Guest author Jennifer Pepito: Navigating the therapy maze

Originally published in Home School Enrichment

                 As I sat in the dusty waiting room with the walls covered with colorful childrens’ drawings left there by previous clients, I thought back over the years of helping my special child. It had started with a slow realization that she needed extra help to do all the things that had come so easily to my first child and became a relentless search to find help for her or to find out how to help her myself.  Although we started out cautiously in addressing her needs because of a desire to protect her childhood, we have tried several methods and continue to learn about how to help her as well as other children like her. Although ultimately how well they do is in God’s hands, we as parents are responsible to help each child he gives us. While searching for help, it often seems as if you are in a giant maze, stumbling along trying to find the way out, or in the case of parenting a special child, the one therapy that will give your child a chance at a normal life. We haven’t yet made it out of the maze, but here I will share a few of the steps we have taken and how they have helped us.

               Early Clues

The first clue we had that our child needed help was centered around her speech. She had crawled a little late, walked a little late and had been a fussy baby, but the real obvious difference was her poor articulation and difficulty understanding directions. She would gaze at me with her large brown eyes as I gave an instruction and then turn in circles trying to find the item I had pointed out that needed picking up. As we worked with her on learning colors, something most children learn fairly naturally, the three period lesson didn’t seem to stick. “This is a red block, this is a blue block” then a few minutes later, “ which block is blue?”  Even with limited choices, the answers to such simple questions seemed to dissolve from her memory files like water on hot pavement, and her fussiness and sensitivity raised warning bells in my mind as well.

We Find Some Answers

The first time we brought up her difficulties with our pediatrician, he simply chalked it up to being a second child with an assertive older sister. Still, the doubts were there so we took her to an acquaintance who had been a speech therapist. She helped her with articulation and helped me learn how to teach and reinforce proper sound formation, but her methods were a bit too aggressive for my sweet little four year old, so we discontinued seeing her. Although this speech therapist didn’t seem to think she had any other special needs,  and she certainly didn’t appear to, with her adorable little face, I was still concerned.  The frequent meltdowns, fear of playgrounds and fussiness about clothes all pointed to something being not quite right. After much searching, I finally found a book, “The Out Of Sync Child” which was a huge key to unlocking my child’s difficulties. This book described a  child with sensory integration dysfunction, a label which often goes along with children who have Aspergers or Autism, and the book definitely described my child. All the reading I had done up till then about special needs had shed no light on my daughter’s problems. She looked perfect, didn’t really fit into an Autism profile and so the origin of her difficulties had remained elusive.

More Answers Are Revealed

The next thing we tried was nutrition therapy. We sent a sample of her urine off to a laboratory who called us back to say our daughter was severely hypo-glycemic and needed an arsenal of nutritional supplements. I never understand how nutrition people can discover these things by mail-in body fluids, but this was another step for us.  I also was continually on alert with each new home school mom I met to try to find out if they had any children like mine and what had worked for them. The fact that I was home schooling had made me nervous to go to the school district for help, something that was suggested early on by another pediatrician. As homeschoolers we are often kept aware of the negative aspects of public schooling and that had sufficiently scared me to want to keep my innocent little angel clear of them. However, as time went on, it was more and more apparent that we needed extra help. Finally one mom I met suggested an occupational  therapist that she knew. This was another marvel for us, just to have some testing that clued us in on where her learning difficulties lay as well as someone who had experience helping a child like her. This was a wonderful time for my daughter. The woman she worked with was young and enthusiastic, and the office was full of fun experiences like swinging and sliding, playing games and puzzles. At the same time we began working with a speech therapist who, upon deciding that she didn’t really have articulation difficulties or Auditory Processing Disorder, helped her with her reading using the Linda Mood Bell method of phonics instruction. These were more pieces to the puzzle, but this is a million piece jigsaw and God has the box lid, so we are continually walking by faith with lots of prayer.

Another Step

Soon after this, when my daughter was just 9 years old we left for the mission field. We were serving near the U.S. border in Mexico, so although weekly visits to speech and occupational therapy were not possible we were still looking for help. After being in Mexico a short time and with my daughter at 9 years old still reading at about a 2^nd grade level we found out about the Neurodevelopmental Program. This was to work very well with our ministry because it involved many activities that she had been doing in speech and occupational therapy as well as vision exercises that I had learned of while studying about vision therapy. We only had to be seen every 3 months or so and were given a home program of activities to do with our child. It was a very enlightening experience for us, I learned many clues to teaching this daughter to read, realizing that although pure phonics had worked with my first child, my second child needed some sight word help to get her reading to the enjoyable stage. We did this program until after my daughter was 12 years old and although we still had work to do, the program had begun to embarrass my daughter, with all the special exercises that she, but not her several siblings, had to do.

After a short break to get moved back to the states, we started her in a special speech fluency program at a University near our home. As she has gotten older her communication difficulties are the most pronounced problem for her. Math is still a struggle, and spelling not perfected but the thing that most inhibits her life is her difficulty conversing with people.  Having a special time twice a week with the speech therapist who is helping her with communication skills is something my daughter really looks forward to.

He Will Direct Our Paths            

As the parent of a child with special needs I know the path to equipping your child with all they need for life is not marked by neon lights. As I have talked with other parents through the years of parenting my daughter, the one thing that is clear is that the perfect therapy or program to help them overcome their difficulties does not exist. Whether your child’s difficulty is as clearly defined as Down Syndrome, or is an undefined processing disorder the answer is still the same. Each day we must commit our decisions, our thoughts and our needs to the Lord, and trust that He will direct our paths. The verse that I have prayed for this wonderful daughter of mine is from 2nd Peter 1:3, “as His divine power has given to us all things that pertain to life and godliness.”(NKJV) Although there have been days when she has struggled in every area, yet when I see her compassion and creativity, her desire to be helpful and to love her siblings, I get a glimpse of the beautiful picture that God is putting together, one tiny piece at a time.

Jennifer Pepito is a contributing author of the book, Homeschool Methods, mom to seven children and joyful wife of Scott. Their family recently returned from several years of ministering to families and orphans in Mexico. Jennifer’s desire is to encourage moms to love their husbands, to love their children and to trust in God. She is available a few times a year to speak and can be reached at jennpepito@yahoo.com