Parenting + Down Syndrome
Step into the shoes of two wonderful moms as they share their journey parenting a child and teen with Down Syndrome…
Julie Warren, a math teacher, is mother to a teen with Down Syndrome. Julie and I had the pleasure of working together at Mountain Brook Junior High. I love that Julie is always curious and desiring to learn how to be a better mom, advocate, and teacher…a willingness that not everyone possesses.
Anna Ruth McCalley is mother to a child with Down Syndrome. Anna Ruth has been in my life as long as I can remember and has played a crucial role in where I am today. It has been my joy to watch her parent all 3 of her kids with such joy and enthusiasm.
What are the challenges of parenting a child with Down Syndrome?
Julie: The challenges of parenting include finding the right doctors, getting into a groove with appointments and therapy, not resenting all the appointments and therapy, dealing with the sadness and disappointment of what he would never do, not letting him take precedence over our other children, not mistaking “helping” him for pushing him, accepting who he was, protecting our marriage from the stress, protecting our family from the stress, pushing him too hard, not letting it become our whole world, being grateful for him - seeing him as a gift.
Anna Ruth: Sometimes no different than parenting any other child but most often I find myself questioning if my expectations match her abilities. Any parent worries about their child being accepted and included in social circles and this seems to be an extra challenge/worry for me as she gets older.
What are the joys of parenting a child with Down Syndrome?
Julie: The joys of parenting my son are celebrating his milestones, not taking life so seriously, meeting new people and making connections we never would have with other parents of children with Down syndrome, watching our children grow up feeling comfortable around children with special needs, not taking typical development for granted, enjoying how they love and accept unconditionally
Anna Ruth: Every day is filled with unexpected joy. Frances finds joy and excitement in the smallest things. She frequently says “this was the best day ever.” She’s funny without ever trying to be. She truly loves like nothing I’ve ever seen before.
What are the most important things that you have learned in your parenting journey?
Julie: Being grateful and thankful for healthcare workers, for people who have devoted their lives to people with special needs - spending time with them. doing therapy with them, and becoming experts in our kids’ health issues. How to avoid letting one person in the family dominate no matter their needs. Not to blame myself that he was born with special needs - it was not my fault. We are not special because he was born to us - we are just like everyone else, trying to make our way, looking for a road map that does not exist. Protect your marriage from the stress of being a special needs parent.
Anna Ruth: Don’t compare your parenting or your child. It’s SO hard. It good to talk to other parents and get advice or relate to situations but you have to keep yourself in check. You have to learn that your decisions as a parent are best for your child and family, and not anyone else’s.
How do you find a good fit for doctors, dentists, therapists, etc. that understand your child and their disability?
Julie: We found a good fit by asking other parents for advice and joining DSA (Down Syndrome Alabama). We got to know parents of older kids with DS who had walked in our shoes who could direct us. Our executive director was a wealth of information. If she did not know the answer, she could point us in the right direction. Also, find a good pediatrician who has good connections and be willing to change doctors or therapists when it is obvious it is not a good fit (even if you are tired)
Anna Ruth: We have been incredibly fortunate to have a pediatrician who has been engrained in the Down syndrome community for ages. He always had good suggestions for dentists etc and they all happened to work our well for us. I think this is where talking to parents can be helpful BUT you have to remember that one parents bad experience with one doctor does not mean it may not be the best fit for you. I feel like I can tell pretty quickly when we go to a new person whether they are looking at my child as a whole child and not a generic kid with Down syndrome.
How do you effectively advocate for your child in IEP meetings and communicate with their IEP team appropriately?
