IN SEARCH OF JOSHUA

with No Comments

My story begins on June 7, 1992, when my husband and I received a call about a baby born in another state with Down Syndrome. On June 8, 1992, at approximately 2 p.m., one of the most beautiful babies I had ever seen was placed in my arms. As I looked into his beautiful blue eyes, I felt he was pleading with me to promise that I would do whatever possible to help him find his way out. Joshua was our fifth child, four other beautiful children had grown under my heart, Joshua had grown in my heart.

My background is in Labor and Delivery and Neonatal Intensive Care Nursing, so long before Joshua arrived, I had consulted the physicians and practitioners I worked with for so long about where to begin whenever our baby did arrive. I was told to begin Early Intervention as soon as possible, therefore, on our first day home with Joshua, I contacted the Childnet services in our area, and by August, Joshua was evaluated. We started our program in September. Joshua was immediately started with Physical and Occupational Therapy and an Early Intervention Teacher. I was so excited because I just knew this was the answer.

At six months of age, Joshua still had low tone, terrible reflux, and he was not very mobile. I was consistently reminded, whenever I mentioned concern, that Joshua had Down Syndrome, therefore, this lack of progress developmentally was expected. It was at this time that we heard about Vitamin and enzyme therapy that was being used by some families of children with Down Syndrome. After reading the information available and talking to parents who were using this method, we decided to begin. O.K., I thought, now we have found the missing puzzle piece to fulfilling my promise to Joshua now, I could find the child I knew was behind those beautiful eyes! The vitamins and enzymes helped Joshua for the first time in his young life become free of ear infection and congestion without prolonged use of antibiotics, and he seemed to be so much more aware of his surroundings. We were elated because we knew the combination of vitamins, enzymes, and Early Intervention would be the answer to our prayers.

Joshua progressed at what the professionals referred to as, “as close to a normal developmental rate as they had ever seen any child with Down Syndrome develop!” Unfortunately, at one year old, we hit another developmental wall we just could not get over, and it was at this time that we heard about Piracetam and NACD simultaneously. We immediately started Piracetam and we planted the “NACD SEED.” Finally, the missing piece to the puzzle! Piracetam had to be the final piece, I was convinced! On Piracetam, Joshua s awareness exploded, it was as if he had awakened from a sleep! Over the months, Early Intervention, vitamins, enzymes, Piracetam continued and we just knew this was the answer.

As Joshua passed his second birthday, I began to have concerns once again about his lack of progress, however, I was once again reminded of his Down Syndrome, and as always, the expected limits to his abilities. At three years old, Joshua was reevaluated by the school system, and they confirmed my growing concern, they labeled Joshua as 18 months developmentally and Moderately Retarded. To any parent who has been through this, I do not have to describe the pain in my heart that this evaluation caused. I wanted to scream and tell them, “No, you don t see the Joshua I see, please, please, give him another chance!” The guilt was so intense, “Where had I failed as a Mom to make them think such things of this wonderful little boy?”

We were now told that Joshua needed to be in a noncategorical preschool program five days a week. At this time I was already homeschooling two of my older children that were still at the high school level, and I wanted so much to homeschool Joshua, but I felt I had failed him so miserably already, I supposed it was time to let the “real experts” take care of him. So with heavy heart and spirit I agreed to allow Joshua to attend school three days a week. One day a note came home with an alphabet sheet, it basically informed me that the teacher did not expect Joshua to learn the alphabet, but she wanted me to know what the other children were learning! Well, needless to say, this was a year that many IEP s were called at my request. At one of the last IEP s, I was told that I was on a major “EGO TRIP and that I needed to accept the fact that there were just some things Joshua would NEVER learn to do because he had Down Syndrome. I think all I ever wanted was to hear someone acknowledge that they saw the same bright Joshua that I saw, but, unfortunately, that never happened. It became more and more apparent to me that at three years old Joshua s limits had already been decided by these professionals. They had already decided his limits based on their “moderately retarded” label, and it didn t matter what Joshua did, the decision was already made! Therefore, there was no need to even talk about rising above the imaginary ceiling that they had in place, it was for sure he would or could never conquer it. Joshua s beautiful blue eyes began to fade just a little, as if he were beginning to believe what they were saying about him.

It was at this time that the NACD seed and the face and the intensity of beautiful Linda came back to me. I once again remembered how Linda described what NACD had done to help her son. I had a renewed burn to bring my son home to be taught in an atmosphere of love and potential. I wanted to teach him in an atmosphere where there were no fences, no mention of retardation, and no labels.

The Miracles of Child Development tapes became my strength, my ammunition to counterattack all of those who continued to tell me I was not capable of teaching Joshua at home. I had finally understood that I was an expert in the most important field that was the field of Joshua.

Shortly after Joshua s fourth birthday, my husband, myself, and Joshua were finally in Utah to meet with Robert Doman. I was so excited, so nervous what would he say about Joshua? I prayed, “please God, let him see the Joshua I see!” Well, to those of you who are fortunate enough to have met Robert Doman, you know my prayer was answered. For the first time in Joshua s short life, someone besides us validated that Joshua was very “BRIGHT!” My heart overflowed with joy, because I knew that I could finally begin to fulfill the promise I had made to my baby, I could, through Robert Doman s knowledge, help the real Joshua find his way out. Finally another piece to the puzzle was in place.

As I write this letter, Joshua remains on vitamins, enzymes, Piracetam, and has been on program with NACD for six months. It has been a culmination of frustration, exhaustion, and total joy! In these few months of program, Joshua has hugged my neck and called ME, “Ma Ma.” He has hugged his Dad and called him “Da Da.” I can not even begin to describe the joy when those words are directed to you with purpose and awareness. He is just beginning to use two word “couplets.” So, on the days when there appears to be all work and no visible benefit, I remember the hugs, but mostly, I look at the eyes that seem to say, “thank you. Thank you for believing in me. Thank you for helping me find my way out!”

To Robert Doman, I say, “thank you,” for committing a lifetime to helping all the Joshuas find their way out, and, “thank you,” for helping all of us that love those Joshuas feel the joy that comes with the feeling of hope in unlimited potential that you give back to us.

God Bless

Reprinted by permission of The NACD Foundation, Volume 11 No. 2, 1997 ©NACD