. Then, I would sing this song to the Lord while holding him: “You deserve the glory, and the honor. Lord I lift my hands in worship and I bless your holy name. You deserve the glory… and the honor…”

You see, my son can speak now. But, he has yet to achieve a place of conversation in which he can explain what has upset him or caused him so much anxiety. We still have to pray him through these moments. Then there are times when the Lord will lead me to sing, "We cry holy, holy…. Lord God… almighty, omnipotent, creator… you’re my master, my savior, HOLY….. holy… Lord God… almighty…”

This has gone on for years! I didn’t know why the Lord would have me do this. But let me tell you something, today it still brings him peace and… he has grown to love music, instruments, flags and banners .... and all manner of worship in the church. He sees that I understand the things that trigger certain behaviors and I can deal with them lovingly AND in power and authority. I can talk him through those situations with the word of God, letting him know that he's going to get through this. HE IS NOT that diagnosis.

People of God, don't allow the enemy to BEAT YOU UP because the healing doesn't come fast enough. The adversary loved trying to tell me and my husband that we didn't walk in power or authority. I KNOW THIS IS A LIE! Religion loves telling you that everything is a demon or a devil... and this to is a lie. Sickness is NOT of God. Mental illness is not of God. Mental retardation is not of God! BUT WHEN THESE situations come... we must walk through them WITH GOD regardless...

Sharing this testimony is in no way ACCEPTING this diagnosis or claiming this affliction over my son. It is, however, a walk in victory... watching Holy Spirit show forth Father's power...

 

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