Special Welcome to Down Syndrome Families
Special Welcome to Down Syndrome FamiliesMy Dallas Story
Name: Jennifer Ford
Occupation: Down Syndrome Guild – Executive Director
What might surprise people about working with children with Down Syndrome?
When you get to know people, you realize all their abilities and their potential. All the things they are capable of. Their wants and desires are not different from my own.
If a family who has child with Down Syndrome is moving here, what are some good resources?
For families with a child with Down Syndrome, I would definitely recommend giving the Down Syndrome Guild a call first. We have a membership database with over 1500 members. So once we get them plugged in, we can connect them with other families. If they are looking in Plano or they’re looking at Lewisville, we can find a family in that area that’s more than willing to talk with them and talk about their area and tools and stuff like that. That’s a great resource that we have, just being able to network with other parents.
What about schools?
If you are looking to go the private route… there is The Rise School of Dallas for younger kiddos and also Notre Dame School of Dallas – they start at age 8 and go through adult. The Rise School is in Highland Park, and Notre Dame is in Downtown.
For public schools in Texas, children with disabilities are eligible at age 3. Depending on the community and what school district they’ll be in, depends on what programming is available. The thing with public schools is they just vary – from school to school, and in different districts – as to what programs they offer for students with disabilities.
There for a while, Plano seemed to be the place to move for children with disabilities, but I have heard some conflicting opinions. When people call and ask where to go, we always say that’s the million dollar question. That’s when we really try to pair them with those families. We give them more perspective from people who are actually in the school and working with those teachers and special ed directors.
Call us, and if people have it narrowed down to an area, we can definitely tell them. “Yes, we’ve had parents that had a really good experience in this district and if you want to give us your contact information, we can put y’all in contact and you can talk about that.” I always encourage families just to get in touch with the district. Call the Special Ed director and chat with them. Say, “We’re thinking of moving here. Can you tell me about the programs you have?”
What are some good support groups?
Definitely our organization. We do activities and events for parents with children from pre-natal diagnoses all the way up to age 60. We have ongoing activities for parents as well as their children and siblings.
There’s a mother’s night out program called Nightlights, and Nightowls is another one. Churches and organizations offer those respite type programs so parents can get a night out and siblings can get a night out. They just have a lot of fun with each other. We have a list of them we can give to families.
We have a section called “In the Community” on our website that has a lot of resources.
What are some services you recommend?
A lot of the families coming in will want to continue the same therapies that they are currently getting, like speech therapy or occupational therapy. A lot of that can be offered through the school systems. And then a lot of people choose to go the private route. We have a list for our members of therapists and physicians that our families have used in the past. They aren’t necessarily specialists in Down Syndrome, even though a lot of people say ”Oh, I want someone who is a specialist in Down Syndrome.” But these are the people some of our parents have worked with in the past and have had good experiences with. So we feel comfortable with giving the list to people in their area and then letting them research those different practices and seeing if they’re a good fit.
Is their specific terminology that parents need to be aware to use in Texas?
I believe Texas is one of the only states that calls education progress meetings an ARD meeting, which is an IEP meeting elsewhere.
What financial support is available in Texas?
That’s a biggy when people are moving from other states. Parents are used to getting a certain stipend a month or whatever it may be and they’ve gotten it since their child was born….in some states. Some states do have a waiting list similar to the one we have in Texas. But a lot of families are shocked to learn ….I’ve heard… there could be a 10-14 year waiting period for the Medicaid Waiver Program in Texas. Those would provide funding for therapies and respite care. That’s a bit of a hit for them financially if they’re dependent upon that income. We have one sheet that explains the waiting list, which has all the phone numbers for how you can do it in each county that you live in. We also have a new parent guide and adult resource guide that is really good and has some information on it that explains what those Medicaid waiver programs cover and how to go about getting on those lists.
How do you recommend families connect with others?
Through Down Syndrome Guild events. We always have something going on. We do teen and adult events monthly. Then we have quarterly events for our new parent group. So those are great ways to get involved. Even if they just come for one event they’re going to meet other families. I think the school system is good, too. If you have a good teacher they will connect you with some other families. I think the Rise School does a really good job of hosting things for their parents. There are some Facebook groups online, too. Especially for the younger parents. There is Dallas Down Syndrome Crew for new families. They are a pretty big facebook group. There is also another one called Rockin 21….they are an older group.
What are some of the Down Syndrome Guild programs that you offer?
We break everything into four different age groups. So the new parent group is prenatal to age 4. Currently we do quarterly Dinner and Discovers. Parents, siblings and their children with Down Syndrome can come. We have child care for the little ones. Parents can network, get to know each other for a little while. And then we have a speaker that comes and talks about different therapies or whatever else may pertain to their child with Down Syndrome. Then we also do quarterly social events for the new parent group on top of that. We’ve done days at the zoo and things at the Little Gym. Again it is that networking and connection. Parents are the best resources for one another.
