Tell us about your life. What constitutes the average day for Pamela Steuart?
There are three facets to my world that I constantly try to balance throughout each day: Clearly being a good wife to my husband, a good mother to my children, and a supportive friend to the people I am lucky to have around me. Those are my first priorities.
I have my own business—Pamela Steuart Fine Art, LLC. Art feeds my souls and I love what I do. When you run your own company and produce the product as well, you are the accountant, the web-master, the marketing director, the delivery guy and the artist.
My youngest son goes to school for half a day and the rest of my afternoons and evenings are spent with therapists, doctors and playmates.
Your son was born with Down Syndrome. Can you shed some light on this condition?
Down Syndrome is a genetic condition. Each person is born with 23 sets (pairs) of chromosomes in each cell of their body. A person with Down Syndrome has on extra chromosome on that 21st set. Hence the name: Trisomy 21. It’s a little something special in every cell, so Down Syndrome can manifest itself in so many different ways. Just like the general population, people with D’s are very different from one another. In fact, people with Down Syndrome have more in common with you and me than they do with each other.
Riley was also born with Apraxia of speech. It is a disorder that makes intentional speech very hard. Riley's apraxia is severe and at six years old he has only a handful of word approximations. He has been doing speech therapy since he was six months old. He has an incredible Speech Language Pathologist now, who is making a big impact. Riley is lucky to have been born in the iPad generation and uses an iPad to communicate. There is a speaking software program offered on the iPad called Proloquo2go that is just remarkable. It is his voice.
The apraxia presents a MUCH bigger challenge in Riley's day and in our lives than Down syndrome. I find myself "forgetting" that he has Down syndrome. Its like a cold. Its something that he has, not something that he IS.
What are some of the most difficult challenges a parent faces when raising a child with Down Syndrome? What are some of the greatest pleasures?
I would say that the most difficult challenge a parent faces when raising a child with Down Syndrome is adjusting to their arrival. You have to deal with quite a few, "Oh, I'm sorry" when you are thrilled to be bringing home this fabulous new member of your family. It’s hard to know what to say and you worry about their future; who will care for them when you are gone.
I am thinking about the person who might be reading this article when I answer the question about difficult challenges. I would like to focus on the place that these challenges will take you, rather than the challenges themselves.
As a parent of a child with special needs, most people feel like they are being thrown into a pool without ever having a swimming lesson. All you need to do is take your baby home and love them; they are so very easy to love. In fact, its hard not to favor this special little being. As a parent (as a person) you are going to be so much more interesting, so much more intelligent, so much more enlightened because this little person is your child. God knows that a parent will do whatever it takes to make a good life for their baby. He is taking you to these new places for a reason.
The greatest pleasure in raising someone special is having the opportunity to learn from them, watching them work extra hard and seeing the huge sense of accomplishment they feel with any achievement.They will inspire you. This little person has been sent to grow the people around them. You get to watch it all unfold.
You are the mother of two other sons. Can you tell us a bit about them?
We have two older sons who are 18 and 22. Nick is a senior at Broad Run High school. He has always been an athlete and works at a local (Fitness First) gym. He is applying now and will be leaving for college in the fall to study Kinesiology. Our oldest, Cameron, is a music major at George Mason University. He is a classically trained violinist who plays every instrument. He teaches music lessons and works at a music store (A&A Music) here in Ashburn, while going to school and performing with the orchestra as well as his own band.
You also work as an activist for special needs kids; can you shed some light on the organizations that you are involved with and your role with them?
I wouldn't say I am an activist for children with special needs. I know mothers who are activists; I cannot wear that badge.
I am an advocate for my son. Each parent fights for the best programs and educational placement for their child's specific needs. You learn how to gather data and educate yourself. You learn how to stand up for what your child needs and you learn how to get it. The people who have older children in the educational system have paved my path and the changes that our generation fi ghts for now will help those coming up behind us.
I created a support group page on Facebook for families of children with Down Syndrome in the immediate Ashburn area.It is over 45 families strong now. It is a closed group so that we can share honest, helpful information (and the occasional criticism) about doctors, therapists, schools, teachers, everything. It is a wealth of information and inspiration. Having support makes each day so much richer. Other parents are the greatest resource.
You are also an accomplished artist. What’s your medium and where can we see you work? What’s the inspiration behind your work?
Art has always stilled my mind and soothed my soul. I am thrilled that I have been able to do what I love for over 20 years now and the demand is still growing. It really isn't work. I am painting almost exclusively these days in oil. I have several stores and galleries that sell my work all over the southeast, from Virginia to Magazine Street in New Orleans. I have a wait list of just over a year for private commissions. My website is www.pamelasteuart.com. You can fi nd me on Facebook at Pamela Steuart FineArt (fine art is one word).
A little over a year ago, I started a second company called Madeline Ware. I have a blog and a Facebook page where people can see those pieces. Th e work that I do through Madeline Ware is a little less formal and a little less expensive. It gives me a great third outlet.
I am constantly inspired by new things everyday, everywhere. A drive to Upperville, some incredible music, an hour on Pinterest, some well put together words. My work also evolves through clients and the new directions they take me through their commissioned pieces. I have this bucket in my head that is spilling over with the most incredible ideas. I just can't build the canvases fast enough!
What recommendations do you have for parents who may feel overwhelmed raising a child with special needs?
If I could advise a new parent of a child with Down Syndrome about what has helped me the most on this road, I would say fi rst and foremost: find support. You are not alone on this new path through life. You are going to new places, great places, with the best people.
What’s next for Pamela Steuart?
Next for Pamela Steuart? My own stores and galleries. Th e big boys are almost done. My husband travels. Riley will be in school full day soon. I am ready to let someone else do the marketing, the accounting, the supply orders and deliveries. I am going to put on some good music, make some hot coff ee and paint till that is empty!