Amazing Grace: Redefining Limits and Finding Joy
Don’t limit what can be accomplished if you want it! This beautiful girl has Down syndrome, but that does not define her or put limits on her. Even though I did not teach her, I know her and her mother. When I asked her mom if I could interview her, she quickly said yes, and asked if we could use a picture of her daughter. I can see why she wanted to use a picture of her; this is better than any I could have found that captures her personality. Read this mom’s wise words and learn about new support groups you may not know about.
Q: What is one thing you wish teachers know about your child that is not on the IEP?
A: I wish they really understood how to respond to our daughter without reacting. The tone a teacher uses or their demeanor toward her will determine whether she shuts down or is cooperative. It’s so important to kindly talk with her and be compassionate about a situation and try to resolve and move forward. With our kids with Down syndrome, behavior is most often communication. There is usually a reason behind behaviors of stubbornness to do a task, for example, perhaps it’s not modified to their ability and they feel overwhelmed and don’t understand it, or they are feeling tired from working so hard in other classes, someone is being disruptive and they are distracted. Respond without reacting (negative frustrated tone, facial expressions) and ask questions to try and understand the why to the behavior and then address it.
Q: Scores on tests do not define the child. What is something your child is really good at that is not reflected on tests?
A: Our daughter is really good at reading people’s feelings and being empathetic towards them. If a friend is upset or having a bad day they will pick up on it immediately and will ask if they are ok. They are very intuitive and understand much more than you think they do, it’s just challenging for them to communicate these thoughts.
Q: How important is homework for your child? Is it just a burden, or is it a helpful learning tool?
A: Occasional homework is ok. Having homework every day is a burden. Our daughter works so hard at school all day, when she comes home from school she looks forward to unwinding from her day and playing, not sitting and focusing again, and doing more school work. We practice on the weekends, reading and math at our own leisure when our daughter is more willing instead of after a long day at school.
Q: How old was your child when you first knew he/she had special needs?
A: when she was born
Q: What is one piece of advice you have for someone who has a newly diagnosed child?
A: Love that child just as you would any other. Don’t be afraid of the unknown. Educate yourself and embrace this journey! Our kids are AMAZING and that extra chromosome is definitely a love chromosome! Your child will love you unconditionally and bring you so much joy and truly light up your life like you could never imagine! I tell everyone that our daughter is the gift that I never knew I really wanted!! Early intervention is of utmost importance! Research has shown that early intervention has a major effect on development and learning and greatly influences the degree to which a child reaches their full potential.
Q: What is one meal that everyone in your family likes to eat?
A: Tacos
Q: What advice do you have for interacting with children with special needs?
A: Talk to them and get information directly from them when possible instead of asking parents or teachers. Treat them as you would want to be treated. Be patient, and kind and include them in conversations and activities. Be encouraging and supportive. Look beyond a child’s disability and get to know them as a person. You might be surprised at the similar interests you share and how much fun you’ll have when you’re with them!
Q: What activities do you recommend to other parents to foster self-care?
A: Get together with parents who are on the same journey as you are! It’s comforting and so helpful to have their support and no one will relate like they can. You need to take time away to do something you like to do that makes you feel good and recharges you. It’s also so important for couples to take time away, by themselves to focus on their relationship, have fun together, and relax. It’s so easy to be very involved with your child/children and grow apart from one another.
Q: Are there any support groups that you recommend for parents or children?
A: Gigi’s Playhouse offers so much support for parents and children. The Down Syndrome Association of Northeast Ohio provides support, education, and advocacy for individuals with Down syndrome, their families, and communities. It’s absolutely wonderful. They host mom’s and dad’s night out events where us moms all get together at a restaurant and it’s so much fun. The dads meet all together as well.
Q: What are your favorite family activities?
A: We love swimming in our pool, camping, and going on long walks together. We also enjoy playing games. Our daughter Grace’s favorite game is UNO and she’s really good, winning often! 🙂