Did You Say Dyslexia? No, I Said Dyspraxia: The Challenges of Having a Condition No One Has Heard Of….

From the day our son was born, my husband and I knew that our son Travis was a challenging child. The first night of his life, all he did was scream. He could never get a good latch and nursing turned into a disaster. At six-months old, then a year, then three-years he still wasn’t sleeping through the night, despite our best efforts with every sleep training method known to Man. With the exception of talking, he hit every milestone on the late side of normal. Even talking brought its own set of challenges to our son. More often than not, I had to serve as interpreter for him when he was speaking to other adults until he was four years old and even then he still could not speak clearly.

We “wrote off” many of the challenges to a combination of his strong-willed personality and our being first-time parents. Eventually, though, it became obvious that something wasn’t quite right. Our pediatrician dismissed our fears telling us “every child is different”. When I mentioned that at four our son still did not dress himself our pediatrician’s answer was, “make him do it.” Of course, I had already tried that and very little good it did. Travis couldn’t seem to make his limbs do what he wanted, inevitably becoming tangled in his shirt or consistently putting both legs in one pant leg. If I wanted to be anywhere on time and avoid a meltdown based on sheer frustration, I had to do these things for him.

When Travis entered Kindergarten at the age of five, we felt confident he would have a smooth and successful year. He had done well in pre-K and his teacher assured us that he was ready and that his bright, intelligent mind needed the challenges Kindergarten offered.

We were bowled over then when his Kindergarten teacher told us that she thought he had a fine and gross motor skills delay, and that he wasn’t keeping up with the other kids in class. Two weeks later, I found myself sitting in the office of an Occupational Therapist at Scottish Rite Medical Center, part of Children’s Healthcare of Atlanta. After conducting a battery of tests on my son and analyzing the results of a questionnaire his father and I had completed, the OT diagnosed our son as having Developmental Dyspraxia.

Finally, we had an explanation as to our son’s lack of physical coordination, his inability to read or write like other kids his age, his speech impediments, and much of the frustration that plagued his daily life. But, what exactly was Dyspraxia? We had never heard of this condition before and were shocked to learn that it affects as many as ten percent of all children, most of them male.

I began scouring the Internet and public library for answers. Soon, I found the web site for Dyspraxia USA (https://dyspraxiausa.org/). The organization was a Godsend. I was able to learn about the condition and connect with other parents of Dyspraxic children. I was even able to connect with other adults who have Dyspraxia and learn more about the condition and the sorts of therapies that can help my son live a somewhat normal life.

Dyspraxia is a neurological condition that affects motor planning, or the ability of the mind and body to communicate and effectively coordinate movements of the body, in addition to certain mental tasks such as planning and following sequences in the proper order.

The condition manifests differently in each person and can vary by degree. We feel blessed that Travis has what is considered a mild case of Dyspraxia. After only a year of speech therapy, he speaks clearly with only one or two minor articulation issues. Physically, he is still clumsy, tripping over his own feet, falling down for no apparent reason, and running in an ungainly manner. But, he has learned to dress himself. He can now write and although it is still messy, his teachers know what he’s writing and are excited to see how far he has come since we began Occupational Therapy last fall.

Still, there are other children who can speak only with the aid of electronic devices that convert their typewritten words into a computerized voice…children whose Dyspraxia is so severe that they will never learn to write or run and play like other children.

The condition is complex and in the United States remains relatively unheard of and rarely diagnosed, despite the fact that Dyspraxia may affect as many as 1 out of every 30 children – more than Autism. Yet, throughout the United Kingdom, Canada, and most of Europe, Developmental Dyspraxia is as well recognized as Autism or ADHD is in the United States.

There is no cure for Dyspraxia, but, there are several therapies including Occupational, Physical, and Speech therapies which can help improve the motor skills and speaking skills of Dyspraxic children. One of the most upsetting aspects of Dyspraxia is the fact that everything is difficult for the Dyspraxic child. Every time they master one skill there’s something new to learn and learning new skills can be incredibly difficult for theses kids. Because so little comes easy to Dyspraxic kids, their self-esteem seems to take a huge hit. Add to that the bullying these children often endure, because they are clumsy, or “talk funny,” and life for these children can be “Hell on Earth”. Therefore, it is essential that Dyspraxic children be diagnosed early and obtain any necessary interventions while they are young enough to fully benefit from them. With the right professional interventions and the encouragement of their loving families, Dyspraxic children can thrive and ultimately achieve their dreams, just like actor Daniel Radcliffe-who was diagnosed with Dyspraxia at a young age.

To learn more about Developmental Dyspraxia and see a full list of symptoms, parents and teachers can visit the Dyspraxia USA web site (https://dyspraxiausa.org/). Remember, your child does not have to suffer from all of the symptoms to have Dyspraxia and that symptoms can vary by degree. If you think that your child might be suffering from Dyspraxia, request a referral to a developmental pediatrician or an Occupational Therapist from your child’s doctor.

Now that I have a happy and thriving six-year old, who is enjoying first grade despite the challenges he still faces, I can attest to the importance of early intervention therapies.

About Author: Dawn Sloan Downes lives in Atlanta, Georgia with her husband, musician Scott Downes, and their two sons. Dawn provides marketing communications services and writes for a variety of publications, including her personal blog http://belleoftheblog.blogspot.com.

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