Julie: Be well acquainted with your child’s needs and abilities. Set goals for your child that are realistic in the areas listed on the IEP - reading, language, math, speech, living skills, etc. Think about things that you want to happen at home as well - wearing glasses, social behaviors to improve, etc. Read the IEP before attending the meeting - make yourself very aware of what it says, if you agree, things you want to change, etc. Go over the IEP with another parent (I have a friend with a child about five years older who had walked this path before me and always had great suggestions) or someone well-acquainted with IEPs (psychiatrist, psychologist, special needs teacher in another system) who might notice things you have missed
Anna Ruth: For me I have to find a balance between trusting the school and teacher recommendations vs what I think is needed. Granted I know my child best; however, I’m not a teacher and I don’t always know what’s best in the education environment. That being said I feel establishing regular open lines of communication is essential from the start. I may not need to make every decision for her in school but I need to know exactly what’s happening- when and how etc. fortunately we are in a school where I 100% trust our iep team. They frequently ask for my input and are always willing to meet with me. It’s a two way street. The parent has to be proactive in order to be informed, you can’t just expect everything to go the way you want it, then be upset with the school when things are off, if you haven’t been making efforts to be involved. I wish we could send our kids to school and not ever have to worry about services being delivered the way they should be, but unfortunately that’s not the case in a lot of schools. Another note with regard to schools and our IEP team/teachers is how much I feel like they truly value my input on her plans. I know inclusion is great and I am definitely in favor of inclusive classrooms. However I also know my child learns best one on one and I’m not afraid of her being in that environment for optimal learning when it’s needed.
How is parenting a child with Down Syndrome different than parenting a child without Down Syndrome?
Julie: In parenting, the themes are the same but how you address them might be different - disciplining poor choices, correcting manners, showing them how to share. With Down Syndrome, there are often many more doctor appointments, lots of time attending therapy, and the milestones take longer to reach and the developmental stages last longer. It is also different in trying to make certain you don’t spend too much time focusing on your special needs child - don’t forget your other children so resentment does not develop. You have to be willing to accept your child and learn new things - our son was very oral and put everything in his mouth. This created a lot of stress, illness, and doctor appointments. We had to balance working with him on this and remaining calm. It is still an issue and he is 14.
Anna Ruth: Once again a lot of it for me goes back to wanting to make sure my expectations are realistic. There are things that make me sad sometimes, when I have a reality check of seeing how different Frances is than her peers from a social and academic standpoint. But at the same time I find joy in seeing her innocence. I worry about her being included with friends, made fun of, taken advantage of. Things with Frances are a LOT slower- just things like getting dressed and ready for school require a lot more time and patience. Especially when we are encouraging independence but that means taking a lot longer. Letting her have independence is scary too- it’s hard to let go of keeping her sheltered sometimes. We have found a good balance of activities- some with kids who have special needs and some where Frances is the only one. I feel comfortable when she’s with a group of other kids with special needs bc I know it’s a “safe” zone. But then I struggle sometimes with wanting her to step out and be challenged, which is where you just have to find your own comfort zone.
How do you stay present in the moment of parenting while also being proactive and planning for the future?
Julie: You stay present in the moment by accepting where they are now while gently pushing them to improve. And you save for their future - college programs for life skills they might attend, living in a group home or on their own, care costs for when you are gone. You also work on skills now that will help them in the future (how they interact socially, speech, toileting/showering on their own, reading road signs and menus, using the TV/phone, etc.)
Anna Ruth: Thank goodness my sweet husband keeps me in check. I tend to worry a lot about future plans. He is much better about slowing down and enjoying the small things. I am constantly encouraged by the offerings that are coming along for secondary and post secondary education. It gives me hope for even more options as Frances gets older. Our Down syndrome community here is so valuable for that too- we have a good group of older kids and young adults who are really paving the way.
What other advice, tips, wisdom, etc. do you feel would be helpful to share with parents of students with Down Syndrome?
Anna Ruth: Let you child be who they are. Accept that they have Down syndrome and embrace all the possibilities. I find a lot of beauty in the differences I see in Frances. Yes she’s a child and has many similarities to other kids but she’s unique and I think it’s so important to celebrate her differences rather than to conform to the norm. Planning for the future from a financial standpoint is something we were fortunate enough to be introduced to when Frances was only a few months old. We were put in touch with a financial advisor and attorney who helped us set up accounts etc so that Frances would be supported throughout her life. The laws and processes for trusts etc are very different and can be tricky. It’s highly valuable to have someone guide you through it!