And then our teen and adults as they get to that transition age, we pick up our programming and do monthly events. It can vary from educational type seminars and conferences to social outings like bowling or going to a Rangers game.
And then outside of our membership we do a fall conference every year when we host different therapists, medical professionals, educators and then our parents as well. We also have a two hour educational series on Saturdays that we do in January, February, April and May.
All of these offerings are free….except for our fall conference. There is a very minimal fee to attend our fall conference. And it basically covers your food.
How would you describe the level of acceptance in our region?
In our group, everyone is very welcoming and more than happy to talk to new families coming in. They love meeting new families. They are just happy to share what they have learned with others.
How does the community support those with Downs Syndrome?
Our Buddy Walk is our biggest fundraiser of the year. And a lot of that comes from our families. They form teams and they get their friends and family on board. That is where A LOT of our funding comes from. We also have some very generous corporate sponsors who are with us year after year. We do a golf tournament that’s a big fundraiser for us in the Spring. We’ve been with Herb’s Paint and Body for 8 years with our golf tournament. They’ve been great partners to have and bring a lot of sponsors from their side of the table that support their business, as well.
What other recommendations do you have for someone moving here?
We recommend that families check out the Down Syndrome Clinic at Children’s Medical Center. They are a comprehensive consult clinic. They see patients from birth to age 18. There is not currently an adult clinic but it is an idea that’s been lingering for a while and I think a lot of people are interested in exploring that option.
Where are some fun places to go that tend to be accommodating?
The Dallas Children’s Theater does a sensory-friendly performance of several of their shows. Which I know has been real popular with some of our families. We partner with the Cistercian Prep school. They host a dance for our teens and adults that partner with some of their students. There really are a lot of organizations and it seems there are more of them every year that host things for kids with special needs. I feel like our community is very welcoming and don’t think twice when they see a large group. For example, we take large groups to the Rangers Game or they’ve done the Concerts on the Creek at Watter’s Creek in Allen. Our community is very accommodating. I don’t think anyone would turn someone away necessarily because they have a family member with Down Syndrome. When we partnered with Little Gym to do a little gym play date, our families LOVED that. That was a big one for them. Hawaiian Falls – they do a Champions Day for children with Special Needs.
What if you move nearer to Fort Worth?
There is a group that is basically very similar to ours they are called the Down Syndrome Partnership of North Texas. They cover the Fort Worth Side of the Dallas Region. I would say, Grapevine – west. That is more their territory and they have parents very similar to ours that can speak to those school districts and can pair families.
What City/Neighborhood do you live in?
What do you like about Melissa?
My husband and I both grew up in really small towns in Louisiana and Texas and we liked that small town feel. After college we were looking for the big city experience. We enjoyed exploring all of Dallas. Then we started thinking about a family and children. We have a fourteen month old now. We really like that small town feel and here you’re still not too far away from the big stuff that Dallas has to offer. We like knowing our neighbors.
How does Melissa compare to the other communities you’ve lived in here?
Actually, when we first moved here we were apartment dwellers in Lewisville and then purchased our first house in Fort Worth. Melissa is growing a lot. We saw that with Keller, as well. But definitely, it’s a smaller community. It has more of a family feel, I guess. Our previous neighborhood was still younger families, but this is just more community involved.
For a small town, one thing we really do like about Melissa is that they have a big fireworks display ever summer. Everybody goes to the big park and brings chairs and blankets. They have a BBQ cook-off. That’s really something fun you don’t usually see in small towns. You expect to get it in McKinney, or Addison has a big one.
What kind of things to you do for fun?
Most of the stuff we do out and about is in McKinney. We like going down to the old town square in McKinney…we love it there. We’re not far away from that and it’s really fun. We usually try to venture out when we do stuff.
How did you become integrated into your community?
Probably through our local Church group, most of all –The Parks, Melissa. In Keller we did the same thing. That’s where we met most of our friends. They have a local community group branch of the church that meets in our neighborhood. It’s where we’ve met a lot of people.
Anything else you would recommend to people who move to the Dallas region?
I would encourage families to explore. Dallas is so big. And every weekend there is always something new and fun going on. When my husband and I first moved here, that is what we did. We took an area and would say, ‘Oh, I’ve never been to Addison before, let’s go see what Addison has to offer’. Or, ‘I’ve never been to a certain part of Downtown Dallas’. We would just take a weekend and drive around and go explore.
Photo Credit: Kevin Marple