John's Journey

For a while now I have felt the need to write this post, more for my benefit than for anyone that reads it. But I haven’t quite known how to put my many thoughts and feelings into words, until a week ago sitting in church singing the closing hymn:

It may not be on the mountain height
Or over the stormy sea,
It may not be at the battle’s front
My Lord will have need of me.
But if, by a still, small voice he calls
To paths I do not know,
I’ll answer, dear Lord, with my hand in thine:
I’ll go where you want me to go.
I’ll go where you want me to go, dear Lord,
Over mountain or plain or sea;
I’ll say what you want me to say, dear Lord;
I’ll be what you want me to be.

Now let me back up a little and explain why this hymn struck me so deeply.

About 5 and a half years ago we learned that we were expecting our third child. And after having two little girls we were very excited to learn that this one would be a boy. Johnathan Paul Strong was born March 23rd on his sisters second birthday. He came into this world a healthy, 7lb 15 oz baby boy.

 I remember feeling a little overwhelmed at the thought of having three kids to take care of but figured we would get through it. On March 25th while we were waiting for my Doctor to come and give me the OK to go home, John was being cared for in the nursery when he began to have episodes of apnea (not breathing) and staring spells. Within a few short hours he was transferred to the NICU at the University of Kentucky Hospital.




John had received a priesthood blessing before being transported, and we knew everything would be OK, but what did OK mean? I have never felt so helpless as a mother as I did arriving at the NICU seeing John under an oxygen hood surrounded by doctors. There was nothing we could do but pray. We spent as much time holding and being with John as they let us. They began test after to test in hopes to find a cause for his apnea episodes. Each test came back normal and because once he was transferred he never had another episode they sent us home just a couple days after we arrived. We stayed at peace knowing that everything would be OK.

John was a very laid back easy going little baby, who was adored by his sisters and us. I remember holding him and looking into his blue eyes and feeling like at times he was communicating with angels and that the veil was very thin for him. Early on he reached developmental milestones later than his sisters had, but I didn’t give much thought to it because I had always heard that boys develop slower than girls. Besides I had learned with Rachel that kiddos will learn things even without hours of prodding by Mom and Dad. I remember taking him for his 4 month check at the doctor and he rolled over for the first time on the doctor’s table. I was so thrilled and was more thrilled when I was able to get John to do it for Paul that night. But it was short lived, by the time John was 7 months old I could count on one hand the number of times he had rolled over. But at 7 months he could sit up by himself. I was concerned but figured he was “just a boy”. Around 8 months I decided to call and see about having him evaluated by First Steps, the early intervention program in Kentucky. We learned that he was delayed in all areas, but most notably in areas of motor skills and communication. I couldn’t help but wonder how had I missed this? That began the start of what has turned into years of therapy for John.

As the wonderful First Steps therapists came to our home each week, I watched and at first often thought to myself: I can do what they are doing, they are just playing. I would often feel like I had failed as a mother somewhere along the way. But the more they came the more I learned that, yes they were “playing” but there was great method to their play. They taught me how John needed to be played with to help him progress.

It didn’t take long before he was rolling over (at 9 months), which was followed at 11 months by crawling, and then walking at 18 months. We were so excited for that first word which came at 19 months. I have recorded in his baby book that his first word was “Ma Ma” but the one I remember most was while he was walking down the hallway and upon seeing me says “Hi” just as clear as clear could be.

Through the years we had noticed off and on him doing some odd repetitive behaviors, to me the oddest was crawling backwards while dragging his forehead across the floor. He would at times become very obsessive about playing in water, tearing up paper, spinning objects, and throwing things. At this young age he appeared to have fear of heights and had developed a fear to mechanical noises as well.

When he turned three, the therapy that John needed was no longer provided in our home where I could watch and then implement, but it was provided through preschool. It was a rough transition; the services that they were willing to provide were limited. But we put our trust in those that were working with John and trusted that if they saw anything to be concerned about they would let us know.

To this point the only diagnosis he had was that of developmental delay. Yet in the back of my mind I wondered about others. My biggest concerns about John’s development are how inconsistent he is; some moments he is right there with you, other moments he is in another world, other moments he is somewhere in between. We see this with retaining information and in communication. Next on the list of concerns is the amount of time and focus he gives seeking out sensory input and his fear of mechanical sounds. Receiving the results of some evaluations done by the school last spring propelled me onto a quest. A quest to understand my little boy and to make sure he is receiving all the help that he needs to reach his full potential.

John became my little science project this past summer. I made a lot of critical observations of him and how he played and interacted with others. My hypothesis: his brain is not wired like the average person. Yes he has delays but he doesn’t seem to progress or process things the same as a typical child. When John is compared to himself he is doing wonderful, but when I compare him to a typical four year old my heart breaks for him.

He has been seen by a Neurologist and has had an MRI. Since last spring he has been evaluated by two different Child Development centers who both have given the vague diagnosis of Global Developmental Delay, along with low muscle tone.  This year he has also had OT, PT and language evaluations completed at school. None of these avenues have been able to help us find an underlying cause for his delays, which range from 1-2 years. However he now receives Occupational Therapy once a week, Physical Therapy twice a week and Speech/Language Therapy twice a week and two sensory breaks through the school day.

His pediatrician had talked to me about a year ago about having a sensory evaluation completed and John receiving sensory integration therapy. Due to the distance of the facility I chose to take the “watch and wait” approach. One day in August as I watched John spinning my phone on the kitchen table over and over again with his nose an inch away from the phone, I decided no matter the distance it was time to see what sensory therapy had to offer. He has been going once a week for almost 3 months and we have begun to implement a sensory diet at home, where he has sensory breaks three to four times a day. The OT that works with him feels strongly that he has Sensory Processing Disorder (we are just waiting for an official diagnosis to be made by his pediatrician).

I feel like we are finally getting John the help he needs! And we are seeing great progress!

But the challenges are not over. The newest challenge is learning all about the programs and procedures to help pay for the therapy that John needs. It was when I was feeling overwhelmed and frustrated by the financial aspect of it all and wishing that I had a “normal” little boy that the words to the hymn “I’ll Go Where You Want Me to Go” spoke to my heart and gave me the peace and courage to go on:

It may not be on the mountain height
Or over the stormy sea,
It may not be at the battle’s front
My Lord will have need of me.
But if, by a still, small voice he calls
To paths I do not know,
I’ll answer, dear Lord, with my hand in thine:
I’ll go where you want me to go.

There’s surely somewhere a lowly place
In earth’s harvest fields so wide
Where I may labor through life’s short day
For Jesus the Crucified.
So trusting my all to thy tender care,
And knowing thou lovest me,
I’ll do thy will with a heart sincere:
I’ll be what you want me to be.

I’ll go where you want me to go, dear Lord,
Over mountain or plain or sea;
I’ll say what you want me to say, dear Lord;
I’ll be what you want me to be.

I never dreamed I would be the mother of a special needs child and had no clue how hard it would be to make sure John receives the help he needs to progress.  We are very slowly getting some answers but have no real idea what the future holds.  I feel John’s Journey is far from over. But trusting my all to His tender care, and knowing He lovest me, I’ll do His will with a heart sincere, I’ll be the mother He needs me to be.