Charlie Hart’s Story

From birth, we have had problems getting a correct diagnosis and needed services for Charlie Hart. When we found out about therapy services provided by the state, he was already a couple of years old. Unfortunately, there were no available therapists to do in-home services; he was without services until he was several years old.

Due to our own financial losses, we moved and Charlie Hart then began seeing a wonderful therapist at St. Mary’s outpatient speech clinic. He was learning to communicate more through sign language, something he had picked up on early in his infant years. The state was funding these services, however, their policies changed and Charlie Hart was unable to continue the much needed speech services he was receiving. Charlie Hart was now three and a half years old and nonverbal; anything he did utter was usually unintelligible and could not be understood by anyone.  Due to an incorrect diagnosis at birth, doctors kept misdiagnosing Charlie Hart with “developmentally-delayed speech” and they kept assuring me that he would “catch-up”. This made it even more difficult to obtain the services he needed.

When Charlie Hart was 4 years old, we were living in yet another county.  He was enrolled into a special needs Pre-K program. He had been diagnosed with a hearing loss and speech impairment. Charlie Hart appeared to be having difficulty physically adjusting to the public school environment.  He was constantly sick and even became hospitalized due to a respiratory illness, which hindered his learning and created further delays.

In April 2008, I decided to withdraw Charlie Hart from the public school system. Shortly thereafter, he saw a wonderful pediatric pulmonologist who traveled from Augusta to Athens to see him. She diagnosed Charlie Hart with bilateral pulmonary infiltrates and together we made a decision that he should continue to be homeschooled and receive special need services in his home environment to limit his exposure to germs. Charlie Hart received a diagnosis of apraxia of speech. Within one month, we moved again.

Now, at the age of five and a half, Charlie Hart is homeschooled and we travel out-of-county one day per week where he receives speech and occupational therapy services. The therapy clinic has made modifications for him to reduce his exposure to germs, but receiving services one day a week is not sufficient for Charlie Hart’s condition of severe apraxia. The other six days of the week, I administer Charlie Hart’s home program for speech and occupational therapy. I am not a speech therapist, nor am I an occupational therapist, and without needed materials, what I do for him is limited. My resources have been limited to internet tools and dollar store items. Although I have learned some valuable information about my son’s conditions and how to treat them through research on the internet, he has needed more extensive treatment than I can get from dollar store whistles and bubbles.

Charlie Hart has a form of Down syndrome called Mosaic Down Syndrome. After receiving an e-mail from the Down Syndrome Association of Atlanta regarding the Kiddos’ Clubhouse Foundation Scholarship, I had little hope left, but I decided to apply anyway. We had applied for other scholarships that had come our way, but to no avail. When I heard Kiddos’ Clubhouse Foundation was going to give $2500.00 worth of therapy equipment and supplies to a child with Down syndrome, I applied for him. The day I received the phone call from Kiddos’ Clubhouse Foundation informing me that Charlie Hart had been chosen to receive the scholarship is a day I will never forget. That Thursday in January, I was in tears and I was practically speechless. I can remember the looks on my other kid’s faces, as well, and how excited we all were. The feeling is overwhelming and it is like a much-needed “Christmas” that Charlie Hart has never had or would have never been able to have without Kiddos’ Clubhouse Foundation.

Before now, I have been unable to adequately provide all of the therapeutic equipment and supplies Charlie Hart needs for home-based intervention.  With this $2500.00, Charlie Hart will be able to get a majority of the therapy equipment and supplies he needs at home. In addition, the Kiddos’ Clubhouse Foundation is helping us in other needed areas such as finding appropriate therapy; getting some individualized training for Charlie Hart’s communication device, which we have no idea how to appropriately use; and getting the help that Charlie Hart needs so that he can one day speak intelligibly and communicate with his environment. Now, I feel sure that Charlie Hart will one day be able to tell you his own story. THANK YOU Kiddos’ Clubhouse Foundation!